This is a terrible question to bring up, but I would like to ask the long-time sufferers and full-body RSDers in particular ... do you think that RSD can be a cause of death?

I know that indirectly, the inflammation can weaken the heart and cause heart attacks, and also bring on strokes. Has anyone on this board heard of someone dying from RSD (besides suicide)?

I don't think RSD itself will EVER be listed as a cause of death on a death certificate. RSD isn't a fatal disorder by any means. No one will ever die from rsd no matter what some people out there might say. It does cause problems with the body, a lot of things we live with up our risk of heart attack, stroke, high blood pressure. The lack of circulation increases our risk of heart attack and stroke, high blood pressure also increases the risk, the pain increases the risk. If the rsd goes internal it can cause the heart to begin beating irregularly leading to a massive or even just a regular heart attack.

Having said that, I knew one woman who died about a year after I got rsd. She was in a group I was in. She was such a good person and I still miss her. She died of a massive heart attack brought on by rsd. She was one of the few who had it internally and she'd had a couple of heart attacks previously. Her cause of death was heart attack not rsd. The rsd didn't cause her death at all, her heart caused her death. I've known a handful who died in the 1st two years I had rsd due to suicide.

I didn't vote on the poll because it isn't as simple as a yes-no.

Hugs,

Karen

Dear Karen -

I beg to quibble ever so slightly. I got CRPS/RSD in 2001. Three years later, at age 51 and without any (other) risk factors, I had a 100% occlusion of the mid LAD artery in my heart. In fact, it took some time to get a diagnosis of my chest pains because I had had a "clean" thalium (chemically induced) stress test six months before, which my internist has all of his post 45 patients do every few years. That and a routine CT calcium calcification scan in or around 2002 put me at a "zero risk" of developing coronary artery disease (CAD). The only thing that saved my life was that I was at that point generally in good enough shape that I had excellent "collateral blood flow" across the heart. Consequently, I had only minimal damage, and most of that tissue turned out to have gone into suspended animation and has since come back, with the aid of a stent and a lifetime supply of Plavix.

I've since learned that one of the things that CRPS does in the brain is trigger the production of a number of proinflamatory cytokines, specifically a bad boy called Interleukin-6 (IL6), which longitudinal studies (available on request) have shown to be the single most effective predictor of death from CAD: basically, the higher the blood levels of IL6, the greater ease with which platlets and the like bind to artery walls.

Now, you say that the RSD caused your friend's death (for which I am truly sorry for you) but it did not kill her, the heart attack did.

We could be splitting hairs here on causality, but look at it this way, if it would be harder to buy life insurance because you have CRPS and the insurance companies knew - from an actuarial perspective - that people with CRPS tend to die somewhat more often because of heart attacks, it seems to me perfectly reasonable to say the the RSD killed them, abeit through a multi-step process. It's not just a matter of risk, or if it is, when it happened to me, it was the only risk facto I had. Adopting the lawyers' "but for" [it would not have happened] standard, the RSD did it.

Mike

Maybe I didn't make myself clear the 1st time, but I said that rsd increases the risk of things such as heart attack, etc. I didn't say that you had to have blood clot problems and such before rsd and therefore you're more likely to suffer a stroke or whatever. 99% of the people I've met were perfectly healthy before rsd and now catch every little bug that drifts by, blood pressure problems,etc. RSD screws with every bodily system.

I also did [I[not[/I] say rsd killed my friend. Or should read her heart attack caused her death.

RSD is not deadly and I never said it was. I specifically said I have not, do not, will never say or believe rsd is fatal and causes people to die because it doesn't! I apologize if you misread my post but I hope this post won't be misconstrued.

Hugs,

Karen

Karen -

You misunderstand me, or rather I understood you in the first place. It is I who believes, once one analyses all of the causality going into heart attacks via pro-inflammatory cytokines, that RSD can indeed be fatal.

