Quote:
Originally Posted by ali12
Hi everyone,
I just wondered whether anyone here has actually had PT and it has made them worse instead of better?
I used to go to weekly PT and I didn't see any changes whatsoever, if anything, it was usually making my symptoms worse instead of better because it wound my leg up and made it more "angry". I have been onto 2, 3 week PT courses at Great Ormond Street Hospital in London and the first one made me somewhat better (I was able to walk without a wheelchair) but the second one didn't help at all and made my pain and the Dystonia worse.
As some of you know, my grandad passed away 5 weeks ago and due to that, I just haven't felt like doing any PT so have had to cancel all of the sessions that I had booked. For the first few weeks after my grandad passed away, I felt terrible because the stress had wound my pain up but I am now noticing that I am able to walk more and my pain doesn't seem quite as high as it usually does (it's a 6 and a half on the pain scale instead of the usual 8 and a half).
I'm not sure if the PT has been making me worse but the thought has crossed both mine and my mums minds and we are a bit confused as to what to do. I don't see my PT's until the end of January now so will mention it to them when I see them next. My PTs are forever telling me that PT can "cure" RSD and that if I don't do it, I will get so much worse but i'm just not sure if that is true in my case because I know everyone reacts differently. I am supposed to go to London in January for my leg casting but don't want to go there and the thought of the cast really scares me ... has anyone had any experience in casting an RSD limb? I had my leg casted in the early stages of my RSD and it made the spasms and dystonia so much worse so I don't want to go down that route unless I absolutely have to.
I was just wondering if anyone else feels that PT has made them worse and if anyone had any advice on what we should do now. The PT's made me better in some senses but worse in others so I just don't know what to do and am so confused.
Sorry if i'm rambling, I should be in bed!
Thanks in advance!
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I too went through PT the first six or eight weeks at least and there was no benefit noticible. In fact, they iced it several times till I told them that the literature says NO ICE...also other things made me realize this dude was clueless , as were the next two. I move the foot a lot and try to use it as much as possible myself. Since it is a foot that has the CRPS, there isn't a whole lot to DO..except use it. I have had many surgeries on the foot and the last one resulted in nerve damage on the top of the foot and it has spread to both sides of the foot now. I have done all the usual stuff and taken many drugs and gone through many with drawals ...on the tail end of one now from the Avinza ....time release morphine. Made the foot feel great but made me very sleepy and would drop off in an instant..so just QUIT and am having a LONG recovery from that. Back on the endocet/oxycodone again... harder to manage, but no sleepiness. I want to get the ketimine low dose one week treatment if I can find anyone that is currently doing it. Dr, Harbut is not operating his clinic in Arkansas right now.
I think that is the future of good results with CRPS...or RSD which is really not used by the newer sites and docs.
good luck, Sherrie