HOPE-4crpsrsd

Spreading Awareness...

2011-10-30T14:52:00.000-07:00

It's all about spreading awareness right now and that is what I"m doing... I've been busy designing more items for CRPS/RSD awareness. You can find them on my website www.handcraftedawarenessjewelry.com

Show your support of CRPS/RSD. Together WE can All make a difference!
Blessings of Peace and HOPE,

my life as it is now...

2011-08-21T21:11:00.000-07:00

"I Won't Let My ABILITIES Be Dimmed

By My disAbilities."

I con't to get great pain control for both my CRPS and Fibromyalgia from the Ketamine IV I had. I feel quite blessed and am thankful for each moment that I can control my pain. I have been able to get off of my Fibromyalgia medication and reduce all the other meds that I take each day. That in itself is a real blessing.

I am enjoying my summer; doing things as I am able to and taking it ALL in. I'm accepting that their is HOPE in life with chronic pains and I know that the Lord is with me through it all. He has confirmed that to me more than once.

Friendship blessings being sent to you--
Peace and HOPE,

yes, it's been a while...

2011-07-31T20:06:00.000-07:00

I haven't posted much this year as I really didn't have too much positive to post and for me posting negative just brings me down more but I now have some positive to share. Approximately, 3 weeks ago I had my first Ketamine IV for pain control/relief. The first 2 days were rather bleak, strange, wondering what I had done and if things would change. I slept for the first 2 days and then... It took about a week to kick-in I'll have to say but as the days go on I find myself feeling freer and freer with lessened pains, more energy and sleeping less.

I'm awaking feeling refreshed and I"m eager to get my day going and rather than go to bed exhausted have to make myself hit the bed to sleep. I am happy, I am relieved and I am refreshed and renewed! I rejoice in my pain relief and am thankful my PM doctor suggested to me this treatment.

The IV itself was full of interesting effects and I know that they would have been worse had I not had my IPod blasting away!

May U each find your pain control and may we all help spread awareness in the avenues we choose!
Blessings,

Fabric Bangle Bracelet--Find The Cure

2011-07-24T21:47:00.000-07:00

Fabric Bangle Bracelet with Orange Ribbon and "Find The Cure".
Cost per bracelet is $3.50. This design I did not create but found it and fell in love with it. To order and to visit my website go to www.handcraftedawarenessjewelry.com

CRUISE FOR THE CURE

2011-06-12T17:37:00.000-07:00

I am honored to share with you what my dear friend Lisa Harper is doing with her life despite enduring this "Really Stupid Disease" in her words aka RSD/CRPS since 2007. She has become a Cruise Planner and started her own business this year plus is dedicated to helping fund research and promoting awareness for RSD/CRPS. Lisa is proud to promote this event and you can find out more about this amazing promotion through her website @ Covetedescapes

RSD\CRPS Awareness Promo

CRUISE FOR THE CURE

In honor of those who endure the fire of RSD/CRPS and their supportive families, Cruise Planners-Coveted Escapes is offering a cruise promotion. The donations listed will be given to the RSDSA (Reflex Sympathetic Dystrophy Syndrome Association) by Cruise Planners-Coveted Escapes for the purpose of funding more research for a cure and supporting their awareness efforts.

Make sure you let Lisa know that you heard of this event through this blog.

Fibro on my mind since it is May--

2011-05-15T12:49:00.000-07:00

Just wanted to share an article that my friend wrote on Fibro that was published in her local paper.
http://www.examiner.com/fibromyalgia-in-buffalo/living-with-fibromyalgia

Living with Fibromyalgia

May 13th, 2011 8:26 pm ET

Kristin Lathrop

Buffalo Fibromyalgia Examiner

Continue reading on Examiner.com: Living with Fibromyalgia - Buffalo Fibromyalgia | Examiner.com http://www.examiner.com/fibromyalgia-in-buffalo/living-with-fibromyalgia#ixzz1MS6qGld1

Health Special: Chronic Pain

2011-04-07T14:55:00.000-07:00

Health Special: Chronic Pain

Some hurts are forever. But now science is pushing back

Living with Pain

By Claire Suddath Friday, Mar. 11, 2011

Rock Benefit Concert

2010-12-04T17:27:00.000-08:00

Recently, I became aware of this woman's CRPS/RSD journey and the fund raiser that her family is doing for her so that she can have the Ketamine IV. Below find information on this benefit fund-raiser.

We are holding a benefit concert for my sister, Brittany Fields, on January 13, 2011 from 7:00-9:30 PM at the Kelsey Theatre, which is located on Mercer County College's Main Campus in West Windsor, NJ. My sister, Brittany, who is 33 years old, suffers from full body RSD, and she is completely bedridden. My family needs to raise $15,000 in order to pay for her to receive an intensive Ketamine Infusion, which is not covered by insurance. The concert will consist of original rock music written by my father and performed by a variety of artists. My father played with many famous artists including Jimi Hendrix, Paul Butterfield, and The Chamber's Brothers, and 100% of the proceeds from the concert will go to Brittany's medical treatments. We will also be bringing in guest speakers and providing more information about RSD in order to raise awareness. My family has also put together a website for my sister where tickets can be purchased via Paypal: www.helpbrittbeatrsd.org

My CRPS/RSD Awareness jewelry

2010-11-13T19:20:00.000-08:00

Despite living and dealing with CRPS/RSD on a daily basis, I've chosen to do something to help spread awareness. For the past year, I've been designing various CRPS/RSD and recently other awareness jewelry including my lapel pin. The minutes/hours I take in creating a design helps me take my mind off of the pains and the limitations that I endure. Below find a sampling of my work but please do check out my website where I have my designs posted. Have fun looking and if I can design something special for you; please take the time to ask. Here is the link to my complete line-- www.handcraftedawarenessjewelry.com

God bless you and may you find smiles in your day.

Patient With No Pain Gauge Could Help Chronic Pain Patients

2010-11-10T18:22:00.000-08:00

Patient With No Pain Gauge Could Help Chronic Pain Patients

Posted: Nov 10, 2010 8:26 AM PST

GAINESVILLE, FL - Just like your car or a bank vault, your body comes equipped with a high-end warning system. The trigger is pain and while it's a feeling no one wants, it's there to tell us something's wrong. What if that warning system was always on high alert or what if it never worked at all?
"She did not cry when she was born, the nurse even said, ‘oh what a good baby you have,'" said John Blocker, Ashlyn's father.
A good baby they said, one who grew into a precocious toddler with no fear.
"She would fall down or run into something and not even be phased by it," said John.
Soon the Blocker family realized baby Ashlyn wasn't just putting on a brave face. Their tough little girl was a little too tough.
"She was in her high chair and she literally put her pointer finger in her mouth and just ripped the skin right off. She wasn't upset. She wasn't crying," said Tara Blocker, Ashlyn's mother.
That accident led to another.
"There was just blood everywhere, she had mutilated her bottom lip to no avail," said Tara. "Just chewing it while she was asleep."
"She had touched her hand on a hot pressure washer motor and she burned the palm of her hand and all the tips of her fingers," said Tara.
Doctors finally realized Ashlyn was her own worst enemy, literally, she simply can't feel pain.
"I was not looking where I was going and then I crashed and then my ankle got broken, I just kept on going," said Ashlyn.
It's called congenital insensitivity to pain. A pair of genetic mutations short-circuited the pain signals that go to Ashlyn's brain. She's just one of 20 documented cases in the U.S. Only 40 exist in the entire world.
"My mom just tells me I'm very, very special," said Ashlyn.
"We can really learn from individuals like this child, what it really means to be at the opposite end of feeling essentially no pain," said Roland Staud, M.D., a Professor of Medicine at the University of Florida.
Ashlyn is helping researchers study pain like never before. They want to know if there's a master switch for pain and how to turn it on and off. Does a lack of pain impact emotions, and can that person still show compassion towards others? But most importantly, this little girl may hold the key for the nation's 70 million chronic pain patients.
"If they could just have one molecule like Ashlyn has, they would have the perfect pain killer, and I'm thinking that's pretty wow," said Tara.
That pain killer may save someone like Robert Hinton.
"The extreme pain I get is like someone just dousing my body with gasoline and just constantly lighting a match. There are days where my spinal cord feels like someone's pulling it out of my body with tweezers," said chornic pain patient Robert.
A car crash led to a nerve injury which led to the diagnosis of reflex sympathetic dystrophy. That's a chronic neurological syndrome that causes constant burning in the hands and legs.
"I swallowed 35 pills in one night and I said a prayer, I said ‘God I want to go to heaven because I can't take this pain anymore,'" said Robert.
Robert survived that and survives now by mostly grinning-and-bearing it, as treatment is limited. He does get powerful infusions of pain meds but those put him into a coma for days. Doctors said after this kind of pain has been present for six months, it becomes irreversible. Patients may also suffer muscle atrophy, loss of mobility and contorted limbs.
"I've gone through having more than 100 epidurals and nerve blocks just to get the pain where it's tolerable," said Robert.
A man whose pain won't stop and a girl who can't even begin to feel pain at all.
"We want Ashlyn to have the best life possible and we're going to do everything under our power to ensure that. We're blessed to have her, there's a reason for her," said Tara.
Doctors have identified Ashlyn's gene mutation and may be able to tweak it using a form of gene therapy, but it's unclear if they would be able to create the right balance. Ashlyn's parents said they would never put her through the process.
RESEARCH SUMMARY:
ALL PAIN . . . NO GAIN: Bonica's Management of Pain, 3rd Edition states that, "chronic pain has several different meanings in medicine." It continues by adding that the distinction between acute and chronic pain traditionally has relied upon an arbitrary interval of time from onset; the two most commonly used markers being 3 months and 6 months since the initiation of pain, though some theorists and researchers have placed the transition from acute to chronic pain at 12 months. According to Pain Management: A Disciplinary Approach, others apply acute to pain that lasts less than 30 days, chronic to pain of more than six months duration, and subacute to pain that lasts from one to six months. A popular alternative definition of chronic pain, involving no arbitrarily fixed durations is "pain that extends beyond the expected period of healing."
STICKS AND STONES MAY BREAK MY BONES, BUT I DON'T FEEL A THING: When most of us are hurt, the body sounds an alarm . . . but that feeling is foreign to Ashlyn, Blocker who suffers from what's called congenital insensitivity to pain with anhidrosis, also known as CIPA, a rare genetic disorder affecting the nerve endings. She has no sense of extreme temperatures, and she can't feel pain -- though she can feel some non-painful sensations. At least 100 people worldwide are known to have CIPA and repeatedly suffer severe injuries, burns, cuts and fractures. Family photos of Ashlyn reveal a swollen lip occurring after she mistakenly bit it, and a burned hand stemming from an appliance she did not know was extremely hot. On several occasions she's also knocked out teeth, which in the long run may have been a kind of blessing in disguise.
AN AVERAGE DAY FOR A NOT SO AVERAGE GIRL: At school, precautions are in place to keep Ashlyn injury free. Since the same condition makes her unable to sense outside temperature, she can't sweat. Therefore, there's always a cold bottle of water nearby. After recess, Ashlyn reports to the nurse's office, where ABC News reported they found the nurse looking for sand in her eyes. Her body got inspected from head to toe, and rid of residual sand that could have caused painful abrasions she wouldn't feel. In a handful of cases, CIPA has proven fatal, because those afflicted are unable to feel symptoms of fever or life-threatening infections like appendicitis. However, every case is different. So for Ashlyn, sadly, there's no telling what the future holds.
FOR MORE INFORMATION, CONTACT:University of Florida Department of Medicine
Gainesville, FL
Phone : 352-392-3261

November is CRPS/RSD Awareness Month

2010-10-31T19:35:00.000-07:00

For me, living this life of the chronic nerve pains of CRPS/RSD has taken on a different approach. I refuse to give in to this disease/syndrome whatever you chose to call IT as I didn't find IT; IT found me! Instead I live my life filled with HOPE and try my best to put the pains in the background. The Pain is NOT who I am nor Will IT ever be! I am a Christian; I am a woman, I am a wife; I am a daughter; I am a friend; I am an advocate for CRPS/RSD and lastly I am a patient! To help promote awareness for CRPS/RSD I have chosen to use my ABILITIES in a way that will touch many and that is in creating awareness jewelry, key chains, lapel pins and other type of jewelry. I design as I am able to and put my all in my creations. This helps me mentally to unwind my body soul and spirit. I am able to be fulfilled by the joys I give others and I am able to do something that I LOVE.

During the month of November I will give a 10% discount on my CRPS/RSD jewelry and key chains that I have shown on my site excluding the lapel pin. I will also con't to give volume discounts on my lapel pins. So check out my jewelry website Handcrafted Awareness Jewelry

Here is a small sampling of my designs...

May you find blessings, joys and smiles in the life you live and remember....

U are NOT crps/rsd; U are a person first and foremost.

I may have CRPS but IT doesn't have ME!

Can You Still Be Friends If They Think You Are Faking Your Illness?

2010-09-12T11:31:00.000-07:00

I just thought this was appropriate to share as this begins Invisible Illness Week through www.invisibleillnessweek.com.

Can You Still Be Friends If They Think You Are Faking Your Illness?

September 9, 2010 by admin

by Lisa Copen
If you have an invisible chronic illness you may discover that the invisibility factor of the illness can be much more of a challenge than the physical changes your body is undergoing. Most people who are diagnosed with an illness sooner or later accept the illness as being a part of life. In order to have a life filled with joy, one must educate one’s self on the illness and that treatment options available, and then make choices.
But we have no control over our loved ones when they choose not to accept our illness, or sometimes even acknowledge it. Their skepticism can last a lifetime and damage our self-worth and many relationships.
So, what you do when someone important in your life refuses to acknowledge the seriousness of your disease, or accept that the disease even exists? Here are four steps to change your actions and attitudes:
1. Go with it. Though the seriousness of your illness is significant under your roof, it isn’t that important to others. And there’s no magical conversation you can have with the person that will make him change his mind. The most likely way your friend will accept that your illness is real, is by observing you. For example, your invisible illness may begin to have some visible side effects. When he sees you struggle to get up out of a chair, don’t comment; just let him take it all in.
2. Grow with it. This situation can be a perfect time to reflect on your own perceptions of people. Have you ever stood in line at the bank and thought yourself, “No one here understands how difficult it is to just stand in this slow line!” But nearly 1 in two people in the USA have a chronic illness, so the chances are high that someone standing beside you does understand. Remember that 96% of illnesses are invisible, so watch your assumptions. What situations are your friends going through that you don’t fully grasp? The affair of a spouse, a baby born with a disability, and the loss of a job, are all experiences that can alter one’s life in an instant. Chances are that your friends can use your support and even empathy.
3. Get over it. It is easy to obsess over the fact that no one understands what your daily chronic pain is like. Save yourself a lot of grief and don’t do it. We would all like a loved one to be able to slip inside are skin for twenty-four hours, but this level of understanding of our disease will never occur. If you began to resent people who don’t understand, soon all your friendships will be tainted. Do not take a friend’s lack of empathy personally, even though it feels personal. You cannot change someone’s mind; you can only control your own behavior, so make certain you have conversations that you won’t regret.
4. Get on with it. Life is precious and short and no material things in your life can replace friends and family. It is true that the intimacy level in your relationship will not ever be high if your illness is not at least believed to exist. But if you still want a relationship, and it’s a healthy one in other ways, it can happen.
The odds are, at some point in your friend’s life, a health issue will occur and suddenly he will have a glimpse into what your life is like. Allow him to feel comfortable coming to you for support and encouragement and don’t use the opportunity to say, “I told you so.”
Go with it. Grow with it. Get over it. Get on with it.
Is it possible to have relationships with people who don’t understand the seriousness of your illness? Yes. Accept him for what he is able to give, and know when to back off if the relationship becomes destructive to your emotional state. Have reasonable expectations. In time, this may end up being one of your closest friendships.

Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? Chronic illness doesn’t have to be depressing! Subscribe to receive daily emailed encouragement from the largest Christian outreach for people with illness. Don’t miss Rest Ministries great books and gifts we’ve selected for people coping with illness.

September Is Rapidly Approaching! Uniting Our Voices, Conquering Pain Together!

2010-08-19T14:54:00.000-07:00

September Is Rapidly Approaching! Uniting Our Voices, Conquering Pain Together!
September Pain Awareness Month is an opportunity for organizations and individuals across the nation to join together to have their voices heard and bring positive change to the management of pain. This September the American Pain Foundation needs YOU to add your voice to the Virtual March on Washington and the 10,000 Voices Campaign. This online gathering will offer many ways to get involved, communicate with your legislators and have your voice heard. You can sign up for the Virtual March NOW and spread the word! The 10,000 Voices Campaign provides an opportunity to illustrate the magnitude of improper pain management and its impact on people’s lives.

Puzzle Pieces

2010-08-06T21:25:00.000-07:00

Ever think of life as being one huge puzzle and each day you add a piece or two to complete your puzzle. Well with CRPS I find myself adding puzzle piece upon puzzle piece sometimes just to make it through the day and other times just for fun. I know that I'll awaken to a fresh new day. Sometimes, that day nay be one that I'd rather not journey through and other days I'm quite the "happy camper" and wanting to share it ALL. Of all the things in life that I'd thought I'd encounter-- it wouldn't have been telling you that I"m living, dealing and conquering the pains of CRPS daily which include burning, searing, exploding, tearing, stretching, pinching, stabbing, ripping, constant, "fire-poker" like, stinging and probably more if I really think hard but you get the point.

