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)


advertisement
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, 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%
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%
No, RSD cannot be a cause of death.
1 8.33%
Multiple Choice Poll. Voters: 12. You may not vote on this poll

Reply
 
Thread Tools Display Modes
Old 01-23-2012, 06:10 AM #1
gabbycakes gabbycakes is offline
Member
 
Join Date: Oct 2008
Posts: 518
15 yr Member
gabbycakes gabbycakes is offline
Member
 
Join Date: Oct 2008
Posts: 518
15 yr Member
Default 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 is offline   Reply With QuoteReply With Quote
Old 01-23-2012, 12:07 PM #2
alt1268's Avatar
alt1268 alt1268 is offline
Member
 
Join Date: Aug 2011
Location: delaware
Posts: 904
10 yr Member
alt1268 alt1268 is offline
Member
alt1268's Avatar
 
Join Date: Aug 2011
Location: delaware
Posts: 904
10 yr Member
Default

gabbycakes,

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

.


GOD help me be faithful in the midst of my suffering. Alt1268
alt1268 is offline   Reply With QuoteReply With Quote
Old 07-14-2010, 07:20 AM #3
gabbycakes gabbycakes is offline
Member
 
Join Date: Oct 2008
Posts: 518
15 yr Member
gabbycakes gabbycakes is offline
Member
 
Join Date: Oct 2008
Posts: 518
15 yr Member
Default Hard to answer...

Quote:
Originally Posted by mollymcn View Post
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 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.
gabbycakes is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SandyS (07-14-2010), wswells (07-17-2010)
Old 07-14-2010, 09:22 AM #4
tmullen tmullen is offline
Junior Member
 
Join Date: Oct 2009
Location: san diego
Posts: 57
10 yr Member
tmullen tmullen is offline
Junior Member
 
Join Date: Oct 2009
Location: san diego
Posts: 57
10 yr Member
Default

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
tmullen is offline   Reply With QuoteReply With Quote
Old 07-15-2010, 08:38 PM #5
kathy d kathy d is offline
Member
 
Join Date: Nov 2006
Posts: 327
15 yr Member
kathy d kathy d is offline
Member
 
Join Date: Nov 2006
Posts: 327
15 yr Member
Default

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
kathy d is offline   Reply With QuoteReply With Quote
Old 01-22-2012, 01:46 AM #6
rsdno rsdno is offline
Junior Member
 
Join Date: Mar 2007
Posts: 62
15 yr Member
rsdno rsdno is offline
Junior Member
 
Join Date: Mar 2007
Posts: 62
15 yr Member
Default 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]
rsdno is offline   Reply With QuoteReply With Quote
Old 09-29-2010, 12:45 PM #7
cindyrsd cindyrsd is offline
New Member
 
Join Date: Sep 2010
Posts: 2
10 yr Member
cindyrsd cindyrsd is offline
New Member
 
Join Date: Sep 2010
Posts: 2
10 yr Member
Default It would be listed as secondary

Quote:
Originally Posted by mollymcn View Post
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)?
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.
cindyrsd is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSD ME (12-20-2014), rsdno (02-16-2016)
Old 02-10-2014, 12:26 PM #8
lothgar lothgar is offline
New Member
 
Join Date: Feb 2014
Posts: 5
10 yr Member
lothgar lothgar is offline
New Member
 
Join Date: Feb 2014
Posts: 5
10 yr Member
Default

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
lothgar is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Brambledog (02-10-2014), RSD ME (12-20-2014)
Old 12-20-2014, 05:09 AM #9
Kymee Kymee is offline
New Member
 
Join Date: Dec 2014
Posts: 2
8 yr Member
Kymee Kymee is offline
New Member
 
Join Date: Dec 2014
Posts: 2
8 yr Member
Angry 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)
Kymee is offline   Reply With QuoteReply With Quote
Old 12-20-2014, 12:33 PM #10
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
Default

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.
__________________
RSD ME
.
RSD ME is offline   Reply With QuoteReply With Quote
Reply

Tags
deaths, heart, poll, stroke


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Death houghchrst Depression 15 10-20-2008 07:55 PM
A Death in Edmonds - drugs cause death -2 conflicting articles on PD lou_lou Parkinson's Disease 2 07-10-2008 10:43 AM
death Brokenfriend Bipolar Disorder 133 05-10-2008 11:42 AM
Death JLMullins General Health Conditions & Rare Disorders 1 02-17-2008 10:22 AM
Firefighter's death raises concerns dies of ALS; Second death from ALS in city depart BobbyB ALS News & Research 0 06-14-2007 08:08 AM


All times are GMT -5. The time now is 10:54 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.