I have RSD in my left foot/leg. I tried to get an SCS but it was denied. Now the doctor has me on terazosin, lumbar sympathetic blocks, and physical therapy. I have told everyone multiple times that I have never been able to tolerate PT in any form...especially on land. Water therapy is better, but not great. I've had about 7 visits of PT so far and I cry every single time. I am getting very little sleep because the pain has gotten so much worse. And I think I have done something to my knee because it has never bothered me like this before. Any one else had this happen? How do you get the doctor to understand that this is just not the solution for everyone?

You need to stand up for yourself, if pt is causing so much more pain. STOP going! Call your doctor and tell him about it. Sometimes they just don't hear except what they want to hear.

That's terrible...doesn't sound like you have the right therapist. I completely understand what you are going through and believe me...getting the right therapist is SO important when you have RSD. As is getting the pain under control and manageable so that you can DO the physical therapy.

My suggestion is to go in and discuss this with your doctor...but not take the position that you just can't do the physical therapy at all. Physical therapy is a VERY important part of getting the function back and to keep the RSD from getting worse...but it needs to be the RIGHT sort of therapy. Discuss your goals with the doctor and start a discussion with him about how you can accomplish these things.

Earlier this year I was in no condition to handle outpatient physical therapy. My doctor was amazing to work with and she ordered home physical therapy for me. This worked out so much better because we started out with VERY VERY basic stuff. Just doing ankle stretches while sitting, heel and toe raises while sitting...stuff like that. It was no weight bearing at first and we worked out way up to that. It was all stuff I could do in my house throughout the day, EVERY day, and that worked a million times better for me. My therapist was amazing...pushing me just enough but never overwhelming me and always listened to me if I said I couldn't do something.

But physical therapy is really stuff that you need to do every day throughout the day and not just AT therapy. This is why it is so important to work with someone who understands RSD or is willing to be educated about RSD so that they understand what your limits are.

Also...discuss your pain levels with the doctor. I don't know what all you have tried...but maybe discuss getting a portable TENS unit that you could use at home and wear while you do the therapy. This has been a life saver for me and more helpful than any medications they have had me try. Maybe try a different med, or combination of meds (only start one at a time though), try heat therapy, maybe discuss the possibility of tDCS or ketamine. Maybe before therapy sessions try taking a warm bath with epsom salts or try ultrasound heat therapy.

If you still end up going to outpatient PT, maybe discuss with the therapist trying the ultrasound or stim therapy at the beginning and/or end of therapy. When I did outpatient therapy way back when this first started they did the ultrasound for 5 minutes at the beginning of therapy and then stim with HEAT at the end. Also...make sure to discuss all these things with your therapist too. Let them understand that you WANT to do the therapy and get the function back but that the current program is too intense and leaves you unable to function afterwards because the pain is so bad.

If the doctor and/or therapist aren't willing to work with you on this then you may need to find new ones. I was so bad that I was stuck in a wheelchair for months unable to stand or walk for most of 2011. But after 7 months of physical therapy at home I am now able to walk with a walker, a little bit without (the pain level gets too high too fast for me to do this regularly), up/down stairs with a cane...it's still not like I was before but it is SO much better than I was doing before. And the pain is better than it was before as well.

Just remember that this all takes a long time. 3 weeks into physical therapy I still had to use the wheelchair and couldn't barely stand for 30 seconds at the counter. But you just need to keep working on it and even though you won't necessarily see big changes every day or week...after a month or so you will start to notice things that you can do NOW that you couldn't do 4 weeks ago...6 weeks ago...etc. It takes daily dedication to doing these things (which is why I am such a huge believer in at home therapy because EVERYTHING you learn will be something you can do on your own without special equipment)...but if you just set your mind to it you can accomplish great things.

BUT...first you need to work with the doctor and the therapist to set these things up so that they will work for you and to make sure that you are having your pain properly managed so that you CAN do these things. Just wanting to isn't enough unfortunately...we do need help. It helps me to write out on a piece of paper what my goals are and what things I want to try to reach those goals. First dicsuss the goals with the doctor and how he thinks you might reach them (explaining to him that the current situation is NOT working for you). Then...if he doesn't have any ideas or doesn't mention the things you listed that you want to try, discuss those specific things with him. Maybe a TENS unit isn't something he would have ever thought about but maybe it would help you a LOT. I mentioned this to my physical therapist and that day she called my doctor, who approved one, and the next day I HAD the unit in my hands. I was stunned at how quick that all happened...but then I had a physical therapist and a doctor who I have a great relationship with and they know how dedicated I am to getting better so they will try to give me any and all tools that I need to get better.