As my puzzle grows larger I'm thinking that the so called coffee tables for puzzles just might have to be built a tad larger to accommodate a larger size puzzle.

So as you build your puzzle of life; never forget that everyone is struggling with something in their life and never judge someone by how they react, respond and/or express themself.

Feel your blessings of life, grab them and run for your life...

hUgz,

Thankful

2010-07-31T20:04:00.000-07:00

I'm finding myself getting stronger as the "spastic colon" pains have left through the special diet and medication that I was on. I am now adding to my diet every 5 days either a new raw fruit or veggie and if I have no problem with that I'm free to con't to eat it. Many prayers have been answered and I'm seen smiling once again.

hUgz,

health in question

2010-06-24T18:57:00.000-07:00

The delays in my blogging have been due to the fact that since April I've been enduring some additional medical issues and having different tests done to rule things out. One thing I do know is that I've been enduring pains from a spastic colon all due to STRESS! Yes, that is one big word that many of us deal with especially when living and dealing with chronic pains. Tomorrow I go and have 2 additional tests with at least one biopsy being done for sure.

So that is the reason that I've been in the "quiet zone" lately.

hUgz,

new diagnosis

2010-03-28T15:36:00.000-07:00

As a typical person living with chronic pains; once you develop one syndrome you tend to develop others along the way. Recently it was confirmed that I live with Fibromyalgia as well. This is something I've thought for a long while but decided to ask my pain management doctor for his opinion. He told me that he thought this the first visit I had with him. This is another thing I so like about this man; he waits until I bring things up to him before he adds to the mix.

He gave me samples of the typical medication that is used for Fibro these days and I have responded quite well with it so he gave me a discount card to use with each RX. After a week of waiting for authorization from my insurance company to approve; I've been given approval for this medication.

hUgz,

Lidocaine IV

2010-03-11T09:50:00.001-08:00

Tuesday I had another Lidocaine IV that helps me so much with my CRPS/RSD pain levels. This go round it really kicked my butt and well today I'm feeling a little fresher mentally and a little stronger. The positive thing in all of this is that-- My pain levels have dropped!

That appointment I also discussed Fibromyalgia with my doctor as I've been wondering if I might have developed this syndrome as well. His answer to me was that he suspected I had it from my very first appointment. He told me that this IV will help with that as well and we are going to start on a different medication that is especially for Fibromyalgia. My doctor said that it is not surprising that I've developed this pain syndrome as well as my nervous system is so messed up that it is unable to process pain syndromes appropriately.

Occasionally I'll post some articles and/or things that are helping me deal with Fibro as well as this is a part of my life now as well.

God is in control of my life and so I give it ALL to Him. He will carry me through and give me the coping mechanisms just as he has with CRPS/RSD.

hUgz

I couldn't have said it BETTER~~

2010-02-23T09:26:00.000-08:00

I have been having a hard time lately and when I read this devotional-- it was a WOW moment for me. I realized that the Lord highlighted this specific devotion to me this morning as I was clearing my in box and re-reading emails. PTL for the little things He shows us throughout our days if we are just looking and listening.
hUgz,

RM Devotional

When Life Shakes Us Up

Posted: 16 Feb 2010 03:00 AM PST

“Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed,” says the Lord who has compassion on you. (Isaiah 54:10 NIV)

Just lately, my life has been somewhat overwhelming to me. It felt like there was just so much on my mind and so many things I “should” be doing, but I didn’t seem to be able to do much, or cope with the fact that I couldn’t.

While I still believe strongly that God is in control of my life, its felt like I was losing control and everything was going to pieces around me.

Maybe it’s the time of the year, maybe I’m just tired and in a rut right now, the reason doesn’t really matter.

The promises in this verse in Isaiah hit me this week as a great reminder that when life shakes me up, or it seems that my world has become shaky – God has promised the following:

- that His unfailing love will never be shaken – He never stops loving me;
- His peace will always be offered to me – when life seems anything but peaceful; and
- in His compassion, He continues to care about what life is for me.

On many days in this journey of chronic illness, it can seem that life is shaky. The uncertainty of how we will feel each day, or how we may deteriorate over time, makes it hard to feel secure – but God’s promises for our lives are something we can always hang on to, and I’m so grateful for that.

Prayer: Father, I thank you that when life shakes me up, you are still there and promise always to be there. Help me to always hang on to that promise. Amen

About the Author:
Fiona Burrows lives in Melbourne, Australia. She is learning to be grateful for the lessons God is teaching her on her journey of chronic pain. When she can, she loves to find time for writing, reading, travel and photography.

WarmMe® Warm Mouse The Original Heated Computer Mouse

2010-02-04T18:42:00.000-08:00

Cold Office? You Need a Warm Mouse!
cold office

* Ergonomic USB Optical Scrolling Mouse
* Energy Efficient - 5V
* Accurate 800dpi
* 3 - Buttons, 4 - functions
* Heated to 104°F (Infrared)
Infrared ray energy is a part of the natural light spectrum of sunlight minus the skin damaging UV, which is why NASA spacecraft have utilized this heat. In Asia and Europe it has already revolutionized health and beauty products.
: Natural antibacterial
* Convenient On/Off Switch
On/Off Switch Warm Mouse On/Off Switch
on cord
* Works with any PC, MAC or Notebook
* No additional software/hardware necessary

Recommended for:
Warm Mouse

* Carpal Tunnel Syndrome
* Raynaud’s
* Arthritis
* Poor Circulation
* Tendonitis
* CRPS
* DeQuervains
* Repetitive Strain Injury

A sensible solution to a common problem

WarmMe® WARM MOUSE is an ergonomic computer mouse. This heated mouse (infrared mouse), is an optical mouse, requiring no mouse pad. Once you’ve used a heated mouse, you’ll never be without a warm computer mouse again. It’s a USB hot mouse…what are you waiting for – Just plug it in!
http://www.warmmouse.com/

How My Illness Brought Me Grace, By Cynthia Toussaint

2010-01-07T20:45:00.000-08:00

How My Illness Brought Me Grace

Cynthia Toussaint, Founder, For Grace

By Cynthia Toussaint

I lead a life of contradiction.

I’ve experienced horrific pain, a non-caring medical system, and total loss of the career I felt I was born for. Yet I feel completely blessed.

Twenty-seven years ago, I was a 21-year-old ballerina with a bright future. Then a minor ballet injury in my right leg triggered the chronic pain disease, Complex Regional Pain Syndrome, too often called “The Suicide Disease.”

For the first thirteen years of illness, my doctors told me my physical problems were all in my head. That abuse left me bedridden for a decade and unable to speak for five years while the CRPS spread throughout my body and ravaged my vocal cords. After my disease was diagnosed in 1995 (later I developed fibromyalgia as an over-lapping condition), I enjoyed significant improvement and moved into a wheelchair.

But my anger with my predominantly male physicians gave me the gut feeling I’d been dismissed because I was a woman. I wasn’t alone. Studies show women are more prone to chronic pain diseases and feel pain more intensely than men, all the while receiving far less care. We get sedatives and psychiatric referrals, while men tend to receive serious diagnosis, painkillers and aggressive treatment. Simply put, women hurt more and are helped less.

So I founded the nonprofit, For Grace, to ensure ethical and equal treatment of all women in pain. Our goal is to empower women to become better advocates for their pain care and to declare war on gender bias and the ever-convenient “it’s all in your head.”

Helping women heal and make positive choices has brought a miracle into my life – a physical remission and emotional healing beyond anything I could have imagined. All of this has been triggered by the wisdom I’ve gained from my challenging journey. Bottom line: I attribute my healing to a newfound ability to listen deeply to myself.

Here’s how I nurtured and listened to my own voice:

I began by removing toxic people from my life, even those I loved intensely. This, at first, brought great emotional pain, compounding my physical illness. But I kept going.
Next, I fired my Western doctor who urged invasive therapies I knew were wrong for me. I followed my instincts, the key to my healing, and switched to Integrative Medicine. This gentler approach allows me to partner with my physician and take responsibility for my pain care.

Perhaps most importantly, I began writing my memoir. This helped strengthen my voice and "exorcize" my pain, sorrow and anger, freeing my body's natural healing powers. I strongly recommend daily journaling for women in pain, as it opens the door to their creativity and power to heal. I am a firm believer in the curative benefits of the creative arts – dance, music, art, theater and narrative expression.

After being unable to exercise for nineteen years, I now swim a mile three times a week. I’m singing and playing the piano again. I’m even walking through ballet pas de deuxs for the first time in 30 years! I suspect this is just the beginning.

I embrace my “tragedy” as a great gift; it has taught me to listen to myself. My values have deepened and evolved, forging a wiser and more empathic human being. I know how precious each moment is and on a daily basis, I experience the great reward of helping people. I wouldn’t go back for anything.

Cynthia Toussaint is the founder and spokesperson of For Grace. Toussaint championed and gave key testimony at two California Senate hearings – one was dedicated to CRPS awareness, the second explored the chronic under-treatment of and gender bias toward women in pain. She will spearhead a third hearing in Spring 2010 that will explore the barriers to care that women in pain face. Toussaint is the author of the upcoming memoir, Battle for Grace, slated for release in early 2010. Learn more at www.forgrace.org.

the bamboo and the fern story

2010-01-01T10:12:00.000-08:00

This was sent to me by my wonderful friend and it made me think of our Lord and what he is doing with our lives even though we are constantly in pain and have no energy-- He does have a a plan and it makes it even more important for us to listen to those little inner voices. May this touch you as it has touched me.

One day I decided to quit...
I quit my job, my relationship, my spirituality...in fact I wanted to quit my life. I went to the woods to have one last talk with God.

"God", I asked, "Can you give me one good reason not to quit?"

His answer surprised me...

"Look around", He said. "Do you see the fern and the bamboo?"

"Yes", I replied.

"When I planted the fern and the bamboo seeds, I took very good care of them.

I gave them light.

I gave them water.

The fern quickly grew from the earth.
Its brilliant green covered the floor.

Yet nothing came from the bamboo seed.
But I did not quit on the bamboo.

In the second year the Fern grew more vibrant and plentiful.

And again, nothing came from the bamboo seed..
But I did not quit on the bamboo. He said.

"In year three there was still nothing from the bamboo seed.
But I would not quit.

In year four, again, there was nothing from the bamboo seed.
I would not quit." He said.

"Then in the fifth year a tiny sprout emerged from the earth. Compared to the fern it was seemingly small and insignificant. ...

But just 6 months later the bamboo rose to over 100 feet tall.
It had spent the five years growing roots.

Those roots made it strong and gave
it what it needed to survive.

I would not give any of my creations a challenge it could not handle."

He asked me. "Did you know, my child, that all this time you have been struggling,
you have actually been growing roots".

"I would not quit on the bamboo.

I will never quit on you."

"Don't compare yourself to others."

He said..
"The bamboo had a different Purpose than the fern.

Yet they both make the forest beautiful."

"Your time will come", God said to me.

"You will rise high"

"How high should I rise?"

I asked.

"How high will the bamboo rise?" He asked in return.

"As high as it can?" I questioned.

"Yes." He said, "Give me glory by rising as high as you can."

I left the forest and brought back this story.

~~author unknown

Yes, There IS a Santa Clause!

2009-12-10T09:18:00.000-08:00

Yes, There IS a Santa Clause!

December 7, 2009 by Rest Ministries
Filed under Articles, Books, Holidays, Joy, Links, Parent of Ill or Disabled Child, Person w/ Illness, Support Group Leader, What's New?

In 2004 I had the honor of interviewing Ed Butchart about his outreach and ministry as “Santa.” Sadly, his wife went to be with the Lord soon after (see a lovely tribute to her.) He has since had his second book published (the first one, The Red Suit Diaries is a gem!) and has a brand new web site with photos, his schedule, and much more. I encourage you to visit his site and learn more about this amazing man, fondly called “Santa” by many. Lisa Copen

. . . . . . . . . . . . . . . . . . . . . .

Yes, there is a Santa Claus. Storybooks say that he and Mrs. Claus live somewhere in the North Pole, but a rumor has spread that they actually live in a little town outside of Atlanta, Georgia and they go by the off-season name of Ed and Anna Butchart. Known around the world as “Wheelchair Santa” Ed gives more than just simple promises of dolls and trucks; he and his wife give the love of the Lord to both adults and kids that live with physical disabilities. He may not have typical reindeer, but He doesn’t need them. “It’s been an amazing ride,” says, Ed. “God is so good.”

Ed’s book, Red Suit Diaries, is a heart-warming (and sometimes bittersweet) tale of how God put him on this path. He’s had an interesting career path that would have left any man running for the North Pole wondering what God’s plan was: A twenty year career in the Marines, a salesman job of medical diagnostic products, and then an ordained pastor.

It was in Vietnam as a Marine he repaired his first wheelchair for a 12-year-old girl who had lost her legs from a land-mine explosion, but he didn’t realize the calling God had in store for him. Back home in Georgia, he met a man at church who had cerebral palsy. Ed admits, “I was quite put off by him and didn’t know what to say to him so I didn’t say anything for a couple of years and then one day I said, ‘hello’ and to my astonishment he answered me, ‘hello!’”

Soon Ed was coming by this man’s home to visit, and the man asked him to help change a light bulb. “An amazing feeling swept over me because it was the first time I had ever done anything for somebody who could not do it for themselves. So I began to do other odd jobs for him and for other people in that same complex who were all disabled.” They asked Ed to lead a Bible study and with support from Mt. Carmel Christian Church, Ed took the plunge and went into ministry full-time, even going back to college to get a degree in theology.

“We didn’t really know what exactly we wanted to do,” says Ed, “but five days later somebody gave me a wheelchair. Well—they told me ‘one is by the dumpster at the parking complex.’ So I went and got it. Then somebody gave me another one and another one and I started working on them in the garage. My wife said, ‘Well, what are we going to do with five wheelchairs?’ and I said, ‘I don’t know. I’ll fix them up and give them away!’ So we fixed those up and gave them away. And then there were more and more. Now we’ve given away almost 12,000 wheelchairs, one at a time.”

Friends of Disabled Adults and Children (FODAC) is now a multimillion-dollar charity that repairs wheelchairs, van lifts, hospital beds and other equipment for the disabled, a mission ministry of Mt. Carmel Christian Church, giving away medical equipment to 36 states and 62 countries, including a recent load to Iraq.

The ministry now resides in a 65,000 square foot building in Stone Mountain, Georgia. “We have seen God’s hand in everything we’ve done. God has done many miracles to keep our finances afloat and the medical supplies coming in,” says Ed. In fact, he’s written another book about the miracles that have occurred within this ministry, hopefully due out in 2005.

Ed was Santa for his church when he decided to grow a real beard and become a “professional Santa.” “It fits in with what we’re doing here because I am the Santa that gives away wheelchairs,” says Ed. . . er, Santa. “I get letters here addressed to ‘Wheelchair Santa.’ When you give things away, that makes you Santa Claus, whether you’ve got a beard and a red suit or not.”

People all over Georgia call him Santa, but he’s right—it’s not because of any red suit. “People come up to me all the time and say things like, ‘You gave my mom a wheelchair and I want to thank you. It made her life so much better for the two years she lived.’ People who don’t have an opportunity to hear that are depriving themselves of an incredible blessing. We always tell people that they don’t need to thank us, but to say their prayers tonight, and thank the Lord, because He’s the one who put this thing together. He is the one who inspired someone to donate it to us so we could give it to you. That’s all we’re doing.”

“We had no idea when we started what we were getting into or that the need was so great,” says Ed. “There are so many people out there who cannot afford a wheelchair or a walker, or anything. Their whole lives are limited by the fact that they can’t afford the equipment so they can live a full life. Once we discovered how many people were out there, the task just became completely overwhelming. No way could we do this by ourselves, but the Lord kept providing a way! And that’s what we learned: When you are in God’s will for your life, He is going to provide and take care of you so you can get things done.”

Their building is the home to a thrift shop, repair rooms and even a small “Santa room” filled with donated toys. Disabled children and siblings who visit can take home as many toys as they want, Most gasp when they see the room, but they usually only take one.

“I worked jobs all my life that paid me big money to do it,” says Ed. “But I never found out how valuable I was until I gave myself away and people began to tell me about the impact of what we had given them had had on their life. Then I began to understand how favored my life was. And it just floored me. It just completely overwhelmed me.” Butchart told Caroline Mack of EnabledOnline.com.

“Dreams and desires are every bit as real for those who do live with a disability. They are people just like everyone else, wanting the same things—someone to love them and accept them as they are.” “We don’t apologize for being a Christian organization,” says Ed. “We tell them where it came from, we give them the stuff, we don’t ask any questions. We give them our little message and they go away with it and what they do with it. . . I don’t know. . .”

But sometimes he does know. A mother of a young girl recently approached Ed and said that last year her daughter had sat on his lap and he had told her about the best gift this world had ever received—Jesus Christ. This little girl went home so excited that Santa loved Jesus! Christmas morning she said she would just “pray to Jesus to tell Santa thanks for the toys because Jesus and Santa are good friends.” She soon accepted Christ into her life and was later baptized, because “I know it’s the right thing to do because Santa did it.”

But this humble Santa accepts little credit, “I am faithful to the task that God has called me to do. But you think I didn’t cry when her mother told me that? I just sat there and lost it! I couldn’t even get up out of my rocking chair.” Yes, my friends, there is a Santa Claus.

Reprinted from HopeKeepers Magazine, 2004

Life with CRPS/RSD con't ~~ it was time..

