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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Unfortunately, RSD is not something there is one definite test for. It's kind of an end of the line diagnosis. Nerves are known for taking an extremely long time to heal. I ended up having the two nerves they said were affected cut and buried into muscle hoping for relief. It didn't work for me. My PM doc is the most versed on RSD, but it was actually a PT that called it as soon as my symptoms started returning post-op.

Best of luck.

Jean
Shell,
Early treatment for RSD is very important. I had a podiatrist do surgery (yes, I know now that I should've had it done by orthopedic surgeon, but the podiatrist was referred and back then I had an HMO) and ended up hurting like **** instead of getting better so I drove up to UCLA (I'm in San Diego county) and he wanted to rule out RSD so got a 3-phase bone scan and from that, along with me having severe pain they decided it was RSD. My RSD specialist is a rheumatologist, and I was also sent to a neurologist for an EMG in my feet/legs but now I see my RSD doc every 3 months or so. I get my meds from him and he occasionally draws my blood. I saw a pm guy once and to be truthful, I think he was a nut -- He gave me some good info and stuff, but he was pretty weird so I'm not going back. I'm in San Diego and there's plenty of very good medical people so if the day ever comes where I need a pm, I'll see a different one, that's for sure. RSD is really very different from person to person. Some get the textbook symptoms, others don't. I don't have any of the colorations described for RSD. I have some swelling, huge amounts of scar tissue because the incision is right on the section of foot that is weightbearing and they're unable to remove the scar tissue because of the RSD -- I've pretty much learned to live with it but sometimes it bugs me cuz it's like a rock inside of my foot where the scar tissue is. It can also be extremely painful.
I hope you are able to get some treatment right away cuz that's important. Keep us posted,:wave:
Wow, its just like picking out of a hat to find the right doctor it seems,lol. We really dont have any clue if it is or not. The PT doctor also said RSD sounds very reasonible as well at this point, they are the ones that have pushed me to look past the fusion surgery itself. I went thru the list of symptoms here and I have a huge portion of them, actually for the last 22 years, starting after my first knee surgery when I was 13. OK, now you can figure out how old I am,lol. But I know things overlap with other issues so I wont jump to any conclusions. Just need to wait and see what the next guy has to say.

Thanks all,
Shell
My PM doctor is not happy that I have gotten opinions form other doctors. Even though I was released from him to the care of the orthopedic surgeon 8 months ago. I gave him dates names and opinions, I have not received prescriptions from any of them but the OS, just ideas. I told him I am just a wits end with the combinations of symptoms I am having and looking for someone to make sense of things.

He will not write a script for pain meds, since I have been off long actings since September, and he says I am manageing. Managing at what expense, the expense of my job, my home and my family, how is that fair. At least before I could handle all of these things. Yeah, OK, I am an adult life isnt fair,lol. However he has switched my Lyrica to Trileptal to see if that helps more. I will see him in 3 weeks again. He said he thinks that my brain is getting "deranged" (his words not mine) with the pain signals coming from the damaged scar tissue area in my spine and sending them elsewhere in error, but he is unwilling to say more. So what does that mean?

I am scheduled for EMG's tomorrow, not sure I want to do it, so I guess I need to make up my mind quick. Just so frustrating.

Thanks all,
Shell





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