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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi, :wave:
I have been around since March, but have read more than posted. But I need some place to vent my frustrations.
I developed RSD (postop) at the end of October 07, Received no diagnosis or treatment until end of February 08, because my dr. didn't believe me (implied it was imagined pain). What I found out later he had no clue what I was experiencing (intense burning, aching pain, huge swelling, purple/black coloring, temp. in foot & ankle averaging 68, and all of the other symptoms with RSD) was actually RSD and NOT in my head!
It took my PCP calling him to get him to understand that. So he gave me Lyrica 75mg. a day & told me he didn't believe it was necessary.
To make a very long story short (skipping many horrific details and even worse new symptoms).
I now go to different dr. (research facility) who is great. He's been very honest with me and told me that my RSD has progressed rapidly and that I am now in mid to late stage 3. This is not what I wanted to hear. Then he gave me the best case scenario and the worst case scenario for someone with this late of RSD. By the way my RSD started in my left foot and ankle, progressing to midway to my knee, I haven't walked since last August, at first because of surgery, now primarily because there is no healing(new bone growth) in my foot or ankle, and of course the RSD. Bone situation can't be worked on now, if ever because of the RSD.
So not only do I now have very active RSD, I have no bone growth to repair where dead bone had been removed. This leaves me unable to walk, drive, or even socialize much, I can't use crutches or a walker because of shoulder joints being degenerated so I use a knee cart to ambulate, but with RSD moving up leg this is becoming a challenge. The problem is I can't get my family to understand that I have real pain and discomfort with this RSD, and that the pain isn't mental. That the hypersensitivity, temp. & color changes & everything else is RSD, not something that I have thought of to make my body do this.
I know you all have your own struggles, but you all seem to be so supportive of one another that I would ask for some advice with dealing with a family that doesn't get it!!
To complicate my situation my Lupus is becoming very active and I can't take the strong medications to slow it down while I am going thru treatments for RSD. I can't win for losin'.
Let me say thank you, you've helped me with your postings, I consider this my little corner of the world. :angel: I've tried to get family to read, but there too busy and just say why bother, you don't have RSD.

Any suggestions would be greatly appreciated.
Thanks,
Alyson:(





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