My daughter's PT had her start walking on a hydro-treadmill (a treadmill in a tiny pool, basically). It was by no means easy, but it allowed her to begin using the muscles to walk again, but without having to put full weight on her leg. The water on her legs was very painful, and though she hated it, did serve to desensitize them.
The transition to walking without her crutches was extremely difficult and she by no means felt ready for it whent he PTs told her it was time, but she surprised herself and everyone else by getting off of them when she didn't think it was possible.
It seems that the main job of a PT in CRPS is to cheerily push people to do things that are agonizing and seem beyond their capabilities. I mention that so hopefully you will take heart when you don't think you can do more - you will probably end up surprising yourself at times too!
Good luck - I'm sorry you are dealing with this.
Lori
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Originally Posted by catra121
First off...I am very very sorry to hear that you have CRPS and that you are currently confined to a wheelchair. Last year when my CRPS got worse and spread, I was in a wheelchair for a good six months of so. Crutches...well...they suck. I couldn't use them once my CRPS spread to my arms but I can tell you that when I was using them I hated them and other than keeping me from full weigth bearing they did nothing to help me...and definitely nothing long term.
BUT...I am now not only walking but back to work where I am on my feet for 9+ hours a day 5 days a week. I have to use a walker because my balance is still awful and the walker also helps me to walk for longer because it takes longer for the pain to get up to unbearable levels when I use the walker vs trying to walk without it.
There are two thing that I would recommend. The first is to work with your doctors to find a treatment (whether medications, TENS, ultrasound, hot baths with epsom salts, blocks, or a combination of things) to get your pain levels down. At least down enough that you can tolerate physical therapy.
The second thing is to do the physical therapy. If you cannot walk at all now I would suggest seeing if you can get an at home physical therapist who will come to your home. This was SO key to me getting back on my feet. It was slow but progress was consistent. It took major dedication on my part though to push through the pain and do my exercises EVERY SINGLE DAY. You start very small with sitting down exercises and standing at the sink for 5 seconds at a time (holding on for dear life...and always with supervision). Gradually you increase the difficulty and the amount of time you spend doing each thing. The key, I think, is to push yourself so that you make steady consistent progress but not so much that you have a set back.
Getting a good physical therapist and making sure that they understand CRPS is very important. CRPS isn't like many other conditions or acute injuries that many physical therapists treat and it needs to be handled differently. If you only have a limited number of visits then discuss spreading out sessions to once a week and once every 2 weeks once you can show that you WILL do the work on your own and continue to make progress (because you will, right?). This was big for me because I was only allowed 20 visits or something and I needed more time to make the progress I needed. So by stretching them out I got 6 months of physical therapy instead of 10 weeks...and I needed all of it to get myself to a point where I could take it from there.
But even when physical therapy was done...I didn't stop doing the physical therapy. I began to focus on my endurance and getting a more normal pace. I translated many of the exercises into real world activities and kept pushing (still pushing actually).
Things that helped me in terms of treatments (and everyone is different so not saying any of this will help you) were portable TENS unit that I could wear when I did the physical therapy, ultrasound, heat patches, hot baths with epsom salts, lidoderm patches, clonidine patches (helped with my dizziness and blurry vision that I was having), and then later tDCS (didn't start this until after I was done with physical therapy but have seen great improvements since). And the walker...that's been HUGE. I have a rolling walker with 4 wheels and a seat. I feel safe using it despite the balance issues and it allows me to carry things safely and always have a seat when I need it. I also have a much more normal gait than I ever did with crutches or a cane (and therefore am not messing up other parts of my body).
Sorry that was all sort of long. I can't give much advice about meds because I am not taking any other than the lidoderm patches and clonidine patches. My pain would probably be less if I did but bad experiences with meds and a fear of the long term affects of them on me (since I am only 28). Many people get great relief with the right combo of meds though so hopefully others can make some suggestions. When I did take meds and did get relief the combo I was taking was Lyrica, Tramadol, Meloxicam, and Doxepin. Narcotics never made even a slight dent in my pain.
Stay hopeful...you will walk again...it's just going to take getting to the right doctors and physical therapists and holding up your end. You can do it. Sorry this was so long but if you have any questions about any of my ramblings just let me know. Good luck and take care.
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