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.

********

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.

********

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. Thanks a lot for sharing this story Dave. I recognize a lot about this story in my own life in Holland. It makes it hard when people do not understand and can lead to a lot of frustration. I’m sorry for your loss and I hope you find a place to be happy again in spite of your wife not being around physically.

    Regards,

    Ron

  2. Hi to all you fine people who have or live with someone, who has CRPS-RSD. I am now in my third yes of this night mare. I have also got a rare form that causes decomposition. Not very nice to look at. I have on to occasion went into anaphylactic shock my husband got me to hospital on time the first time was touch and go, it is so scary ever day and the pain there is no words for. Like your wife i gave up trying also people gave up on me. I lost most of the people i thought cared I get sick of the negative comments. To the point i am now quit isolated. My husband showed me the story he told me he could not stop crying. So i read and the same the pain i feel for your loss is great. I am so proud that you have sent this for the world to read maybe some people will stop treating us so badly. I send you all my love victim and carer we all need as much love as possible. Dave, There is no word for you pain and loss. Thank you for sharing your story I know it will help CRPS patients and carers. Hopeful it will wake up people from their lack of understanding. My heart to your. xxx

  3. dave my heart goes out to you. i was diagnosed with rsd in 2003 and have suffered ever since.your absolutly right dr’s have no clue about it let alone how to treat it and all they want to do is write script after script. im soon getting a morphine pump installed to my central nervous system. soon my rsd wont bother me anymore im praying. i asked for an amputation many years ago cause my leg is 90 degrees externally rotated out to the side looks like this L very painful.ive been in 3rd stage of this deiease for many years and so which i could go to washington d.c and let our president and congress aware of this deiease and that they are slowly killing me by denying me proper medication for it.whenever i think i have it bad i will think of your wife and know that theres someone out there in this world worse off then i am. i will keep you in my prayers as i hope you do the same for me. you wife is an angle watching down on you every day.this deiease is keeping me from ever getting married cause women let alone people have no clue what rsd is or like to have . most just stare an laugh as i go by them.rsd has ruined my life forever. you cant back up the hands of time and give me the time ive lost with friends family and people back.im not quiet sure why im still on this earth but god has his reasons for me bing here.what they are i will never out. jim c…

  4. @Margie- Robby’s Mom,
    hello Margie!

    I am so sorry to hear about your son. It was so long ago that my mom and I can’t remember BUT sit tight because we’re going to call the pharmacy and find out for you!

    As for your other questions, I was treated at Sick Kids Hospital in Toronto, Canada. I went to the ER and was diagnosed there. They then put me in their Pain Clinic where I was treated for several months. My parents also brought me to a natural healer at the time too.

    Don’t worry we’re going to find out the name for you 🙂

  5. @Sue,

    Hi Sue! Wow! I am so sorry to hear about your case of RSD! My mom is going to call the pharmacy to ask them the name. I will tell you as soon as we know, sit tight.

    I’m so heart broken by all these stories. It brings me back to the days where I too was feeling this pain and it makes me sad that other people are suffering. We’re going to find out for you. 🙂

  6. Denise Mitchell says:

    I grieve your loss with you, I wonder this sounds exactly like what my mama felt like everyday of her life. Thank you for sharing it is because of people like you that are willing to share that we are able to have hope that one day we will not be looked upon as drug seekers, when most of us try not to take the pain meds we’re given. I know it is so scary what insurance will cover Oxy all day that leaves a lot with a rebound headache, then they call they can count our pills at times this is like a slap in the face to me. But simple Botox injection that will releif our miagrain’s without a narcotic, they will not pay for, are they afraid we might get rid of a stress wrinkle or what. Your love story is beautiful God truly made you and her for each other

  7. I’m so sorry for your loss. I suffer with fibromyalgia and I don’t think my pain is anywhere near what you wife had. I had never heard of this disease, but I will be reading more about it. I pray God blesses you and your children.

  8. I’m so sorry for your loss and your girls loss Dave. Such a beautiful love story! I too have RSD. It started in my right foot after bunion & heel spur surgery in 2010. I had never in my life heard of what the podiatrist said when he told me “I’m so sorry, I think you have RSD/Sudeck’s Atrophy” “You need to go to Pain Management” So off I went. It was confirmed. I’ve had 9 sympathetic lumbar blocks, over the course of about a year. They helped for a few days, maybe even a week. When it started moving up my leg, I started seeing another PM Dr. in the practice because he does spinal cord stimulators. I now have a SCS. It has helped more than I ever thought it would. I am also on many different meds. Every time I take meds, I’m scared to death that the same will happen to me. I lost my job of almost 5 years in March, layoff… I was diagnosed with breast cancer in May. I am currently doing chemo, 9 more weeks, to shrink the tumor from my chest wall. Then I will be having surgery. The chemo also messes with the nerves so my pain meds had to be changed, to something stronger. I am here to tell you though, I have read again and again that RSD/CRPS is more painful than so many things including cancer. I have had some cancer pain, but it does not come anywhere close to the RSD pain. As soon as I’m over this speed bump (cancer) I plan to pick up where I left off on RSD awareness. I plan to make it my goal in life! You and your girls are in my prayers. Thank you for your blog. Oh, and if I were financially able to, I would do the ketamine! I was fortunate enough to be able to have it used in my anesthesia when they put in my chemo port in June. But…I don’t think 1 time did much. Maybe when I have my mastectomy I will be able to use it again and use it while in the hospital, doesn’t hurt to hope & pray for that right? I plan to speak with the anesthesiologist soon. Take good care.

