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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I'm not sure what to say about the numbness. With my own body I get numbness in my legs a lot. I'm on Lyrica and it helps. I did a 2 month trial last year with it and have just gone back on it. I know the dose needs to be upped. Kind of baffling that it does it to your whole body. That is something that needs to be told to your doc so they can maybe figure out what's causing it.

I had 2 bone scans in the 1st yr with RSD. It's been 5 years for me now. Both of mine were normal showing no RSD. The first one showed a healing fracture in my knee that we didn't know about. I had been diagnosed with a bruised knee, not a broken one! lol

It's a 50/50 thing whether it shows RSD or not. It's yet again another thing that is very individual. The bone scan picks up changes to the bone caused by RSD. The lack of blood flow is what causes us to develop osteoporosis from RSD. With some the bone changes happen fast. With me, very slowly. I can't afford to get another scan done but I have a feeling if I did that it would still be normal. Even if it shows nothing, it doesn't mean a thing.

Hugs,

Karen
Hi Tracy,
Its a tough thing to have to accept that this is all happening to you... I fully understand that.. I think all of us go through that stage..
As for disability, You will know when the time is right.. I worked for two yrs with RSD.. I finally just could not do it anymore.. I dont know what type of work you do.. The DR may feel it might to more harm then good.. Follow your heart with that one.. RSD takes a toll financially.. Its like a vicious circle.. Your trying to take care of your heath at the same time your trying to take care of your family.. Iam not sure if the rules of disability are the same in every state.. In PA you have to be out of work for 12 months or longer before you can even apply.. I have never had to deal with that.. I cannot file for disability do to the fact that I don't have enough working credits in.. Anyway.. These are things you need to look into before you even leave your place of employment...

Your are not going crazy when it comes to the numbing.. I have it all over my body.. Expecially late afternoon, towards the evening when I mostly rest.. and in the morning when I wake up... Just like you, once I move around it seems to go away.. I wish I had the answers why it does that... THe one things that does help with that feeling for me is.. Warm compresses.. I live with them.. I take neurontin, its something like lyica.. it helps alot.. It took several months for it to start working.. I am not sure how lyrica works so that something to ask the dr about..
I am not sure how long you had RSD.. In the early stages its so hard to accept and go through all the changes in your life.. Iam sure its all stressing you out.. and we all know stress is not good for RSD..
I wish I had better words for you. but I don't... I think once you can accept what you have.. It help out mentally. DO you have alot of support at home? I can't tell you how many times I said to my family " you don't understand". It got to the point where they were getting mad at me... Yes they do have empathy for me.. but they will never know the pain that I have.. coming on here has helped me so much. I don't complain to them as much.. I guess you can say its an outlet.. Through the last 7 yrs my mental state has changed so much.. for the better.. I know one day you will be there.. We are all here for you....Any questions, ask away.
Michelle





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