hmm i guess i am a little confused...i have had rsd/crps whatever the fad phrase this year is for almost 20 years and i think the only thing that has kept me from losing all function in my extremities is pt. there are patients who have advanced dystonia that has resulted in long term "locked" joints who are beyond the capabililities of the pt, but if you arent at that point yet i cant imagine why a doctor would say to avoid it. i am the first to say it is an uncomfortable process, but if you arent "locked" and you are trying to avoid that outcome you need joint manipulation. if you dont stimulate your muscles then atrophy is inevitable. as for the ins thing about a limit to visits, i had that issue with my old ins company and my doctor eliminated the issue by altering my dx as my symptoms changed (i.e. my initial complaint was an injury, then there was post surgery rehab, then dystonia in my r arm, r leg, then there was a dx that was post rabdomyalisis).
i am not trying to be a pita for those with this dx, especially those who have a fresh dx, my point is simply that at any point over the last close to 20 years i have been dealing with this i think that the one mainstay that has helped to keep me alive and able to use my hands and legs is motion and the function it permits. obviously there are people who dont have that option, those who for some awful reason progress despite pt or at a rate that exceed the capabilities of pt, but for those who are able to really need all of the help they can get.
when i first experienced the symptoms i thought that pt was exaserbating the problem and both my ortho doc and my pt (he was a good friend, i saw him for the first time when i was 9 and my knee subluxed and never seemed to go for very long without his expertise) had to sit me down and tell me that they understood that it hurt to do anything physical but the only chance i had to continue to function was to continue with pt. at least nowadays you can usually find a pt who has some experience with rsd/crps patients, when i started my pt read everything he could get his hands on but the reality was he was learning by trial and error with me.
for the recently diagnosed with lower extremity problems i have a question, can you find a pt who has some experience with a mirror box. it sounds random but there has been a lot of research and if you can trick your brain into thinking it is using a functional limb instead of the one that is displaying the symptoms. if you start using the box early the messages being sent to the brain can be rerouted, and the best part if you have touch sensitive problems the box doesnt cause a flare.
just a thought please dont feel like i am trying to offend anyone i just think that if there is anything that might help it is worth trying...if it isnt a possibility then at least you wont look back years later and say i wish someone had told me this is what i should have done and have regret.