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CRPS, a New Four-Letter Word from Hell

Published on June 5, 2019 under RSDS General Info

Written by James Doulgeris for the RSDSA blog.

August 30, 2018 is the first time I ever heard the letters CRPS, and they are four letters I can assure you that you will never want to hear preceded by “You have …” as I did. This is not my story, but one about the challenges of sufferers of little understood orphan diseases told by a healthcare professional.

CRPS stands for Complex Regional Pain Syndrome, formerly known as Reflex Sympathetic Dystrophy, or, RSD. There is another, more sinister, name for it, “The Suicide Disease.”

I’ll get to why shortly.

It’s now ten months later and I push through day by day. In my work as a healthcare executive and now life as a patient, I deal with a lot of doctors. Those that know, ask, or find out that I have CRPS pretty much give the same reaction – “That’s rough, sorry,” or a version of it.

Having a debilitating, chronic disease is also isolating to a degree. After people you work with professionally, colleagues, even friends, stop feeling sorry for you and realize that it won’t get better, they begin to move on without you.

CRPS LONELY

The more acute my symptoms, the more I become to be viewed as who I used to be, and that’s hard to reconcile as well. This is a shared feeling that is also important to this story.

Why the “Suicide Disease?” CRPS, usually starts in a limb, which manifests as extreme pain, swelling, limited range of motion, and changes the skin and bones. The McGill pain index, a scale for rating pain, ranks CRPS higher than childbirth, amputation, and cancer. It may initially affect one limb and then spread throughout the body. Over a third of affected people report symptoms throughout their whole bodies. I am one of those.

Presently, about 200,000, or about one in 1,700 people in the U.S. are definitively diagnosed with CRPS.

Idiopathic chronic pain (pain with no definitive cause lasting for more than six months) is a primary diagnosis for more people than diabetes, heart disease, and kidney disease combined.

CRPS, it seems, is a diagnosis that may be exploding in proportion to newly found awareness among physicians and it appears that CRPS (along with its sometime companion condition called MCAS, or Mast Cell Activation Syndrome, a hyperallergic condition) are well on their way to be the diagnoses DuJour. There is, however, growing medical support stating that CRPS is significantly underdiagnosed that may further fuel this trend.

One of the primary goals of organizations supporting CRPS sufferers like RSDSA has been to increase awareness of the disease. A wave of new diagnoses bordering on an epidemic may well change the need from increasing awareness to managing it.

There is good reason. An explosive new diagnosis also creates a change in optics that can change physician reactions from “That’s rough,” to “Oh, really?”

This is not an opinion; it has some meat on the bone. The governmental and institutional overreaction to opioids, for example, has resulted in at least 40 suicides to date for CRPS patients who were taken off opiate pain meds to comply with new regulations. Take unrelenting pain, fatigue, weakness and limited mobility added to isolation and depression and that combination alone explains why CRPS is called the Suicide Disease. It is a condition that won’t kill you, and, that’s the bad news.

There is danger in the present political climate.

There is no denying that there is an opioid crisis. When government and the media decide that something that is abused by a few bad doctors accommodating “weak” people promoted by one or two greedy pharma companies is bad for everyone, good doctors get caught in the overreactive, rigid regulation and innocent people suffer and die. The CRPS community is particularly vulnerable to this mindless group-think.

While some physicians have stepped forward to be the adults in the room, pointing out that these drugs help millions and not every prescription is bad, the new rage of “guilty until proven innocent” and identity politics is a potential death sentence to those unfortunate enough to be identified as potential drug abusers who need to be saved from themselves.

Ignorance is a dangerous thing when combined with activism, power and potential political gain.

So, with all this being said, there may be hope for CRPS sufferers, both as temporary exceptions to restrictive pain medication laws and as beneficiaries of new treatments that come with a rapidly broadening market for them.

The path to sanity begins with the diagnosis of CRPS moving from an inferred diagnosis to an empirical one, a course of action requiring credible medical consensus that at least two positive empirical clinical tests must be present to confirm a diagnosis of CRPS. For example, a temperature differential of 1-degree F from one limb to another, a positive reaction to a sympathetic nerve block, and, or, peripheral demyelinating neuropathy supported by one or two of the myriad of companion symptoms. It’s a complex disease, but complexity creates a lot of choices.

The symptoms of CRPS are well documented and horrifyingly real.

Evidence-based medical protocols confirming the condition are not. And, the time is already overdue to get them in place.