Sorry this is so long...I really hope that at least something I have related about my own experience is able to help you. I hope that you are able to find some relief from this awful pain soon. Good luck.

Hi puppyraiser8! You definitely need to speak up for yourself and stop doing the PT if it is causing you more pain and discomfort.

I am one of them that could not tolerate it at all. One of the docs I went to tried sending me to PT and I cried the entire time, it was pure torture. The TENS unit was so much worse then the desensitization exercises. Everyone is different in what they can do and tolerate.

If this is the only path your doc wants to go down, then you really need to think about looking for another one. I did. I went through quite a few...I have two SCS implanted now.

As far as the insurance approval goes, sometimes the insurance company requires other treatments first before SCS or anything major will be approved. If PT is attempted and failed, you do not have to continue. Your doctor has to submit the proper documentation to the insurance company on your behalf. Again, you need to speak up for yourself!

Best of luck to you,
Nanc

Thanks everyone! At least I'm not the only one who had issues with it. I have tried just about everything in the last 15 years. I can still move around my house as needed, but not as much as I would like. I had a TENS for a while....a very long time ago. I see the doctor tomorrow for a LSB so I am hoping that we can talk about things then. I guess part of it is I am just not sure how long is "long enough" to try to push through. I know it's only been a little over 2 weeks. I can push through the pain while I am there if I have to, but when I get home...it's horrible. Thanks though!

If you are totally unable to function when you get home then they are having you do too much. Probably need to start smaller. I find that when I do the exercises on my own and spread them out throughout the day that it helps a lot. I made myself a little checklist in the beginning and after I did the exercise I would check it off. Then rest a few hours, then do another one. I think I read somewhere that you need to balance the physical activity with rest...sort of like your heart which beats for half a second then rests a half a second. Doing the full on hour at physical therapy is just brutal...especially if what they are having you do is more advanced than what you should be starting with. As you the basic exercises become easier and less challenging THAT is when you start adding in things and making them more difficult...but not before that. If the basic stuff is still very challenging then you just keep working on that until you master it. Sometimes it is things as simple as being able to do a 10 heel raises instead of the 5 you started with...and just celebrate those little wins. But obviously you can't do any of that until they get your pain better managed to begin with.

Good luck...hope things go well with the doctor today!

Nanc,

I remember the TENS unit. absolutely, hated it. Never crossed my mine when they hooked it up that the wires have to touch my foot and ankle. yuk! painful even thinking about it.

When I broke my arm in 2003 the first PT kept pushing on my arm and I screamed and screamed and she said, "You're getting yourself upset!" And she kept pushing. For me to scream and cry was very unusual ... I've been thru many falls, surgeries, etc etc. and never made a fuss. SO I called my sister who is also a PT and she said, that does it ... you're coming to me for PT and she immediately diagnosed that I had RSD ... I still screamed 4 times a week for months but at least she understood that my arm should not be pushed. If I didn't have a sister who knew about RSD ... I would never have gone back and my arm would have never been right again ... so I was really lucky with that ... problem is ... when you try to go from one health professional to another ... they start acting like you're a nut case ... and they all start giving the same answer. Anyway, just wanted to let you know that I know what it is like when you are made to feel as if you aren't handle this pain right ... like it's your fault!

The very very first physical therapist I was sent to thought that massaging my ankle would be a good idea. This was prior to the RSD diagnosis and they just thought I had a sprained ankle. God that HURT! I tried to be tough and just sit through it...but the pain just kept getting worse and worse and worse at that point. Of course...they also had me using ice on the ankle, and elevating it, and immobilizing it. Physical therapy for RSD is not the same as it is for other things and should not be treated the same by the physical therapist. If someone tried to push or touch any of my RSD areas again as part of therapy I would probably kill them. I can't even stand getting gently hugged by family.

I am sorry to hear you have had so much pain with the RSD. PT is suppose to help, if you are in pain that much, I would stop it. My son is a OPT and he never does anything to hurt. Your doctor may need to be changed, in order for someone new to listen to you. I really hope others with RSD will offer support and direction for you. You will be in my thoughts. ginnie