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)? :confused:

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

Clear evidence that rsd and other intractable pain
 

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/

Below is from the Intractable Pain Handbook - RSD
 

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

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)

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

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

Hard to answer...
 

I did have a very close and long time friend die after just being dx.w/RSD. But her cause of death was overdose of opiods. I'll make a long story short. She had problems with her cervical part of her spine, I've known this girl since we where 10 and she cracked her neck since I knew her, anyway she did damage to the neck and after many years of living in CA. and trying to get a proper dx. which she never got in CA. Finally her parents flew her to NJ and went to a PM Dr. and after some testing was dx. with RSD. She had been RX. opiods in CA. but not really the proper ones. Once she got the proper meds.the first round of meds. from the new doctor she took was to much and not the correct dose, by her own doing not the doctor. I believe she did this only out of feeling she felt finally I am getting some help. Her parents found her dead at 46 the next morning. That is my story and very sad.

This is not the first time I have heard that the west coast does not have a very good medical community. I am sure there are great doctors but hard to find.....But I have never heard of any one passing because of RSD.

I am so sorry to hear that gabby cakes. But do agree with you I liven southern California and saw about fifteen doctors without getting diagnoised. Even childrens hospital told me it was all in my head. My parents and went to bosons children hospital for a diagnose

Dear RSDno,
Wow, you are one brave person to have lived with this monster for so long and the after effects of trying to end your life. I don't know how you do it. You are my hero! I did want to die the first year of having this (over five years ago) because the pain was so intense and I had lost so much instantly the first year but then I started praying and realized that God left me here for a reason and each day I try and figure out what it is. RSD affects each one of us in different ways. I am almost quite sure an ME would never put a person passed away from RSD because not many people know what it is...even doctors! So, I believe they would be most likely to put heart attack, stroke, etc... just my two cents. Also, from an ins point of view if the ME put RSD and it came from an injury then workers comp would be sued by so many people they would be out of business. I believe when it is your time to go it will be that time so we need to make the best of our lives and do the best we can each day. Yes there are days I hate my life and yes the suicide rate for people with rsd is 76% in the first five years (very sad), but we just have to do the best each day...it is all we can control in life. You are an inspiration to us all. Keep the faith going. Take care,
kathy

Dear Tmullen and All,
I even had a doctor here in Pennsylvania tell me that he had the same type of injury when he was 8 years old and he NEVER got RSD...so then I should not have it either. I just looked at him like he was an idiot (which he was). I think no matter where you are you will have good doctors and then you will have quacks. The problem for us is trying to decipher between the two! BEst of luck to all,
kathy d

This is an excellent post and makes us all wonder...I have been having a huge problem with high blood pressure and it has made me think about everything I eat, because I have to certainly have to watch my salt intake. I have recently learned that high BP goes hand in hand with RSD and my doctor informed me that if I didn't get my yo yoing BP under control I would certainly have a stroke...he stated that he attributes my BP issues on RSD, so in some ways I feel that RSD can cause someone to die.

All I know..
 

is if RSD takes me..I want you all to go with me as I would be lost without you all up there sailing amongst the clouds...I too, believe RSD has an indirect affect on causing us to leave here prematurely... show me the light, baby!!

Much love, Kathy..KS!!:grouphug:

Hi,
 

One of those Fox stories mentioned suicides. I know between BT and NT we have seen 4 or 5 to die and all have been from suicide..
I know a lot of people around my area with RSDS and we are all still kicking. It may cause strain on our heart from the pain or maybe bring on other illnesses that can cause death. Haven't heard of a death by RSD only.

Ada

Honestly..
 

I believe from the stand point of our immune system..Running on 'flight" high day in and day out..This in time must take a toll on us...Opens us up to developing other conditions/illnesses easier than your average bear and that is ultiametly is a disadvantage to us...Our bodies are just not wired to withstand the constant pain and agony RSD presents us with..it takes a toll over time and that indirectly can be a bad thing..But by then I will be buying my ticket for a direct flight up anyway!! Tired of the hurt... heart and body!