Since the condition is historically rare, so are experts in it. They should be in the vanguard of establishing diagnostic protocols and teaching how to treat it on an international stage.

Please consider making a donation to RSDSA today!

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James Doulgeris co-founded Osler Health in 2013 and has served as its Chief Executive since inception. He has over thirty-five years of executive healthcare management experience serving primarily as president, CEO, and director of public and private companies and healthcare providers in the hospital, ancillary provider, medical device and healthcare services sectors. He is also a highly acclaimed speaker and thought leader on healthcare subjects from population health to using healthcare analytics. In addition to being a best-selling novelist, he is widely published and interviewed for health care issues on many prominent platforms and publications.

Osler Health is a specially integrated clinical network of elite primary care physicians who work collaboratively to deliver the highest quality care at optimal cost. We are on the vanguard of medical providers making the transition from being service providers to clinical managers realized by our use of data and advanced analytics to equip, enable, and empower our participating physicians to prevent acute episodes while being highly equipped to manage them if they do happen.

Osler’s work allows us to be responsible for the totality of each patient’s care within our network to efficiently deliver the best results individually and as a population. This has made Osler one of the most successful accountable care organizations in the country with a reputation for being years ahead of the industry.

18 Comments

  1. Marissa

    Apologies,
    I can’t keep focused enough to read through everything you wrote.
    I’m still grateful that you wrote about RSD/CRPS.
    Please keep it up.
    I started with it in my right foot and it has spread to my other extremities. Not even very many doctors know about this disease. I’m lucky to have been diagnosed when I was… some had to wait for decades.
    I was already dealing with suicidal tendencies and this certainly doesn’t help.
    People like you might bring awareness and possibly a start to a cure so that others won’t have to go through this alone.
    Kindest wishes

  2. Tracee Sanfelippo

    I was just diagnosed with this and am on my 2nd nerve block (legs, feet. I also have RA, Multiple Myeloma is thrown at me and Anemia. I am in so much pain! My Dr suggested a pain pump implant. Hard to get insurance approval. Ive read about Ketimine but never heard of it? All I know is…. I don’t want to live like this! Im 52- was very active, loved to work counselor and Volunteer with animal rescue. This is the absolute most pain Ive ever endured- and I have 13 screws in my neck from car accident 10 years ago- Id rather go through that again! Please…. what can I do?/?

    1. Julie Pascoe

      I too am 52, and after 18 months of whining to doctors as to why my foot is swollen all the time, have very little movement in it, and the colour changes, the feeling in that foot compared to my other one is so different, I know someone is touching it just but if feels to a degree numb, it is hard to describe. I had surgery a few years ago and have had issues ever since. I have had ultrasounds, xrays and MRI’s. But yesterday I had a consult with a GP from my usual doctors office. And she said me that I have CRPS, she told me to google it and boy did all those symptons come from me it was like I was writing it. I have been saying for a long time my body does not like getting old but now I know that I have problems and hopefully someone can help me also. I wish you well and hopefully we both get good help.

  3. Debbie

    Please help me help my friend! I am hours away from him and he is wracked with pain such as I can’t even imagine, and his positive nature is eroding.

    He is mad at his family for making him go to doctor appointments during corona. I don’t know if that was wise or not, but they thought he had kidney failure or a blood clot (as far as what he is saying, I believe both were negative). He is saying he is meant to die. He has a fever and thinks he has corona from the doctor visits, and is very angry at his family. He lives alone and has food delivered. Of course, I cannot travel to see or help him.

    He is not interested in support groups or anything alternative, as suggested by some of his friends on FB. They have offered to help him find groups or alternative practitioners (to help with the pain). He says it is all a waste of time and effort and that maybe he is just meant to die.

    He has always said he would not harm himself, but I am worried. I don’t know his family. He and I worked together years ago and have stayed in touch. He seems to like FB messaging, so that is what we do. I am so often at a loss of words.

    What can I do???

    Thank you.

  4. Calei

    Hello to everyone.

    I was diagnosed with RSD in early 2001. I was a model. I worked my tail end off to get somewhere. After years of working crappy jobs and with crappy people. I finally starting getting better work and pay. I had people coming to meet me from across the US.

    I had an accident and ended up with a diagnosis of RSD. I had gone through numerous testing like having my leg sumerged in cold ice water etc..to determine temperate by thermal testing..bone scans..xrays..mris..you name it. Very excruciating tests. This was done by an RSD expert in Golden, Colorado.

