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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!

——————————————————-

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.

30 Comments

  1. Elsa Lakes

    I have been diagnosed with RSD after reconstructive surgery on my wrist due to a fall at work now I have a plate in my wrist and 3 digits don’t want to bend and I can’t make a fist it seemed to get better when I was going to PT but worker’s compensation won’t pay for any more therapy because my pain level isn’t high enough and that I can do exercises at home. I had surgery December last year my fingers are cold all the time with tingling and numbness sometimes burning but not much just clammy some times and when my hand touches water it fills like I have something on them and when drying them they still feel wet.My dr say I have RSD I really don’t think it will go away any time soon and I don’t think I can go back to the physical job I had for 36 years so I’m thinking about Retiring I ware a knit glove when my fingers get really cold and they ache all the time so my thing is why they won’t give me the therapy my dr has been asking for ? What should be my next step and it’s very frustrating because I can’t use my fingers no strength and I drop stuff a lot.. any suggestions maybe something I can talk to my dr about that may help me. Thank you Elsa ps I’m going to be 62 in a couple of months.

  2. Bryan

    August 17 2010, I remember that date well. I was 26 years old and in my prime, healthier and far more active then most people.That was the day my foot got crushed and twisted in my deformed steel toed steel plated shoes by being run over by a crane truck at work. The doctors did not set my bones, and immediately threw me into a cast. Several casts later the doctors decided my bones were too far apart and not healing. That’s when the intense pain and cold started setting in. Doctors ignored that I was in so much pain, and stimulated bone growth hoping that would do the trick. It didn’t. My symptoms worsened over the next few months, and about a year after my accident I was diagnosed with crps.
    At the time I was boarding with my sister and her family, and I really really needed that support. I couldn’t drive myself to the hospital for the constant visits to the army of doctors I had to see. The doctors did not want to do nerve blocks stating I had crps for too long, and the chances of it helping would be too low to merit the effort. So I was prescribed basically every type pills for pain, nerves, anti depressants, pt in various forms, iv treatments ect, I’m sure you all know the regimen. Nothing helped, it was as if I was immune to fentanyl or any other pain medication. I remember my doctors telling me to double the patches on my body then double again and again until I had enough of that. Over the years visiting many pain clinics, the doctors eventually gave up on me. I didn’t want to be taking all that extra junk that was doing nothing and had several doctors agree I should quit them all. I was told to try and live my life as best I could and scurried out the door. Never did I feel so abandoned. Eventually I couldn’t handle the strain I was putting on my sister, and got my own place. That it turns out was not so good. I shut in completely becoming a hermit dealing with very severe depression. Then my sister died young of a heart attack – my only real lifeline and support at the time. I was slipping away, I couldn’t replace what my sister was helping me with. Grocery shops were out of the question, I starved alot. I attempted suicide very shortly afterwards, researching the best method. I failed, knocked myself unconscious from breathing helium. Then I got ‘rescued’ by my other sister. I’ve stayed with her until now. I am trying to find a mental balance, I know I need help but absolutely hate more then anything becoming a burden on those I love. Crps for me is a constant fight that almost always feels like your fighting up hill in the snow both ways. Crisis lines have become my number 1 go to. I know my story doesn’t sound very rosy, and I’m not going to throw that spin on it, but hey 11 years of crps and I’m still here. I do still hold hope for a cure, infact through research I discovered Platypus venom does essentially the same as crps but only temporarily, maybe one day someone will make a platypus antivenom and test it on crps patients. Thanks for sharing all your stories everyone, it does help to know I’m not alone in this.

    1. Peter

      I’m there with you Bryan. I’m 26 right now, but I was diagnosed with RSDS when I was in middle school at 13. Woke up one day and fell on my face because my right leg suddenly hurt too much to stand on. Been through countless doctors and schools and meanwhile tried to understand what was happening to me. Was pretty tempted to kill myself or at least chop my leg off to stop the pain, until it spread elsewhere. Realized that if I left I’d only make the rest of my family deal with the pain though, and been sticking through it mostly for the sake of others. Dont have that much physical pain nowadays but the mental strain and consequences of a messed up childhood/schooling still stick with me. I know that others have it worse though, and Im just here to try and be as kind and helpful to others as I can. I can walk and help my mom with chores around the house now so thats really nice, but its hard when people question why Im not hard at work or studying at 26 when I’m sti; just trying to survive day by day. At least we’re alive though, that’s something all in itself I guess.

