Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-20-2007, 10:52 AM #11
Sydney Sydney is offline
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Default Can't do much anymore - life is not the same

Before RSD - I could do almost anything I wanted I had some limitations because I already had FM. However, it was mostly in my face, upper body, Trigger Pt. inj. were a God send to put it into remission often. . However, since the epidural for mergalgia paresthetic I am extremely limited. Also, since the IV push in my rt. hand I am even worse.
I can no longer walk the dog, walk even a block. I just walk around the house. I can go to the store for 20-30 min. at times but often pay the price later. I can drive sometimes - but the FM is now in my knees and ankels and it is painful to drive at times.
I am pretty much housebound -thus I am on the computer a lot. Yet - I suffer for that as my hand, wrist and entire arm as well as my upper back hurt after being on the computer.
Life is not the same and I am very depressed. Used to be running everywhere, traveling abroad, etc. by myself. Now I have lost my independence and am in chronic pain all the time with no meds to help me..
By the way - I listed some ideas for meds I found on this site and others on the medications forum. Would you mind checking those out to see if anyone has used any of them and gotten any help.
Best wishes
Sydney
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Old 02-20-2007, 10:59 AM #12
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Default Hi all,

Thanks for the replies. I am amazed at how an illness can take away a persons personal life like the RSD does. I know other people have other medical problems but they still seem to be able to get out and go and do things that we can't seem to do. We have no sembelence of normal life at all.

I just wonder if any of us will ever get some of the normalcy back.

I'm wondering about the ones in remission. I know there are some on here. Have any of you got back to doing what should be normal everyday things.

Ada
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Old 02-20-2007, 01:18 PM #13
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Sometimes normality is realising and accepting that there are new boundaries that weren't there before the RSD and the pain.

I wouldn't say I'm jumping for joy about the amount of things I have lost.. but, I have learnt that thre are other ways to try and compensate for the RSD and pain. YES I still think this is all unfair, YES I absoloutly hate it. But being 21 I am likely to have years of pain and disability ahead of me, and I REFUSE to spend my whole life stuck in the house in bed.

Changing to try and accept that just because I WANT (desperately) to be normal it doesn't mean that I will become normal - in fact the frustration and stress usually end up making me worse... I am incredibly lucky to have a very supportive group of friends who have accepted me and who understand my limitiations.. It's bizzare, but through them understanding, it means that I can do so much more - as they are all there to help me if I need it.

I can no longer do the activities I loved doing, but new things have opened up. I now write articles, do small bits of media stuff and help to teach about disability. I am a full time student and am lucky to have brilliant mates - who don't mind hanging in my room with me in bed if I can't sit up for a while.

I am luckier than a lot of you. I have 24 hour care and support as well as brilliant friends and some cool technology. This means that more of my energy can go on studying and doing stuff instead of on concentrating on trying to get out of bed, dress myself or worry about cleaning the house or going shopping. Also, in some ways because my level of disability is very obvious it means I rarely have to deal with other people saying such useful things as "but it's ONLY pain etc".

That's just my thoughts on normality and RSD..

Love

Frxxxx
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