2009-11-14T08:58:00.001-08:00

I had my 3rd Lidocaine/anti-inflammatory IV with a bolus of anti-inflammatory on Thursday which has brought my pain levels down to a tolerable level as far as the burning goes. The muscles con't to be tight but so much better since the IV. These last me about 5-6 months and then it is time again for another treatment. Since finding this new doctor a year ago I've gotten the best care for my CRPS/RSD since the podiatrist-- CRPS/RSD specialist I first saw.

I am quite blessed to be able to get this type of decrease pain levels and am so happy that the Lord showed me this doctor's profile in our local magazine a little over a year ago.

the pain

2009-11-10T20:17:00.000-08:00

My pain levels are elevated to such a degree that my meds aren't even touching it a bit right now. The weather changes don't help and the changes in the barometer even hurts. So I've decided that it is once again time to get my Lidocaine IV treatment so that my pain levels can decrease so that I can carry on with my life. Right now I"m hurting so much that I have no energy to get other things done. I'm dragging and awaking not even feeling as though I've slept. So thought this a great time to share with the McGill Pain Scale with you.

YouTube-- Fightingrsd Silent

2009-11-08T09:44:00.000-08:00

This video portrays very well what life is like for me. So check it out...

Life with CRPS/RSD con't...

2009-11-03T19:35:00.000-08:00

Imagine for a moment~~

an icy cold frozen drink that you suck down and get a brain freeze; well that icy cold feeling/sensation is what I deal with in my ankle/foot and it oftens stays for hours and even many layers of socks and an electric blanket won't take away that coldness or intense pain due to the icy cold feeling.

Come back and con't to read about CRPS/RSD and how it affects our bodies.

hUgz,

Life with CRPS/RSD...

2009-11-02T21:17:00.000-08:00

So you ask...

What does it feel like to have CRPS/RSD?

My answer to you is--
Imagine for a moment that you have a fire-poker being pushed and poked into your skin and turning as it goes in.
Imagine for a moment the relentless pain of fire on your skin and the inability of putting out the fire.

If you can imagine this, then you have a little taste of what it's like living and dealing with the chronic pains of CRPS/RSD.

stay tuned... more to come as this is CRPS/RSD awareness month and I'm here to spread the word

"Mirror Therapy for My Foot"

2009-11-01T09:17:00.000-08:00

My friend Jeisea is the one who did this informative video on "mirror therapy". She has had great benefits from doing this type of therapy.

almost here--CRPS/RSD Awareness Month

2009-10-30T18:52:00.000-07:00

Well November is right around the corner which means CRPS/RSD awareness month is just a couple days away as well. What does this mean... well it is a time where we hope that those that know nothing about our disease will learn more about what we live with on a daily basis. By learning, they will ask us questions and we can share with them too.

Also, it means that I'll be making my jewelry to help spread awareness. Check out my website handcraftedawarenessjewelry to see the full line of my designs and to place your order.

So look around-- learn, explore and please do ask questions!

hUgz,

Purpose While Afflicted

2009-10-25T16:22:00.001-07:00

I found this particular devotion so true of my life. I am rewarded over and over when I allow the Lord to direct my days. HOPing it touches you and allows you to start thinking in another direction for your life.

Purpose While Afflicted

: Image via Wikipedia

“For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all” (II Corinthians 4:17).

There have been times when I have believed the truth of this verse shortly after going through a trial. But for the most part, I have needed faith to believe in and wait for that eternal reward.

As someone living with chronic pain and illness, it is very easy for me to become self focused. Daily thoughts can revolve around my discomfort level, what medicines to take, or limitations on my activities. My troubles do not seem light and momentary. In my relationship with God and what He is doing in my life, I see only my “square of the chessboard” – how my circumstances are affecting me now. I want God to be “all about me”. He is, but He is all about others as well.

If we allow God to do so, He may begin showing us how our pain and suffering can impact others for tremendous good. In the midst of our own struggles, whether we send an encouraging note, pray for someone we know who is struggling, or brighten someone’s day via phone or e-mail, we are all part of God’s bigger picture to touch the lives of others. Perhaps our pain is developing a stronger prayer life in someone we know, or allowing them to be a giver rather than a receiver. Handling even one aspect of our suffering well may be a testimony and example to those around us, affecting their lives in a way no healthy life ever could.

When I become too focused on my pain and trials, I want to pray for a heart of thankfulness for all that they may be accomplishing in my life and in the lives of others – now and in eternity. God give me the grace to do it.

Prayer: Lord, give me the strength to stand firm in the faith, knowing that after I have suffered a little while, you will restore me, making me strong, firm, and steadfast (I Peter 5:9,10). May I be willing to endure my trials for your eternal purposes. Amen.

ABOUT THE AUTHOR
Bronlynn Spindler is a wife and mother of three grown daughters and lives in Fredericksburg, VA. God’s grace and strength give her the ability to deal with chronic back pain, depression, headaches, and fibromyalgia. You may contact her at spindler@cox.net.

RSDSA Launches Major Study on the Natural History and Long-Term Health Effects of CRPS

2009-10-23T20:14:00.000-07:00

Please if you have CRPS/RSD won't you participate in this research project?

RSDSA Launches Major Study on the Natural History and Long-Term Health Effects of CRPS

The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) launched an Internet-based study entitled Long-Term Health Effects of CRPS: A 20 year Cross-sectional and Longitudinal, Observational Cohort Study, funded by a grant from the Brodsky Family Foundation. The study design is patterned after the registry database conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS) Project, which has 34,000 participants. A previous Internet-based survey studied 1,300 people with CRPS, of whom about 1,000 participated in a follow-up questionnaire. RSDSA hopes that the new study will attract many more participants who will share their experience with CRPS for the benefit of all.

Anyone with the diagnosis of CRPS Types I and II can participate via a link on RSDSA's website, www.rsds.org or from the study website (www.crpssurvey.org). Potential participants, who are not familiar or comfortable with Internet-based communication, can contact the study's Project Manager to obtain paper forms for registration, consent and enrollment. Participation is voluntary and anyone can withdraw from the study whenever they wish. Each year, the participants will be asked to answer questions about their health and health-care utilization, treatment, and how CRPS is affecting their health and wellness. Participants do not need to submit medical records to register for the study, but we may request medical records to confirm information in the database. All questionnaires and records are confidential and securely held according to HIPAA and WIRB provisions.

http://www.rsds.org/3/research/RSDSAStudy_1019_197.html

RSDSA Launches Major Study on the Natural History and Long-Term Health Effects of CRPS

2009-10-19T20:32:00.000-07:00

RSDSA Launches Major Study on the Natural History and Long-Term Health Effects of CRPS

The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) launched an Internet-based study entitled Long-Term Health Effects of CRPS: A 20 year Cross-sectional and Longitudinal, Observational Cohort Study, funded by a grant from the Brodsky Family Foundation. The study design is patterned after the registry database conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS) Project, which has 34,000 participants. A previous Internet-based survey studied 1,300 people with CRPS, of whom about 1,000 participated in a follow-up questionnaire. RSDSA hopes that the new study will attract many more participants who will share their experience with CRPS for the benefit of all.

Anyone with the diagnosis of CRPS Types I and II can participate via a link on RSDSA's website, www.rsds.org or from the study website (www.crpssurvey.org). Potential participants, who are not familiar or comfortable with Internet-based communication, can contact the study's Project Manager to obtain paper forms for registration, consent and enrollment. Participation is voluntary and anyone can withdraw from the study whenever they wish. Each year, the participants will be asked to answer questions about their health and health-care utilization, treatment, and how CRPS is affecting their health and wellness. Participants do not need to submit medical records to register for the study, but we may request medical records to confirm information in the database. All questionnaires and records are confidential and securely held according to HIPAA and WIRB provisions.

http://www.rsds.org/3/research/RSDSAStudy_1019_197.html

10% discount for CRPS/RSD Jewelry through November

2009-10-08T20:47:00.000-07:00

In order to help promote CRPS/RSD Awareness Month in November, I am giving a 10% discount on any CRPS/RSD Awareness Jewelry order during the months of October and November. Check out my website handcraftedawarenessjewelry to see the full line of my designs and to place your order.

Be Blessed,

Being Comfortable with CRPS

2009-09-30T20:02:00.000-07:00

Being Comfortable with CRPS

By: Tracy Zuckerman

So it's time you started getting in tune with your body. What does that mean? Pain is a signal for you to pay attention and tune into the here and now. Try to live in the moment and realize that your body needs you to pay attention!

Complex regional pain syndrome (CRPS), formerly known as reflex sympathetic dystrophy (RSD), is a debilitating illness and it plays havoc on your body. There are many alternatives to the way in which we can respond to what is going on. So let's get comfortable, as best you can.

Learn to become more aware of what is truly taking place within your own body. Keeping a diary or a pain journal is a good way for you to follow how you are doing and look back at what you've done. Most of us cannot begin to remember all of the different things that we experience daily from this chronic condition, so start writing and reading your own journal. After all, it's your story. A diary or pain journal is a great asset when you go to your health care providers and various therapy appointments. The National Pain Foundation has an area on its site for you to keep a personal pain journal that can help you record your thoughts, your pain levels and your strategies for coping.

A journal also helps you become aware of the variety of movements, positions and activities that disrupt your well-being. Learning how to cope with them will take time and patience. Your central nervous system is in a state of terror and it's on a heightened state of alert. Each of us will respond differently to the medicines and treatments we try. Our bodies are totally interconnected, like fine-tuned computers, but CRPS has our systems going haywire. We can try some common remedies and consider how we can react.

For example, if any part of your body is cold, has a spasm or ache, or is stiff and tight, immersing yourself in some warm water can help you change the way your body feels. I take a hot water bottle with me when I travel and fill it up with warm water. It keeps me warm and cozy for hours. You can fill the bottle about half way and squeeze the extra air out before you close it up; this allows the bottle to be positioned more comfortably around your body.

Soaking in a bath with Epsom salt relaxes me and gives me some relief as well. I also use a moist-heat, electric heating pad on many different areas of my body. Heat is very soothing and can help loosen up stiff, tightened muscles. A paraffin wax machine is another way to warm up some stiff and tight hands and feet.

Some of us are sensitive to the touch of objects around us, so realize that you need to compromise with your own body. Using pillows or very soft pieces of foam can help you position yourself for comfort. There are many stores and places on the Internet where you can purchase a variety of items that can bring you some much-needed comfort. Sometimes, we may get in a rut – we are used to certain things and we do not realize that there are other options. It's all about changing the pattern and trying something new. Try different items for your comfort needs, whether it's a pillow, a relaxation CD or aromatherapy. Take these comfort items with you wherever you go. After all, CRPS knows no boundaries!

The clothes that we wear are made of many different textures of fabric. Experiment and find out what feels good on your body. I have discovered that with the extreme sensitivity from CRPS, I am more comfortable in softer fabrics. Surround yourself with clothing, towels and bedding that help you feel more comfortable. Some of your body's responses to the environment in which you live can be adjusted by making simple changes that help you relax and make you more comfortable. Your body will communicate with you if you listen, but listening to your body takes practice.

Learning to live and get somewhat comfortable with CRPS requires your continued involvement and attention. Becoming aware and tuning into your body's signals will help you on your path to healing.

source

30 Things About My Invisible Illness You May Not Know

2009-09-09T21:13:00.001-07:00

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: CRPS=Complex Regional Pain Syndrome
2. I was diagnosed with it in the year: 2001
3. But I had symptoms since: 3 months prior to be diagnosed
4. The biggest adjustment I’ve had to make is: change in my daily routine
5. Most people assume: my syndrome has gone away as I don't "look sick"
6. The hardest part about mornings are: having to get up and about when I'm exhausted
7. My favorite medical TV show is: I rarely watch tv
8. A gadget I couldn’t live without is: my hand gardening tools
9. The hardest part about nights are: getting comfortable enough to fall asleep
10. Each day I take __ pills & vitamins. (No comments, please) uh I don't count
11. Regarding alternative treatments I: blend them with my medical treatments
12. If I had to choose between an invisible illness or visible I would choose: neither
13. Regarding working and career: I am no longer able to work in my professional career although am able to work a few hours a week now about 7 years
14. People would be surprised to know: I wouldn't wish this syndrome on anyone
15. The hardest thing to accept about my new reality has been: I may go into remission but there is no cure
16. Something I never thought I could do with my illness that I did was: walk a mile with my hubby for fun
17. The commercials about my illness: there are NO commercials; many medical professionals have no clue what CRPS/RSD is.
18. Something I really miss doing since I was diagnosed is: jet-skiing, camping, hiking, riding my bike
19. It was really hard to have to give up: my nursing career
20. A new hobby I have taken up since my diagnosis is: designing jewelry
21. If I could have one day of feeling normal again I would: dust off the cobwebs and ride my mountain bike
22. My illness has taught me: the true meaning of being a Christian and walking the walk
23. Want to know a secret? One thing people say that gets under my skin is: is saying nothing at all and ignoring my inability to do certain things
24. But I love it when people: take their time to ask how I am feeling and really mean it
25. My favorite motto, scripture, quote that gets me through tough times is: "Life Isn't About Finding Yourself, Life Is About Creating Yourself." and "With HOPE all things are possible!"
26. When someone is diagnosed I’d like to tell them: I do understand as I deal with what you have as well.
27. Something that has surprised me about living with an illness is: Meeting "True Friends" that I meet along my journey and the lasting friendships I have in the "True Friendships".
28. The nicest thing someone did for me when I wasn’t feeling well was: calling to check in with me
29. I’m involved with Invisible Illness Week because: I believe in what RestMinistries does and find the shows very interesting!
30. The fact that you read this list makes me feel: BLESSED

09 Seminars & Speakers-- Invisible Illness Week--

2009-09-08T19:25:00.000-07:00

Click on the link here to view the schedule for invisible illness week. Get yourself ready as the week is approaching and you'll have all kinds of chances to listen to virtual conferences sitting in your own home in a comfy chair or couch. Get prepared a head of time and that way when the week starts you'll already be informed and ready to go.

National Invisible Chronic Illness Awareness Week

2009-08-30T10:57:00.000-07:00

Just a reminder that National Invisible Chronic Illness Awareness Week is fast approaching. This is a free 5 day virtual conference from September 14-20, 2009. Lisa Copen the founder of Rest Ministries makes this a very interesting week for all. So check out what will be going on at http://invisibleillnessweek.com/.

Who knows you may even win a necklace; one of my designs.

a bit of an update on me--

2009-08-21T19:54:00.000-07:00

I have finally found treatment that helps me to live a much fuller and enjoyable life with lessened overall pains and that is the Lidocaine IV. I had my first IV last fall and one in May and I con't to get some good results from them. With this renewed life I've been able to start an interest of mine and that is-- designing jewelry.

Designing awareness and other jewelry has allowed me to relax my body, mind and soul. This fills my passion of creativity and I enjoy working with others to create a piece/s that they have been wanting. I have found that even though I live and deal with CRPS/RSD on a daily basis that I can still do some things that give me smiles and enjoyment.

Follow your heart and follow your dreams no matter what life throws your way...

Complex Regional Pain Syndrome and Quality of Life

2009-08-18T20:28:00.001-07:00

Dear Listserv Members,

My name is Jessica Lohnberg and I am a doctoral candidate at the University of Iowa Ph.D. program in Counseling Psychology. I am conducting a research study on the quality of life of patients with complex regional pain syndrome (CRPS). I am writing to invite you to participate in the study. This information is being distributed by the Reflex Sympathetic Dystrophy Syndrome Association. I was not given your name or contact information.

To be eligible to participate, you must be between the ages of 18-89 with a diagnosis of either CRPS Type I or Type II with no other concurrent pain condition. If you agree to participate, I will ask you to complete an on-line survey. The survey will take approximately 20 minutes to complete. I will ask for information about you, your medical history, and how CRPS affects your life.

You will be asked to read a document with additional information about the study before deciding to participate. If you are interested in being in the study, please click on this link to be directed to the study information:http://survey.uiowa.edu/wsb.dll/980/CRPS.htm

If you have any questions about this research study, please feel free to contact me.

Sincerely,

Jessica Lohnberg, B.A.
5th Year Doctoral Candidate
Counseling Psychology Program
University of Iowa
jessica-lohnberg@uiowa.edu

Two girls lean on each other for support against a rare disease

2009-08-06T08:22:00.000-07:00

Two girls lean on each other for support against a rare disease
By Ryan Stotts
La Crosse Tribune

LA CRESCENT, Minn. - Sarah Kratt lives with pain every day.

"A lot of people don't get it because I'm always smiling and happy," she said.

The 14-year-old, who lives with her family on 20 acres outside La Crescent, was diagnosed in May 2007 with the rare and mysterious complex regional pain syndrome - a chronic pain condition resulting from a dysfunction in the central nervous system.

A chance meeting with April Tillinghast, 15, of Kingwood, Texas, who also has CRPS, sparked a friendship that has helped Sarah handle the pain in her left leg and back.

Sarah's leg began to hurt in April 2007, said mom, Jill Colbert. It got bad enough that Sarah couldn't walk and her leg would turn purple.

Doctors were perplexed. Despite physical therapy and pain medications, Sarah's condition worsened. First she was on crutches, then a walker, then a wheelchair. Finally, she was bed ridden.

"It's so hard to see your child go through something like this," Jill said. "You feel so helpless."

Sarah saw more than 20 doctors, but as time wore on, nothing worked. "Sometimes I wish I could've given the doctors my pain, so they would know what it's like," she said.

