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.
********
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.
making unbreakable - formerly moosh in indy. 
Thank you for this! My friend (who I sent this to) has just been diagnosed with this after 2 years of being bedridden. They are now that the stage of trying to rule out ALS officially so they can proceed with treatments but they start ketamine next week. My friend has (literally) some of the best doctors in the world and yet still it’s all somewhat of a mystery. Thank you for sharing this!!
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Best of luck to you and your friend Allison.
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Dave,
My heart goes out to you completely. I was diagnosed with CRPS a month ago and as your friend suggested, am writing my tush off. Perhaps it is a therapeutic exercise in purging my core of the crushing desire for others to understand the process of digesting such a challenge. Please know
You are not alone.
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@Micaela Bensko, Please advise as to what kind of doctor or specialty a person would seek out for these type of diagnosis? Thank you.
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@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.
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@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.
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I have heard of it. My best friend has it. It’s changed her entire life in the three years since she first was diagnosed, after an ankle surgery. She actually just got into Mayo Clinic in Florida for treatment and pain management after years of doctors treating her like crap.
I’m so very sorry for you friend and especially for her husband. I know what my friend lives through every single day and she’s one of the bravest people I know.
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Great story told Dave! I’m glad I got to meet Sheila a few times and shared some laughs together!
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Thanks Steve.
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Casey,
I saw the title of your post today and my heart jumped into my throat. I comment occasionally, but mostly I read your blog. Today I have to make one of my rare comments.
You see, I’ve lived with this disease for over half my life. I was 18 when I got it. And this is one of the best posts and descriptions I’ve ever read. I actually used topical Ketamine and was in one of the first published studies about it. It helped get my ankle functional again- but my wrist may never be “normal” again. I thank you so, so so much from the bottom of my heart for bringing attention to this disease. There’s so much more I could say about it, but I’ll leave it with a big virtual hug and my condolences over the loss of Sheila.
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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.
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What a horrific disease. I’m so sorry for Dave’s loss. Thank you for bringing this to my awareness! I had never heard of it but there’s 1-3 MILLION people in the US with it?
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Dave,
My heart goes out to you and your family, especially your lil girls. I knew Sheila back in high school and absolutely loved her. She was one of those girls that you could look up to as I did. Thank you for sharing this. You are a strong man and she was lucky to have found her prince charming before she passed. I am sorry for your lose and want you to know there are many people here to support you and your family. I know you don’t know me, but I’m here too. My prayers go out to you guys.
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Thank you Lindsay. I am thankful for the time Sheila and I had together.
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Dave, I am so very sorry for your loss. My wife got CRPS 5 years ago and I have lived with a fear every days since then. I am so sorry this happened to you and so angry at our system. When she is asleep tonight I think I will cry a bit in relief that she is still with me. I wish I had something to tell you or say to you or give to you, but you have to carry this pain yourself. If at sometime you want to reach out you have my email and I will listen to anything.
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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.
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I work for a large pain practice, and we are developing a ketamine program. I always feel so terrible for our CRPS patients…often they’ve been shuffled around from one unbelieving doc to another, trying anything to find relief. I’m so hopeful that more insurances will cover it as it is proven effective over and over again. I’m so sorry for your loss, Dave. My heart is broken for you.
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@Tessa,
Tessa
If I punlished my email address would tou send me more information on the pain group and ketamine protocol? I’ve used topical with great success in my ankle and got near remission. But when it spread to my wrist I didn’t jave such success and rhe doctor who pioneered this for me has died. I’d be interested in seeing what new doors are opening! Thank you. Chris
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@chris,
Chris, I’m so sorry to hear that. The Ketamine treatments we’re involved with are at a pain hospital that is sort of a sister to our clinics, and I’m not informed enough to answer questions on their behalf. But if you email them at ketamine@freedompainhospital.com I know they’ll be able to answer your questions. Danielle is the Ketamine coordinator and she’s good people. Good luck to you, I hope you’re able to find some help, whether it be from us or someone else.
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My husband suffers from crsp/RSD and I watch him go through the years of pain. It is a horrible disease and I wish they had a cure.
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I’m so sorry to hear this!
