Greyhoundlover, I never did hear back from you about how things are going with the splint? Did you try with and without to see which you do better with? I don't want you to hurt yourself further. You know yourself better than anyone.

Let me know. I hope things are well for you.
TTL J

Hi there!
I was just wondering what it was that lead you to believe that a TENS unit could cause damage or exacerbate the RSD? I hadn't heard of any research that implicated it in the spread of RSD, and it really can be pretty effective. (I know this personally too!) A TENS really is just an external spinal cord stimulator- it works exactly the same way. If you wanted to discuss this, just send me a message- I'm actually a neuroscientist too. So I can help translate some of the literature, cause sometimes it's dense. And I was diagnosed with RSD when I was 11. Best of both worlds!
Linnie

Hi Linnie,

I missed your initial post here and didn't welcome you (posts can move pretty quickly here).

You might want to reconsider your offer to translate research articles and links posted here, there are a lot of them and you might find it a full-time job.

Anyway, welcome. I wish the circumstances that drew us here weren't as they are, but we can't change that...yet. You have found a great place with really good people; they have certainly sustained me through many rough spots...Vic

Hi Vicc!

Thanks for the welcome. I actually joined about a month ago, but then was a bad person and abandoned all of this for a while. (Pneumonia, school and a death in the family . . . bleh!)

But now I am going to try to be a fully participating member! At least, that is the goal! I've had RSD for over 14 years, and I just turned 25 (I was a competitive gymnast.) So I have seen the ups and downs of all this for a while, and I'm a bit wiser than most people my age. I've had a SCS for 6 years, and it has really been a live saver. That and MBSR- mindfulness based stress relief. It really really helped me with my depression, and dealing with the pain. I honestly think that MSBR is the single best thing I have ever done for myself. Well, and having dilautid for break through pain! (I don't know about you guys, but it took me a very long time to give into the narcotics- I was very against them for so long. So stupid! The stigma must be removed.)

But I am a brain dork, although I have decided not to go into pain management- a little too close to home. But I still love my neuro, and because I am a tutor, I think that I'm pretty good at explaining things to the lay person. But not every day! You're right on that one!

Linnie

Heh Linnie, Thanks for your offer and input!

Sorry, I didn't mean to say that the TENS unit was bad. I mean the hot/cold contrast bath. Cold is not a friend of mine and I refused a contrast bath because cold doesn't respond well with me and the pain of it lasts for a lot longer than she thinks it should or will. I did end up telling her that I would try it as a LAST resort.

Just something I noticed about people who have had the contrast baths, got their RSD into remission and then the RSD came back later, for whatever reason, to the same area. It appears that the contrast baths are a one time deal. They work the first round but not the second. Have you found that in your experience or noticed it in the postings here and elsewhere? That might be a research topic for you! LOL! I am just thinking that maybe it works too well at desensitizing the nerves. Who knows but I don't want to be another test subject to find out.

Nice to have you around.

TTL J

i seem to be the only one who is having a positive experience with p/t.....tho i have to admit, this is my 4th (or 5th?) round of p/t and this is the first time i've seen worthwhile results.

what's different this time?.....well, the therapist is very knowledgeable about rsd......for instance, she doesn't expect me to do things that cause pain.....she says "maybe we'll get to that one later", even tho, after 6 months, that hasn't happened yet........the biggest difference is, i think, that this time i'm doing therapy in a heated pool (usually 88 to 90 degrees)....it's wonderful....if u ever have a chnace, try it.

hope this info is useful.

I have done physical therapy and a program where pt was part of at cleveland clinic. I will say the one not at cc the pt I let touch my legs and he stretched and messaged it. I will never do that again. I was in the worst pain even weeks later. Then I read that in rsd you should not let someone manipulate your problem area. I won't even let the doc touch them now. In cc I did some and had mixed feelings. In the pool my issue was the temp and that they also had men swimmers who made huge waves that felt like a gun shot to the leg. I wouls be open to the pool again but in a warmer and calmer pool. The best for me has been walking now outside and trying to build time.

