My Story: I Would Run!

My Story: I Would Run!

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.

dave-and-sheila-500x500She 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 is 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 effective 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.

dave-and-sheila-2-500x500A 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 who suffer from CRPS, 75% of them 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 or 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 painkillers 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 other’s 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.”

Sheila and David Hert

Sheila and David Hert

David Hert lives in Salt Lake City, Utah. His column was reprinted with permission from Casey Mullins’ blog.

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

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: David Hert

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Brooke Collins

Takeaway from this article- JENNY MENA from DEBRUIN MEDICAL CENTER says, “We are here and we are sympathetic to patients with RSD/CRPS!” Please call her at (916)801-7380 for more information about this KETAMINE INFUSION CENTER in SACRAMENTO, CA.

LIKE & SHARE to spread encouragement and awareness!

Love, Brooke

Chronic pain.
We got it = We get it.

https://www.facebook.com/ChronicPainWeAreInThisTogether

Kathy

David
I was Sheila & Shelli’s young woman leader when they lived in Winters. Sheila and I would text message each other & vent over the last year about our injuries. Both of us having injuries that we’re immobilizing, both in health care etc we found comfort in talking about our struggles. I have a really good friend her in Cali that has crps so I was aware of the syndrome and how devastating it could be. Know that Sheila and I found comfort in sharing feelings/struggles of being in pain and unable to do all the things we enjoyed. I cherish the memories with her. I have shared her story with my medical staff.prayers for u all. Kathy

My husband, a former Marine and deputy sheriff, was diagnosed with CRPS 4 1/2 years ago after being injured in the line of duty. He has been on crutches for 5 years now. He was injured prior to us meeting and had been to several doctors and has had multiple trials, treatment and surgeries. He got pneumonia 2 years ago and had 1/2 of his lung removed and since the CRPS spread causing his hands to hurt and not work properly. One doctor told him that it was just “behavioral” but after extensive research we have proved his theory incorrect. My husband is the most amazing man I’ve ever met. Since we met and married his outlook on life has changed. He pushes himself daily because he says that he wants the most out of life. He had to see a psychologist before and when she asked what his goal was his reply was “I want to dance witg my wife.” We do everything together and plan on starting our family next year. My husband is 33 yeaes old and people do not understand the hell he goes through daily. I try to exolain his condition but few really understand. Thank you for sharing you story and my condolenses on your loss. Praying daily for a cure for this horrible condition.

Jasmine Thompson

I was diagnosed with RSD years back…in my right arm and wrist……they did a sympathectomy…but it should have been done in the first year not in the 3rd year it would have been more successful…but they did not really know that much about it back then…many trips to the pain clinic
in London Ontario….9 nerve blocks,,,felt like a guinia pig for sure…..but i guess you do what you have to…I will you all the best…..

brad krubeck

this story sums up my daily battle and dangers with having crps… it sucks this guy lost his wife to bring out a story that best describes what people with crps go through — brad

Thank you for all of the support. Please share Sheila’s story with everyone you know. Hopefully we can bring some attention to this misunderstood disease and make a difference for those who suffer.

I was just going to ask if anyone had experience with Naltrexone. I believe the use of Naltrexone with CRPS is fairly new, but we had heard of some very promising results. From what I understand, it is a fairly cheap medication and has few side-effects. I don’t think that you cannot take Naltrexone if you are on narcotic pain relievers.

hippo hippo

it brought tears to my eyes reading the story. This is really disturbing. my pain management doctor has also handed with narcotic in the beginning and overdose, fell and passed out a few times with different meds. Because my body cannot metabolize that fast. 25% of population has this problem. Now there is a test to see how well you can metabolize drugs $700 out of pocket, youscript.com, but it worths it for not getting another overdose. they also offer 12 months interest free payment program. I don’t understand why doctors don’t test it more often because it’s so dangerous. I have found a private doctor and I am now using ketamine and naltrexone, both of them works way better than the narcotic for my severe nerve pain. Not only the pain is less but I have more function and recovering.

natski

Thank you for being brave enough to share your story. We are in the UK where knowledge of this condition is so minimal its taken 6 yrs to get a diagnosis.
Drs just handed out pain meds like candy, and even put us on daily dose of 900mg lyrica (a 300mg overdose) plus morphine tramadol and naproxen all at their highest doses. The fact this didn’t happen to my wife is a miracle the long term effects of organ problems, remains to be seen.
Luckily 6 months ago she was fitted with an scs which in her case is working and she struggled valiantly to now be completely drug free.
Drs really need to be told and need to learn that sometimes they dont know it all and they should be held accountable for just handing out drugs and turning you away.
I am so so very sorry about your wife. I can only hope you are ok if you ever need anything I’m on twitter @007dantes x

Mary M

I am so moved by your story and applaud you for writing this, to bring attention to this terrible disease. I am so terribly sorry for your family’s loss. Your wife sounds like an amazing person. I hope she rests in peace.

Jenny Mena, LVN

I am a nurse and I work for a ketamine infusion center in the Sacramento area. PLEASE let people know that help is here and we work with patients all over the United States!!!! We have recently opened a Ronald McDonald style home for our patients to off put the cost of hotels and travel…
WE ARE HERE AND WE ARE SYMPATHETIC TO PATIENTS WITH RSD/CRPS. PLEASE SPREAD THE WORD ABOUT THE ” DEBRUIN MEDICAL CENTER” in Orangevale, (Sacramento, ca) you may reach me at 916-801-7380. This is my personal phone number, only because I believe in RSD/CRPS awareness and treatment!!!! We have made MIRACLES happen!!

