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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

I wish I had words for you.. I remember going through exactly what you are.. The frustration is horrible.. RSD is so different for everyone.. The goals of PT are to restore function of the limb, alleveiate pain, strenghten muscles and reduce sweling and joint stiffness. When I first started with PT I didn't have all of this.. Yes I had swelling not a whole lot.. It would come and go so fast.. The burning was there but not all the time.. I did have discoloration.. My muscles were fine. I could move all my limbs. See this is what confuses me with PT.. I guess there are alot of pts out there who swelling is so bad that they can't move their foot etc.. ROM is important.. but from what Iam reading about you.. You still see like you have this right now.. (which is great).. I didn't have hot spots all the time.. only when I have flare ups.. This is what would confuse my physcial therapyist.. I would walk in just telling her my symtoms.. He didn't see any of them.. Well now 6 yrs later.. They are all visable.. Not always though.. I think this is where people say nothing is wrong with me.. Just because they don't visible see them.. Iam more careful about what I do.. I know what flares me up and not.. I know when to stop.. I know when to apply heat.. It sounds to me that all you can really do right now keep the ROM up, stretchinging is so good.. and monitor yourself.. I found no relief at all from PT. I came home with more pain.. AFter seeing the RSD specialist.. He told me to stop.. If its making the situation worse then stop.. Since then I have.. What a differance.. My suggestion is to be guarded.. You know your body.. I would ask how much knowledge your PT has with RSD.. Apparently she doesn't know much.. if she suggests that RSD does not spread.. I've learned from my dr that their are different patterns of spreading.. I have what they call the mirror image spreading, which means all signs and symtoms appear in the same area on the opposite limb. This occurs in about 15% of pts. The common spread is called independent spread. the signs and symptoms appear at distant sites not adjacent to the initial site of the injury.. This occurs in up to 70% of pts.. Then you have the contiguous spread. This occurs in almost all pts and involves the gradual enlargement of the affected area.. Maybe you should bring this information to her.. LOL LOL..
What else does she feel you may have if its not RSD.. Sure sounds like it to me..
Blood work is not a bad idea.. There are alot of conditions that can mimic the signs and symtoms of RSD and need to be ruled out.. If you haven't had that yet.. I would suggest it.. Thats seems to be the only smart thing your PT has suggested to you.. lol lol
Iam sorry if Iam being to up front. I hate to see you go through this.. I find it amazing being on this board and hearing everyone go through the same steps of treatment in order to get better.. What it comes down to is.. They just don't know.. Its all trial and error for each and everyone of us.. There is not quick fix.. I have come to learn that real fast..
Are you having anymore luck with the Neurontin? How's you sleeping patterns going lately? I just feel so bad.. Just knowing what your going through.. It will be ok.. I promise.. Mentally its very hard for you right now.. It takes time to learn and accept it all.. Its so much to take in, in such a short time. All of it is so over welming.. and scary.. Just rememeber.. Not everyone is the same.. thats a positive things to look at. Don't give up on PT yet.. I think you have a great idea regarding giving her some information on RSD.. Iam curious though.. Ask her how many pts she has worked with who have RSD.. When I asked mine.. I was the second one.. That was comforting.. LOL..
Good luck, keep in touch.. My motto... Take one day at a time....

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