[Breaker814]

Today was a really bad day. I am starting to worry that the RSD is spreading to my back already from my foot. Its been breaking my sleep now (Which never happened before only till recently)

Some days I can go to PT and I can do some exercises but I keep seeming to get worse. So she asked me to ask the Board if anyone had particular things that they do in PT that might seem to help them. She said she is open to anything.

Some days she can stretch me, some days I can use the bands, I can't seem to at all do any machines. I've done Towel crunches, I tried to even pick up little cough drops and move them around which I couldn't get past the 2nd one. The stim she had to stop using because it was flaring my RSD.

Please help

[CRPSjames]

Originally Posted by Breaker814

Today was a really bad day. I am starting to worry that the RSD is spreading to my back already from my foot. Its been breaking my sleep now (Which never happened before only till recently)

Some days I can go to PT and I can do some exercises but I keep seeming to get worse. So she asked me to ask the Board if anyone had particular things that they do in PT that might seem to help them. She said she is open to anything.

Some days she can stretch me, some days I can use the bands, I can't seem to at all do any machines. I've done Towel crunches, I tried to even pick up little cough drops and move them around which I couldn't get past the 2nd one. The stim she had to stop using because it was flaring my RSD.

Please help

It sounds like you would be better served to invest some time in finding a more knowledgeable PT. It is very scary that a PT would ask a patient to find PT exercises from a forum. What works for one patient with CRPS may flare another. Do yourself a favor and don't waste time trying to educate a physical therapist. Find one who is already there.

Time is of the essence, you have none to waste.

[birchlake]

Originally Posted by CRPSjames

It sounds like you would be better served to invest some time in finding a more knowledgeable PT. It is very scary that a PT would ask a patient to find PT exercises from a forum. What works for one patient with CRPS may flare another. Do yourself a favor and don't waste time trying to educate a physical therapist. Find one who is already there.

Time is of the essence, you have none to waste.

I agree with this. I saw three Physical Therapists before settling on one that I liked very much and who had extensive experience with CRPS. The first one was arrogant and I disliked him. The second one had a doe in the headlight response to my condition. Third one was a charm.

Have you asked this therapist how many patients they she has treated with CRPS?

After developing this condition and finding out that it is widely misunderstood, even among professionals, I ask ANY person that I am considering using for treatment that question. Don't be afraid of offending them. A good health care professional will be honest with you no matter what their answer. And if they do get offended by that question, you rule them out and move on.

Good luck!

[catra121]

Originally Posted by CRPSjames

It sounds like you would be better served to invest some time in finding a more knowledgeable PT. It is very scary that a PT would ask a patient to find PT exercises from a forum. What works for one patient with CRPS may flare another. Do yourself a favor and don't waste time trying to educate a physical therapist. Find one who is already there.

Time is of the essence, you have none to waste.

I don't know...at least her therapist seems to care and is willing to try something outside of her normal routine. I've heard of far too many physical therapists who try to approach physical therapy as a one size fits all and god forbid you try to tell them something they are doing doesn't work or is making you worse.

I think (and this is just my opinion and I totally respect James's and birchlakes opinions and that might be the best option for you...only you can decide) that if you are comfortable with your physical therapist and feel like she really wants to partner with you to help you achieve your goals then she might be worth keeping. My last physical therapist was not very knowledgeable about RSD other than having heard of it before, but she really worked with me to combine what she knew and what I knew to come up with something that worked out really well for me. I didn't have to tell her exercises (I admit that is a little odd) but she did really grill me on what would be the best way to approach the therapy, what by biggest concerns were (I had a LOT of symptoms when we first started), what other sorts of things I thought might help me. It was a real partnership and I have found that is very rare...and is worth educating your physical therapist or doctor so they can help you better. RSD is just not common enough and at least this woman is willing to admit that she doesn't know everything.

Just offering another perspective based on my experience.

[Breaker814]

Im sorry, I didn't mean to offend anyone. I really feel comfortable with the PT. She helped me before. She just thought maybe someone had a suggestion. She really does care about me and I know she had some patients with RSD and like she always tells me everyone is different.

I've had other PT that really are terrible.

[ballerina]

I have made the PT rounds. My warning is that a caring PT is a dangerous PT if you have to train him or her. Equally dangerous is seeking PT exercises from folks on a board who have CRPS.

Take the time to find a caring PT who wants to partner with you but who has already been trained by other CRPS patients and their co-pays and not yours. I agree with James. You are newly diagnosed and unfortunately, the window of opportunity for remission is vanishing as I write this.

Invest every ounce of your energy in a trained top flight treatment team.

[CRPSjames]

The worst PT experience was my first one. She was incredibly caring and told me she had treated some CRPS patients. She was very open to anything I brought to the table. The trouble was I didn't know enough to bring anything to the equation that would help me. I ended up getting worse and wasted four months with her. Then I got smart and did my homework.

Asking if the PT has treated CRPS patients is not necessarily a good question. My first PT was probably just as clueless with me as the other CRPS patients.

After an extensive search I found a PT who gave me a thorough evaluation with a CRPS protocol. I made rapid progress but unfortunately my chance for early remission was gone.

