RSD/CRPS Supoort Thread

[MandyMaloo]

Hi everyone. I'm still relatively new around here, but I wanted to start a thread for anyone else who may be going through the same thing I am right now- and may be looking for a little support.

At the beginning of the year I was finally diagnosed with RSD after two years of dealing with it undiagnosed. I also have Petalel Femoral Syndrome (sp?) as well, which makes it that much worse. I'm currently on 1600 MG of Gabapentin a day and doing nerve blocks every 2 weeks or so. I'm also going through desensitization and physical therapy to help me walk again.

It's really a terrible, terrible thing to be going through. I'm only 25 years old and I can barely walk anymore. I have muscle loss associated with my RSD since it went undiagnosed for so long. It's hard to find a facet of my life that hasn't been almost completely effected by this diagnosis. I just feel so terrible that my poor hubby is charged with helping me do virtually everything. It's so unfair that he's 27 and a care taker .

How do you deal with it? How are you able to work out and keep in shape? I've gained almost 50 pounds in the past 2 years because I'm not able to work out! That sure doesn't help in the self-image department, either.

I've been struggling since it was brought up to me with finding a community of others who are going through the same thing. I'm loving all of the amazing people I've met here in disboards who've been brought together by a love of all things Disney- so I figured it couldn't hurt to see if anyone else was going through the same thing.

 

[peemagg]

I was diagnosed with RSD after a surgery to fuse some bones in my foot. They didn't realize there was an issue with it until after all the casts were off and I should have been better (4-5 months after surgery). I have undergone the nerve blocks several times (around 10) and need to call to get more tomorrow. I also went through all the PT and desensitization things too. Currently not having to go to any PT for a while, but spent 2 years of it.

Do they do hot/cold therapy with you? I was doing some reserach on the disease and found out that is almost the worst thing you can do. Check out RSDhope.org. There is a link in there for a very predominate doctor on the disease. He also concurs that the hot/cold treatment is the worst thing for it. I know it will send me threw the roof with pain undergoing something like that.

I am only 40 and I have been unable to work since May 2008, and can't hardly walk for any distance or time. Standing is also very hard on me. I use a mobility scooter to do things (like Disney and shopping) in order to get around. It sucks that my Mother age 65 can get around better than I can. I am supposed to be the one caring for her and it is the other way around. I do what I can do to keep active, but it is hard. I find that I can ride a bicycle without too much issue.

I was placed on Gabapentin (same dose as you, but it didn't work too well for me) and found that I gained some 30 lbs on it. I am fighting to get it down now, but as you say it is difficult when you can't hardly move without pain.

Keep fighting and don't stop moving, even if it is only 10 feet at a time! If we don't use it we will lose it, and I for one am not ready to be totally in a wheelchair yet, and hopefully not ever!

 

[lovetoscrap]

You have found a great place to talk with others.

I do want to point you to this site also: http://www.butyoudontlooksick.com/ Check out the "Spoon Theory" and their Message Boards. RSD is discussed in their Neurological Forum. Hopefully between here and there you can get the support you need.

 

[peemagg]

Grrrr! I went in to see my pain specialist for a nerve block yesterday and was informed that the RSD has moved to my right foot. That is not good! I have been having problems with it swelling in the last few weeks (especially when I am on my feet for a bit), and pain. I also have been noticing that it is also getting sensitive to touch. I don't know what else is going to be done. I guess one of my other doctors will have to figure out a way to keep this foot from getting as bad as the left. This disease really sucks!!!!