Dave and I had been roommates in Salt Lake when I met Cody back in 2000. He was always quiet and funny, waxing poetic about moldy coffee or snow leopards. Cody and I were both surprised when he and my other roommate began running half and full marathons, regularly. Soon a cute girl kept showing up in Dave’s photos and Cody and I jokingly wondered how regular old Dave had landed such a babe. They married, continued to run races and you could always tell how in love Dave and Sheila were in their photos.

Earlier this month Dave changed his profile picture, it was a good one. The two of them sitting in the back of a truck, Sheila looking up at Dave with all the love in the world. I noticed a comment left by a friend that said “I’m so glad she had you to share her life with.” I started reading other comments, then posts from other people, all condolences and love. Then came the obituary.

His wife had passed.

I offered my condolences, and feeling helpless asked if he’d ever be willing to share her story, to share awareness of the misunderstood and rare disease that Sheila was diagnosed with earlier in the year. He was reluctant at first “I’m not a writer.” But when it comes to sharing something you care so deeply about, it doesn’t matter if you’re a writer or not. Dave loved Sheila, Sheila loved Dave.

Dave tells the story better than I ever could have, my only ability is to share it, ask you to share it, and hopefully help even one person with Sheila’s story.

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I had never heard of Complex Regional Pain Syndrome (also known as Reflex Sympathetic Dystrophy or Causalgia) before my wife Sheila was diagnosed with it earlier this year. In April of 2013 her big toe went numb for no apparent reason. The numbness, accompanied by weakness, quickly spread up her leg until her entire right leg below the knee was rendered useless. Within about 10 days the pain set in. She was diagnosed with CRPS in May and she passed away on July 29th, 116 days after her toe first went numb.

CRPS is a rare nerve condition that often goes undiagnosed for months or even years. Symptoms include abnormal sweating, changes in skin temperature and color, softening and thinning of bones, muscle twitching and tremors, wobbliness, falling, visionary disturbances and severe pain. Sheila suffered from all of these.

We’ve all experienced pain, it’s part of being human and it serves a very specific purpose most of the time. CRPS inflicts a level of pain that most of us can’t comprehend and will never experience. The McGill Pain Index ranks CRPS as the highest level of pain possible for any chronic condition. CRPS ranks significantly higher than cancer, fractures, unmedicated child birth and even amputation of a digit. The pain from CRPS never goes away and pain medications are almost useless. The pain my wife experienced was so severe it prevented her from wearing shoes, socks or pants. She couldn’t submerge her leg in water and even a light breeze could bring her to tears.

Initially my wife would try to explain to people how bad her pain was. People were sympathetic but they really didn’t understand. There was no affective way for her to accurately explain the amount of pain she was in. Her leg would appear red and swollen at times but usually looked to be relatively healthy. A former roommate of ours even accused Sheila of faking her condition in order to get workers compensation, even though compensation of any kind was nothing that she ever pursued. Sheila eventually stopped trying to get people to understand. She just put a smile on her face and tried to hide her pain from everyone.

It is estimated there are between 1 and 3 million people in the United States suffer from CRPS. 75% of victims are women. The majority of victims develop the disease in their 30′s and 40′s but, it can hit anyone at any age. CRPS is usually preceded by an injury of some kind or surgery. There is no cure for CRPS and treatment results vary greatly from patient to patient. Sheila’s form of CRPS was one that did not come with a favorable prognosis. We tried a number of treatments and nothing seemed to bring her relief.

My wife’s doctors, and there were many of them, didn’t know what to do. Some of them had heard of CRPS but most had no idea how to treat it. We had read of promising results using the drug ketamine. We specifically asked for it but, when we finally found a doctor that agreed to treat her with it, our insurance company refused to help with the expense. Ketamine is used as a recreational drug and it’s very difficult to find doctors that will use it and insurance companies that will pay for it, despite reports of positive results. They instead handed out narcotic pain killers like they were candy, our insurance company had no problem paying for these.

On Monday July 29th I came home from work and found my wife unresponsive on our couch. She had passed away in her sleep from an accidental prescription drug overdose. She was 32 years old.

Sheila and I were very active before she got sick. We completed many half-marathons together, mountain biked, snowboarded and were at each others side on a variety of other adventures. Sheila was a young, vibrant, healthy, beautiful wife and mother of two daughters. She was in the prime of her life. When asked what she would do, if she could do anything, Sheila said…

“I would run! I would run as far as I could, to the middle of nowhere, and then run home. Or, I would ride my mountain bike in Moab, all day, everywhere possible. Or I would swim. I’d swim laps until my muscles were so weak I couldn’t stand.”

November is RSD/CRPS awareness month. Please visit rsds.org to learn more or make a donation to help fund research and raise awareness. Or, contact Dave directly at dave@iwouldrun.com.

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Have you heard of RSD/CRPS before? Would you please help Dave spread awareness of this disease with a link, share, a comment or tweet so no one else has to hide their pain or suffer in silence as Sheila did? Thanks guys.