In December 2008, a ray of hope entered their lives in the form of kinesiologist Dr. Alan Trites, who has an office in La Crescent.

"He said Sarah was like an onion," Jill said, "peeling back each layer and working through her body's

issues, slowly getting her body back to where it would work with her again."

Then, in June 2008, while at a month-long pain rehabilitation program at Mayo Clinic, Sarah met April. The connection was almost instant.

"She's really a positive personality," April said, "but there's also this really deep understanding of each other."

April's pain was in her right foot, with secondary pain in her head. She had been living with CRPS since 2006.

The girls remained close and continued to communicate via Skype, the online video and phone service, as well as by text messages and e-mails.

"It took that friendship with April to understand and to help Sarah get through all this," said Sarah's stepdad, Tom Colbert.

As the girls became closer, so did Jill and April's mom, Susan Tillinghast.

"I lived in my own shell, taking care of Sarah, finding different things to do," Jill said. "So it was interesting meeting other parents going through the same thing. You have a connection there. It feels so good."

In July, Sarah spent two weeks in Kingwood. April also came to La Crescent for a week.

"It's easier to deal with everything when I'm with her," Sarah said. "If I hadn't met her I don't know where I'd be right now."

Susan, who spoke on the phone from Kingwood, said the girls have formed a healthy bond.

"The greatest thing is the happiness they seem to share," Susan said.

Both girls are grateful for simple things and want a normal life.

"I hope I can do something good with this and help somebody else," April said.

While April would like to volunteer at places like headache clinics, Sarah can see herself becoming a nurse.

"The doctors would breeze in and breeze out, but the nurses were the ones who would take care of you and comfort you," Sarah said.

There isn't a cure for CRPS, Jill said, but she wants people who might be suffering from pain to know there is hope.

"Different things work for different people," Jill said. "Be open to the possibilities."

This Man CHOSE to be in a Coma

2009-07-31T19:21:00.000-07:00

After years of excruciating pain that drove him to thoughts of suicide, John Roach decided to gamble on a controversial new treatment-a ketamine-induced coma.

August 10, 2009

By Alicia Dennis
PEOPLE Magazine

John Roach looks up at wife Rosemary from his bed in room 133 at the Hospital San Jose in Monterrey, Mexico. "Don’t say goodbye," he pleads as doctors prepare to send the burly grandfather form Allentown, Pa., into unconsciousness. "It’s okay," Rosemary says. "Pleasant dreams."

Soon, deep in a coma, John descends into a frightening, topsy-turvy world. Scene: He’s in a strange house with paintings on the ceiling. Scene: He’s watching as his cat rushes into the path of an oncoming car. Scene: He’s a World War II soldier fighting on a blood-soaked battlefield. "It was weird and frightening," John recalls of his voluntary, five-day ordeal in late May. "But I needed to do something."

Suffering from a debilitating neuromuscular disorder called reflex sympathetic dystrophy (RSD) , John, 50, is one of about 100 chronic-pain patients resorting to a radical new treatment in search of relief-medically induced coma using ketamine, a surgical anesthetic and hallucinogen sold illegally as "Special K." advocates say ketamine comas can be a godsend for some. "We're giving people in excruciating pain a normal life," says Dr. Robert J. Schwartzman, neurology chairman at Philadelphia's Drexel University College of Medicine; since coma therapy isn't FDA approved, he's sent more than 60 patients to Germany and Mexico. But other experts say the treatment, which costs as much as $ 50,000 with travel, is too risky. "Vulnerable people are getting something expensive and potentially dangerous," says Dr. Norman Harden of the Rehabilitation Institute of Chicago.

Some 200,000 people suffer from RSD, in which ordinary pain escalates to crippling levels. "Think of holding a blowtorch to your skin," says John, whose entire left side was affected after he fell down rotted stairs and tore his rotator cuff in 2002. Because ketamine blocks pain receptors, Schwartzman says, very high doses can restart the nervous system, "like rebooting a computer."

Brandy Sachs, 23, of Christianburg, Va., had spent seven years in a wheelchair after a finger injury and ankle sprain spiraled into all-over agony. "I was giving her pain meds in doses that would have killed a horse," says her family doctor, Jeremy Freeman. Last fall, after undergoing a five-day coma in Germany, Brandy needed months of therapy to relearn how to walk, talk and eat. But now, she says, she's pain-free and plans to start her master's degree: "It's a miracle."

Not always. In October 2008, RSD patient and mother of three Laura Beckett, 47, of Magnolia, N.J., developed pneumonia while in a coma in Germany and was kept under for three weeks as doctors fought to save her. She woke up paralyzed from the neck down and now lives at a rehabilitation center. "It's an understatement to say things went wrong," says husband Karl, though he adds his wife's pain was so unbearable they would likely choose the coma again. Says Schwartzman: 'We've had tragic outcomes. But this is only attempted after every other treatment has been tried."

John, a jovial retired phone-company worker, had tried surgery, physical therapy and heavy doses of pain medication, including OxyContin, codeine and fentanyl. When nothing worked, he thought of ending it all. "I couldn't be touched," he says. "I couldn't hold my wife's hand or sleep next to her. It wasn't the life I wanted."

Back home now, John is amazed that he's been virtually pain-free. Getting regular ketamine booster injections (at non-coma levels) from his physicians, Schwartzman and Dr. Anthony Kirkpatrick, he has removed a protective compression sleeve he wore for years and can once again wear his watch and wedding ring. Best of all, he can walk hand in hand with Rosemary and scoop up his granddaughters for hugs. "I have been missing all the little joys in life," he says. "Now I want to live every one of them."

RSDSA: Information on Ketamine Treatment

Added July 31, 2009

CRPS video portraying the life of Laura Black

2009-07-24T18:45:00.000-07:00

Just an incredible video showing what it is like to live day to day with CRPS/RSD. Laura Black is a brave young woman who I personally want to thank for making this video and being interviewed. I have to say it is one of the top on my list portraying our life of living and dealing with CRPS/RSD on a daily basis.
hUgz,

"Complex Regional Pain Syndrome is a condition where pain never goes away after an injury and even gets worse. The pain becomes a disease in its own right."

http://www.abc.net.au/catalyst/stories/2621515.htm

Catalyst: Complex Pain - ABC TV Science

2009-07-20T19:33:00.000-07:00

As one who endures this syndrome on a daily basis, I have to say this report/video is the most accurate and portrayed that I have seen in a very long time...

Complex Regional Pain Syndrome is a condition where pain never goes away after an injury and even gets worse. The pain becomes a disease in its own right.

NARRATION:
Laura Black lives in a world of agony. She experiences pain on a level most of us can’t begin to imagine.

You can view the video narration at the link below
http://www.abc.net.au/catalyst/stories/2621515.htm

CARE Card

2009-07-18T10:17:00.000-07:00

CARE Card

When you’re not feeling well you go to the doctors. He or she may give you a prescription to obtain medication from the pharmacy as part of your treatment. It is important that you understand what you are taking, why and how to take it. This graphical tool will help you to understand how your medication should be taken, what things you should avoid while taking it as well as possible side effects.

http://www.theacpa.org/documents/CareCard2008.pdf

God is Always There

2009-07-07T13:41:00.000-07:00

God is Always There

Our Heavenly Father is always there
He knows our sadness and dispair
And if we would just call on Him
He will always hear our prayer.

When in our life those struggles come
And we tend to feel so alone
Our Fathers watching from above
With compassion and such love

He knows our every weakness
He sees us when we fail
And yet His perfect love for us
He continues to unveil

He loves to see our child like faith
As we kneel beside our beds
And share our hurts and broken dreams
Before we lay down our heads

So when you are discouraged
And you think that no one cares
Just give it all to God above
Because He's always there.

Protecting Your Job While Coping With a Chronic Illness

2009-06-30T19:38:00.000-07:00

Protecting Your Job While Coping With a Chronic Illness

By LESLEY ALDERMAN
Published: June 19, 2009

IT started with an odd sensation in her right hand and a feeling of exhaustion so profound she could hardly get through an hour of work, let alone a full day.

After numerous tests and countless doctors’ visits, Natasha Frechette, then 27, learned she had multiple sclerosis, a disease that attacks the central nervous system and can cause numbness, blindness and eventual paralysis.

In addition to grappling with the diagnosis, Ms. Frechette was concerned about keeping her job as a data manager for a small research organization in Brooklyn Park, Minn. “I didn’t want to have to depend on someone to take care of me,” she said. "But I know that I could wake up tomorrow and not be able to walk."

Workers with chronic illnesses face chronic uncertainty, forced to worry not only about their health but about their jobs as well. The protections afforded chronically ill workers in the United States are thin and somewhat vague. To protect their health and their jobs, workers must navigate employers’ policies, which may include short- and long-term disability plans, as well as a patchwork of federal laws and regulations.

A recent study by the Center for Economics and Policy Research, a Washington research organization, found that among 22 rich nations, the United States was the only one that did not guarantee workers paid time off for illness.

Most other countries provide their workers not only with paid sick days, but also time off for cancer treatments, the study found. German citizens, for example, are allowed five sick days and 44 days for cancer treatment, if needed, in addition to vacation days.

Most employers in the United States allow employees to take days off for minor ailments, like the flu or outpatient operations, without docking their pay. And 41 percent offer employees days off — nine, on average — for illness or other reasons, in addition to vacation days, according to a 2007 survey by Mercer, a benefits consulting business based in New York.

But when an employee has a serious or chronic illness, like diabetes, major depression or lupus, the rules about time off become murky.

Two laws offer workers some relief. The Family and Medical Leave Act allows employees to take up to 12 weeks off each year for medical or family emergencies — but without pay. And the Americans With Disabilities Act requires employers to make reasonable adjustments for disabled workers, often in the form of additional time off.

Ms. Frechette explained her condition to her supervisor and said she would need time off for physical and occupational therapy. Her boss readily agreed, and Ms. Frechette, who plans to marry this fall, continues to work full time.

“I’m careful,” she said. "I don’t want my disease to be seen as a cop-out.”

If you are dealing with an chronic illness, here are some strategies to help you maintain your job.

INFORM YOUR EMPLOYER If you have a condition that could interfere with your performance, tell your boss. “People are often afraid of being discriminated against,” said Rosalind Joffe, a career coach who counsels people with chronic illnesses. “I had one client who didn’t disclose his illness to anyone. His odd behavior led his boss to conclude he was a drug abuser.”

Be honest. Explain what your condition is and how it might affect your work. “Don’t be ashamed,” Ms. Frechette said.

A supervisor who understands what is wrong is less likely to make false assumptions about what you can and cannot do. “Be clear about your value and what you can deliver,” Ms. Joffe said. “If you’re a valued employee, your boss will work with you.”

If you feel you are being unfairly treated, speak with your supervisor. If that doesn’t work, go to the human resources department.

ASK FOR ADJUSTMENTS If your illness meets the definition of a disability, your employer is required to make reasonable accommodations to your job or work environment, according to the Americans With Disabilities Act.

What is a disability? “It’s a physical or mental impairment that substantially limits one or more major life activities,” said Chris Kuczynski, director of the division that deals with the disability act at the federal Equal Employment Opportunity Commission.

Although your illness may be episodic or controlled by medications, it is still a disability, according to a recent amendment to the law.

Your employer does not have to provide an accommodation if it would impose significant difficulty or expense. Asking for a car and driver to take you to and from work would probably not be reasonable, Mr. Kuczynski said. But taking time off for chemotherapy treatments certainly would.

According to the Society for Human Resource Managers, the top five accommodations for the disability act provided by employers in 2005 (the last year for which data are available) were parking or transportation modifications, making existing facilities accessible, offering new equipment to workers, restructuring jobs and modifying the work environment.

If you are not sure what type of accommodations you are entitled to or how to ask for them, contact the Job Accommodation Network (800-526-7234), a service provided by the federal Department of Labor. In general, the network recommends that you put your request to your employer in writing. If you work in a small, informal setting, that may not be necessary.

KNOW THE TIME-OFF POLICIES You can learn about the on-the-books rules by going to your company’s intranet or speaking with its human resources department.

If you need to take a few weeks or months off for an operation, for example, or chemotherapy, research your company’s short- and long-term disability plans. Disability policies typically allow you to take a specific time off at reduced pay. According to Mercer, the consulting firm, 78 percent of employers offer short-term plans and 80 percent offer long-term disability plans.

You can also tap into your 12 weeks of family and medical leave at any time. You may take the time intermittently or all at once. You will not be paid, but your job will be secure.

EXPLORE ALTERNATIVES If the hours are too long or the work is too taxing to handle while you are ill, find out whether you could work part time or could even take a different job in your company.

If neither is feasible, explore new career possibilities. One of Ms. Joffe’s clients was a high-powered lawyer who had a serious heart condition. To reduce stress, he decided to give up litigation and become a teacher.

If you are worried about your finances or health insurance, be sure to check with the advocacy organization focused on your disease. The American Cancer Society, for instance, has a call center (800-227-2345) that helps people who don’t have health insurance or are on the verge of losing it.

If your illness finally prohibits you from working altogether, you may apply for Social Security disability insurance. The process is lengthy, and you must be able to prove that you cannot work at any job. The amount you are paid is based on your lifetime earnings — you can find the number on the annual statement you receive from the Social Security Administration.

Generally, payments are modest: the average in 2008 was $1,063 a month. But once you have received disability payments for two years, you automatically qualify for Medicare coverage.

http://www.nytimes.com/2009/06/20/health/20patient.html

Action Alert--APF’s Petition to the FDA on REMS - Sign Now!

2009-06-23T12:48:00.001-07:00

ACTION ALERT

Forward to a Friend

APF’s Petition to the FDA on REMS - Sign Now!
Join APF in Urging the FDA to
Protect the Rights of People with Pain!

Act now and sign petition! APF encourages the entire pain community - people with pain, providers, family members and friends - to sign this petition urging the U.S. Food and Drug Administration (FDA) to protect patient access to prescribed opioid pain medications. As the FDA develops its Risk Evaluation and Mitigation Strategies, or REMS, we ask that the agency take a balanced and rational approach as they attempt to ensure that the benefits of these medications continue to outweigh the risks, including misuse, abuse and accidental overdose. The FDA has been receiving comments calling for an outright ban or moratorium on certain opioid pain medications.

Let your voice be heard loud and clear. People in pain MUST have access to prescribed pain medication. Support and sign this petition now! The petition deadline is June 28, 2009.

To read the full explanation of the recommendations made in the petition, please read our position statement.

For more information on REMS, read APF’s Frequently Asked Questions.

Thank you for all you do to improve pain management and access to care!

Sincerely,
American Pain Foundation

The Word on Pain: PainPathways...

2009-06-21T10:33:00.000-07:00

The Word on Pain: PainPathways, a magazine created by WFU prof, gives hope to people who are living with pain

by Janice Gaston
Winston Salem Journal

Millions of Americans suffer from a debilitating medical condition, a condition that can prevent them from performing routine tasks, rob them of their livelihoods and even destroy their wills to live.

To make matters worse, the condition is invisible. Those who suffer from it sometimes don't get the help and understanding that they would with a visible impairment.

The condition is chronic pain, and it affects millions of people in the United States.

Dr. Richard Rauck has spent his career helping people deal with pain. He is president and founder of the Carolinas Pain Institute and the Center for Clinical Research, director of the pain management fellowship program and a clinical associate professor in the Department of Anesthesiology at Wake Forest University School of Medicine, founder of the Sceptor Pain Foundation and a member of the executive board of the World Institute of Pain.

Last year, he started PainPathways, a quarterly magazine devoted to helping people who are living with pain learn and cope. Its target audience also includes doctors and other medical personnel who deal with people in pain. The magazine, which was initially distributed only in doctors' offices, is now available in Barnes & Noble and B. Dalton booksellers and by subscription.

Rauck is editor-in-chief, and most stories receive his editing approval. But the articles are aimed at a general audience and written so that laymen can understand them.

The magazine, which will soon reach a circulation of 100,000, has not yet turned a profit. When it does, the money will go to the Sceptor Foundation, a nonprofit education-and-research foundation aimed at developing new pain medicines. There has been talk about expanding the magazine's circulation to other countries and publishing it in different languages, Rauck said.

"We'll see where that leads."

The magazine gives people a chance to hear stories from ordinary people and celebrities, including Montel Williams and Elizabeth Edwards, who shared their feelings and frustrations about living in pain. Williams has dealt with multiple sclerosis for many years, and Elizabeth Edwards is fighting cancer. Each edition also contains a directory of clinical trials, an events calendar and a pain resource guide.

"Until you have lived with it or had it, you don't understand," Rauck said. "That's the story I hear from everybody. Pain is so subjective. It's not like having your leg cut off or being blind or being deaf, illnesses people can understand."

Jeanne Qualkinbush is a Winston-Salem woman who suffers from constant arm and leg pain from reflex sympathetic dystrophy (RSD), a chronic, incurable neurological disorder. Qualkinbush, now 46, had been a late bloomer who went back to college in her 30s. She was thriving in her job as an associate team leader at Whole Foods Market when she developed pain in her hands after carpal tunnel surgery. The pain spread to her feet, and now it affects both arms and both legs.

"I really enjoyed my job; it was a great place to grow," she said. "I was just knocking it out, just working." People who develop RSD tend to be like her, people "who get smacked down when we least expect it," she said. She went from being an overachiever to being on disability.

When she first read PainPathways and saw the stories of people who were dealing with the same problems that she was, she felt less alone, she said. She also gleaned tips to help her deal with pain, such as using a Bluetooth device to help her on the telephone.