BTW, the second PT did not have a great bedside manner but helped me more in one week than months of the sweet, caring but clueless.

Don't let your window of remission vanish, find a PT who can hit the ground running and can guide and lead you rather than the other way around.

[catra121]

Let me see...bands were pretty advanced for me this last time when I started doing physical therapy so I had to start even easier. I'm going to try to list here some of my exercises that I did in the very beginning last year when I was stuck in a wheelchair and couldn't stand or walk at all.

1. Heel/Toe Raises - While sitting with feet starting flat on the floor, raise heels, then place feet flat on floor again, then raise toes, then place feet flat on the floor again. I would do 10 reps of this twice a day. As it gets to be "easy", try alternating feet so that when heel on left foot is raise the toes of your right foot should be raised and vice versa. This helps with coordination. Also...make sure the actions are controlled and not just flailing. If you can't do 10 reps then start with just 5 and increase after a week once you get the hang of it.

2. Seated leg raises (turning ankle in and out) - While seated with feet flat on the floor, raise your left leg so it is parallel to the floor. Turn foot out and then in. Place foot flat on the floor. Repeat with right leg/foot. I started with 5 reps of this twice a day and increased reps to 10 when I was able to.

3. Towel crunches - You know this one already. It was actually one of the easiest things for me and I stopped it pretty early on because it was not challenging.

4. Walking on knees - kneeling on the floor, "walk" 10 feet then turn and "walk" back. I would do 2 reps of this twice a day. This was to help me build up some leg strength because at the time I just had nothing left. It was actually sort of hard on my ankle...dragging it behind me on the floor...but once I was able to walk/stand I didn't have to do it anymore.

5. Bridging - Laying on your back with feet should width apart and flat on the floor, and knees in the air, lift your but off the floor (like a bridge). This one was hard on me and I only did it every other day 5 reps at a time twice a day. This was hard on both my ankle and my back but it helped me get used to weight bearing in the beginning without the risk of falling.

6. Crunches - We all know what these are, right? I didn't like them and they were difficult for me but like the bridging I did them every other day, 5 reps twice a day. It WAS good for my back though and helped me build back up a little strength there. It was painful though...not gonna lie.

7. Cat back - Kneeling on hands and knees, raise your back (like a cat arching its back). This was the easier of the back exercises and I did 10 reps twice a day.

8. Leg Lifts - Laying on left side with body in a straight line, raise your right leg (make sure it stays straight above the left one). Hold in the air for a few seconds and then lower it. I did 10 reps, then switched sides. Then I layed on my back and did 10 reps raising each leg. I would do this once or twice a day depending on how my back was feeling. If you can't do 10 reps, start with 5. I also found it was easier to prop myself up on my hands or elbow (because of my back being so sensitive)...but you can do it either way. Just make sure again that these are very deliberate motions (not flailing) and try to hold you foot in the air for a couple seconds before lowering.

9. Ankle Alphabet - While sitting, lift your foot up off the floor and draw the alphabet with your toe. Try not to move your leg...just your foot. I did this a lot throughout the day whenever I had a free moment.

There were some other that I did in the beginning but those were specifically to deal with my balance issues. As we went on, we gradually made each of these things a little harder and added new, more difficult things. I did these until I felt that they became "easy" (by which I mean they weren't as challenging) and then we made them harder/did something new. The sitting ones transitioned into things I did later standing at the counter in the kitchen once I got to that point. The nice thing about having the physical therapy at home was that everything I did didn't need any special equipment and I could do them all every day.

Start small and focus on trying to reach the number of reps. If you have to start with 5 instead of 10, that's fine, but try to work your way up to the 10 over the weeks. When I first started I could literally only do one exercise at a time and then had to rest for at least 30 minutes in between. Then I could do 2-3 at a time, then 5, etc. I made myself an actual checklist and every time I did an exercise I would put a check mark by it so I could keep track of what I was doing every day and make sure I wasn't missing anything. If something was particularly difficult then i might have only done it every other day. But you just don't want to give in and decide not to do something at all because it is difficult (unless it specifically causes a flare every time you do it...then you need to swap it for something else). It is important to do your exercises every day and not just at therapy. The progress will be gradual but if you do them every day then it will be easier for the physical therapist to see your progression each time you see her. I know for me I didn't see much change every day bit every time my therapist saw me she noticed I was stronger, was doing the exercises with more precision, and didn't need to rest as long in between. That way, every session she could give me something new to try or would tell me how to make what I was doing just a little bit harder.

If these exercises seem too easy to you I can give you the progressions of them after this. But I think it's really important to start with things you can do every day (that alone is quite a challenge when you have RSD) and then gradually increase from them. If you start with things too hard (even if you can do them sometime in therapy) it is not consistent you won't see that gradual progress.

Another thought (and I'm sorry the stim didn't help you) is to maybe try ultrasound in the beginning of your therapy sessions. It seemed to help loosen me up a bit. At home I always started my day with a hot bath and now I also have my own at home ultrasound machine that I do after the bath which seems to help. And maybe heat after the sessions even if you can't do the stim. I know heat has always been one of the few things that helps me.

If you have any questions or if anything I said was not clear, please let me know.