With all respect, I see the alternative position as indistinguishable from asserting that smoking 3 packs a day won't kill you: it will only give you cancer or a heart attack.

Mike

Dear Karen and Mike., please take alook at this site, the handbook has been made free by Dr. Tennant. it stresses why diseases like rsd can caluse death. Please let me know what you think. I rely heavily on this handbook. thanks cz
http://www.helpmyhurt.com/2008/08/17...-for-survival/

Six years ago at the age of 40, I was diagnosed with high blood pressure which fluctuates according to my pain levels by using a pain diary,24-hour BP monitor, and home bp monitor.The specialist was very surprised by the close correlation, she said my risk of a heart attack or stroke was significantly increased over a 5 year period. After unsuccessfully trying many different common blood pressure medications, eventually clonidine worked which is used for both BP/pain, and I have been on it ever since. Mike, or anyone else, I'm wondering if being on BP reducing medication lowers pro-inflammatory cytokines (or specifically Interleukin-6 (IL6) as mentioned by Mike), and thereby outweighs increased risk of coronary artery disease/stroke? Also, is the increased risk of CAD/stroke with RSD independent of fitness/lifestyle issues?

Thanks,
Booklover

Karen, in fact people do die from CRPS. In cases where the immune system fails, opportunistic cancers and so on take hold. There is also n immune reason for the heart attacks, as inflammatory conditions in the body take over. I can provide a refr for this statement too.

Moreover, Schwartzmann notes clearly in his latest paper Systemic Implications .. How internal muscles are affected by CRPS, and that often heart attacks are misdiagnosed in CRPS for this reason.

One paper I read, and I shall find the refr indicates that those who've had CRPS longer than 30 years have a very highly likelihood of dying of secondary conditions. All autoimmune conditions challenge us in this way. Ours does too.

Unless one can get both inflammation and pain and control one stands a low chance of a long life. A blessing in disguise, in some ways as no person can endure what CRPS does to the body without long term consequences.
Kindest,
Meg
Aug 5th 2013

I am not sure what the answer really is but I do know that when I had to go to a doc in Illinois for an IME my husband asked him if it was a death type of disease. The doc replied to my husband and I that it is not a death defying disease but it can shorten your life span. So my answer is maybe and maybe not. I have never heard of anyone dying from this but it can shorten your life span.

Sincerely,
Tracy(Screwballpookie)

Hi I have had RSD Dx ed in 1968 and it has been really hard to talk about but I shot my self in the heart with a 308 Rifle(a deer rifle) to my heart ,my feet and hands so crippled I can barely walk or use my left hand I do have a couple fingers on my right hand .I'm not sure if RSD ever killed anyone (sometimes the muscle spasms from the accompanying Fibromyalgia spasm in my throat and I cant breathe ) but suicide is the part of the RSD that does kill so many RSDers I tried once and lived through shooting myself but made the RSD much much worse (obviously I'm no genius) but I try to livre in the moment now and I livre at a place (wekll you probably dont want to read my story here but you can write me rsdno@msn.com that addy is only for RSD E Mail ,I think it was a good question to ask ,I remember all these people who had had RSD longer than IO but several took themselves out (suicide) I think Im the oldest fool now but after failing suicide once I figure that was enough . Unfortunately pot smokers try to make people who are in severe pai n look like drug addicts (im dependent I take my meds as prescribed ) and the last couple Pain Seminars sentiments were really against opiates . Pot makes me trip on how severe my pain is and since I have taken meds since I was young I never took any Alcohol all the pill bottles said my meds would not mix with alcohol . If Pot helps you thats great ,if it is all you need for your RSD (I would bet my life you dont have RSD) pot may help other things thats great but these Pot heads are attacking Opiates saying only pot is good ,why its enough to make me Umm well uhh jeez ,we all handle things differently and I wish everyone peace it is the biggest thing RSD has taken from me since my wife mom etc passed on Good Luck to all
Gentle Hug rsdno