I hate PT I generally get worse from it from being pushed. Drs stopped it about a year ago cos I just couldn't handle any more.

Now me + carer have a list of stretches I have to do everyday to try and keep the joints that aren't "locked" moving and to try and stop my joints from fusing. Basically passive movements. Also have to do desense and I try to go swimming a couple of times a week. I hate PT's that say - I've seen x number of RSD patients and they've all got better because of me... it's like - I wish it was that easy..

for one year after I was diagnosed I gave up everything to concentrate on the RSD and physio and to try and get back to walking - even if it was with a frame or something... but it just made me so much worse.. grrr! so agreed an "exercise/ physio" thing with my consultant who agreed that PT really wasn't the answer for me.

So go with what your body tells you, but also listen to your mind. I know if I don't move I get worse, but if I move too much I get worse.. so I have tried to make a plan that meets that "in the middle" bit.. (more than min on bad days and less than max on good days) etc

good luck

rosie xxxx

sometimes with physio you have to go with your body...

Hey Allen,

I had a feeling you weren't ok. Damn shame I was right. Yeah, PT, all right up to a point and then NO MORE. Lie in bed and eat chocolates for a few days instead, that is my prescription for you for now...
Love, feel better soon,
all the best

It's for the poor folks who dont have an income, which I still dont have. Most doctors wont accept it. That said, I found this doctor in 2001 and have been seeing her since.

Now her employees look down their noses at people on this type of insurance, and if you can remember all the crap they put me through with meds. Well this last visit really got to me. After I signed in and sat down they called me up to the desk to ask if I really had an appointment. Then asked if I had the little appointment card, which I never needed before ever. Well I didnt so they said that they would have to work me in because I wasnt in their schedule. I said ok, but I didnt know it was going to take 2 and half hours to work me in.

Once I was seeing the doc I asked about the wait, and she quickly said I wasnt even going to be a patient after 11/7. Then it hit me that they did that on purpose knowing I wouldnt have the little appointment card. She did take xrays of the shoulders and told me she would call later that day with the results................no call lol.

I thought it was bad to have my hip and leg hurtin all the time, and having to ride in a chair, the osteo and all that. But wow I hope this shoulders and arms thing gets under control soon! The pt guy had me do this certain exercise that really hurt, and I have never recovered. I only did it the one day too. The dude got mad at me for not cooperating the rest of the visits on that certain exercise.

Well im done for again but I wanted to get this all out of my system before I stopped.
Love ya all
Allen

I couldn't do PT either. I spent 4+ years in PT but never did any. They did massages on me. I had some good therapist. My first 2 were very good, they didn't even try to make me do it. After they left the 3rd one made me try PE and I couldn't do it. I went looking for another PT'er and I found a husband and wife that had studied in Holland and were taught massage therapy was better for people then exercises. It loosens up the muscles and gets the trigger point knots down.

I did start walking though. I have walked for about 5 years. I would walk and cry everyday until the Physical Therapist got me loosened up and doing better. It took all of those years to do it.

I started with the RSD in the right shoulder and an Osteopathic Dr. messed up both of my arms popping my bones. Now I have it pretty much all over but I have got it in check with meds, blocks, and triggerpoint injections.

I don't know if I believe that the PT does an RSDer any good. It sure didn't do anything for me. I've been blessed for the past few years with the Drs. and Physical Therapist I have found but it took me a lot of years to get to where I am.

Nowadays Drs. can do anything they want to do. I have several friends that got letters from their PCPs saying they had too much wrong with them and they couldn't help them. I had a pain management Dr. at the University of Colorado that said he couldn't do anything for me so I do know they are out there and apparently they can get buy with it.

I am on state insurance also because of how I was done by SS so I do know what you are talking about. There are so many Drs. out there anymore that won't even accept it. But just keep looking, don't give up because I do know there are some good Drs. out there that will take your insurance. I have a Dr. that took care of me for 5 years with no pay at all. I put him in the Saint catagory but there's not a lot of them out there either.

Also the Drs. now are harder to sue because of the laws nowadays so they get by with even more.

Good luck on finding the help you need and remember, don't give up.

Ada

Allen,
Oh Sweetie...I feel for you! I remember so well what it was like to go to PT that didn't know what the crap they were doing when it came to RSD patients, and how much more pain I would wind up in because of them. I was lucky, though, as they only managed to help my RSD spread up my leg, and not up into my upper body (that I did all by myself..). Seems amazing to me now, when I think back on it, and remember the tortures that they put me through, and how they topped each session off with ICE! Or tried to; I am a pretty good escape artist when I have to be, even from that thing they call a "Kyroboot"or something like that. YUCK!

I am sorrier still to hear that you have a beeyatch for a doc who is dropping you like a hot potato. Is it because she has stopped accepting the type of insurance that you have? You might make certain of that, by calling your State agency to find out. They can also tell you any other doc in your area that takes their insurance. They might also be able to help you out if you find that all of the docs in your area that do take that insurance "aren't taking new patients".

Have you gotten you SSD yet? Getting Medicare will help....even though there are docs out there that don't take that insurance, there are more that do than that take the state kind. If I am remembering rightly (and sorry...my brain is kinda mushy these days...Teenagers, you know? LOL) you are still stuck in the process of getting SSD? Is that right? If so...where are you? Been denied? Once, Twice, three times? Going before the Fed Judge yet? I won mine before the Judge. Just hold on...hard as it is, and as much as it sux and is not fair that they make us jump through so many hoops for so very long, just hold on. And, make SURE that you keep records of the problems that you are having now getting care, too. Try to get it in your SSD stuff, and FOR SURE make sure that the Judge hears about it if/when you get before him. The reason is, because it affects your care, and is detrimental to your health.

I really, really hope that things start going better for you. You are such a good guy....you so deserve a break. People like that lady doc of yours will have to answer for these things that they do...this I know. You just keep on keeping on, and let us try to help keep your spirits up as much as we can. Come and vent whenever you need to, and don't you EVER worry about doing it! I know how the doc hunting can get a person down, and how badly it feels to get dumped by a doc. Been there and done that too. LOL. Shoot, after all of these years, there isn't a whole lot that I haven't done (or at least heard about...LOL) with this RSD crap. Just try not to let it get you down.

Do you have enough meds to get you through? Call her office BEFORE the 17 if you don't, and try to get her to write you a script or at least refills....post dated if it makes her feel better....to help you, and to try to have at least one less to worry about, and to buy that much more time to find another doc. Erm...I know that there is other stuff to do...but I can't think right now. Get refills on meds...get copies of medical records...seems like there is something else to do before leaving a doc? If I think of it, I will get back.

I hope that you have a good day today...

((hugs))
Jose