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Old 01-02-2012, 02:04 PM
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catra121 catra121 is offline
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Location: Illinois
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
Posts: 1,785
15 yr Member
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Quote:
Originally Posted by TrudyGarnett View Post
Thank you for the ice advice. We were icing her leg/foot for a long time as this was directed by the podiatrist, but we quickly realized that he had no idea what he was talking about after many visits to him where he told my mom to stay off of it in order for it to heal. I doubt this guy even knows of RSD. Just so I can prepare myself, does RSD ever get better? Is there any hope that she will have a normal life again? She is fighting through this, but getting an appointment with a doctor is so hard and she's seen so many doctors that are no help and we're losing time. I'm doing a ton of research to try and find her a good doctor online, but it is very difficult.
So far...there is no "cure" for RSD. Remission is possible. But more important is that you need to know that even if your mom doesn't go into a full remission she can still possibly have a "normal" life if she can get proper treatment and her pain can be managed properly. Will it be the same as it was before? To be honest...unless she goes into full remission this is unlikely...but it can still be more "normal" than it is right now.

But there is not really a miracle treatment that works for everyone and even with any treatment that removes the pain (more likely that it will get to a manageable level vs. disappearing entirely) it is still a long road of physical therapy and retraining yourself to get back a lot of the function you lose when immobilized and restricted because of the pain. It is VERY hard...but when you have RSD you HAVE to make yourself MOVE the affected RSD areas. In the beginning it will probably only be very small movements and working your way up to doing more. It is a SLOW process...but it is absolutely key to getting back to a normal life.

The biggest help to me in addition to getting to the right doctor and a good physical therapist was having people around me who were supportive and love me. But in addition to just being "understanding" of what I was going through...these people also give me a great gift by treating me normal. We don't really discuss the things I can't do, or how I am "different" than before...it's more about them just supporting me through my rehab, pushing me to do the things I need to do, making me laugh and smile, and helping me to just enjoy my life. It's so easy to let yourself get down in the dumps because you are constantly in this never ending cycle of pain...but if you have people around you who can help you stay strong that's such a key part of getting back to a more normal life.

But it can be done, people do it, and if your mom can just keep it in her mind that things are not hopeless then she can get her life back then she will have something to fight for. Just be careful to not let her put all her hopes in the idea of any one treatment being this miracle cure for the pain. I did this when I got my first lumbar sympathetic block and I was SO discouraged when my pain didn't disappear after one treatment. Rather, she needs to look at all these things as stepping stones towards getting better. Each medication, each treatment, each day of physical therapy exercises...these are all things that contribute to her getting back to that normal life. It's not easy to see the daily progress...but every time she's able to do something she couldn't do last week or last month...those are things to be celebrated rather than constantly focusing on all the things that she still can't do.

So...it's not a hopeless future...but it will be a long road and (at least for me) it really helped to look at it this way so that I didn't get frustrated by the amount of time it took to get better. I'm not like I was before, but I am incredibly grateful for the things that I can do now that I couldn't do even a couple months ago. Just try to keep the focus as positive as possible.

Also...I'm not sure how mobile your mom is or what her ability to get to and from physical therapy is...but when my doctor wrote out an order for a physical therapist to come to my home...that was a godsend. This way I was given exercises and routines that I could do inside my house and that I could do on a daily basis even when the therapist wasn't there with me. For RSD, you really need to do these exercises every day. In the beginning she may not be able to do all of them every day, but at least some of them every day. It helps to have a therapist that you have a good relationship with, one who is interested in being educated about RSD, so that they can taylor the routines to your needs as the patient. Once she gets to a point where she's gotten as much as she can get out of the at home therapy, that would be a good time to discuss moving to an outpatient physical therapy program where they have equiptment (possibly a pool for water therapy) to keep progressing further.
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