  3. Roshie80

    I’m crying as I sit here reading these stories. I’m 41 years old and miserable. Almost 2 years ago, I twisted my ankle walking up my stairs. I was taking my twin boys up for bedtime,and I tripped, taking all the weight of the fall in order not to drop the little guy I was holding. I did the ice and elevation and all that good stuff, but after 10 days it was still black and blue, still swollen, and still hurting. I went to the Dr where they took x-rays and told me I had soft tissue damage and to stay off it a little longer. A month later, I developed neuropathy in my toes.I went to the ER who didn’t do anything except tell me to back to regular Dr. So I did. Blood tests and x-rays were normal.That led to a referral with an orthopedic Dr. He was dismissive told me I just needed PT. Covid was coming very strongly about this time. Luckily, I never had the PT and I can only imagine how excruciating it would have been. A couple months went by. My ankle and foot were looking worse-swelling, discoloration, skin thickening, nail thickening, more neuropathy…I had vascular Doppler and more blood tests, all normal.By November(a year later) my other foot and ankle are hurting. My feet are rolling inwards, I have a limp, and every step I take is painful. I did a telemed call with a Dr who called in some vitamin D and a muscle relaxer. She said to have more scans and blood work in December and come to the office on January. No call ever came for any appointments. So I’ve spent this year getting worse, losing my quality of life, unable to play with my children, becoming more depressed and angry. I have done a lot of searching and truly believe this disease is what I have.I finally found a pain management doctor in my town who has CRPS listed on his website. I was so happy thinking I might finally be acknowledged. I called to make an appointment, but they don’t take my insurance. I’m stuck. I’m a single mom of 4 boys, miserable, scared, lonely, and sick of life. I think finding this page is what I needed. I will keep pushing for answers. I’m praying for all of you and your loved ones.

  4. Desiree

    After stage four it affects the inner organs. My son has CRPS. The worst case any of his doctors have ever seen. He is totally bedridden now. He eats 9 cups of food a day and continues to lose weight. He looks like a skeleton literally. I’m sure it has affected his heart and his kidneys also at least now maybe his lungs. He is dying. When they say you don’t die of CRPS??? If it affects your inner organs then you can die of CRPS right?

  5. Paula Meesig

    In January 2019, I had surgery and a plate implanted for a broken wrist. By the end of February, I had all the classic symptoms and increasig pain of CRPS plus a froze shoulder. After having 3 ganglion blocks, an infusion was the next course of treatment. Instead, I pleaded with another surgeon to remove my plate. He agreed. The day after surgery, the burning pain around my wrist and the icepick pain shooting up my arm stopped. I have almost recovered with OT. My hand and wrist have regained most of their strength and flexibility. However, from March to July 2019, I endured pain that was so debilitating all I could do was cry all day. I am lucky. Rarely does my CRPS flare up….only if I stress my wrist. But, I do live with the fear it might come back someday. I hope more research is done for CRPS.

  6. Nancy Heiser

    I was wondering if CRPS eventually can attack internal organs like the bladder, liver, heart etc. My CRPS started from a botched foot surgery and went from there. My internist, after cutting my meds 50% in 2018 prescribed fentanyl patches last week. But, since she was not able to answer questions from my insurance company’s Prior Auth committee fast enough, I was denied. Why are insurance companies involved with my provider’s scripts to begin with? I also fill the role of the sole caretaker for my husband who has Multiple Myeloma for almost 10 years. Some days are so bad I just move to the next praying it will be better. Thx for listening.

  7. Tanya Spiegel

    Had rotary cuff surgery on my right shoulder. Started out ok but then suddenly everything started getting worse and worse to the point any motion of my arm can send shooting pain. I feel like someone is ripping off my shoulder. Tried to do mri but pain so bad I just could not stand it and my crying made it impossible for them to continue. I have had injection into my shoulder that felt like my bones where shattering and I told the dr that he said “ it should not hurt” well it does and has only gotten worse. Got another opinion and was told I may have this? I’m so scared. I’m young I just adopted my third child in June before all this happened. I’m totally useless right now. Can’t lift him to change him. Can’t get my clothes on never mind someone else’s. How can I get my dr to see I’m in excruciating pain? And by the way I’m allergic to pain medication so this really has been a horrible time.

  8. 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

  9. 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. ❤

  10. 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

  11. 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.

  12. 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

  13. 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

  14. 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.

  15. 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.

  16. 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.

  17. 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.

  18. 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

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