    Bye bye modeling career.

    Then I got to go through the stigma of picking up my meds that included narcotics. This almost always resulted in some kind of scowl or dirty look. So for the people who do read this that don’t have RSD..There ARE actually people out there that do NOT abuse their pain meds and who truly do NEED them. So don’t judge a book by it’s cover.

    As well as the many people and especially the medical care professionals who had/have no idea what RSD was or didn’t believe in it and had harsh judgements. Shame on you.

    It’s been a long ride.

    It’s very fustrating to have a disease that a lot of times..people can not see..so..they judge. As if we do not have enough to deal with. It has caused me to feel horrible shame. This is why I lived with this disease for almost 2 decades in silence.

    Not to long ago I had a form that suddenly appeared before I was to see my doctor in regards to suicide..or the discussion of suicide. This was after a previous appointment in which I described my pain as “the type of pain that could make someone wanna kill themselves or make someone want to die.” I did explain I wasn’t saying I was wishing to die or wanting to die..but really..how the heck else can I decribe this kind of pain sometimes?

    Anyways, my situation started with a torn Achilles tendon that broke off a piece of my heel bone with it..and it required a cast. I was in a cast for 9 months. It was taken off and checked and changed in between. After the first check about 6 weeks in..they discovered a massive change in my skin color (bluish/purplish that wasn’t bruising) and texture..with blistering. Also, I had nail changes I assumed was just from me being in a cast and my toes exposed to weather or possibly getting hit from time to time.

    Fast forward a few years and car accident with mutiple injuries. I had 3 knee surgeries and 2 shoulder surgeries. A blot clot after the 1st knee surgery that was a foot and 1/2 long almost killing me. I never believe I mentioned the RSD during that time again based on the stigma at that time. Sadly back in those days several docs seemed to think you are a drug seeker if you say you have RSD even when you don’t ask for meds.

    I got to the point to where I was going to many Neuro’s because the docs thought I had MS or ALS. So I have also ended up with a MS diagnosis…after initially them assuming it was ALS. Again I never brought up the RSD not knowing if it could be related as well as the stigma and shame that goes along with it.

    Eventually my gait became so bad and of course always extremely painful that I could barely walk. I had been in so much pain for almost 2 decades so I went along with the idea of getting a knee replacement despite being too young for one. I had zero cartilage in my knee. That was hell and has ended up pretty bad.

    I’ve noticed through out the years how I’ve changed so many things to help me with this disease. Like super super soft bedsheets..super soft clothing..wrist/ankle/leg/foot compressions (some even just to avoid a excruciating swipe of anything not soft across my legs/ankles/or feet)..10s units..a cane for walking..miniature fans for the heat that comes off my skin causing massive sweating..and other kinds of devices that I’m sure I’m forgetting…

    I’m scared to go to another doc because of the stigma amd shame. I’m in excruciating pain all the time. I have days where I can barely move let alone walk. I have a skin temperature on my right shoulder that is usually over 100 degrees and makes me have severe sweating and feel like I’m running fever when I’m not. I have a more than 1 degree difference in my arms and legs (from the ride side to left). My right foot/ankle/ and part of my leg has remained ice cold. I have the color changes still. I have the nail changes still. I have very little if any hair growth that goes on one sometimes both legs (not complaining about that 🙂 ). I still have the scorching burning pain as if someone is torching my body with a rod of lava/fire..I believe at this point I’ve had it everywhere at one time or another..including my ear, face, and even throat along with the rest of my entire body and even straight down the back of my spinal cord. Right now..its the worst in my shoulder/neck. I was also diagnosed with cervical dystonia there.
    I’ve had problems with speech from time to time. Problems with concentration. Problems with finding the exact word I want to say or losing my train of thought etc. I have had problems with swallowing. I don’t know which of that stuff might also be related to RSD.
    I’ve had terrible muscles spasming almost everywhere that cause jerking and twitching…in my feet, legs, hands, arms, neck, and shoulders. I’ve had tremors. I’ve have hyper reflexes…to slow reflexes..to no reflex. I have no idea if that is anything related to RSD.
    I’ve experienced things that my docs have had trouble believing until they see it or witness it for themselves. I only get told it’s a Neuro/MS response. Nobody knows. I have no idea if any of that is related to RSD.

    I’ve lost so many fake friends than I can even count.

    RSD is like the wind. Just because you can’t see it..doesn’t mean it’s not there.