I was 10 when I was diagnosed with RSD and no one understood the pain I was in. It was horrendous! I too went through many doctors, clinics, and medication before I became a test subject for a pill (that would later also cure my constant migraine that lasted 7 months when I was 12) that was supposed to help depression but worked to heal RSD and other nervous system problems. After three months of taking the pills(after trying over 5 different kinds), and seven months of constant pain, it started to work it’s way down my leg until it didn’t affect me any more. However, RSD never truly goes away. Mine is in remission but every time my right foot/leg/ankle/etc. hurts, my parents and I start to get nervous. It’s been five years but it still affects me to this day even though it’s gone.
It’s sad to hear this story. I’ve never heard of anyone else who got this! My heart goes out to them.
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@Erica, Hi Erica my name is Suz and I have RSD. May I ask you what drug was it that they gave you that helped? I am allergic to most of the meds they have tried on me, but I know my PM doctor is doing all that he can to help me. He has worked with me for all of my 16 years of it. He had told me that there was a 10 yr burnout time or I gues remission but the 1st 6 yrs I had wrist surgeries 3 times. Now it is all over my body and has started in my mouth. I would love to hear what pill you took
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Hi Sue, I had to reply to this bcuz other than myself, I have never heard of anyone saying that they have it in their mouth. What does it feel like? For me it feels like a ton of the strongest, sour pickles on earth in my mouth, inside my checks in particular & extremely intensified. But only when I eat certain things. I noticed it when I tried to cut down on my meds. It seemed to almost spread w/a vengeance. Since then, needless to say I’ve up’d my meds back. But it’s not budging.
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@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. 🙂
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@Sue, The medicine I took was called Amitriptyline and I’d take 12.5mg a day. Hope that helps!
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@Erica, Hi Erica, My 16 year old son has RSD. He was diagnosed at 12 years old 4 months after breaking his foot. He developed full body pain within 4 months of breaking his foot. It has been a horrific 4 years for him. He has been in his current exacerbation for 1 year with the worst pain he has ever experienced 24/7 plus pain spikes in his spine. Please tell me the name of the medicine that helped you. I am an R.N. and his Mom and feel completely helpless because I have not been able to help him. Please share the name of the medicine that helped you and what area of the country you are from. What doctor or pain clinic you went to that helped you. I am desperate to help him!! Thank you,
Signed, Robby’s Mom, Margie
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Hi Margie, has he ever tried lyrica. That has made a lot of difference for me. Garbapentin seemed to work the best, but, the side effects rendered it not even worth it.
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@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.
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@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.
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@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 🙂
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Hello Erica,
Please share the name of the medicine that helped you. My 16 yr old son has had RSD for 4 horrific years. I am desperate to find someone or something to help him. Please share the name of the medicine, as it may help someone else with this horrible disabling disease!!
Thank You,
Robby’s Mom, Margie
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@Margie- Robby’s Mom, The medicine I took was called Amitriptyline and I’d take 12.5mg a day. Hope that helps!
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@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!!
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Here is the ONLY place you will ever need: Dr. Joshua Prager he is a pioneer with diagnosis and treatments for CRPS. He heads the CRPS Center at UCLA. 100 Medical Center Dr. LA, CA 90029
1 (310) 264-7246
If you have CRPS, your search is over. Much love to you all,
Micaela
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And he CARES! 🙂
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unbelievable.
i’ve never heard of this condition, and i’m terribly sorry for your friend.
i hope his family can find healing and his pain will be over soon.
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Thanks for posting this. So sad! I had never heard of this condition. My heart goes out to him.
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Thank you for sharing Sheila’s story Casey. And, thank you everyone for the kind words and helping to raise awareness of this misunderstood disease.
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Just over a year ago, I herniated two discs in my lower back, which also caused sciatica (sciatic nerve pain) that radiated down to my left foot. The back injury slowly healed, but for some reason the pain my foot remained — and then kept getting worse and worse.
Only, it wasn’t the same kind of pain; rather, it took on a new life entirely. If I tried to pull pants over my foot, or put a sock on, or even sit without a shoe on under the breeze of the ceiling fan, I’d experience terrible, searing pain.
Anyway, after losing sleep night after night (because of the pain) and nearly losing my mind (because of all the pain meds and other prescribed meds — such as Gabapentin — the doctors kept giving me), a weird twist of fate led me to find Calmar Pain Relief Therapy in Rhode Island.