  9. This is so heartbreaking to me and highlights one of my biggest fears. I have had CRPS 2.5 years now, most days of which have been horrifyingly painful. I was overprescribed pain meds and almost died. I have had multiple surgeries and wound up with an infection that almost killed me. I barely remember my life before getting CRPS. Sheila was so lucky to have such a loving husband to help her through her journey with this. As he mentioned, it’s hard for people to truly understand what we go through, hard to maintain friendships and relationships.

    I hope no one else is a victim of this horrible disease. I hope real, viable treatments become more available. I wish insurances would pay for treatments so our options aren’t purely becoming bankrupt or not getting the treatments we need.

    Thank you for writing this and raising awareness to such an important issue.

    Dave Reply:

    Hi Rachel,

    Thank you for the words of support and I am sorry to hear that you too are suffering from this cruel disease.

    I always told Sheila that I would take her pain for her if I could. I have to remind myself daily that this is now what I am doing.

    I want to do everything I can to raise awareness of the silent killer that took my wife away from me. Please feel free to share Sheila’s story as you see fit. Maybe we can get the right persons attention and make a difference.

    I am shocked at how little understanding there is of this not-so-rare condition, even in the medical community. 50,000 new cases are diagnosed in the US every year, and nobody has heard of it or knows how to treat it. Something needs to change.

    Please let me know if there is ever anything I can do for you. Even if you just want to chat or whatever.

    Dave

  10. @Micaela Bensko, Please advise as to what kind of doctor or specialty a person would seek out for these type of diagnosis? Thank you.

    Kylie Reply:

    @Leah, a neurologist or pain specialist would diagnose it.
    I’ve had it for 7 months after having my sciatic damaged during the birth of my child. It’s a nasty thing to have and I find every day of my life a challenge.

    Matt Silberstein Reply:

    @Leah, CRPS/RSD is diagnosed/confirmed by a neurologist. My wife was diagnosed by a orthopedist, but she said we had to go to the neurologist for the formal diagnosis.

    The neurologist open up telling us he had issues with the RSD concept (there is some valid and some invalid debate over the condition). He ended up the exam by saying she had CRSP.

    We got very very lucky, it only took 6 months from symptom to diagnosis. And we only had to deal with one bad doctor before we found a very good one.

  11. vicky l liberty says:

    Im dealing with alot of test still im so sorry for your loss of this amazing lady you called your wife and mother of your children this story has made me cry because ive been in pain for 2 years in bed and so many meds its crazy i took myself off pain meds because of what happened to your wife because we are in so much pain we take so many meds and the fog our pain causes us i sometimes forget what i have taken thank you again for your amazing journey with your wonderful wife you are all in our prayers

  12. Prayers for you and her loved ones. If any of you have this or other chronic pain condition, PLEASE do NOT tell yourself that you are so alone and no one understands and if this is the best my life is gonna be than lets be done with it. PLEASE reach out to others who have it. Find a friend even if online. There ARE others who understand…its just not usually right next door. PLEASE give it to our Lord Jesus Christ and trust in HIM with everything you have left in you. It will get better. It will.

  13. 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.

  14. 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!

  15. 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.

  16. @Margie- Robby’s Mom, The medicine I took was called Amitriptyline and I’d take 12.5mg a day. Hope that helps!

    Margie- Robby's Mom Reply:

    @Erica,
    Thank you so, so much!! I will ask his doctors about it today!!! May God continue to Bless you and keep you pain free!! Thanks again!!

  17. @Sue, The medicine I took was called Amitriptyline and I’d take 12.5mg a day. Hope that helps!

  18. Best of luck to you and your friend Allison.

  19. Thanks Steve.

  20. Thank you Chris. Sheila did use a topical ketamine cream but it was not very helpful. Applying the cream often brought on more pain than it relieved. Please share Sheila’s story and I hope you find some relief soon.

  21. Thank you Lindsay. I am thankful for the time Sheila and I had together.

  22. Thanks Matt. You and you’re wife have probably figured this out already but, I did learn that when you are dealing with such a misunderstood disease you have to be proactive. You have to do the homework and you have to call the shots. You can’t assume that all doctors advice, prescriptions or recommendations are in your best interest. You have to become an expert on all aspects of your wife’s disease. I hope you and your wife wife find relief soon.

  23. Margie- Robby's Mom says:

    @Ann,
    Unfortunately Robby’s RSD specialist does not believe in giving children with RSD any meds!! I keep fighting with them because my son is suffering so much. I will keep asking believe me.

    Matt Silberstein Reply:

    @Margie- Robby’s Mom,

    Margie, give me an email at matts2 At Sign ix.netcom.com

    I can try to connect up your doctor with ours. Our doctor had a child with the condition and can give good advice.

  24. 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

  25. 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…