Hi everyone,

I just wondered whether anyone here has actually had PT and it has made them worse instead of better?

I used to go to weekly PT and I didn't see any changes whatsoever, if anything, it was usually making my symptoms worse instead of better because it wound my leg up and made it more "angry". I have been onto 2, 3 week PT courses at Great Ormond Street Hospital in London and the first one made me somewhat better (I was able to walk without a wheelchair) but the second one didn't help at all and made my pain and the Dystonia worse.

As some of you know, my grandad passed away 5 weeks ago and due to that, I just haven't felt like doing any PT so have had to cancel all of the sessions that I had booked. For the first few weeks after my grandad passed away, I felt terrible because the stress had wound my pain up but I am now noticing that I am able to walk more and my pain doesn't seem quite as high as it usually does (it's a 6 and a half on the pain scale instead of the usual 8 and a half).

I'm not sure if the PT has been making me worse but the thought has crossed both mine and my mums minds and we are a bit confused as to what to do. I don't see my PT's until the end of January now so will mention it to them when I see them next. My PTs are forever telling me that PT can "cure" RSD and that if I don't do it, I will get so much worse but i'm just not sure if that is true in my case because I know everyone reacts differently. I am supposed to go to London in January for my leg casting but don't want to go there and the thought of the cast really scares me ... has anyone had any experience in casting an RSD limb? I had my leg casted in the early stages of my RSD and it made the spasms and dystonia so much worse so I don't want to go down that route unless I absolutely have to.

I was just wondering if anyone else feels that PT has made them worse and if anyone had any advice on what we should do now. The PT's made me better in some senses but worse in others so I just don't know what to do and am so confused.

Sorry if i'm rambling, I should be in bed!

Thanks in advance!

Hi Ali


I've been thinking of you lately. The holidays are tough when we've lost a loved one...

PT didn't help me much, I and my therapist think it was adding to my pain. I made little improvement when I was there (which is better than none) but the pain lasted longer than it should have.

Hang in there and know you are not alone...

I know pt made me a little "better" the first time round. I say that only because I had pool pt which enabled me to walk on my own again. The 2nd time in they discharged me before I'd had all my sessions because I was getting much worse. I had no meds or anything and my pain was totally out of control. Each session the pain lasted longer and was more intense. I've spoken to many who say it also made them worse as well. Too many pt's push us too hard and too far. You just can't do that!!! With rsd, the old saying of "no pain, no gain" does NOT apply to us! Why they don't "get it" I don't know but they don't and probably never will. They'd understand if they got rsd themselves.

As for pt "curing" rsd that's a bunch of bull hockey!! There is no "cure" for rsd and IMO aggressive pt, such as what they've done and want to do to you, is so very, very wrong!! The approach needed for us is slow and easy. Just walking round the house is good "pt". Playing with clay is good pt for the arms and hands. It's done the trick for me all these years and I'd never go back to pt for anything!

As for casting. I don't see that it'll do anything beneficial for you at all. I think, as you already stated, that it'll make the dystonia worse again and I also worry that what if it gets worse and doesn't calm down? That is what I worry about for you. You're doing so well at this point and doing your own "pt" at home is IMO better than anything they can "claim" to do.

Know my thoughts are with you always!

Big Hugs,

Karen

Hi Ali;

I have been thru almost 10 months of PT for my knee replacement that I have RSD effecting. Some of the time, it worked - helping me gain a little of my flexation and extension. Other times, the therepist would get too aggressive with my knee and the RSD would flare really bad. At a couple of different points during the year, I have taken a "rest" from PT and managed it on my own. My Ortho dr even suggested this. It really helped as it let my knee settle down with the flare and I could do my own excercises as I felt. I too have been told you must go to PT in order to "get over" the RSD, but I honestly do not believe this. The main point is to keep moving - not letting the pain keep you in bed - even if its just walking around in the house. PT does have its good points - they can give you encouragement and show you new ways of helping to maintain and hopefully regain some muscle movement. But, once they go over this, you can do most of everything at home yourself. Maybe a month or two break from PT would be ok - talk to your therepist on your next visit and maybe you can work out a plan for seeing them maybe once a month for 2 months or so - and then have another visit. Right now, my husbands insurance changed and they only cover $1,500.00 per year for therepy of any kind. This will probably break down to only about 8 visits for the whole year if I am lucky! So, I plan on see my new therepist a couple of times, getting ideas and new excercises, then doing on my own for the next couple of months. Then I will go back for a refresher every couple of months - unless things change! Remember if you start having problems, you can always call your therepist and start seeing them again. As for the casting..... I have no idea - but I would definately talk to your dr and explain your concerns. Overall, seems like good news for you Ali, having less pain and moving better - keep it up! I know its been a hard time for you the last month with your grandpa passing, but I think he would be very proud of you on how you have been coping. Take care!

Ali, you do whatever seems the best. Doctors don't know everything, and neither to Physical Therapists.

Not saying I know anything about RSD, but I suggest only taking calculated risks. I've heard you talk before about getting the casting, and there's just no guarantee that it will help, and the possibility it may make things worse.

You and your Mum know your body best. Don't let anyone use scare tactics and bully you around.

Prayer helps. I'll keep you and your Mum in mine.

Hi Ali. I hope you don't mind me intruding here when I have no business to do so, but your title caught my attention.

My DH has a chronic back problem and he went to PT in an effort to ease his pain. Not only did the physio make him worse, but it started a whole heap of of new problems for him.