    Without my relationship and faith in Christ..Who knows where I’d be.

    It truly makes me sad to know that this is called the “suicide disease.” But, for numerous reasons I can understand why.

    For those of you suffering with RSD..I pray for you. After 2 decades..believe me..I understand what you’re going through. Just know..You are not alone.
    Thank you for this article. God Bless you all. Keep fighting.

  5. Calei

    Oh, I also forgot to mention that the suggestion of amputation of my leg was also suggested 2 decades ago. That I guess was also another way to get me to not want to talk about my RSD or seek other doctors for treatment.

  6. Cassie C

    Thank you for sharing your opinion and I appreciate your article and the gravity you bring to the fight. I would like to make one small suggestion in response to this sentence: “ It is a condition that won’t kill you, and, that’s the bad news.” Before making definitive claims to public that CRPS cannot kill you, please read this article and many others like it. CRPS unfortunately can and does often lead to organ failure which will eventually kill you and chronic pain shortens lifespan in and of itself. To say otherwise is misleading and doesn’t present the urgency that is necessary to describe CRPS. What I think should instead be said is, CRPS can and does lead to other issues which can kill you like cardiac and other organ failure if left untreated. Or CRPS is destructive and has the potential to cause fatal problems. I am living proof. I am under 40, working on 5 years of CRPS, and now have brand new heart problems, blood circulation issues, spondylosis, dextroscoliosis and osteopenia in both legs among other issues, all because of complications due to CRPS. If some of these conditions are left untreated, they will eventually kill you, especially heart problems. Remember, CRPS is a dysfunction between all your systems at once: autonomic, central and peripheral. Chronic inflammation without end which is one of the mechanisms behind CRPS will kill you because it invariably causes OTHER problems. So just to keep that in mind. CRPS is an urgent matter, one you want to try and put into remission immediately upon diagnosis. Early detection, early diagnosis, leads to greater success in remission. Keep fighting Warriors – Warriors One! We can do this! We have to become our own experts on this disease. We have to spread awareness. Educate Yourself so you can Educate Others! There’s not enough education in the medical community. It needs to start somewhere! With us! Also go across the world for information, most all other countries have better Research & Development than USA. We need to catch up quickly!

    https://www.rsdinfo.com/Various_Complications_of_Complex_Regional_Pain_Syndrome.pdf

    https://rsds.org/crps-gi-nurse-frustration/

    http://www.rsdinfocenter.com/blog/2011/12/rsdcrsp-can-involve-internal-organs/

    https://cme.dannemiller.com/articles/activity?id=312&p=12

  7. Karen SE

    Thank you for writing this piece. It is important to recognize the psychological impact of constraint and relentless pain. Pain that gets worse in sensation as well as pain that travels until it is properly treated. CassC adds a critical point: this disease causes systemic problems that may well become life threatening. We need to include systemic effects and secondary consequential medical conditions that cause even greater harm as well as give patients a sense of hopelessness that visits patients who have endured this disease for too long. And that happens because medical schools do not teach this disease. It’s something reserved for residences but only in specialties expected to address it. Anesthesiology. Neurology. Psychiatry. If we do not educate primary care physicians about this disease, they will not know when to refer out to a specialist. The patient will languish without treatment.
    De-sensitizing strategies used very early do help. They’ve been proven to reduce pain and prevent the disease from settling in or traveling . But if the primary care physician doesn’t recognize this they cannot advise the patient or send them to physical therapy. Then it becomes too late. The disease settles and spreads. The pain makes the limb untouchable. Unbearable. Nerve blocks become necessary. Maybe spinal stim implants. And typically many doses pain meds are prescribed over a long period of time. While we need to be “grown ups” about pain meds, we also need to understand they do not treat the underlying mechanisms of this disease — neural inflammation, vascular inflammation. I hope more research is done on this and other “rate” diseases so that patients and their families do not need to needlessly suffer the pain and trauma CRPS causes everyday. Likely autoimmune.
    Sending virtual hug to every CRPS warrior. I have CRPS. First diagnosis 20 years ago. I don’t think it goes away. Your body reacts to injury or surgery each time with CRPS. And CRPS disrupts healing.
    But it can be managed with early detection and the right treatment and support. No physician should ever let their patients go too long without addressing this horrid disease.