Now, in the interest of full disclosure, I was never “officially” diagnosed with RSD/CRPS. My neurologist, upon telling me that back surgery would not help alleviate the nerve pain in my foot, casually (read: frustratingly) stated, “It seems like you might have RSD.” Needless to say, I was deeply unsettled by this, especially when I read more about the disease online.
Long story short, I ended up finding about Calmar and, after watching their video testimonials, scheduled a consultation.
I swear on every book and/or person imaginable, after ten minutes of the Calmar “Scrambler Therapy” treatment, ALL my pain was gone. I followed up with Dr. D’Amato (the Doctor who runs Calmar) for the full 10-session protocol, and I swear to EVERYTHING, I have not felt any pain in my foot since (this is now going on over a year). I’m fully active again, I’m back in the gym, and the pain becomes more of a distant memory with each passing day.
I am not a shill for this company. I have absolutely no financial stake here. I am simply someone who suffered for even a short period of time with RSD symptoms/pain (as I said previously, I was never officially diagnosed — and, after visiting Calmar, there was simply nothing to diagnose since the pain was gone).
I urge you or anyone you know who might be suffering from chronic nerve pain (of any kind, not just RSD) to look into Calmar and view their video testimonials. Their “Scrambler Therapy” machine is FDA approved, it is already widely used in Europe, and last I heard, it is now being used at Walter Reed Medical Hospital to treat soldiers dealing with phantom limb pain. This therapy is not some form of alternative medicine, it is advanced medical technology.
Simply put, you don’t have to live with pain anymore.
Here is a link to Calmar’s website: http://www.cprcenters.com
Please do this. Don’t suffer or let anyone you know suffer even a day longer.
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@Chris, it doesn’t have a proven track record with CRPS though. I know some who have tried & suffered limited relief only to return to the intense suffering.
So glad you have found relief.
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Chris,
Calmar was next of our list of things to try, after ketamine. Thank you for sharing this information. We had heard of some positive results.
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I was extremely touched by this. Dave, I’m So Sorry your Great Love story took such a tragic turn. I wish I had better words and understanding to offer…yet all I have to give is my deepest sympathy. I would also like to offer much Thanks for sharing an obviously heartbreaking story…and for letting me get to know Sheila for a bit. She no doubt was, and will Always be, a Beautiful and Extraordinary lady.
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If there is a blessing, it is that I got CRPS in my later years. It doesn’t hurt less, it still turns your life upside down, but my children are grown. & have families of their own and scaling back my life to the minimum impacts only my husband & I. It is still a horrid disease but as I watch younger women suffer as they try to care for their families, it breaks my heart. Honestly, I don’t know how they do it. With few out of the house responsibilities the circle of my life has gotten very small, but I have a wonderful pain mgt dr, a hubbie who cares for me & 13 grandchildren who are the best medicine ever. Even in the midst of the pain God has blessed me. Oh so sorry for your loss. May God carry you & your family by His Love, Mrcy & Grace through your mourning & grief & beyond. Thank you for sharing her story, your story so that more will be aware of this invisible pain & the affects it has on those who’s lives are drastically changed by it, in an instant!
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569981 501154Outstanding post, I feel weblog owners need to larn a whole lot from this weblog its actually user genial . 576565
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I’m so sorry for your loss. I have not heard of this so that you for making me aware.
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So Sorry for your Loss. What an Amazing Woman & True Story Of Love. My 15 year old daughter suffers with this horrid disease. My daughter almost died due to a combination of medications we were told for her to take, she got Stevens Johnson Syndrome. She was admitted immediately & taken off all meds, then given iv fluids & antibiotic to flush her system out. We live each day by day.
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This is a travesty. We are losing too many young and vibrant people to CRPS. I have shared this in the community, because people need to know how very serious this disease is. Please know that you are surrounded with love during this time and going forward. Hugs.
Helen Freemyer
http://www.rmrsd.org
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I’m so sorry for your loss. I know the pain your wife felt. I feel so guilty for trying to end mine now & can see the pain I caused my family. You brought me to tears.