"Things you think would be simple, easy ideas don't always come to you so fast," she said. Qualkinbush found the magazine so helpful that after buying her own subscription, she sent a donation so that someone who couldn't afford the magazine could also subscribe.

Rauck and his managing editors, Shon Lawson Gilmore and Amy Taylor North, have been touched by the response the magazine has received from people who haven't had a forum to express their feelings until now. He sees plenty of potential for continued growth of the magazine as new treatments, devices and drugs reach the market.

"We should be able to stay ahead of the curve," he said. The magazine will soon release its sixth issue.

"It's a way to reach a lot of lives and make a difference in their lives," he said.

■ Janice Gaston can be reached at 727-7364 or at jgaston@wsjournal.com

■ For more information on the magazine, check the Website www.painpathways.org or call 714-8389.

NJ Herald: Sparta woman's disease causes chronic pain

2009-06-02T16:58:00.000-07:00

Thank you to all who will be walking as I feel as though you are walking for me too. My long term goal is to be able to walk in a CRPS/RSD walk. Blessings, Belle

NJ Herald: Sparta woman's disease causes chronic pain

By SETH AUGENSTEIN
saugenstein@njherald.com
NJ Herald

SPARTA - A burning pain shoots up the arm and shoulder of Doreen Berg.

She describes it as sticking a finger in a electrical sop the arm and shocket, and then lighting a fingertip on fire.

The pain's not a single, senselessly self-inflicted injury; it's an everyday, chronic occurrence for Berg in the past four years.

In January 2005, Berg slipped on black ice, upending herself, tearing her rotator cuff and leaving her bicep "hanging by a thread." She had the surgeries to repair what had ripped in her body, and she worked at recovery. The muscles healed, but the true recovery never came.

"After the surgery I was not getting better - and the pain was getting worse," she said.

The former aerobics instructor eventually was diagnosed with reflex sympathetic dystrophy syndrome, or RSD. She had never even heard of the affliction, and didn't understand its full import until she looked up the complex-sounding symptoms online, and until she began to feel the characteristic, burning pain of RSD.

The syndrome is not completely medically understood. It's basically a malfunction of the nervous system. Most people unlucky enough to have Berg's injury will feel pain, but the nerves eventually will stop flashing pain signals to the brain once the healing process is finished. In RSD patients, they don't, and doctors don't know exactly why.

Essentially, Berg continues to feel the effects of her fall four-plus years ago.
According to the Reflex Sympathetic Dystrophy Syndrome Association, any number between 200,000 and 1.2 million Americans suffer from the condition - and may follow as many as 5 percent of all nerve injuries. The syndrome even can follow a simple ankle sprain. Often, it goes undetected for a painfully long time; people with the disease see an average of five physicians before they are diagnosed.

Berg's injuries were more serious than a routine sprain, but they were wounds that, given time, normally heal enough to avoid constant, lingering pain - at least when the right steps toward healing are taken.

She's had several procedures - removing scar tissue from her shoulder, 16 separate injections in the sensitive nervous system locus of her stellate ganglion, a bicep transfer to strengthen her tendons, ongoing infusions of ketamine - a strong tranquilizer - every six weeks. Simple balms and ointments do little but distract from the constant transmission of burning pain. A litany of medications have done nothing to dull the relentless pain.

"I've been on and off nearly every medication you can think of," she said.
Of course, she also keeps active as much as possible. Although she needs some help with household chores, most notably vacuuming and mopping, she keeps pushing her body to its maximum effectiveness. Berg also walks at least six miles each day.

She's also taking her daily walk for the greater cause, as well. On June 28, she will be a part of the Achilles Walk for Hope and Possibility in Central Park for the second year in a row. She will walk the five miles to raise money for various causes, perhaps the closest to her heart being the Reflex Sympathetic Dystrophy Syndrome Association and its push for a cure to the baffling disease.

In the meantime, the daily pain continues for Berg. She continues to work part-time at a doctor's office. This week she departed for Northwestern Memorial Hospital's pain clinic in Chicago. She's applying for a month-long boot camp of sorts plotted to help people cope with unrelenting pain without the crutch of medications. Berg said she's hopeful about what the future holds, including the possibility of a cure.

"I always say, I've got RSD, but RSD doesn't have me," she said.

http://rsds.org/5/news/2009/May/NJHerald_28_186.html

RSD-CRPS the most painful of chronic pains that exist.

2009-05-30T08:55:00.000-07:00

Just for a moment-- think of what it would be like to live with this type of pain on a daily basis. Just imagine!

RSD-CRPS the most painful of chronic pains that exist.

McGill Pain Index

Causalgia that is the alternate name for RSD is a Latin word which means “burning pain”. More often than not RSD patients suffer from intense pain coupled with burning sensation. However, to know the exact extent of pains suffered by a person the indicator used is known as McGill Pain Index.

There are many versions of McGill Pain Index. One of the versions is also used to calculate the pain ratio in case of patients suffering from RSD or CRPS. Developed initially in 1971, the McGill Pain Index gauges the quality of pain. Since it was developed in McGill University by Melzack and Torgerson it is called McGill Pain Index.

Several pointers are used to exactly calculate the pain proportion in a RSD patient. In calculation, the RSD Injuries are also taken into count since they have a major role to play in developing RSD and sufferance of the patient. Some of the pointers are sensory qualities like tension, fear, and sensitivity. Pressure and environmental changes are also taken into account at the time of calculating the intensity of pain suffered.

Doctors and scientists world over have accepted the McGill Pain Index as the universal indicator of RSD Progression in the body of a patient. The tool is especially useful in dealing with a chronic pain since it is both viable and reliable.

Memorial Day

2009-05-24T09:48:00.000-07:00

A HUGE thank you goes out to all those in the military; to those in the present and to those in the past. YOU all make me proud to be an American.

God bless, Belle

Repeated Virtual Reality Distraction Reduces Pain Perception

2009-05-14T20:08:00.000-07:00

I found this article very interesting and wanted to share it and hear your thoughts...

Repeated Virtual Reality Distraction Reduces Pain Perception
Released: Mon 20-Apr-2009, 15:00 ET

Description
Distraction through virtual-reality technology was found to reduce pain perceptions after repeated exposures in a University of Maryland study published in The Journal of Pain.

Newswise — Distraction through virtual-reality technology was found to reduce pain perceptions after repeated exposures in a University of Maryland study published in The Journal of Pain. The test subjects did not, as expected, adjust their pain perceptions or become habituated to the stimulation over time.

Virtual-reality interventions allow the user to interact with a responsive multisensory virtual experience generated by a computer through a wide-angle display headset and headphones. The technology is presumed to influence pain perception by competing for the subject’s attention and blocking external stimulation. It takes attention away from pain stimuli, but the effect may diminish after repeated exposure as the novelty of the experience decreases.

This is the first study to assess the long-term effect of adjunctive virtual reality pain treatment. Twenty-eight young adults participated and were exposed to a virtual-reality experience eight times in eight weeks to counteract the effect of cold pressor pain stimuli.

Results showed the subjects had increased pain tolerance during the virtual-reality experience relative to baseline. There also were significant decreases in ratings of pain intensity, anxiety and time spent thinking about pain. None of the pain distraction effects of virtual-reality treatment diminished over time in the test subjects. The authors concluded that virtual-reality distraction may have potential to be clinically effective over extended exposures.

http://www.newswise.com/articles/view/551414/?sc=dwhp

Ramachandran's Mirror Trick

2009-05-09T20:32:00.000-07:00

I find mirror therapy extremely bizarre. My PT does this with his CRPS/RSD patients and I've done it as well. Unfortunately for me, I didn't have it until about 5 years into this journey of CRPS/RSD pain and so it hasn't worked very well for me other than totally messing with my brain. I just have to share this as it works so very well with those in early stages of CRPS/RSD. Blessings, Belle

Ramachandran's Mirror Trick

By John Colapinto
The New Yorker

In this week's issue, I have a profile of the extraordinarily gifted University of California, San Diego professor V. S. Ramachandran. (The article is available to subscribers.) "Neuroscientist" seems insufficient to describe the wizardry of his accomplishments. As a child, he was obsessed with magic tricks and illusions. So I think it's no coincidence that the insight that made his name in science is his work using mirrors to alleviate phantom-limb pain, the excruciating, unremitting agony that many amputees feel in their missing limbs. Physicians for centuries have sought a way to cure this epistemologically mystifying pain (how do you feel pain in an appendage that's not there?), but the best, least invasive method turns out to be Ramachandran's magician-like illusion which uses no drugs, scalpels, or grueling physiotherapy-just a few minutes a day with a five-dollar, dime-store mirror.

The therapy (also covered by Atul Gawande in this magazine) is singularly simple to execute but devilishly difficult to describe in prose (as I discovered when writing that section of the story). So, for everyone's edification, here's a passage from my piece, and a photograph that loosely illustrates the way it works.

In his office in Mandler Hall, Ramachandran positioned a twenty-inch-by-twenty-inch drugstore mirror upright, and perpendicular to the man's body, and told him to place his intact right arm on one side of the mirror and his stump on the other. He told the man to arrange the mirror so that the reflection created the illusion that his intact arm was the continuation of the amputated one. Then Ramachandran asked the man to move his right and left arms simultaneously, in synchronous motions-like a conductor-while keeping his eyes on the reflection of his intact arm. "Oh, my God!" the man began to shout. "Oh, my God, Doctor, this is unbelievable." For the first time in ten years, the patient could feel his phantom limb "moving," and the cramping pain was instantly relieved. After the man had used the mirror therapy ten minutes a day for a month, his phantom limb shrank-"the first example in medical history," Ramachandran later wrote, "of a successful 'amputation' of a phantom limb.

Incidentally, if you want to test the weird potency of this kind of visual biofeedback's effect on your brain, I urge all of you to try the mirror trick, first synchronizing your movements with both hands (touching the tip of each finger, for instance, with your thumbs) while watching only one of your hands in the mirror; then mixing it up-touching thumb to forefinger of your right hand, while touching thumb to pinkie of your left. The sense of neurological and physical imbalance that this induces provides a disquieting glimpse into the disjunctions of mind and body suffered by stroke victims, and a reminder of how delicate is the seeming solidity of the reality that surrounds us-even the "reality" of our own bodies.

Early in his career, Ramachandran researched optical illusions with Richard Gregory, a professor of neuropsychology at the University of Bristol. Gregory has posted videos of his most illuminating experiments-including the trick involving a Charlie Chaplin mask on a rotating axle that I mentioned in my piece.

http://rsds.org/5/news/2009/May/NewYorker_7_183.html

Recent Advances in CRPS/RSD with Dr. Joshua Prager

2009-05-07T22:04:00.000-07:00

Amazing Universal Healing Aid -by Gary Craig EFT Founder

2009-05-02T09:19:00.000-07:00

I recently had an MD tell me about this and recommend that I do it. So I wanted to share this video for all to see.

thoughts

2009-04-30T11:55:00.000-07:00

When I think of CRPS I do think of it as being a storm that you go through. Some days are bright sunny pain tolerable days and other days it's the horrid pains and dreary colored skies. What keeps me going on this CRPS journey is my faith in the Lord as without Him this journey would have failed years ago.

hUgz, Belle

Cognitive Behavior Therapy for CRPS

2009-04-26T16:43:00.000-07:00

Cognitive Behavioral Therapy for CRPS
By Stephen Bruehl, PhD

Patients with CRPS often are told by their physician that they might benefit from seeing a pain psychologist. Yet patients may wonder how seeing a psychologist could help them with their pain given that CRPS is clearly a physical problem.

There are several targets for psychological intervention with CRPS, the most obvious of which is helping patients deal more effectively with the physical and emotional impact of CRPS in their lives. However, another key target of treatment is learning to control the pain without drugs. Many patients initially have trouble believing this is even possible; nevertheless, research has clearly documented that for the majority of chronic pain patients, emotional distress frequently intensifies the severity of pain. This does not imply that the pain is psychological, but rather reflects the interconnections between the parts of the brain that underlie emotions and the stress response, and the parts of the brain that regulate pain.

These pain-exacerbating effects of distress are particularly important in CRPS, because the physiological mechanisms believed to contribute to the pain, color changes, and temperature changes all can, in theory, be directly affected by certain hormones (adrenalin) released during stress and emotional distress. While patients cannot control whether they have CRPS, they can learn techniques to control their stress responses, which in turn can reduce pain intensity.

The most common approach to psychological treatment for chronic pain is Cognitive Behavioral Therapy (CBT). Psychologists and other mental health practitioners who employ CBT typically use a variety of specific techniques. The goal of reducing pain intensity often can be achieved by learning relaxation techniques that reduce emotional distress and control the stress response. These may include breathing relaxation (slow patterned breathing), progressive muscle relaxation, and imagery (ie, creating a detailed mental image of a relaxing place). The effectiveness of these techniques often can be increased by combining them with biofeedback, in which moment-by-moment changes in the body's stress response (reflected in muscle tension or finger temperature) , can be observed on a computer screen to help "fine tune" the relaxation response.

The "cognitive" part of CBT refers to the fact that our emotional reactions to a given life situation are determined by what we think ("cognitions" is another term for thoughts). For example, consider two individuals asked to speak in front of a large audience. The first, with a fear of public speaking, immediately starts thinking, "If I mess this up, I'll look like a fool!" and begins feeling very nervous. The second person is an actress, who thinks, "Great! An opportunity to perform" and feels excited. While the situation is identical, they respond with very different emotional reactions as a result of their styles of thinking. The essence of CBT is that styles of thinking become habits (eg, the eternal optimist versus the chronic pessimist) and more importantly, these habits can be changed. CRPS often leads to more pessimistic thinking. Negative thoughts may intrude repeatedly, such as "Why can't they cure this?;" "This is awful;" and "My life is over." Such thoughts lead to chronic emotional distress, which reduces quality of life, can increase pain intensity, and may contribute to the development of clinical depression or anxiety disorders.

Changing Negative Thought Patterns

The CBT therapist helps patients learn to identify their habitual negative thoughts and consciously modify them in a way that is more constructive and produces less distress. A patient may habitually respond to increased pain by thinking, "This pain is horrible and is never going to end," and consequently may feel miserable. The CBT therapist would help the patient learn a way to reframe the problem of pain exacerbations. For example, responding to increased pain by actively saying to oneself, "This is an opportunity to use my relaxation techniques, I can handle this," would lead to less distress and may in fact result in somewhat reduced pain.

Reframing helps patients learn to take the "glass half full" attitude towards their pain rather than the (more natural) "glass half empty" attitude. Learning to recognize and avoid other problematic styles of thinking is also key, including the tendency to dwell on and magnify negative things, ignore good things, and generally "catastrophize" one's situation. Other cognitive strategies used in CBT focus on recognizing what parts of the pain problem the patient can't control (eg, having CRPS, having certain physical limitations, how employers respond), and focusing attention instead on the aspects of the pain problem that can be controlled, such as how the patient responds to pain and limitations. With repetition, this active countering of habitual negative thoughts with more constructive thoughts can create new habits of thinking that contribute to long-term improvements in quality of life.

Behavioral Issues

CBT often addresses behavioral issues as well. Due to pain and physical limitations, patients may over time engage less and less in their previous life activities. While this may reduce pain short-term, by avoiding activities that could potentially lead to pain exacerbations, it ultimately can lead to a situation in which patients have nothing to focus on BUT their pain. Finding distracting and enjoyable activities that can be done within the CRPS patient's physical limitation is crucial for maintaining some sense of a "normal" and meaningful quality of life.

CBT therapists often serve as a coach to help patients identify suitable activities and overcome any barriers to those activities resulting from CRPS. Often this is done in conjunction with physicians and physical or occupational therapists. The CBT therapist may use cognitive techniques like those above to address issues such as fear of pain and fear of movement that may interfere with one's ability to re-engage in life. Beyond quality-of-life issues, it is also important to note that leading CRPS medical experts believe that avoiding disuse of the affected limbs and maintaining as normal an activity level as possible are keys to successfully managing CRPS symptoms.

While CBT is clearly not a cure for CRPS, numerous research studies in patients with a variety of chronic pain conditions indicate that it is effective for improving pain, mood, and function. CBT is a "self-management approach" to chronic pain; its techniques require patient effort for them to work and the focus is on managing, rather than curing, the condition. Patients focused exclusively on externally applied "cures" (eg, sympathetic blocks) are unlikely to benefit from CBT until they are willing to alter this treatment focus.

Some patients may feel that CBT's implied focus on acceptance of their chronic pain, and working within this, means that they are "giving up the fight" and that this will reduce the possibility of a cure. However, CBT is actually emphasizing the focus on battles that are winnable in order to win the larger war, to have a better quality of life. Appropriate medical and functional therapy treatments typically continue while patients are engaged in CBT, with the hope that these treatments will all work together to produce the desired outcome.

Once CBT pain management skills are learned, they can be applied any time and in any situation. Thus, the patient always has effective pain management tools. In many people, CBT can effectively reduce the reliance on medications and other medical interventions and live a fulfilling life despite CRPS. If you are interested in pursuing CBT pain management treatment, you should discuss this possibility with your medical provider.

Stephen Bruehl, PhD, is an Associate Professor of Anesthesiology at Vanderbilt University School of Medicine in Nashville, Tennessee. Dr. Bruehl serves on the RSDSA Scientific Advisory Board.

http://www.rsds. org/1/publicatio ns/review_ archive/BruelCBT .html

HOPE Rekindled

2009-04-19T16:09:00.000-07:00

HOPE Rekindled

Expect to have hope rekindled. Expect your prayers to be answered in wondrous ways. The dry seasons in life do not last. The spring rains will come again.

