Neurological disease RSD (CRPS)

[callylily]

I have RSD (CRPS) i need any help many of my docs have not had a pt with it. How to plan my care which i do alone? Alternative treatments avail? Treating doctors? Any direction for support? After 3 years I have not went into remission. PLEASE HELP IN ANY WAY PLEASE? Thank you!

[kelkiss]

I was diagnosed about 6 years ago with RSD, from a soccer incident. That misdiagnosed me with a hairline fracture at first and i attended chicagos childrens memorial hospital, it was interesting to have 6 different doctors in a room, i believe new york has something like this there. I had an artifical sympathetic nerve block placed my rsd is mainly in my lower right leg. It seems to have worked to postpone the symptoms. I was told it was only suppose to last 3-4yrs but it is now just wearing off. I get a lot of doctors that think im making thigs up just dont let ignorant doctora bring you down. Self treatment i found to work is desensitization. Depending how far the rsd has progressed this could be very difficult and painful. Basically i found a wide variety of textures and would basically rub it along the skin in dofferent pressures, also i would go to physical therapy to use their emulssion tub and would vary freezing water qith super hot water, however still today i cannot tolerate anything colder than lukewarm. If you go onto the website rsds.org this is where i have gotten a lot of my information to help me cope and the people on the forums are very very helpful.... goodluck with everything and im sorry your not getting the help you need

[delores79036]

I truly understand how you feel.   My husband has had RSD for 10 years now.  It is a very difficult disease to understand and deal with.  My husband sees a wonderful Neurologist.  I wish I could say you will eventually go into remission but every patient with this disease reacts different.   My children call it   "Really Stupid Disease".  If you need to just chat about it feel free to contact me.   Have faith and live one day at a time.  It will be ok. Be careful with trying to do things on your own without talking to a doctor first.

[Dr Santos]

Hi,
How are you? Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy, is a chronic neurological syndrome. This is characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch. Check your local community if there is a support group for this condition.  There are also on-line support groups that may be helpful. This wonderful site may help: http://www.rsds.org/4/stories/index.html
Take care and do keep us posted.

[selmaS]

Dr. Richard Holub
Neurology, Neurological Research
760 Madison Avenue
Albany, NY
TEL [phone]