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Dave, words can not even describe how sorry I am for your loss. I thank you for sharing your experiences with your wife and explaining so beautifully how this disease affects those of us with this disease. I’ve been living with this demon 3 1/2 years now. By sharing your experience, maybe more will learn about this disease. Thank you! God bless you and your two daughters!
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My heart breaks for Dave’s loss of his love, Shelia. I first heard about this disease ten years ago when a family friend was in an accident that resulted in him having RSD in his left foot ankle after doctoring for almost three years.
In June 2012, I was in a simple trip and fall accident that just would not get better, hurt all the time… after 9 months of doctoring I asked for a referral and in June of 2013 at 30 years old, I too have RSD.
My prayers to all of those affected by CRPS/RSD.
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very sorry for your loss I have had several friends od on meds I have had rsd since 1997 in my left foot from 500 lbs of steel hitting it ended up having tarsal tunnel surgery in 2002 in 2009 I slipped on ice and fell down a flight of concrete stairs had to have s1-l5 l5-l4 fusions 6 screws 2 plates and a cage have had 6 pelvioscopys emergency gallbladder surgery and had stuck dialated bile ducts for 8 months before anyone could figure out why I had severe pain after the gallbladder surgery I know have severe loradosis my hip slips out of its socket waiting for a spinal cord stimulator but wanting to fix my hip and my tarral tunnel syndrome came back since back surgery im a wreck pain wise but in reno nv if anyone needs a new rsd friend Isverygrateful@yahoo thank u for posting dr info and such and experiences as everyone is different here and to find someone who u can relate to can be the best thing for someone in my shoes don’t give up hope it is pure hell what we go through we have to stay strong to show others how we do it get by day to day stay strong !!!!!!!! laura Cantrell hugssssssssssssssss
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My heart hurts for Dave’s loss. I had never heard of the disease before I was diagnosed in 2008.
I was diagnosed with it at 14 years old. I had been suffering from RSD for nearly 3 years before diagnosed. I was originally in a boating accident that caused it.
I am actually from the Indianapolis area, but am now living in Fort Wayne for school.
I know the entire RSD community would send their well wishes and prayers for Dave as he mourns his wife.
My prayers to all.
Megan
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I am so sorry for your loss I have had this for over 12 years from a I.V. it attacked my organs in 2006 and have had many removed from the rsd attacking them and making them non functional I now have cellular hypothyroidism which is vey hard to get a diagnoses as well I have adrenal fatigue fibromyalgia ankylosing spondylitis and now Parry Romberg syndrome which is so rare maybe 3 thousand people in world have it caused the left side of my face to atrophy we get to blame RSD for all of it people just think it is pain but it is so more than that I thank you for sharing your story and I am so sorry for your loss
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Thank you for sharing this very personal story. I am so sorry for you and your families loss. I too suffer from CRPS, but nothing like what your Wife experienced.
Sending Prayers
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Dave I am so sorry for your loss. It is a disease that most ppl in their lives will never understand because they can SEE something wrong.
I have had RSD for 16 years now. I am hoping to get a neuro stimulater. Ive done the trials and they worked out well, just waiting for my doctor to get credits to operate where I can go. It is a long hard road and an awful journey. I wish the best for you and I will keep you in my prayers. My mom died 4 years ago and she was my No1/ beliver. Now I have found a man that does believe in me, but it is still very hard.
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I am so sorry for your loss. We will pray for you and your family. I am the mother of a 16 year old CRPS fighter. She was diagnosed last year after a sprained ankle from cheer camp. We wrote a book about her battle to help others as they struggle so they know they aren’t alone. It has helped her in dealing with it, but we take it day by day. It is so hard to watch a loved one go through.
Thank you for sharing your story. We will share it with others as well.
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This story broke my heart. I am a former marathon runner, mom, and wife. I also suffer from RSD/CRPS brought on when I tripped and fell on a training run for the NYC Marathon.
I’ve been told I look “fine” and that I “certainly seem to get along ok”. I honestly don’t know what people expect of me. I lost my job, my health, my runner’s body…almost everything.
Every time I take a new medicine or painkiller, I always worry that this will happen to me. That I won’t wake up. That my husband or my kids will find me dead. It’s beyond scary.
Dave, I know that you must miss your wife a great deal. Continue to tell her story to anyone who will listen. Raise awareness.
