Truthfully: Has anyone else survived RSDS over 18 years?

Question

If you don't know about Reflex Sympathetic Dystrophy Syndrome which is a non-contagious disease of the Sympathetic nerve system. (Usually caused by a traumic injury) And if not properly diagnosed in the early stages - and you beat the 3 to 7yr average lifespan - I would like to hear from you. It is a HATEFUL - crippling - degenerating disease that leaves you in chronic to acute pain 24/7. There is not a cure for nerve pain - so the "after effects" are treated to try and keep you alive.

Answer 1

I am sorry to hear about your pain. RSDS (recently renamed to complex regional pain syndrome) is a terrible chronic pain condition. But someone has grossly misinformed you about the prognosis of this disease. IT IS NOT TERMINAL. I don't know who told you that you have only 3-7 years to live, but they are very very wrong. (I double checked with two friends of mine who are a rheumatologist and a neurologist- they agree.)

Now the pain may feel like you want to die. But there is treatment. If conventional treatment has failed you may want to find someone who specializes in it or enter a trial.

Also, people with chronic pain also often have to deal with associated depression. There is recent evidence to suggest an association with chronic pain and depression on a neuronal level. That is the changes in the brain from depression worsen the sensation of pain and visa versa. (This is not to say the pain is in your head. It most certainly is not. I just mean that anyone with chronic pain should be evaluated for depression also, because of this association.)

I have included a link from the NIH and from the RSDS association below. They may have links to new studies, support groups, and specialists.

http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

http://www.rsds.org/index2.html

Take hope.

Answer 2

I developed RSD in my right ankle after a surgery. After many months and lots of different treatments I was given a shot to kill the nerves surrounding the area. I am now pain free and have no other symptoms. This has been 4 years.