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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

View Poll Results: Do you think RSD can be a cause of death (excluding suicide)?
Yes, and I know someone who died directly from RSD. 1 8.33%
Yes, I believe it can cause death but I don't know anyone with RSD who has died directly from it.. 10 83.33%
No, RSD cannot be a cause of death. 1 8.33%
Multiple Choice Poll. Voters: 12. You may not vote on this poll

RSD as a cause of death

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Unread 12-03-2008, 09:46 PM   #1
mollymcn
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Question RSD as a cause of death

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)?
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Unread 12-04-2008, 07:54 PM   #2
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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
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Unread 12-04-2008, 08:55 PM   #3
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Quote:
Originally Posted by GalenaFaolan View Post
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

Last edited by fmichael; 12-04-2008 at 10:54 PM. Reason: tone, age at time of MI
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Unread 12-04-2008, 11:47 PM   #4
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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.
Quote:
Her cause of death was heart attack not rsd. The rsd didn't cause her death at all, her heart caused her death.
Or should read her heart attack caused her death.

RSD is not deadly and I never said it was. I specifically said
Quote:
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.
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
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Unread 12-05-2008, 12:30 PM   #5
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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

Last edited by fmichael; 12-05-2008 at 12:46 PM.
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Unread 12-06-2008, 07:29 AM   #6
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Default Clear evidence that rsd and other intractable pain

Quote:
Originally Posted by fmichael View Post
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/
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Unread 12-06-2008, 07:32 AM   #7
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Default Below is from the Intractable Pain Handbook - RSD

Quote:
Originally Posted by CZZ74 View Post
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/
Severe, constant IP, causes the mid-brain area
known as the hypothalamus to over-activate the pituitary
and adrenal glands, which in turn produce excess
blood levels of adrenaline, cortisol (the bodies natural
cortisone), and related chemicals. Excess adrenaline
causes the pulse rate and blood pressure to rise, and
excess cortisol, overtime, causes loss of bone and
teeth, osteoporosis, weight gain, hypertension, diabetes,
and immune suppression among other complications.
IP patients MUST find out if they have this
syndrome, because it causes too many serious complications
if it is not controlled. For example, a pulse
rate or blood pressure that remains high, over time,
may cause any one of several cardiovascular complications
including arteriosclerosis, angina, heart attack,
and stroke. It is the author's belief that most IP patients die prematurely of heart or stroke complications.
Due to these complications, IP patients must obtain the pain control they need to keep their pulse rate
and blood pressure in check.
BLOOD PRESSURE AND PULSE RATE - CRITICAL MEASUREMENTS
Uncontrolled IP drives up the pulse rate to over 84 per minute. Many patients go over 100 per minute
when their pain is in a flare or breakthrough episode. Blood pressure may also go up over 130/90mm/Hg.
It must remain below this figure.
It is critical to understand that uncontrolled pain produces damage and aging to the body, and pulse
and blood pressure let you objectively know if you are in adequate control. You MUST obtain a blood
pressure - pulse monitor for at-home use. They are now quite inexpensive and can be obtained at most
pharmacies. I recommend you check your pulse and blood pressure daily. You particularly need to check
it during a pain flare or breakthrough episode to let you know just how much danger you may be in during
a flare. For example, if the flare drives up your pulse rate above 120 per minute, you are at serious risk
for a heart attack or stroke. I have observed a number of IP patients who develop angina (severe heart
pain) during pain flares and require nitroglycerine. Use your pulse rate and blood pressure to adjust your
medication. Always let your medical practitioners know what your pulse and blood pressure readings are
running at home. IP that causes blood pressure to elevate will not respond well to the high blood pressure
drugs used for ordinary high blood pressure treatment. Only adequate pain control will lower high blood
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Unread 12-10-2008, 01:28 PM   #8
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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)
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Unread 07-13-2010, 10:58 PM   #9
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Default RSD And Suicide ,Suicide is a true cause I

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
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Unread 07-13-2010, 11:06 PM   #10
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Default Poem

I met an Angel shhh was all I heard
And her wings were so much more beautiful than any bird
They shone the light of Heaven I dont know why
The Angel gently touched my face and said please dont cry
I told her how war and famine were more than the world could take
'Then I got the strangest feeling for this was what she spake
You are a child of God ,
Come play in his field
God wants you to have so much joy ,your sorrow will be healed
You can stay in Heaven until you want to leave
You can stay by Gods side with the words that you weave
And perhaps become an Angel who will nevevr have to leave
The Angel said " I have come to know you on this day "
To know the Child inside wont be hurt when you learn the Lord's Way
To say yes she is waiting for you with your whole family
Just try to remember the time on Earth is very short even if you do remain the last
Then she kissed my cheek
I felt my sadness leave and felt love again ,I could not even speak
Then I heard the Angel say goodbye son of Eve
As long as you can keep your faith ,she will never really leave
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