Love, Kathy

It would be listed as secondary
 

It would not be listed as primary cause of death but depending on doctor, they would list it as secondary or third. Example if it was an heart attack, that was be listed as the main cause of death, then RSD would be the secondary cause an again it depends on the doctor. As you know with RSD some doctors don't even want to bring the word from there lips. I hope this helps.

You are always so positive Kathy, you are light! My hero :)
God bless you and everyone here
Lori

Dear Lori~
 

Slap me silly...my friend..Thank you for saying that!!! I was just scrolling thru this post and read your sweet note..I do want to take everyone here with me... Who else would understand me up there and heck..besides..I am afraid of heights!!

Lori..I want to share with you in that these last few weeks have been a trial and sad for me as my beautiful Mom of 80 yrs. of age is not well.. I had to place her with hospice care..she is suffering with many strokes coming fast and furious and demensha.... So I thank you for your kind words..They really were timely and sent my spirits soaring!!

Hugz my friend...Kathy:hug:

Doctors in Calif
 

hi I livre in Oregon and have a gret doctor I lived in tennessee and had a great doctor are you the gabby who told me of the Doc in Johnson city ? I worked as prescribing nurse for a pain Doctor in california some days he would have over 70 patients (I only worked one day a month for him 0 but he pioneered letting people decide what they wanted I shot myself and guns are worse than opiates but opiate misuse makes it hard on us all what works for one person doesnt for another .I shot myself in heart making my RSD worse if possible because of the just say no reagan mentality and with no meds I went to a Hospital for drug addicts (treated worse than Mierda)and couldnt bare the pain i had RSD since 1968 I saw no way out but my rifle although I think God is great to make our decisions others is unbearable ,I have lost friends to RSD or lack of decent treatment whatever it was they needed meds had taken the edge off for me and I pray all get the help from this monstrous disease ,hey I wrote a poem a few people back (probably not very good but I try
Gentlest Hug rsdnoQUOTE=gabbycakes;675363]I did have a very close and long time friend die after just being dx.w/RSD. But her cause of death was overdose of opiods. I'll make a long story short. She had problems with her cervical part of her spine, I've known this girl since we where 10 and she cracked her neck since I knew her, anyway she did damage to the neck and after many years of living in CA. and trying to get a proper dx. which she never got in CA. Finally her parents flew her to NJ and went to a PM Dr. and after some testing was dx. with RSD. She had been RX. opiods in CA. but not really the proper ones. Once she got the proper meds.the first round of meds. from the new doctor she took was to much and not the correct dose, by her own doing not the doctor. I believe she did this only out of feeling she felt finally I am getting some help. Her parents found her dead at 46 the next morning. That is my story and very sad.

This is not the first time I have heard that the west coast does not have a very good medical community. I am sure there are great doctors but hard to find.....But I have never heard of any one passing because of RSD.[/QUOTE]

RSD and death
 

Rsd might not directly cause death but what happens if you get rsd of the mind? My body now has a whole set of positions in the neck which alter the function of everything. Doctors may try brain stuff but I've got a bad outlook as I lost normal function of my legs this week and it already has every other bit.My mind has produced positions and as you try to sleep relax etc it throws you into the poison.I am desperate now as my bp is constantly over 190 and drugs accelerate it further.Does anyone think there's help possible in US.Remember I did have 7 years of recovery from exercise but the disease has changed character and is faster and more violent than before.

Do not loose hope my friend for in the midst of our suffering is our greatest of friends. Just remember you will never be alone you will always have someone by your side.
Can you tell me what the dr.'s are doing for you? I will pray for your relief.
:Boy(angel-flying)::Girl(angel-flying):

Remember this thread well
 

I read my old response to this thread. My friend you suffered for years without knowing what was wrong and I believe by mistake ingested to much medication once she finally got some relieve and passed on. You can read the original post above. I don't believe the RSD per say had anything to do with her death. A year prior to her passing we spoke a lenght about her not being able to find a doctor in CA. She was not being treated by an RSD doctor and was really stressed about her condition. She she could not find a good doctor, her husband and son where not supportive at all. A year later her parents insisted she come back to the east coast which she did.

