while the results in pt are different for every patient that distinction seems to be magnified when dealing with crps/rsd.
i think the biggest deciding factor regarding a positive vs. a negative experience is the knowledge of the therapist. i have been in pt for a total of about 14 years so i have had a lot of experience with both the good and the bad. while it is great to find a pt who has handled a lot of crps/rsd patients the best pt i ever had was one who when he first encountered me had never heard of rsd but he was willing to learn. the first thing we did was lay down some ground rules, i was willing to try anything but if it really hurt we stopped. we worked together for the better part of two years and because i was basically the pateint he learned from he did his homework. he got online and looked up everything he could find, he called every doctor he read good things about and asked for advice, and most importantly he made sure that myself, my doctor, and him talked about what was working and what wasnt regularly. he kept a journal in which he wrote down everything he read about, everything we tried, and how everything effected me. he wasnt the most knowledgable pt when it came to rsd/crps when started but by the time he moved two years later he had more hands on experience than most specialists. in addition to learning himself he made it a point to hold clinics for all of the pts in the clinic so everyone of them (pt students included) knew everything he did about what works and what doesnt. to this day he may be 2,000 miles away but we remain in email contact. when he attends a confrence on the subject he always asks me questions about the treatments he has learned about. when he has a rsd/crps patient who is struggling he emails me with questions, and i try to give him suggestions based on things that have helped me.
pts go to school for years to learn about anatomy and injury related rehab, however very few pt programs require students to spend time focussing on pain patients. for the same reason a gp doesnt have the knowledge to treat a chronic pain patient as well as a pm or a neuro, the pt struggles. until all programs require students to focus time and knowledge on chronic pain we as patients will continue to have to search for pts will first hand knowledge. if you can get into a pt group that is affiliated with a pain clinic that is probably your best bet, for those who cant do that (myself included) the only option is to go to the pt office our doctor sends us (a pm or a neuro will probably have better recommedations). if you are uncomfortable with the pt with whom you have been assigned write down your concerns and discuss them with your doc. maybe a alteration to the pt program can solve the problem, if it doesn't than your doctor should be able to help you to find a more compatable pt.
if a pt is beating you up in a session to the point that your pain is off the charts for days or weeks following the visit something is seriously wrong. the only way rsd/crps paitent is going to improve is to find a comfortable balance between the amount of pain they experience during the session and the amount of time it takes to recuperate. the reality is that without motion our bodies shut down. for those of us who have experience dystonia we would be willing to suffer a great deal if it meant that we would be able to function when the pain subsided. the reality is the longer your body either fails to function or funtions in an abnormal way, the harder it is to return to some sembalance of normal. my dystonic foot existed for 2.5 years, i had my scs in march and that allowed my body to correct itself but only so far. now i have to wear a brace in my shoe and one while i sleep and while there is obvious improvement the reality is the road back is extremly long.
some pain is good but both you and your pt need to be comfortable with when it is ok to say enough. if a pt wants to go from taking your history to massaging or active stretching i would proabably say thank you very much but i dont think this is going to work and walk out. a slow introduction to range of motion or passive streching is a good place to start. while the excersises may not seem particularly challenging it is a good way for your pt to get an idea of where you are at physically. once that baseline is in place they can add a little challenge into the session slowly. a good pt will add some more challenging excersices in a session and then the next time they see you take a few minutes to see how you did following the session. if you were miserable for days or continue to be miserable days later than the routine needs to be reevaluated, if however you were feeling beaten up when you left and over the next day or two things improved and you return in the same condition you were in for your previous visit then things are probably going along ok.
the hypersensitivity treatments are the most difficult, because anytime anything touches the effected area the patient is immediatly in high levels of pain, however the desensitation is necessary. a good pt will start out rubbing a pillowcase over the area for a predetermined amount of time. if you both agree before you start that the pillowcase will be applied ten seconds on ten seconds off for 2 minutes you will know that you can count through the ten seconds it is applied and you know that the pillowcase will be applied 6 times so you cant each one. that way you can feel in control of the process. you can do the 2 min drill as many times per session you can tolerate (again it should be an established number) so you are very aware of what you will have to go through and how much you have left.
once you are desensitized to the pillowcase if you have an upper extremity presentation you may want to ask your pt if they have the heated corn air mix circulation machine (not sure of the name...maybe some one else knows it). you put your arm in the box and warm (not hot) corn meal circulates around the area. almost every upper extremity rsd/crps patient i have talked to who has tried the box says that it is wonderful.
if a pt tries to put an ice pack on an rsd/crps effected area they obviously dont know much about the disease.
a pt who treats rsd/crps patients needs to know that they arefor all intesive purposes placing their trust in their hands. if that patient feels like that trust is broken as a result of negligence on the pts part (making a patient hurt for days or weeks after is unacceptable) then the patient will assume the pt doesnt know what they are doing and are going to continue to hurt them. this relationship will never work. a patient has to trust that the pt has their best interest at heart and they would do nothing that would intentionally hurt the patient (being sore for a day or 2 is ok). without trust the pt experience will be a failure.
you need to find a pt who pushes you but not so far beyond your limits that you are effected for days.
i hope this helps
i have seen the good and the bad...the good may start out bad but quickly correct the problem, the bad continue to display behaviors that make the patient feel uncomfortable and as a result the entire intention of the patients visit to pt is a failure.
the only way to have a positive pt experience is to be your own best advocate. if something isnt working tell them why, and what could be changed to fix the problem. if the problem isnt resolved following input then the best thing the patient can do is move on to another pt and try again. if a problem with insurance arises as a result go back to the doctor who wrote you the script and ask them to alter your script (tell them what you experienced and what you thought would have helped) and ask for a new script. that way the insurance company will understand why you are switching to a different pt and not fight the additional charges.
hope this helps