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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Re: RSD (now CRPS)
Jun 11, 2011
Oh gespence, I am so sorry, i know the pain of RSD in the face and eyes. I have had RSD for 2 years now which had started in my left foot, spread up my left leg to my hip, is in both arms and hands, in my back and buttocks from scs surgery, and last month in my eyes, I though I had pink eye, actually had a doc tell me it was pink eye. after two weeks of no improvement I went to an opthamologist who said no not pink eye but iritis, caused by the RSD spreading to my optic nerve. I think the eye pain is the worst pain I have suffered with this RSD not to mention not being able to see clear during flares, It is so aggrivating. I hope the shots will help in your knees. my doc wants to do more stellate ganglion nerve blocks for my eyes I hope they work,
Re: RSD (now CRPS)
Jun 11, 2011
Hi, I know what you mean about cutting a slit in your eye, the part of my eye that swells is my iris (the colored part) it causes scar tissue to form and my pupils get shaped like stars, its really creepy and the white part of my eye turns blood red. I begged my PM doc to cut my right eye out. My right eye is worse than my left. I just cant tolerate the pain in my eye when it flares. My PM doc of course said no that wont solve anything he said I will still have the pain and could make the RSD worse. I have had RSD for 2 years I was dx at about the 4 month mark. I did several sympathetic nerve blocks tons of physical therapy, but my RSD spread very quickly, I now have a spinal cord stimulator for my left foot and leg which has enabled me to walk with the use of a cane. I am very thankful for that, but the surgery to have it implanted caused spread to my incision sites, I use a ketamine compound cream for that which does help. I am still on alot of meds though. None of the pain meds even touch the pain in my eyes, the oxycodone HCL 30 mgs dont help with the pain but they do knock me out, but even when I am out I still feel the pain weird huh? what are you doing for the pain in your eyes? I have dental work that needs to be done but am so scared because most of my spreads have been caused from either surgeries or IVs. I dont know if I could deal with this in my mouth.
Re: RSD (now CRPS)
Jun 12, 2011
I can't relate to the rsd in the eys, but I do have burning in my face, mouth, and my eyes have been burning for weeks now.... but PM dr. hasn't said much about it yet. It had been only going on a few days when I saw him last, about 2 and a half weeks ago.

I can relate, however to bad joints. I am getting an ankle replacement this Nov or Dec. IF I can get the rsd to calm down a bit. It has gone haywire. I know how hard it is to try to use the limbs but when the joints are causing so much pain it doesn't help to get over the rsd pain and use the limb when even without the rsd pain you couldn't use the limb anyway. I get to tell my PM dr. on Monday about the joint replacement. I know he isn't on board, but he hasn't been living this nightmare for 5 years since my accident. My ankle surgeon has seen my life take a downward spiral from the ankle pain and he is willing to do an ankle replacement on me and talk to my PM dr. and do the epidural before and after surgery to help prevent the spread. He also wants me to get the scs in before the surgery as well. We've talked about me getting it before vs. after and he said before woudl be better. He said it will help the pain but also help with rehab pain (my pt mentioned that first, actually)

I am scared out of my mind about getting a joint replacement on my rsd limb where it all started, but I will not be able to walk soon if I don't. If I don't walk, the rsd will get worse, the pain will get worse. So I figure I'm dam*ed if I do and dam*ed if I don't. You know? I'm going to take my chances that the ankle joint will be good enough to walk with less pain and then that will help me with the rsd pain. Because I think the secret to rsd really is to keep it moving.

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