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

Nice to meet you and great post there wakegirl! I agree with you 100%. Thanks to people like you, others here and the web I am beginning to understand more about physio for CRPS/RSD.

coachvand and Daniella. I would love to try the pool. I have heard it is wonderful and great for those with lower RSD/CRPS. Hopefully this new place will have the pool.

The RSD/CRPS is starting to wear me down emotionally and mentally. I still have yet to have someone actually expain anything to me. I me, about me and what is going on with me. My physiotherapists told me to come to them when I was in pain so they could SEE and understand.....had expressed my opinion to them about that one (every day lately my left wrist wants to just drop. I don't know why or what is causing it but it gets painful and then just wants to drop. urgh...). I think I also mentioned that here also, about not being able to SHOW her things because it isn't something she can see and that is why she thinks it isn't there. Though she is suppose to be the expert! Anyways, I digress.

So, physio is now the following:
Wearing runners (yesterday was first time and my doing) HURTS LIKE A B%^#$ard! But I did it and am going to keep trying to do it.
20min treadmill
Squatting with a ball behind my back and standing on a half moon ball thing
leg presses on a machine
Adductor/abductor pulls with a rubber toob
Obstacle course
more stretches (about 5 types of stretches)
Repeat as many times as can within 3 1/2 hours
30min-45min of one-on-one for
desensitization with cotton balls and macaroni and manipulation stretching
Did I mention yet, I hate this place?

So, I am suppose to go to for an assessment at this other clinic next week. It is a day and a half meeting with everyone there - doctors, pts, neurologist, psychologist, etc. As part of my recovery team they review me and my meetings with them and see if they can help me and if I am a good candidate to get into their program. I was told that on average their programs last about 6 weeks but I think this is just an intake person and doesn't really know for sure what CRPS is.

Can anyone tell me how long a person should expect to be in pt when they have CRPS, early stage and good ROM? Basically if I can get my strength up and get desensitized I should be good to go. That's what I am thinking but no one can tell me anything. What is the average? Even with good ROM and maybe poor-good strength? What is to be expected? Does exercise - stretching and weight bearing activity for a person with CRPS in the foot (still possibly in feet and neck/face/head) - make CRPS go into remission? Oh, plus desensitization 4x week. How long can desensitization take? I mean really, I can handle quite a bit one day but the next I am upset or something and everything drives me off into the deep end.

Like I said. I am down and out this week and having a hard time trying to pick me up again. I am tired, learning sleep does not equal actual quality sleep and that is stacking up on me. I keep getting told, you can't hurt yourself doing anything here. Sure, okay whatever. They have asked me to explain to them what 'over do it' means and how that is possible. Can anyone help me here with that one? How can I explain it to them in a way they might be able to understand? They seem to think that if I am hurting it is just because of not using a certain muscle group or....they have a reason for everything and only when I tell them, not I actually didn't do that today or that at all, I get, well I don't know you must have done something because you can't over do it or hurt yourself with what we have given you.....ugh. Like I said. I am tired. Help me out if you can. Thanks. J

Has anyone done fluidtherapy? I think that was the name I did it at cleveland clinic. You put your legs in this machine that is filled with sand. The machine goes at different speeds and temperatures. You gradually build up time and speed. This is suppose to desensitize the nerves.I understand about needing to move the effected areas my issue is with a person touching me is that one my pain is not always horrible immediate but the aftermath is hell. Also it just takes someone to do too much or stretch the wrong way. I can see why it is so important for the person to know about rsd.
Kyzy is this a day program? I just ask cause I did well only made it through part cause my pain level was so high but at cleveland the day program is m-f 8 hours a day. I'm like you about the overdoing it so I understand your fears and concerns. I don't have advice cause I'm trying to find the balance of pushing but not going past my breaking point.