I'm rambling. The point I'm trying to make is always try and get the proper help because sometimes when we get into an RSD funk, I know with me it just happened, and if my husband did not demand, and he never demands anything, I go to the doctor last Thurs. I truly don't know how I would be feeling today. I went got some medication changed, will be doing some testing and was told to mellow out in plan english. I don't want to sound stupid but sometimes it's just easier to forget about the RSD and I push myself until it pushes me back. We all have to think of ourselfs more. I will try and go back to the gym and try and think of myself more. I have gotten away from working out it since my mother in law in so sick with cancer and we are caring for her along with aids, nurses she wants to be home. She is at the end and we really want to honor her wishes. My husband is an only child so there is really not any one who can help. Hospice is just great and we hired a private aid who is wonderful and will try and keep her home for as long as we can. We also live an hour plus away so it has been a lot of running.

Please everyone take care of yourselfs.

Gabbycakes

gabbycakes,

My prayers go out to you and your family for your terminally ill mother in law.

Thank you it has been an very emotional and difficult time.

Gabbycakes

CRPS as a cause of death
 

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

do I believe that crps can kill? complications from crps, yes. Directly, no.
I have been living with this disease since august 2009. It set in days after I was injured during a rescue, I lifted over 16oo lbs to save someone's life, to say the least this did massive damage to my body. since then I have had it spread thru my entire body and it is now starting to go internal, even with the meds and ketamine infusions. to this day no matter how I suffer, suicide will never be part of my life or more precisely the ending of it. I have three children all under 10 years old and I am a single dad with full custody, this is my strength.
For all those who suffer with this illness, I wish you the strength of love

To rsdno and lothgar
 

Rsdno, what was the initial trauma that caused rsd and did you get intensive physical therapy soon after the initial trauma? Please look into the center for treatment and research for rsd in Tampa. They currently have the only ketamine therapy approved in the US and the price is worth it if you are in that much distress. I don't know if it will help but it's something and I know I will find a way to save up for it myself (it's currently 7,500 for the ketamine infusion) and I don't consider myself near in your condition.

Lothgar, you were diagnosed in 2008/9? Either way, the amount learned about rsd between 2004-2008 was about 10 fold, much less in 1969. Early intervention and dx is both essential and nearly impossible for rsd patients, so please be happy and lucky enough to have a recent dx and several small children to occupy you bc without those, you might just wonder if it's better to not have your family suffer your life and end it for them.
As for if rsd can cause death, absolutely. I have great heart rate always less than 70 resting (usually 60s) and low blood pressure. However I feel my heart and lungs spasm which is why I Googled "rsd average life expectancy" and found this thread. I was diagnosed at 20 in 2004 but the initial trauma was 2002. I was in an accident with a semi truck with no reflectors that did not yeald to my right of way. My right ankle was broken in the talus and my foot was turned backwards from the outside. Luckily I had early aggressive physical therapy which helps me keep range of motion but the pain and emotional distress is sometimes something I wonder if God "wants" for me and I question if it's worth the risk to commit suicide. The affects have spread throughout my entire right side of the body including face and my left hand and left knee down. BTW if any doctor suggests a cortio-steroid injection, go somewhere, anywhere else bc they have no idea what rsd is. It will most likely make it worse, at best it will do nothing. I had a doctor kick me out of PM for "faking" after the injection when he asked me how I felt, and I said "same" he told me to stand up and I collapsed on the floor. He just said "your faking, get out" and he left me there. Luckily the nurse helped me up and into the car. Needless to say he dosed me in full that month but I never went back (Dr. Abd Benni - Brandon FL)

i believe rsd can indirectly cause death. my heart and immune system have weakened since i've had rsd and i feel like my body is slowly deteriorating. i don't know of anyone dying from rsd but do know of somone who committed suicide. don't know if that was the reason but they did have rsd and depression. don't mean to sound depressing. just telling you what i know to be true. having had rsd for almost four years, has made me sicker then i've ever been in my life. hope they find a cure soon or a way to go into remission for us all.

BP fluctuating with pain, clonidine rx and residual risk
 

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