    1. Derek

      Hi Karen, very true and informative post. I’ve been suffering with bilateral crps type 2 in both legs and feet due to spinal nerve damage during surgery. When you say it needs to be treated and addressed early…. what do you mean? What should be done as far as treatment? I’ve been told what it appears we all have been told, good luck your screwed and we won’t give you any meds either because criminals have made it so you sufferers get to suffer more. It truly my main question is what is the right treatment and support for if it were detected early. I’m about a year and. Half in so not nearly as long as you but it’s progressed so so so much in these months so I fear it’s too late.

      Thanks for you advice I really need the help and guidance.. 32 years old and feel like it’s over for me I have arachnoiditis as well. Got to love the system the amazing doctors who hate you for being complicated like I asked for this they have to google something or open a book your in trouble unless you find someone who cares. I’m getting tossed around like a rag doll doctors pushing me off like a hot potato

  8. Pamela Lindemann

    Thank you for bringing awareness to this issue. I came across your article tonight on the eve of bringing my 24-year-old son to surgury in the morning for a spine stimulator. He acquired repetitive motion injuries at work consisting of cubital tunnel syndrome in both elbows and carpel tunnel syndrome in both wrists. He had ulnar nerve transposition in one arm and carpel tunnel surgery in one wrist. But he never had surgery on the other elbow or wrist because he developed CRPS. He also passed out and broke his nose during this time due to the pain and had reconstructive surgery. His entire upper body is wracked with pain. We are constantly having to fight the insurance company to get pain medication and the pharmacy will not let us pay for it ourselves because my son is on Medicaid and its against medicaid regulations for a a patient pay for his own meds. He’s between a rock and a hard place… cubital tunnel syndrome can cause more nerve damage if not fixed, yet if he has anymore surgeries the CRPS would surely intensify. He was an active skateboarder, athlete, arborist and loved to play video games. He can do none of these things anymore. He hasnt been able to work in more than a year. His workmens comp claim was denied so he has not had income in more than a year. He can’t stay or sit in any one position for any length of time, includin, can’t drive and said he feels his organs are giving out. He is becoming increasingly depressed and has asked me to take him to a suicide assisted state so he can stop the pain. It’s more than he can bear and more than a mother can bear. This syndrome is real and it needs to be recognized as the disabling disorder it is so more treatments can be found. If the spine stim doesnt work, I know I’m going to lose my son. I have already stopped two suicide attempts and I am sadly beginning to believe it may be more humane to help him end his pain.

  9. Jacque Rumple

    I. Was diagnosed with C.R.P.S.Approximately 1 1/2 years ago this followed Countless doctor visits where I was told to just raise my leg and add ice. Well. It wasn’t until I visited a special neurologist who took one look at my leg and said you have CRPS numerous Tests followed in order to validate the diagnosis every day is a day and he’ll and lucky for me I found a pain clinic Associating with the hospital still many doctors require Education requiring CRPS Many health care providers have no clue regarding your pain levels and no one can tell us about our future. I started with pain, cold, massive swelling and discoloration in my right foot and shin. The pain and swelling proceeded in my right han and then up my left thigh, passing the thigh and up to my breast bone. During this process my left hip became very displaced eventually leaving my one leg 3 1/2 centimeters shorter than my right. Needless to say I was forced into a wheelchair as I can no Lott use my left. Unfortunately my right leg is beginning to show symptoms of my disease VERY scary. Went to the neurologist to see if he had any ideas. He began by listing the Mesa I was already on. I assured him I was not looking for more medication just a prognosis which he naturally could not provide. I was happy to find a group who experience my life and will continue to read your posts

  10. Lori

    Thank you Cassie C for all of the links and for everyone else’s comments and info.
    This is the first time Cassie I have found a link that covers all my questions and issues.
    So much it made me cry. Knowing certain things were not in my mind. Especially with regards to female issues. I have not read one article or had one dr in 2 yrs that understood the pain and how mentally disabling it can be when you love someone and have such serious issues. I cant wait to send the link or take it to my drs! You have me hope!
    Bless you. ❤

  11. Casey Sebastian

    I have it so bad. I can’t walk, can take a bath
    I’m and so much pain , I can’t ride in a car. I can’t get to a doctor.
    I need help. I don’t have insurance. My grandma is letting me live with her right now.
    Please someone help me. I can’t stand the pain. I had it since I was 10 years old. It gets worse. When I was young UC hospital try to help me but I’m 28 now no money. I tried to call a lawyer but got no call back. I pray all the time for someone to help me. Maybe if I had alot of money someone would help me. Please help me someone. Please please

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