—Sarah Ban Breathnach

Ahhh, a Sunny Bright Day...

2009-04-18T17:14:00.000-07:00

Well our week started with high winds and a 20 degree drop in temperatures that always affects my nervous system and sent me crashing for the rest of the week. This body was all messed up. Finally yesterday I started feeling better and today well our temperatures are absolutely springtime lovely and I am so enjoying it. I went out this afternoon and planted a couple plants.

Now it's rest time for this body, mind and soul.

Blessings,
Belle

God is Always There

2009-04-13T20:21:00.000-07:00

This is so beautifully written I wanted to share...
hugz, Belle

God is Always There

Our Heavenly Father is always there
He knows our sadness and despair
And if we would just call on Him
He will always hear our prayer.

When in our life those srtuggles come
And we tend to feel so alone
Our Fathers watching from above
With compassion and such love

He knows our every weakness
He sees us when we fail
And yet His perfect love for us
He continues to unveil

He loves to see our child like faith
As we kneel beside our beds
And share our hurts and broken dreams
Before we lay down our heads

So when you are discouraged
And you think that no one cares
Just give it all to God above
Because He's always there.

Easter Joy

2009-04-11T12:42:00.000-07:00

Easter is such a joyous holiday as without our Lord's death WE wouldn't have the life that we do today. Easter Blessing, Belle

Easter Joy

Jesus came to earth,
To show us how to live,
How to put others first,
How to love and how to give.

Then He set about His work,
That God sent Him to do;
He took our punishment on Himself;
He made us clean and new.

He could have saved Himself,
Calling angels from above,
But He chose to pay our price for sin;
He paid it out of love.

Our Lord died on Good Friday,
But the cross did not destroy
His resurrection on Easter morn
That fills our hearts with joy.

Now we know our earthly death,
Like His, is just a rest.
We'll be forever with Him
In heaven, where life is best.

So we live our lives for Jesus,
Think of Him in all we do.
Thank you Savior; Thank you Lord.
Help us love like you!

By Joanna Fuchs

and it really does feel like this

2009-04-09T20:33:00.000-07:00

A World of Hurt: In Workplace Injury System, Ill Will on All Sides

2009-04-07T08:43:00.000-07:00

A World of Hurt: In Workplace Injury System, Ill Will on All Sides

By STEVEN GREENHOUSE
The NY Times

TONAWANDA, NY-The sprawling DuPont plant along the Niagara River here can be a grim place, but less so on the days when the company hands out coupons to reward workers for a few weeks without injury.

Called "safety bucks," the coupons look like real money and can be redeemed at Red Lobster, Home Depot and several other businesses in the area.

For some workers who risk their fingers and bones to make Corian, the stonelike countertop material that is the plant's major product, the coupons have become a modest blessing and benefit. But other workers regard them as a curse, as a way to mobilize peer pressure against workers who might consider reporting an injury.

"You know that if you report an injury, everybody says, 'You son of a bitch,' " said Dan Austin, who worked at the plant for 30 years. "I've heard people say, 'So-and-so reported an injury and it's going to cost us our safety bucks this month.' "

Companies across the state have recently introduced reward programs to curtail injuries, in part to keep their workers safe, in part to cut down on workers' compensation claims, which managers cite as a huge factor in the high cost of doing business in New York.

"There are an awful lot of situations where people aren't truly injured on the job," said Gregory Harden, the president of Harden Furniture, a 380-employee company based in McConnellsville. "I tend to be a little cynical. Monday is always the day with the highest injury rate for us. Someone comes in on Monday, and their back is really sore for whatever reason, and they end up missing a few weeks of work."

The state's multibillion-dollar workers' compensation system is plagued by many shortcomings: endless delays, suspect doctors, and a rudimentary form of justice that prevails as employees and employers seek to survive.

But perhaps the most powerful way to appreciate how the system has failed is to see what it has done to New York's workplaces. A century ago, when the state created its workers' compensation system, the goal was a no-fault insurance program that would foster workplace harmony by resolving disputes over injuries without litigation or recrimination.

Today, however, employers and employees are still at war over workplace injuries, a war marked by mistrust and fear. Each side is angry; each side has its own powerful evidence to justify that anger.

Workers say companies are going to extraordinary lengths to cut back on claims: contesting injuries, checking on workers at home, even firing those who file for benefits.

Employers say that the compensation system is so expensive, so riddled with fraudulent claims, that they need to take aggressive steps to curb their costs. A single injury can easily cost $10,000, and sometimes several hundred thousand dollars when a badly maimed worker draws benefits for life.

Though no independent study has established that claimant fraud is rampant, many executives say the system is skewed against them by judges who favor claimants and by malingerers who collect benefits when they are well enough to work.

The state is putting reforms in place to reduce costs for companies and ease tensions in the workplace, but it remains unclear how much they will help. And the economic downturn has only added to the pressure to control costs.

So to cut back on claims, some factories are using scoreboards to record days passed without an injury. Some companies reward workers who report no injuries with a banquet featuring a lottery with a cash prize. Other plants play safety bingo: if there are enough consecutive injury-free days, one worker gets bingo and wins a cash jackpot.

"It keeps everybody's mind on safety because every day when they come in, that bingo board is right next to the time clock," said Ed Prunier, safety manager at Ball Metal Container in Saratoga Springs.

Some companies are also using a less fun-filled program, known as progressive discipline. At the DuPont plant here, workers face five progressive steps when they suffer repeated injuries deemed to be partly their own fault: verbal warning, written warning, probation, five-day suspension and dismissal.

"There's like a philosophy that unless your arm is falling off, don't tell anybody, take the pain, don't go the emergency room," said Jerry Graves, a DuPont machine operator who injured his thumb. "Say you smashed your finger with a hammer at home."

Experts say it is difficult to estimate how often employers in New York retaliate against workers who file compensation claims because there is no tracking of such data. But several studies have found that the perception of widespread retaliation has contributed to the decline in the number of compensation claims in New York and nationwide in recent years.

"There are lots of people out there who aren't filing claims because it's not worth the hassle and because of the fear of retaliation by the employer," said Leslie Boden, a professor of public health at Boston University.

Legal experts say New York makes it easy to fire workers who file claims. The law bars retaliation, but states that as long as an employer has a "valid reason," like a prolonged absence, the firing is legitimate.

Some of the workers most affected by efforts to curtail claims are immigrants, who make up an increasing part of the state's blue-collar work force. Many of them do not know about the compensation system, and when they get hurt, their employers often pressure them not to apply for benefits, worker advocates said.

"Their bosses tell them, 'Don't go to the hospital. Don't say it happened at work. I'll take care of you. I'll take care of your medications.' " said Gonzalo Mercado, executive director of El Centro del Imigrante, a workers' center on Staten Island. "In most cases, the employer never does any of that."

Gerver Lopez, for example, was putting up aluminum siding in May 2007 when the scaffolding broke and he fell to the ground, hurting his spine.

Mr. Lopez, an immigrant from El Salvador, could not get up. He said his boss shouted: "Don't call an ambulance. I don't want no trouble. I have 30 houses to do, and I don't want to lose any of them."

An uncle drove him to Nassau University Medical Center, and doctors there told him that he would never walk again, he said. By the time his two-and-a-half-month stay ended, his medical bills topped $45,000.

Now 22, he remains paralyzed, and is supported by his mother, a waitress.

"The boss said he was going to pay for everything and I shouldn't say anything," Mr. Lopez said. "He didn't give me a penny."

Hurt on the Job

Fred Willette followed his father into metal grinding, a world of dangerous dust and deafening noise.

At Kodak, where he worked for several years, a machine would collect the dust spun off by his efforts. But when he took a similar job at Addison Precision Manufacturing, a metal-parts factory in Rochester, he said his new bosses did not want to spend the $3,000 for such a machine.

"They said, 'All we have to do is provide you with a dust mask,' " Mr. Willette said.

So for seven years, he said, he did what he was told, grinding tools that are used to make parts for rockets, snowmobiles and medical equipment.

Then the shortness of breath began. One day he passed out and was rushed to the emergency room, the first of several trips. The doctors initially thought it was asthma. But on a return visit, a doctor asked him what he was grinding. "Tungsten carbide with cobalt," he replied.

It turned out he had hard-metal pulmonary disease, which, like black lung disease, can be hobbling, even fatal.

Mr. Willette said that in March 2000 he told his bosses he was going to apply for workers' compensation to tide him over until he recovered. They fired him the next day, he said, a position the company disputes.

"They were saying: 'You're a liability. You're getting all these people involved. We don't need you,' " he said. He was 48 at the time.

Robert Grey, a claimant lawyer, said New York's law against retaliation "is close to useless, both as a deterrent and a remedy."

The courts have said employers can fire a claimant who misses too many days or if they need to hire someone to do the claimant's work. As a result, lawyers seldom pursue retaliation cases, said Michael T. Berns, a member of the state Workers' Compensation Board until last June. "The burden of proof is with the claimant," he said. "It's a very difficult burden."

Some states take a tougher stance. In Oregon, claimants retain the right to be reinstated to their job within three years of filing a claim, so long as they are still able to do the job.

Mr. Willette said that even after he was dismissed, the company challenged his claim. A private investigator for its insurance carrier began parking outside his house and trailing him to the doctor and the supermarket, he said.

"At first we thought it was the police," Mr. Willette said. "But the cops said, 'He's a private investigator watching you.' "

Rodney Champagne, one of the owners of Addison Precision, declined to discuss Mr. Willette's case. "I'm not really interested," he said.

But the company's insurer said in official filings that the lung disease stemmed largely from smoking, not metallic dust. The company's chief executive, Robert Champagne, said during the compensation trial that he was concerned about his workers' safety and that Mr. Willette had not been fired for filing a claim. He was sent home, he said, because he was upset and shaky at work and had not brought in a requested note about the medication needed to control his stress-related seizures.

After leaving Addison, Mr. Willette held a few lower-paying jobs for a few months, but his breathing did not improve, and he slipped into a depression for nearly a year. He felt too short of breath for his favorite pastime, fishing.

Now he spends his days watching television. Occasionally he visits his father, gathering strength to go out for an hour or two by using an oxygen tank at home.

He now receives benefits, $278 a week. But because the company challenged his claim, those benefits did not start until 18 months after he was let go.

"You feel very low from what they put you through," he said. "They try to grind you down."

Fearing Fraud

As the sixth president in the Curtis Screw Company's 100-year history, Paul Hojnacki wants the company to survive another century in Buffalo, the city where it was founded.

But Mr. Hojnacki is so angry about the state's workers' compensation system that he sometimes talks of moving the factory, which makes precision auto parts. He denounces the delays in settling cases, complains about the "pro-worker judges" and about the way some employees, he said, are allowed to milk the system. Most of all, he indicts the costs.

Curtis Screw, he said, spent $4,900 per employee in 2007 for workers' compensation coverage for its 220 workers, more than 10 times what it cost at its factory in Cornelius, N.C.

"The cost of this monstrosity," he said of the system, "has to be taken into consideration because it's driving businesses out of New York State."

Mr. Hojnacki said the compensation bill represents 2.5 percent of the Buffalo plant's revenues, at a time when manufacturers often have profit margins of 3 percent. At the plant, where wages average $15.50 an hour, compensation costs translate into $2.50 for every hour that employees work, he said.

One of the reforms the state has pushed through in recent years reduced compensation premiums for many companies by 20 percent, but Curtis Screw self-insures, so it has yet to see any savings.

"New York State, prior to the reform, was one of the most expensive states in the country for workers' comp," said Kenneth Adams, the president of the Business Council of New York State. "With these reductions in premiums, the cost of workers' comp for most employers has fallen into line with the average of other states. But if you're in manufacturing, it can still be a significant cost."

Mr. Harden, whose family-owned furniture company was founded in 1844, bridles at paying $1,800 per employee for compensation insurance. He complains that a compensation judge in 2004 ordered his company to pay $400 in weekly death benefits for life to the widow of a driver who died of pneumonia while making a delivery in Texas.

"It wasn't from anything on the job," Mr. Harden said of the death. While acknowledging that some compensation was in order, he said, "we feel the terms of our payments are excessive."

Mr. Hojnacki says he is similarly upset by the $200,000 his company pays out annually to 15 former employees who have been classified as having permanent partial or permanent total disabilities. Nearly all of them, he said, were terminated for poor performance, then filed for compensation.

"We have 15 people that we terminated that we cut a check to every week, some that date as far back as 1993-94," he said. "It's absolutely ludicrous. Even with the workers' comp reforms, this legacy cost we literally have to pay until these people pass."

The Buffalo factory self-insures because Curtis Screw finds it cheaper to pay its compensation costs itself, rather than use an outside insurer. Mr. Hojnacki said his yearly compensation expenses include $850,000 to cover medical expenses for current workers, replacement wages for those workers and state assessments to finance the comp system.

Mr. Hojnacki cited a machinist who worked at Curtis Screw for several years and then filed a claim for a back injury.

"We did surveillance on him," Mr. Hojnacki said. "We had a videotape where this individual was doing work on his house, lifting sheets of drywall and carrying them around and taking them from the outside to the inside by himself. We took it to the judge. The judge ruled, 'We find that the individual was having a good day.' "

The worker was classified as having a permanent partial disability, for which, Mr. Hojnacki said, the company pays him $400 a week.

"The workers' comp judges are totally sympathetic with the workers," he continued. "One judge told me, 'It's workers' comp. It's not employers' comp.' "

One reason that Curtis Screw's costs are so high, Mr. Hojnacki acknowledged, is that his company has so many injuries, including a half-dozen workers who have had costly surgery for carpal tunnel problems. None of his workers in North Carolina have ever received compensation for such an injury, he said.

"We have 25 injuries each year, and of the 25 the vast majority are legitimate situations where people scrape a finger or slip or twist a knee," he said. "The vast majority of workers, they can't wait to be released from workers' comp and come back to work. For them, workers' comp is exactly what it should be - it compensates them for the short period they're out. But then there's this small group of employees that play the system."

Mr. Hojnacki said that with his company facing competition from China, high energy costs and a devastating downturn in the auto industry, it cannot afford to be saddled with illegitimate compensation claims.

"It's just devastating that you can have people who take advantage of the system," he said. "They are taking money that we could be sharing with other workers."

Safety Pays

At FTT Manufacturing in Geneseo, the safety bingo pot starts at $25 and increases $2 for every day without an injury. Each day a number is drawn, and workers keep tabs on their game cards.

If someone gets bingo after 20 days, the winner receives $65, but the pot continues to grow until an injury is reported. The maximum pot is $150.

"We didn't want to give them something cheesy - where people say 'big deal,' " said Wade Smith, co-director of FTT's safety programs.

Within a year of introducing the game, he said, injuries fell by a third at the company, which makes high-precision parts for many industries.

The game was set up for FTT by an outside firm, Safety Pays, which has sold bingo games to more than 3,000 companies and is converting the clamor over compensation costs into profits.

Safety Pays provides a format for the game, plus bingo boards, cards, balls and "Winner's Circle mini-posters."

"The individual," Safety Pays says in its advertising brochure, "who at one time alleged the occasional 'backache' in order to get a couple of extra days off will be hard-pressed to do so when his co-workers are anticipating a financial windfall by winning a jackpot."

Mr. Smith said injured employees are never subjected to more than some good-natured "locker room pressure."

But many safety advocates and labor unions are worried about the growth of such programs, which the Occupational Safety and Health Administration considered banning in the 1990s.

Robert K. McLellan, former president of the American College of Occupational and Environmental Medicine, told the House Education and Labor Committee last year about a worker who told his doctors he had hurt himself at home when the injury had really happened on the job. The worker later admitted lying because he did not want his co-workers to lose a promised steak dinner.

Last year, the committee's staff criticized these programs, saying in a report, "Since workers are human and inevitably make errors, the consequence of rewards or punishment is often a failure to report incidents, rather than a reduction of injuries."

Seth Marshall, founder of Safety Pays, says the games promote healthy peer pressure that increases everyone's focus on safety and discourages workers from reporting fraudulent injuries.

At the DuPont plant here, officials base performance bonuses in part on how many injuries occur at the plant. But they say they never want to deter the reporting of legitimate injuries.

"All safety incidents, regardless of size, are to be reported and investigated," said Beth Turner, DuPont's director of global operations safety, health and environment.

Wendy Hughes, however, says she believes DuPont punished her when she crushed her thumb one day in 2002. The brakes of her forklift failed, she said, and when she tried to stop the forklift with her leg, her thumb got caught between it and a cabinet.

Doctors did a bone graft and inserted six pins in her thumb. She said DuPont seemed eager not to have her report a lost-time accident to OSHA, so her supervisors ordered her to return to the factory directly from the emergency room.

Ms. Hughes said she was not given any days off to recuperate. Instead, she was ordered to spend her days biding time in the factory's break room. When other workers complained about seeing her there, she said management ordered her to spend each day inside a four-by-six closet where protective work clothes were stored. DuPont declined to discuss her case, citing privacy concerns.