The physio sent him to a heated physio pool for aerobatic exercises, but the water was far too warm for the VERY large amount of Chlorine they'd added to the pool, and he had a major allergic skin reaction. His skin was actually burnt as well as the allergic reaction.

His back pain was much worse after the physio, and he still suffers from a severe dermatitis caused by that pool. DH is very much against physios these days, and I can't blame him.

I was wondering how you were Ali. I hope your Christmas was OK considering the heart pain you must have been suffering. Sending you love from across the Pacific Ocean .....

Thank you so much everyone for your input on this - I really appreciate it and it helps getting other people opinions.

I'm going to speak to my PTs when I next see them (the end of January) and ask them whether they think that the PT is making me worse and what we should do from there. I have been told SO many times by them that if I don't do PT, I will end up in a wheelchair and that PT is my best chance of getting better so I honestly don't know what to do and we are really confused!! The PTs claim to know about RSD and they have treated many other people suffering from RSD however they have admitted that they have never seen a case to the extent that I have it, with the myoclonic spasms, dystonia etc. They are always doing "Trial and Error" exercises to see what will work and what wont work and I think sometimes, they forget that it could actually make me worse instead of better.

Karen - Thank you for your input, I really appreciate it. When I went on the first agressive PT program, it really helped - it didn't take my pain away or anything but it got me walking for the first time in 13 months. About 2 months after I finished the first course of PT, I returned back and had PT to try and get rid of the Dystonia but it didn't work - i'm not sure why but the PTs didn't spend as much time with me as they did the first time - it was sort of like once they got me walking short distances, they lost interest. I am due to return back onto the program in January for my leg casting, then sent home and then returning back for 2-3 weeks PT to try and get my leg in a straight position. The thought of having my leg casted really scares me though. I have read lots of articles on the internet saying that in children, agressive PT is the way to go and it can put the RSD into some sort of remission in time and have spoken to many children that it has "cured" but that doesn't work in my case. The PTs in London are the best in the UK for treating RSD so I think they know what they are doing but I honestly don't know ... the whole casting thing just scares me soo much!!!!!!!!

Koala - Thank you so much for your input. I am so sorry to hear what problems your DH had from the PT - that is awful! I have had hydrotherapy before but it didn't work for me at all (made me worse if anything) so the PTs wont go down that route again. I really appreciate hearing peoples input and seeing what they have to say as I am so confused at the moment - I guess i'll just have to speak to my PTs and see what they say when I see them next - I know that they will probably say that the PT will make me better in time so I just don't know what to do - it seems like a no win situation lol.

Thanks again everyone for your input - I will keep you updated and let you know what my PTs say when I see them next!

I think that you, as with me, it really helped a lot at first. Look at all you accomplished! But, then, like me, it stopped helping. I try to tell people to remember that you know your body, your limits, better than anyone else. Don't be afraid to say NO to a doc or pt person. They don't know everything and it sounds, to me, as if they do what most other docs do. They treat everyone with RSD the same. It's impossible to do because though we all have the same thing, we all experience things differently. Just because "most" young people with rsd may respond to aggressive treatment well doesn't mean that "all" will. It's the same for adults too. What's good for one is not good for another, be that pt,meds,blocks,whatever.

Try not to put too much pressure on yourself, that goes for your mum as well. You both know what's best and will do the absolute best for you when it's all said and done. Remember, just say no!! (If you want to that is) LOLOLOL

Big Hugs,

Karen

I too went through PT the first six or eight weeks at least and there was no benefit noticible. In fact, they iced it several times till I told them that the literature says NO ICE...also other things made me realize this dude was clueless , as were the next two. I move the foot a lot and try to use it as much as possible myself. Since it is a foot that has the CRPS, there isn't a whole lot to DO..except use it. I have had many surgeries on the foot and the last one resulted in nerve damage on the top of the foot and it has spread to both sides of the foot now. I have done all the usual stuff and taken many drugs and gone through many with drawals ...on the tail end of one now from the Avinza ....time release morphine. Made the foot feel great but made me very sleepy and would drop off in an instant..so just QUIT and am having a LONG recovery from that. Back on the endocet/oxycodone again... harder to manage, but no sleepiness. I want to get the ketimine low dose one week treatment if I can find anyone that is currently doing it. Dr, Harbut is not operating his clinic in Arkansas right now.
I think that is the future of good results with CRPS...or RSD which is really not used by the newer sites and docs.

good luck, Sherrie

Hi Ali

for me, at first PT made me alot better and then as my RSD progressed it made me alot worse. In the end mum and I did our own exercise programs at home and would just see a private physio every couple of months. Have you considered botox? also, instead of casting why don't they put a boot on you? then if it really flares the RSD up then you can always have it taken off again. I've had botox in my ankles and feet to try and correct them about 4 years ago and had it done under general anaesthetic. Whilst I was under they also casted both my legs into the "walking boots". They also tried serial casting on my legs to straighten them. Neither of them was successful but my legs had been twisted for years and nobody had done anything to them at all (and I've been non weight bearing for 7 years or so which has worsened the deformities). You could always ask for entonox whilst they are casting you if you are not having a general anaesthetic..? I find it helped with the pain of casting. I know some RSDers who have serial casting who wear split casts which are held on by bandages as apparently this is less risky to flare the RSD (?). Have you been seen by orthotics?

i'm so sorry to hear about your grandad

I'm really glad you're walking - how's getting back to school? how far can you walk now?

With physio... I think it's important to have some input even if they aren't doing any major work on your RSD arm and leg but work on strengthening your non RSD side and your core muscles.

Ok.. can't do any more but sending you loads of love and hugs and keep in touch

love

rosie xxxxxxxxx