Comments

  1. I have had RSD for over 12 years I am on less pain medicine now than when first diagnosed I hear people talking about brain fog I had that to but found out it is not from pain medication it was from thyroid their is plenty of data showing that we get what is called cellular hypothyroidism and adrenal fatigue after having thyroid removed in 2 surgeries one in 08 the other in 2011 from the rsd it causes our organs to become so swollen no longer work I was told from 2006 until 2010 that my blood work was fine this was even with half thyroid when I was given first thyroid medication in 3 days felt like new person I still have rsd pain but the brain fog and flu like symptoms went away only to come back 3 months later so after trying medicin after another same thing would happen finally had rest removed in 2011 I was doing some research and found out about how many people being diagnosed with fibromyalgia really have cellular hypothyroidim so I got my doctor to run the correct test and after getting on correct medicine I felt so much better I have even lost 70 pounds in 15 months I am back where I was before 2006 when my body went crazy there is plenty of information about RT3 this is what test needs to be run there is info about people with rsd getting adrenal problems and endocrine because our thyroid problems are at the cellular level and most doctors no nothing about this
    My pain doctor told me that most people do not actually take to many pills when overdose it is the combination of giving pills that should not be given my family understands this my mom has sjrogrens fibromyalgia intercestial cicystis she has a very bad back with 7-10 bulging disk anyway her pc messed up we always go to doctor same pain appoitment monthly anyway she was so out of it that she was walking around house just pulling pants down not nowing it she was in no conditin to go he asked me about her when I told him the way she was acting he asked me for her medication list when he read it he said get her off this or she might die anyway I think that these pain doctors and othrts need to be taught whameds cannot be combined this to me is something we need asked to have more teaching of if anyone has thyroid checked please have them run tsh free T3 free T4 reverse T3 and make sure they understand cellular hypothyroidism please look up RT3and fibromyalgia very informative if u need anyone to talk to who has gone through this sinc 2001 for RSD and thyroid issues since 2006 in 2010 went to mayo and was told u are a very complicated case from own experience that place is awesome they too are not treating cellular hypothyroidim I hope this helps someone please contact me for any questions

    Ann Reply:

    Wow, Tracy. thanks for that info. It sound’s for once, more like a root cause chance of dealing with this than a symptom treatment. Thx again.

  2. I can only say that your courage and heartfelt situation has made me seriously think about the use of medications which indeed don’t work and I agree with you completely! I’ve had RSD now just over four years with diverse medications and this has truly made me cry! Your a one in a billion husband and Sheila is an angel! In your heart your a hero!

  3. Thank you for sharing your story, my heart goes out to you. I have had RSD/CRPS for 13 years. It started from a very minor accident to my right hand which quickly spread to my wrist and my left hand and wrist. As is the nature of this condition when progressive, it now affects not only both hands, wrists and arms but is now moving into my shoulders and neck. I understand the isolation of this condition. I was a business professional and could no longer work after two years of trying. I am an artist of fine line with both pencil and oil and can no longer express my visions with precision. My life has been changed completely. The medications prescribed are not very effective and have very unpleasant side affects. RSD pain is 24 hours a day every day and the lack of sleep elevates all the symptoms and pain. I have found that there is a blind eye to this condition for reasons I cannot understand. I smile and hide the pain from almost everyone, including my family. It seems impossible for anyone to understand the pain caused by RSD/CRPS or the other varied symptoms which leave you suffering in
    silence, alone. Awareness is key but does not seem to be easily attained for whatever reason. I have never responded to or written anything on a site where I am reading about RSD but for reasons I do not understand I felt I needed to write this.

    Dave Reply:

    Nancy, thank you for your response. I agree, awareness is key and there is not an adequate level of attention being given to this disease. It is so relentless, so devastating. When I wrote Sheila’s story I referred to CRPS as a ‘rare’ nerve condition…the numbers tell a different story. CRPS is not that rare, it’s just hidden. It gets swept under the carpet. Most doctors have no idea how to treat these conditions. If there’s pain, they write a prescription and send you on your way. Unfortunately, I think you will find a similar lack of understanding with all chronic pain conditions. I don’t know why this is. Maybe because chronic pain doesn’t look that bad from the observers prospective. If there isn’t a visible would it shouldn’t hurt, “It can’t be that bad”. A former friend of my wife’s asked her many times if she wanted to go to the gym and couldn’t understand when Sheila would tell her that wasn’t an option. I hope you find some relief soon Nancy and shoot me an email if you ever need someone to talk to.

    Does anyone have experience with low-does Naltrexone? We had heard that its use with CRPS was fairly new but there were some very promising results. It’s a fairly cheap medication that has few side-effects. I believe that you cannot take Naltrexone if you are on narcotic pain relievers though.

  4. Dave

    And so many doctors are hesitant to prescribe pain medication. I’ve lived wih RSD for over half my life and its rare to find several doctors have wanted to stick to non narcotic pain relievers because they thought I might get addicted being young. It gets a little easier as I age and to be clear all I anted was 1 pill a day at night for sleeping. I habe a long history of coping during the day and I realize my dreams of playing golf again are shot. Your story really helped to tell people about my life. Its hard for me to share what ice lived with for the past 20 plus years but this helped me share. Thank you. And again my condolences it may not mean much from a stranger but they are heartfelt because I know her struggle. I’ve lived it since I was 18. I don’t wear closed shoes (clogs are it come rain or snow) and writing well only on my best day otherwise I type. I feel a connection to your loss. With deep sympathy chris

  5. I’m so sorry, Dave for your loss..& everyone else who suffers from this disease as I do(full body Rsd/CRPS, RA & more))-and now it’s gone to my heart since heart surgery in Feb! I do try to help spread awareness. I make support ribbon jewelry (I have a Facebook page called “support In Jewelry”& I give all monies to Rsdhope.org or I give it as donations for fundraisers).I also have a support page on Facebook -called “invisible diseases esp. chronic pain & RSD/CRPS!” If you wish to find me ..my Fbk page is : Suzanne Burnett Stewart…