"All my co-workers started saying things like, 'We're not going to get any performance-based bonus,' " she recalled. " 'There go our safety bucks for the quarter.' "

http://rsds.org/5/news/2009/April/NYTimes_2_174.html

I wonder 2007

2009-04-05T08:54:00.000-07:00

I wanted to share another poem with all of you that is written by my dear friend who also lives with CRPS/RSD.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
i wonder 2007

i wonder why the nights are the worst

that is when i feel so alone

lost in my own dark thoughts that haunt me.while the world sleeps.

i wander back in time so long ago..before i ever heard of this horror called crps.

my body burns in pain

my arms and legs just ache..with a pain i can't explain.

i twist and turn trying to find a space of my own to curl up in.where is it ?

i can view the street lights outside and know there are so many others sleeping in no pain.

waiting for the light of day to wake and start their day.

i hate to hear their cars start while they make their way to an outside world i never see.

my tears just flow and soak my pillow..i don't fit in their world anymore.

my soul feels so empty,my heart so heavy.the feelings i have i can not hide.

i want my life back..but it shall never be.

i wonder

if there are others like me not sleeping or alone like me?

east coast west coast it matters not.

i wonder

could we just talk? but i know we can't..so i will take more pills and try to sleep

even a few hours will do.

dear GOD.my one true father

please help my heart and soul.

it is so awful being alone.

another night of pain and tears.please hear my prayers

also please watch over those i love EVEN

if they never understand..

i KNOW you do

amen

LINDA

One of Those Days...

2009-03-31T11:10:00.000-07:00

Today, wow I just can't get going or wake-up and well uh yes I am hurting from head to toe. What is up with that? I have a stack of bills to pay and piles of laundry to do and just am having a hard time getting focused to do any of those. Plus, my putty tat is so vocal and wants to be with me in everything I am doing.

The last few days I've felt wonderful, so I was so shocked when I could barely get out of bed today. So it will be the type of day that what gets done, well gets done and I won't worry about the rest. Just can't!

that tomorrow WILL be a better day!

Talk to Me

2009-03-29T09:19:00.000-07:00

This poem was written by my dear friend Linda and speaks volumes.

Talk to Me

Come talk to me.
I am just like all of you with rsd.
Lost in a world of pain that only we can feel.
We try so hard everyday to fight the fight of pain.
That no one can see or feel but us alone

We all cry.
We want to laugh
We don't want pity or I'm sorry
We just want to be understood.

I am scared are you too?
That we may never be understood by those who love us.
Oh, they try to help but they can't
for they will never know what we want.
That we only ask for love and some understanding.

Please never give up,
for we all share a very special gift.
I call it compassion.

I offer you my ear to listen,
My hand to hold,
Tissues to wipe your tears away,
but most of all my prayers understanding and love!

linda..2005

our getaway

2009-03-25T20:10:00.000-07:00

I'm pondering over what I need to take, what I can't forget and what I might need in all situations. This packing at times, can be the pits as it seems as though I have to pack everything including the kitchen sink.

Does anyone else feel that way when they are packing to go someplace?

So you might ask... where ya going? We are going back to one of our favorite spots and that is Bodega Bay, CA. You see we first went there on our honeymoon and now just can't seem to get enough of the scenery, the tranquility and the beauty.

Take a step in and stay away; listen to the crashing waves and make yourself happy.

The National Pain Care Policy Act 2009, S.660, has been introduced in the Senate

2009-03-24T08:44:00.001-07:00

The National Pain Care Policy Act 2009, S.660, has been introduced in the Senate

Source: American Pain Foundation

Your continual support as Consensus Endorsers has been instrumental in moving the National Pain Care Policy Act of 2009, H.R. 756 forward in the House of Representatives. Currently the bill is pending the full vote of the House. We will keep you informed of its progress.

This bill has now been introduced in the Senate thanks to the efforts of Senator Orrin Hatch (R-UT) and Senator Christopher Dodd (D-CT). With this important bill now in both houses of Congress it is imperative that your members contact their Senators. Please distribute the following message to members of your organization.

CURRENT ACTION REQUEST

Let your voice be heard! TAKE ACTION now by sending a letter to your Senator urging them to co-sponsor this critical pain legislation! This bill will make pain care and pain management a public health priority for the 76.5 million Americans who are suffering with persistent chronic pain and will improve the understanding, assessment and treatment of their pain. It is critical that this important legislation be passed by both the House and the Senate during this Congressional session. Our Online Advocacy Center will send your message for you. It is quick and easy, just click here to TAKE ACTION! To view the National Pain Care Policy Act of 2009, S. 660, please click here.

Encourage others to TAKE ACTION by forwarding the request below to your members NOW. Ask your members to immediately contact their Senators and urge them to co-sponsor this legislation. It is critical they demonstrate to the residents of their state that they are taking action to address the hidden pain epidemic which creates tremendous suffering for individuals and families, and is driving up healthcare expenses, lost income and lost productivity.

There is strength in numbers! Thank you for being part of this united effort to eliminate the under-treatment of pain in America.

Feel free to copy and paste this message to send to your members:

GOOD NEWS: The National Pain Care Policy Act 2009, S.660, has been introduced in the Senate!

CONTACT YOUR SENATORS TO REQUEST THEIR CO-SPONSORSHIP OF THE NATIONAL PAIN CARE POLICY ACT of 2009, S.660

The National Pain Care Policy Act of 2009, H.R. 756 has been in the House of Representative since January of this year. It is currently pending the full vote of the House.

This bill has now been introduced in the Senate thanks to the efforts of Senator Orrin Hatch (R-UT) and Senator Christopher Dodd (D-CT). With this important bill now in both houses of Congress it is imperative that your Senators hear from you. Let your voice be heard! Take Action Now, inform your Senators that you are concerned about the hidden pain epidemic in our country and as a resident of their state you are requesting their support as a co-sponsor.

To view the National Pain Care Policy Act of 2009, S.660, please click here.

Please TAKE ACTION by sending a letter to your Senator urging their immediate support for this important legislation! Our Online Advocacy Center will send your message for you. It is quick and easy, just click here to TAKE ACTION!

There is strength in numbers! Encourage others to TAKE ACTION! Forward this message to a friend!

Thank you for being part of this united effort to eliminate the under-treatment of pain in America.

http://action.painfoundation.org/site/MessageViewer?em_id=9141.0&printer_friendly=1

This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here.

RSDSA Privacy Policy

RSDSA Home Page

2009-03-22T13:28:00.000-07:00

A Positive Attitude Is 'Sweetness to the Soul'

2009-03-20T18:40:00.000-07:00

A positive attitude brings on a great challenge when you live with chronic pains such as I do BUT it is one of the many things that helps keep me going on the right foot with my coping skills. Thus my reasoning for sharing this article with all of you. Hugz, Belle

The power of the word is real whether or not you
are conscious of it. Your own words are the bricks
and mortar of the dreams you want to realize.
Behind every word flows energy.
-Sonia Choquette

From "Fit for God," by La Vita M. Weaver:

Proverbs 16:24: "Pleasant words are honeycomb, sweetness to the soul and healing to the bones." In other words, if you want good health, start speaking good health. Stop saying, "I can't do it." If you want to overcome the battle of the bulge, start speaking as if you will overcome the battle of the bulge. Start speaking words of life, words that are sweet to your soul and health for your body. Speak it, knowing God is there to help you achieve your goal....

Just as positive speaking works, so does negativity. Remember, the Bible says life and death are in the power of your tongue. So you have to be careful not to let negative words proceed from your mouth. I can remember speaking negatively about my weight and myself then acting upon what I spoke. I can remember thinking, "I'm fat and I'll never lose this weight." And guess what? I stayed fat and I didn't lose the weight. It seems logical that if I thought I was fat, I would do something about it. But instead if I was disappointed with what I saw when I stepped on a scale, I'd complain and immediately grab a large bag of chips. Cheetos, cookies, cup cakes, ice cream, or all of them at one sitting. My negative attitude and the negative words I spoke from my mouth had the same power as the extra calories I ate.

I didn't begin to see positive results until I developed a more positive attitude and learned how to allow positive words to proceed from my mouth. This concept also applies to your thoughts, for the bible says as a man thinketh so he is. Begin to fill your mind with positive thoughts... Put these thoughts into your mind, and then speak them aloud:

"I know I will lose and keep it off."

"I know I will succeed."

"God is here to help me."

"My body will be fit and healthy."

"I will be set free from my bondage with food and this `body trap.'"

Although you may not feel or even believe what you are saying right away, if you keep on saying it, you will eventually believe it and act upon it...If you're having trouble fully believing, you can be honest with God and tell Him you need help. As your faith gets stronger, you will automatically begin to take the necessary steps to achieve your healthy new body.

What Stress Does to Your Body

2009-03-18T20:44:00.000-07:00

What Stress Does to Your Body

The human body is well adapted to deal with short-term stress, but if it remains on orange alert for an extended period of time, you can grow vulnerable to some serious health problems. Here's how major systems respond to your worries.

NERVOUS
The "fight or flight" response begins here: When you're stressed, the brain's sympathetic nerves signal the adrenal glands to release a chemical variety pack, including epinephrine (aka adrenaline) and cortisol. Persistently high levels of these chemicals may impair memory and learning, and up your odds for depression.

ENDOCRINE
Stress hormones trigger the liver to produce more blood sugar, to give you that kick of energy in the moment of perceived danger. But if the "danger" you're concerned with is a long-term dilemma and you're already at risk for type 2 diabetes, bad news: Elevated glucose levels may turn you into a card-carrying diabetic.

RESPIRATORY
At high-stress moments, you may find yourself breathing faster, feeling short of breath, or even hyperventilating. Over the long term, this strain on the system can make you more susceptible to upper-respiratory infections (so if you're considering a career in air-traffic control, you might want to stock up on Emergen-C).

CARDIOVASCULAR
Momentary, acute stress, like, say, when you're walking down the aisle to get married, will make your heart beat faster and blood pressure rise. Long-term stress, like unwelcome pressure from the folks to produce offspring, can cause narrowing of the arteries and elevate cholesterol levels, upping your chances of heart disease, heart attack, and stroke.

REPRODUCTIVE
Stress can lengthen or shorten your menstrual cycle, stop it altogether, or make your periods more painful. High levels of stress make bacterial vaginosis (BV) more likely and, during pregnancy, may increase the chance of your baby's developing asthma or allergies later in life. Bring on the prenatal yoga.

IMMUNE
Short-term stress can actually boost the immune system, helping your body fight infection. Ongoing stress, however, turns things in the other direction, possibly slowing wound healing, leaving you more susceptible to infection, and worsening skin conditions such as eczema, hives, and yes ? acne.

DIGESTIVE
Extreme stress isn't unlike the morning after a bender. It can cause dry mouth, indigestion, nausea, and gas, and it stimulates the muscles of the intestines, possibly causing diarrhea or constipation. Have these symptoms chronically, and you may increase your risk for irritable bowel syndrome, severe heartburn, and ulcers.

MUSCULOSKELETAL
Muscles tense to deal with what your body perceives as danger. No one who's pulled an all-nighter with only PowerPoint for company will be surprised that constantly tight muscles can cause headaches and neck, shoulder, and back pain. Chronic stress may also increase your likelihood of developing osteoporosis.

www.webmd. com/balance/ stress-man ... mls_010209

Daily Word-- Laughter

2009-03-17T12:35:00.000-07:00

I really believe in laughter and incorporate it into my life each day.

Daily Word — Tuesday, March 17, 2009

Laughter

I release the gladness of my soul into the environment.

It's been said that, on average, children laugh up to 300 times a day while adults laugh only 15 times a day. In reality, however, there is no age limitation on laughter.

If I want to feel younger and look younger, then it's only natural that part of my daily routine is to laugh more. Laughing gives the muscles of my face, chest, and abdomen a workout. A hearty laugh stimulates my heart rate, causes me to breathe deeply, and releases happiness hormones, my endorphins.

Laughter is one of the ways I express my gratitude to God. As I laugh, I release the gladness of my soul into the environment- -creating something that's good for me and good for all those around me.

"Then our mouth was filled with laughter, and our tongue with shouts of joy; then it was said among the nations, 'The Lord has done great things for them.' "--Psalm 126:2

www.dailyword. com

2009-03-15T09:18:00.000-07:00

Have you ever wondered if the wind never blew, what our environment would be like?

To exist is to change, to change is to mature, to mature is to go on creating oneself endlessly... ..

Optimism

2009-03-14T20:27:00.000-07:00

The first step towards the solution of any problem is optimism....

and with Optimism you're more likely to succeed when living with Chronic pains.

Ohio Members: Send an E-mail Asking Your Senator to Support SB 54, the CRPS Education Act

2009-03-13T18:41:00.000-07:00

Ohio Members: Send an E-mail Asking Your Senator to Support SB 54, the CRPS Education Act

Send an e-mail asking your state senator to support SB 54, a Bill which will designate November as "Complex Regional Pain Syndrome Awareness Month" and to require the Department of Health to include on its web site information regarding the syndrome in Ohio.

Click here to read SB 54, the CRPS Education Act

Click here to find your senator by name

Sample Letter

Dear ____________:

I am contacting you today to respectfully ask that you post Senate Bill #54 for a vote in the Senate Health Human Services and Aging Committee.

Senate Bill 54, the Complex Regional Pain Syndrome (CRPS) Education Act, is a piece of legislation that will help promote awareness of Complex Regional Pain Syndrome (CRPS), more generally known as Reflex Sympathetic Dystrophy (RSD).

CRPS is a chronic neurological syndrome whose symptoms include severe burning pain and extreme sensitivity to touch. Although this syndrome was first diagnosed during the Civil War, many health care professionals still do not fully understand this syndrome. For those who develop CRPS, early diagnosis is the key to a positive medical outcome. CRPS can become very debilitating.

To date, five states have already enacted this legislation; New York, Pennsylvania, Delaware, Michigan and most recently, New Jersey. This bill does not include an appropriation and will not cost the state any additional money to enact. It simply sets up an education program in the Department of Health where health care professionals and the general public can go to for information about diagnosis and treatment of this disease and establishes November as "Complex Regional Pain Syndrome Awareness Month."

While there are many important health care issues currently facing Ohio, to the estimated 1.2 million Americans who are suffering from CRPS, enacting this simple, no-cost piece of legislation will show that the State of Ohio is willing to take action to aid those suffering from this disease.

For more information on CRPS, please feel free to contact the Reflex Sympathetic Dystrophy Syndrome Association website, www.rsds.org for more information about this syndrome. I thank you for your attention and look forward to working with you in the future on behalf of the estimated 1.2 million Americans who live with CRPS every day.

Sincerely,

Your name
Address

http://rsds.org/4/awareness/Advocacy/OhioAlert_03132009_172.html

RSDSA Privacy Policy

RSDSA Home Page

For Grace Sponsors CA bill to Benefit Women In Pain

2009-03-12T10:30:00.000-07:00

Dear All,

Pleased to announce that For Grace is sponsoring a California bill, AB 1144, that if signed into law by Gov. Schwarzenegger will abolish the "fail first" prescription practice by health insurance plans and companies. The bill is authored by Assemblyman Curren Price.

"Fail first" policy requires a woman in pain to try less expensive medications than what her physician prescribes, and these meds must fail first - at the cost of her health - before finally being authorized the medication originally prescribed.

AB 1144 will be heard in committee just after Spring break - and we at For Grace look forward to sheparding the bill to the Gov's desk.

Today, Ms. Toussaint spoke at a press conference in downtown Los Angeles at the LA County Medical Association's headquarters about the unethical "fail first" practice - and its impact on the Women In Pain community. The event was covered by CNN, KFI-AM radio and Southern California Physician magazine.

Please visit For Grace's Flickr site for photos of this and other recent advocacy efforts: http://www.flickr.com/photos/forgrace/

Best,

John Garrett

Director, For Grace

For Grace

Dedicated to Ensuring the Ethical and Equal Treatment of All Women in Pain

forgrace.org

A Therapist's Perspective on Treating CRPS

2009-03-11T16:47:00.000-07:00

A Therapist's Perspective on Treating CRPS

By Melanie Swan, OTR/L
The Pain Practitioner. Fall 2007.

Neuropathic pain is characterized by a dysfunction or disease within the peripheral or central nervous system. It involves damage to nerve tissue, typically from injury or metabolic dysfunction, leading to pain that is more intense and complex than usual for the injury and that usually persists beyond the healing time of the involved tissue. Typical symptoms of neuropathic pain include burning, tingling, numbness, electric shock or shooting pain, and allodynia.
There are several different categories of neuropathic pain:

Neuropathy: peripheral neuropathy (related to conditions such as diabetes or alcoholism) or entrapment/compressive neuropathy (such as carpal tunnel, cubital tunnel, radiculopathy, thoracic outlet)
Neuralgia: post-herpetic neuralgia (experienced after an onset of shingles) or trigeminal neuralgia (often known as atypical fascial pain)
Neuroma: a mass of neural tissue and scar after an injury, such as an amputation, or a tumor within the nervous system, that can be benign or malignant
Myelopathy: damage to the spinal cord as a result of compression or degeneration of the spine
Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD) or causalgia
Phantom limb pain

Most physical and occupational therapists are introduced to the pathophysiology and treatment of myelopathy, neuropathy, and neuroma during their clinical education process. Clinicians are also generally exposed to phantom limb pain, neuroma, and CRPS. However, few clinicians enter their practice with a strong repertoire of treatment approaches for CRPS.

CRPS: A Mysterious Condition

Complex Regional Pain Syndrome (CRPS) is often seen (by patients and practitioners alike) as a perplexing condition of unknown or unclear etiology. The onset of CRPS is frequently associated with trauma or nerve damage, but can also occur without previous injury or illness. Diagnosis is based on clinical signs and symptoms, and supported by diagnostic work. However, there are currently no diagnostics that clearly or objectively indicate absence or presence of CRPS.