Lori Cohen

my heart goes out to everyone here both the people with CRPS and the people who love them. I have had this in my abdomen since 2005 when I had a gallbladder operation. It should have been 123 easy operation! The next day my abdomen swelled 30lbs and the pain was burning and my skin was red. it was horrible pain that hasn’t stopped. Then the next year a plastic surgeon said lets cut off the swollen tissue and maybe you will feel better. so they cut me hip to hip and did a big tummy tuck.
Well I died in the recovery room…they brought me back. I instantly got high blood pressure, diabetes, my menstrual cycle stopped. I was so sick..i cant even tell you. Then the swelling grew to 80lbs and that’s where I am now. Only the CRPS has spread to my right foot…its red, swollen and burning feeling. I cant hardly walk anymore. I have 4 herniated discs in my lower back from the swelling, and 4 herniated discs in my neck from when I fell. I cant lift more than 1 pound and my range of motion in my arms is limited.
I take lots of pain meds. I can understand on real bad days wanting to take more to make t all stop. But I think of my hubby and children who adore me even though I feel less than deserving. I will be strong for them. This story makes me want to be even stronger for this couple. Thank you for sharing this story.

I am so sorry for the loss of your beautiful wife! I suffer from a chronic pain condition that feels as if someone is trying to cut my right leg off at the hip. I have muscle twitching and suffer from severe Allodynia, and at times feels like acid has been poured on my skin. I get so depressed when I go to Doctors and they all say “There is nothing more I can do” I am looking into dietary changes and using herbs and vitamins to help with the pain. You are right, no one can understand the Hell we go through and all the times I feel like a phony for pasting a smile on my face every day so my family doesn’t have to be so stressed. Bless you for loving your wife and being her biggest supporter. So many men leave because they can’t fix the problem and it is too much for them to watch a loved one hurt and cry out in agony. I thank God every day for my family, who without them I would have given up this fight…..

Karen sawyer

I am so sorry that you lost your wife. I also have RSD since 2008 when I got hurt at work. It is extremely hard to deal and live with RSD. Though it is also hard for the caregivers to watch there loved one trying to deal with this illness.

todd powell

I am Sorry to here of her passing.
I live in payson ut and have been fighting with crps since 2008 started in my right ankle and has since spread to my whole lower region hips down both sides so I can relate it is very hard.
Sure do find out who your friends really are especially when you need help with anything I wish you the best of luck.

Tom basso

My sister is 35 and has RSD. She was diagnosed when she was 13 yrs old. We went to hospitals all over the country but nothing. We were in one hospital in Lubbock TX and the procedure she got done did help for a little. But then the RSD came back. She got it in her left foot and it got so bad that had to Amputate her leg. Now my sister has RSD in her right foot,left hand and now maybe in her mouth. She is addicted to her meds and when the doctors tried to lower her proscription she would go into sweats and get sick, was in hospital at one point. Nothing really can be done and its getting worse by the day. Very scares for my sister!

LisaK

For David:
My most sincere sympathy to you and you girls.
Your poignant story shows what the lives of so many Chronic Pain patients, the people who love them and the extreme prejudice we face is really like.
Dreams and determination continue whether or not our bodies allow us to live them out.
Thank you for sharing your beautiful Sheila with us.

Jeannine Moore

CRP is what they first diagnosed my 13 year old son but back when he was in 4th grade, Now they have said it is EDS and Juvenile Fibromyalgia. This story made me cry as I watch my son suffer every day and noone understands fully but me cause I also have EDS and fibro.

Dorothy Davidson

Hello David – When the doctors at Stanford asked our 12 year old son what he wanted to do, because they could not accept kids into their program who would not or could not go through additional pain of physical therapy and intensive treatment plans that would take months, he just hung his head and said he wanted to ride. He would ride his bike all over the neighborhood again, ride and visit all the places he did when he adventured with his Dad. Your story brought back so many angry moments when peopld did not listen or help, but it also brought back the beautiful, strong and lovely spirit of that young man who went through quite a bit to be able to ride again. Prayers for you and your family – and Thankful to you for writing this article so that others can understand what a painful and ugly diagnosis CRPS can be.

This is a loving, tragic story. You write of a terrific person with a stellar husband. It’s hard to believe anyone would deny treatment for this condition, it hurt to read this. Best to you in your life.

VICKIE WIMBLEY

I WAS DIAGNOSED W/RSD IN 2002 AND SUFFERED TERRIBLY FOR MANY YEARS. FINALLY, STELLATE BLOCKS GOT IT IN REMISSION ALTHOUGH I STILL EXPERIENCE PAIN EVERYDAY JUST NOT TO THE EXTENT IT WAS WHEN IT WAS ACTIVE. YOU ARE RIGHT, NO ONE KNOWS EXACTLY HOW TO TREAT IT EXCEPT TO HAND OUT NARCOTICS FOR THE PAIN WHICH I REFUSED TO DO. STILL HAD TO GO THRU THE USE OF SIEZURE MEDS & ANTI-DEPRESSANTS FOR THE PAIN WHICH WAS JUST AS BAD.