I am so very sorry for your loss.
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It makes my heart ache to read this…I’m 19 years old and I’ve had CRPS for just over 2.5 years. It began in my left foot but quickly spread up my left leg and into my hip, abdomen and lower back. I’ve tried nearly every treatment that is covered by insurance and I now have a spinal cord stimulator which reduces the pain enough for me to walk and sleep a little bit better. I too, used to be a runner. I’d ran in the state meet for my high school in track two times and cross country three times before I got sick just before track season of my junior year…After finally getting a diagnosis then finding a doctor to treat me I had 7 sympathetic nerve blocks, one angiogram (to restore bloodflow to my leg) and a total of 4 surgeries for my stimulator… when I read that she would run or ride her bike if she could do anything I felt as if I was reading my own wish on the computer screen… Thank you for writing this and devoting time to raise awareness of CRPS/RSD…the pain is hard, but it’s often harder that people just don’t understand.
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God bless , been battking for 17 years
I know exactly where your wife was , been there so many times. Your right no one understands the o ain so its easier to smile and go on …but I was 31 when diagnised that was the wirst first 2 years of this monster .I m thankful everyday for my pain pump .but it doesn’t stop all tge poo ain it n as kes it more bearable ..si sorry for your loss.
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Dave,
Thank you so much for sharing your wife’s story. Like so many of the others that have left comments, I too suffer from RSD/CRPS. I was diagnosed 5 yrs. ago. It started out in my 3 fingers of my right hand and is slowing moving up my right arm. It has also moved to both of my feet and slowing up my legs. I have an awesome dr. who has been with me from the very beginning, however he had never heard of it so he has had to learn about this disease like I have. I did have a pain dr. but worker’s comp didn’t feel like I needed to be seen by him anymore but they are willing to let me keep going to my family physician. I find myself not telling any one about my situation either, there are so so many people out there who are quick to judge us whether that judging comes from strangers, co-workers or family members we are still judged. I hope that your story will somehow make this condition that we suffer from more known. I am so very sorry for your loss and your children’s loss as well.
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Dave,
I am so sorry for you loss. Your wife was so very lucky to have the support that you gave her. To have someone believe and understand that they are really in pain is something that we all want when we suffer with this.
After an injury at work 2 years ago, 2 surgeries, multiple cortisone injections, and over 90 physical therapy sessions I was finally diagnosed with CRPS. My world has been turned upside down. I went from whitewater kayaking, running, climbing, and hiking to just being happy that I can walk across the house. With two active nephews that I love with all my heart I am still trying every treatment we can find to make this more tolerable, though there days I have cried saying I can’t take it anymore.
I dream of one day taking my kayak off a waterfall again, then hiking up and doing it over and over.
The love and support you gave you wife was the best gift you could have ever given her.
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So very sorry for your loss, Dave. There is so much for me to say, yet this is your time. The only thing you have right now is God if you believe in him & time. Those are the two things along w/my husband and a few friends that have kept me going. I am grateful that you are doing this selfless act to bring awareness to the disease. Thanks so much & please continue to stay busy in your quest. For this is what will help you to get through this quicker. Take care, Ann
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First and foremost I’m very sorry for your loss. Thank you for sharing your story, and I think this is the only way we will ever get to a cure. By sharing our stories and making our voices be heard.
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Diagnosed July 2006. My girls were 6 & 4 when I stumbled into this.
I know how she suffered in silence. This pain is something no one should have to experience. It was devastating to hear doctors say good luck and family & friends showing disbelief.
Your family is in our thoughts & prayers. So sorry this has happened.
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I am so sorry for your loss. I have been battling with CRPS now for 8 years after a fractured scaphoid when I was 17. It originated in my left wrist and has since spread to both arms (from fingertips to shoulder) and both legs (from toes to above knee). I lost my life but I’m slowly but steadily regaining it after a successful SCS implantation. I live in the UK and therefore do not know if it would be possible to access, but I would definitely recommend an SCS – it’s given me my life back!
My prayers go out to you and your family – may you find some comfort in the knowledge that your sweetheart is at peace and finally pain-free.
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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
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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
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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…
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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
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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.
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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.
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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.
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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
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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
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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.
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