Despite technical explanations from physicians, patients often do not fully understand their diagnosis of CRPS. Vast amounts of information are available via the internet, but the content and quality vary greatly. Patients who find articles related to a particular course of treatment may require explanation. Or, patients may read accounts of fellow CRPS patients who report becoming debilitated by their symptoms or who allege that ineffective medical management of their symptoms resulted in CRPS spreading to other areas of their bodies. Some patients become wary of healthcare providers after multiple encounters that have not improved their pain relief or function. All these experiences can fuel patient anxiety, particularly for those recently diagnosed.

Assessing CRPS

Much of the confusion surrounding CRPS stems from the array of treatment approaches associated with the condition and the limited awareness of CRPS among the general population. Many healthcare providers have some exposure to assessing or treating CRPS, but a smaller number have extensive experience in these areas. Much of the literature written on CRPS is confusing or contradictory and studies showing promising treatment results often do not hold up under randomized controlled trials. This can lead patients to have little confidence that one approach will be more effective than another. To add to the confusion, symptoms of CRPS are variable and patients may experience different symptoms at different stages in the syndrome.

The most common symptom of CRPS is unremitting pain or sensitivity that is more severe or lasts longer than the anticipated recovery time for the associated injury or illness. Other common symptoms include unusual or prolonged swelling and a feeling of burning or extreme coldness in the affected area. In addition, changes in physical appearance may become more obvious as the condition progresses. The skin over the affected area may thicken, may become tight or shiny in appearance, or may change color (presenting as bluish, purple, or mottled) as circulation to the area changes. There may be abnormal hair growth (darker, coarser in texture) to part or all of the affected area, as well as abnormal nail growth (thick, yellowed, ridged) resulting in even greater fear about the condition.

As the condition progresses, many patients begin to dissociate from their affected extremity, as if it no longer belongs to them. They may be self-conscious about the changes in physical appearance or unsure how to explain their condition to others when they don't fully understand it themselves. Unremitting pain increases underlying fear and anxiety of a more malicious, yet undiagnosed, disease process. This often results in increased guarding and disuse of the area. Hypersensitivity may lead patients to cover the affected extremity entirely to protect it from accidental touch or changes in temperature.

Diagnosis and Treatment

Physicians vary in their initial approach to diagnosis and treatment of CRPS. Though recent efforts to establish validated diagnostic criteria are underway, there is still sufficient ambiguity with clinical signs causing concern for over- or under-diagnosis of the condition. Once a clinical diagnosis has been made, physicians often initiate medication management or an interventional approach to address the associated symptoms. Many utilize a combination of approaches to interrupt the pain cycle and promote the return of function to the area.

Frequently, they will want to refer patients to physical or occupational therapists who will aide in maximizing functional outcomes. Then the hunt is on to locate a therapist familiar or experienced with treatment of CRPS.

Therapists less familiar with CRPS may not understand the subtle differences in treating CRPS versus similar symptoms associated with other conditions. Some interventions for edema management and range of motion limitations can result in a flare up or exacerbation of symptoms, thereby increasing patients' fear or anxiety and decreasing their confidence in the skills of the therapist. However, clinicians with limited experience in treating CRPS can still be effective in guiding their patients toward more functional outcomes by networking with more experienced clinicians.

A combination of treatments is often most effective in restoring function to the affected area and education is key to developing patient trust. Assessment of the affected area can be challenging due to the intensity of the pain and hands-on or objective measures may be limited by guarding. For physical or occupational therapists, evaluation should include a thorough visual inspection of the area, noting changes in appearance, muscle atrophy, abnormal movement patterns, and posturing. Ideally, measurements for edema and active range of motion should also be taken.

At the initial session, however, it may be more important to explain and educate the patient about CRPS and the evaluation and treatment process in order to establish rapport. Evaluation at this session may be limited to gross assessment of active range of motion and functional movement, while noting restrictions in movement due to guarding or edema. More formal evaluation measures for range of motion, coordination, strength, and edema can be taken at a subsequent session. It is also important to listen to how patients talk about their affected areas in order to better understand how they feel about themselves and their condition. This can be very useful in planning meaningful treatment activities and anticipating response to intervention (eg reluctance, fear, anxiety, or indifference).

Continuous education and positive reinforcement are critical to facilitate success with treatment. Equally important is helping patients identify or reframe what they consider to be a successful outcome. Is success defined by less pain regardless of improvement in function or is success defined by greater function without an increase in pain? Is success the return of a more normal physical appearance?

In addition, patients need to understand how the pain cycle that is occurring within their bodies is an abnormal pain response to sensations or stimuli that are not traditionally painful. As a clinician, you can facilitate better understanding of this by having patients apply a non-painful stimulus to a non-affected area and then to the affected area. This will demonstrate that an increase in pain is not necessarily an accurate indication of injury or harm. Ongoing education regarding expected responses to treatment is critical in maintaining trust, especially when increased pain or swelling may be a result of interventions.

Therapeutic Techniques

It's important for patients to understand and embrace their role in the recovery process. The therapist can coach, mentor, and design treatment, but if patients are unable or unwilling to follow through with regular participation in treatment exercises and activities outside of designated therapy sessions, the results will be minimal. Empowering patients to understand their condition and take control of treatment minimizes apprehension and builds rapport. The more actively patients participate in treatment planning and the more compliant they are with individualized home programs, the greater the chance they will regain function and manage pain. Engaging in or working toward functional activities that are most meaningful to patients can help them overcome fear of movement and distract them from the pain associated with the activity.

The stress loading protocol, published by Carlson and Watson, can be an effective tool for treatment and management of CRPS. Stress loading is comprised of two components: scrubbing and carrying. Each component engages the affected extremity in consistent weight bearing activities within a small range of movement for gradually increasing periods of time. These activities "load" the affected joints or extremity. This, in turn, provides inhibitory proprioceptive input to the nervous system, through the use of deep pressure. The key to stress loading is providing as much force or weight bearing as can be consistently tolerated during scrubbing and carrying, gradually increasing the frequency and duration of these activities throughout the day. Loading the affected area to tolerance and gradually increasing the frequency and duration of weight bearing activities enables the nervous system to acclimate to these stimuli. This acclimation progressively desensitizes the heightened pain response and allows the nervous system to "remodel" itself; the nervous system shifts from recognizing the stimulus presented as threatening, to accepting it as a normal sensation once again.

Scrubbing applies constant force through the affected area for progressively increasing periods of time without a break. Scrubbing for the upper extremity may be done with a towel or a hand-held scrub brush. The towel or brush is moved back and forth against a solid surface, as if scrubbing a stubborn stain off that surface. Scrubbing for the lower extremity may be done wearing a sock or by adding a strap to a deck brush to secure it to the foot. The sock foot or scrub brush is then moved back and forth against the floor from a standing or seated position. In order for scrubbing to have the maximum effect, consistent pressure must be maintained while moving the brush in both directions and the weight bearing as tolerated. The initial protocol for scrubbing calls for three minute scrubbing sessions, three times per day, gradually increasing in frequency and duration over a period of days or weeks, until ten to fifteen minutes of scrubbing can be tolerated at least three times per day.

Carrying involves toting a weighted object for increasing periods of time with the affected extremity or on the affected side, in order to provide "loading" to the area. Carrying weighted objects in a handled bag or briefcase is effective for the upper extremity. Walking and weight shifting can be an effective means of loading for the lower extremity. Creativity in treatment design can facilitate longer periods of carrying and distract from the painful task at hand (or foot!). Otherwise, inconsistent participation or frequent breaks during these activities can result in increased pain and lead to greater disuse of the affected area.
Desensitization techniques can be used to decrease hypersensitivity to cutaneous stimuli. Various textures or fabrics can be presented to the area, progressing from least noxious to most noxious, and consistent to intermittent application, to improve tolerance to light touch or pressure. The process may take several weeks or months to achieve tolerance of all stimuli. Desensitization to a particular texture or fabric may not mean that the stimulus that previously invoked pain now feels good. Desensitization typically enables a stimulus to be tolerated for longer periods with a lower pain response.

Success with desensitization may enable patients to be more flexible with choice of clothing items or to tolerate various bed linens during sleep. Temperature desensitization can be achieved by gradually varying air or water temperature to challenge tolerance to warm or cold. As with stress loading, these techniques should be performed for gradually increasing periods of time without a break.
Edema should be addressed with edema management garments (such as Isotonerâ gloves, Jobstâ garments, or Cobanâ wrap) and active range of motion. Passive retrograde massage and passive range of motion should be avoided initially as they can stimulate an inflammatory response resulting in greater pain and swelling, jeopardizing the trust between the patient and practitioner. Splinting may be necessary in severe cases of CRPS to maintain joint integrity and promote adequate circulation and nutrition to the tissues. However, once patients are able to achieve some pain management with a medication regiment and the use of stress loading and desensitization techniques, they can often actively engage in range of motion activities that promote improved circulation, increased movement and decreased swelling, thus minimizing or eliminating the need for edema management garments or splinting.

Active range of motion activities should be geared toward improving function with the affected hand, such as drinking from a cup, turning a doorknob, or using a knife. With the affected leg, activities can include pushing off for reciprocal stair climbing or fast walking. As guarding is decreased or eliminated and range of motion is restored, initiate strengthening. Education remains critical at this stage to guide the patients to appropriately dose and progress their rehabilitation programs and avoid "over-doing it." Continued support and reinforcement gives patients the confidence to challenge themselves consistently throughout the day. Finding the balance between enough and too much can enable patients to successfully resume activities in all areas of life: occupation, home, self, leisure, and community. Additional pain management techniques, such as biofeedback or relaxation and distraction, can also be useful in pacing activities and modulating pain response.

A comprehensive approach to CRPS treatment can facilitate restoration of function by empowering patients to manage their pain and understand their condition. Patients are able to stay motivated for treatment when they can maintain control of their own progress through collaboration with their therapists, when it comes to how much and how frequently to challenge their "comfort" zone to achieve their goals.

~~Melanie Swan, OTR/L is an occupational therapist and the former Clinical Manager of the Rehabilitation Institute of Chicago Chronic Pain Care Center. Her focus is on improving special functions related to work, home, and leisure. She has been a contributor to the RSDSA Review since January 2004 and is affiliated with the American Occupational Therapy Association and the Illinois Occupational Therapy Association.

Suggested Readings

Harden RN, Swan M, King A, Costa B, & Barthel J (June 2006) Interdisciplinary Management Complex Regional Pain Syndrome: Treatment Guidelines Reflex Sympathetic Dystrophy Syndrome Association.
Barthel J, Costa B, King A, Swan M, Harden RN. Treatment of CRPS: Functional Restoration. Clin J Pain. 2006; 22: 420-424.
Phillips ME. OT treatment for complex regional pain syndrome. OT Pract. August 20, 2001.
Phillips ME, Katz J, Harden RN. Occupational and block therapies for complex regional pain syndrome. Paper presented at: Midwest Pain Society—AOTA National Conference, 2000; Seattle, WA.
Carlson LK, Watson HK. Treatment of reflex sympathetic dystrophy using the stress-loading program. J Hand Ther. 1988;1:149-54.
Watson HK, Carlson L. Treatment of reflex sympathetic dystrophy of the hand with an active "stress loading" program. J Hand Surg. 1987;12A(5):779-85.
Galer BS. Complex Regional Pain Syndrome: New Hope After a Decade of Dispelling Myths. Pain Practitioner. 2006;16(1):32-38.
Ghai B, Dureja G. Complex Regional pain syndrome: A review. J Postgrad Med. 2004;50:300-307.
Raja SN, Grabow TS. Complex Regional Pain Syndrome I (Reflex Sympathetic Dystrophy) Anesthesiology. 2002; 96(5):1254-1260.
Wilson PR. Complex Regional Pain Syndrome-Reflex Sympathetic Dystrophy. Current Treatment Options in Neurology. 1999;1:466-472.
Swan M. Entering the Unknown: Putting together the pieces of the CRPS puzzle. Advance for Directors in Rehabilitation. 2005;14(3):29.

What is CRPS?

2009-03-11T15:26:00.000-07:00

Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy, is a chronic neurological syndrome characterized by:

* severe burning pain
* pathological changes in bone and skin
* excessive sweating
* tissue swelling
* extreme sensitivity to touch

[For a complete description of CRPS symptoms, please read the Diagnosis section of the Clinical Practice Guidelines section of this website.]

There are Two Types of CRPS - Type I and Type II

* CRPS Type I (also referred to as RSD) - cases in which the nerve injury cannot be immediately identified
* CRPS Type II (also referred to as Causalgia) - cases in which a distinct "major" nerve injury has occurred
* CRPS is best described in terms of an injury to a nerve or soft tissue (e.g. broken bone) that does not follow the normal healing path
* CRPS development does not appear to depend on the magnitude of the injury. The sympathetic nervous system seems to assume an abnormal function after an injury.
* Since there is no single laboratory test to diagnose CRPS, the physician must assess and document both subjective complaints (medical history) and, if present, objective findings (physical examination).

Criteria for Diagnosing

Complex Regional Pain Syndrome Type I (RSD)

* The presence of an initiating noxious event, or a cause of immobilization
* Continuing pain, allodynia, or hyperalgesia with which the pain is disproportionate to any inciting event
* Evidence at some time of edema, changes in skin blood flow (skin color changes, skin temperature changes more than 1.1°C difference from the homologous body part), or abnormal sudomotor activity in the region of the pain
* This diagnosis is excluded by the existence of conditions that would otherwise account for the degree of pain and dysfunction

Complex Regional Pain Syndrome Type II (Causalgia)

* The presence of continuing pain, allodynia, or hyperalgesia after a nerve injury, not necessarily limited to the distribution of the injured nerve
* Evidence at some time of edema, changes in skin blood flow (skin color changes, skin temperature changes more than 1.1°C difference from the homologous body part), or abnormal sudomotor activity in the region of pain
* This diagnosis is excluded by the existence of conditions that would otherwise account for the degree of pain and dysfunction.

HOPE-4crpsrsd

Spreading Awareness...

my life as it is now...

yes, it's been a while...

Fabric Bangle Bracelet--Find The Cure

CRUISE FOR THE CURE

Fibro on my mind since it is May--

Living with Fibromyalgia

Kristin Lathrop

Health Special: Chronic Pain

Health Special: Chronic Pain

Rock Benefit Concert

My CRPS/RSD Awareness jewelry

Patient With No Pain Gauge Could Help Chronic Pain Patients

Patient With No Pain Gauge Could Help Chronic Pain Patients

November is CRPS/RSD Awareness Month

Can You Still Be Friends If They Think You Are Faking Your Illness?

Can You Still Be Friends If They Think You Are Faking Your Illness?

September Is Rapidly Approaching! Uniting Our Voices, Conquering Pain Together!

Puzzle Pieces

Thankful

health in question

new diagnosis

Lidocaine IV

I couldn't have said it BETTER~~

WarmMe® Warm Mouse The Original Heated Computer Mouse

How My Illness Brought Me Grace, By Cynthia Toussaint

How My Illness Brought Me Grace

the bamboo and the fern story

Yes, There IS a Santa Clause!

Yes, There IS a Santa Clause!

Life with CRPS/RSD con't ~~ it was time..

the pain

YouTube-- Fightingrsd Silent

Life with CRPS/RSD con't...

Life with CRPS/RSD...

"Mirror Therapy for My Foot"

almost here--CRPS/RSD Awareness Month

Purpose While Afflicted

I found this particular devotion so true of my life. I am rewarded over and over when I allow the Lord to direct my days. HOPing it touches you and allows you to start thinking in another direction for your life.

Purpose While Afflicted

RSDSA Launches Major Study on the Natural History and Long-Term Health Effects of CRPS

RSDSA Launches Major Study on the Natural History and Long-Term Health Effects of CRPS

10% discount for CRPS/RSD Jewelry through November

Being Comfortable with CRPS

Being Comfortable with CRPS

By: Tracy Zuckerman

30 Things About My Invisible Illness You May Not Know

09 Seminars & Speakers-- Invisible Illness Week--

National Invisible Chronic Illness Awareness Week

a bit of an update on me--

Complex Regional Pain Syndrome and Quality of Life

Two girls lean on each other for support against a rare disease

This Man CHOSE to be in a Coma

CRPS video portraying the life of Laura Black

Catalyst: Complex Pain - ABC TV Science

CARE Card

God is Always There

Protecting Your Job While Coping With a Chronic Illness

Action Alert--APF’s Petition to the FDA on REMS - Sign Now!

ACTION ALERT

Forward to a Friend

APF’s Petition to the FDA on REMS - Sign Now!Join APF in Urging the FDA toProtect the Rights of People with Pain!

The Word on Pain: PainPathways...

NJ Herald: Sparta woman's disease causes chronic pain

RSD-CRPS the most painful of chronic pains that exist.

Memorial Day

Repeated Virtual Reality Distraction Reduces Pain Perception

Ramachandran's Mirror Trick

Recent Advances in CRPS/RSD with Dr. Joshua Prager

Amazing Universal Healing Aid -by Gary Craig EFT Founder

thoughts

Cognitive Behavior Therapy for CRPS

HOPE Rekindled

Ahhh, a Sunny Bright Day...

God is Always There

Easter Joy

and it really does feel like this

A World of Hurt: In Workplace Injury System, Ill Will on All Sides

I wonder 2007

APF’s Petition to the FDA on REMS - Sign Now!
Join APF in Urging the FDA to
Protect the Rights of People with Pain!