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

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 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.

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

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

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)