RSD/CRPS doctor and physical therapist

[jmking]

Here is a very good site for those who have RSD/CRPS who want contact with many others with the same condition. Very very good advice from those who had good success in dealing with this monster.
Reflex Sympathetic Dystrophy (RSD and CRPS) - NeuroTalk Communities

[Khrissie31]

Dear Martha,

RSD/CRPS is very serious!!!! I dont understand why doctors dont know what to do , I'm so tried of being a lab rat. I had RSD/CRPS since the summer of 2007 from a heel spur surgrey, after meeting a Pain Dr there was 10 injections later with one SCS implant and lots of different drugs. I feel that the drs dont believe me when my pain is traveling from one day to the next... I'm still looking for a Dr that understands the pain and WANTS TO FIND A CURE.... anybody have any ideas? khrissie

[Kayjayangel]

I know what you mean I get the same answers from all doctors, PT or them wanting me on all sorts of meds. I have known that I've had RSD since 2000 when I was 10 years old. My pain mirrors itself, so when I hurt on side of my body I feel it on the opposite side as well, and it is through out my entire body. I have recovered my left hand and wrist which was crippled for a little over a year thanks very aggressive PT. however now my left foot is slowly turning in on me. I haven't yet been able to find a Dr who knows more than I do about this, and who doesn't want to just put me on 15 different types of meds that I was doing until it put me in the hospital for destroying the lining of my belly. So I have now managed this stupid pain and no sleep with no meds for 4 years now.

[Usaf8589]

I have had RSD/CRPS for nearly 20 years. I ruptured a disc in my low back that took doctors over 6 months to find - saying the pain was all in my head. Finally had surgery, but the symptoms never went away and I returned to Pennsylvania - just north of Pittsburgh - and a chiropractor diagnosed the RSD and an Ortho confirmed it. I have been on meds, patches, raw food diet, and had epidurals but they only masked the pain. I went from walking to using forearm crutches then to using a wheelchair - that was until about 2 years ago when the pain clinic [mod]need at least 10 other posts to make specific recommendations[/mod], explained the medical advances in sympthetic nerve blocks. About a year before that, I was told the nerve blocks would not help so I all but resigned myself to living in a wheelchair. I originally went for carpal tunnel symptoms and the doctors asked what hurt more: my back and legs or hands. I told them, obviously my back and legs so we decided to try the nerve block. Within a WEEK I was moving on my own - no crutches or wheelchair. Each nerve block lasted longer and longer; now I am getting 3 months and I feel like a new man! I still have RSD but I am not on the narcotics, which masked the pain and made me groggy, and I am enjoying life again. The RSD has shown up in milder levels in my arms and right foot, but compared to the "firey hell" I was enduring before the sympathetic nerve block injects, it is manageable with low doses of gabapentin.

[CRPS2009]

I have been suffering since 2009 but wasn't Diagnosed until approximately
a year later. I was in the prime of my life, working as a RN & making a wonderful living as well as enjoying each moment of my life until I was injured. I saw MD after MD, each time thinking "finally I'm going to get help";
to my disbelief, no one was empathetic, was knowledgeable, nor LISTENED. As the pain continues to progressively get worse, my activity decreased the moment I was injured, I lost everything. This included friends, my apartment, my lifestyle etc., many of you have probably experienced the same thing. To make a long story short, I finally believe that I have found someone that can help me. Each condition and experience is different, however, if you check Google and look for the RSDS Foundation, they will help. They are so nice, and they have resources to the Names of competent Doctors in every State. Good Luck to all of you!