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Kathy, it tickled me when you talked about saying a little prayer that the dr. would have pain for 24hours. I have done that. We all must thing a like. I know when I was in my boot after the cast. I could not get comfortable. I steadily adjusted and adjusted, because it just hurt. (didn't know I had RSD at that point) I complained to the Dr. for a month. Of course he never did listen.
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Catra, I am the same way. I need to wear socks and sometime slippers just to protect from the cold air and breezes. Not to mention my foot is always cold. I am on an extended release pain meds so this helps. But I am still wanting to get a census.
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My wife wears a brace on the arm she broke that triggered her RSD. She's wears it constantly, now for nearly 10 years. The docs have asked her to get rid of it but she wont. :(
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I have RSD in both knees and wear soft braces on both of them whenever I leave the house or am going to be standing for awhile. The support helps me, and actually a stronger pressure with compression does not aggravate the pain as light touch does. They also help keep down the swelling. After several hours with the braces on, though, they start to cause more pain. So it does come down to the lesser of two evils at some points. I agree that while they sometimes cause me more pain, when I have them on I don't feel my pants rubbing up against my knees causing lots of pain every time I move, which I can't stand. It's give and take. I've said before with the braces that it feels good to put them on and it feels good to take them off!
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Maybe 8 months after I got RSD/CRPS in both feet and ankles following an injury to the tendons (as confirmed on MRI) on equipment at the gym, I fell victim to a physical medicine doctor at Cedars Sinai's pain clinic who determined that my feet had splayed, requiring more support than was available with an ordinary orthotic. Without consulting any of the pain docs, she put me in "ankle/foot orthotics" (AFOs): rigid pieces of molded plastic, support built into the foot piece, which was hinged to a Velcro strapped piece around my shins. Due to the hinge, I had no lateral (side-to-side) range of motion, whatsoever.
At first, they were great, and I could walk blocks without pain. That probably lasted all of a week. After that, it still hurt to walk, but the AFOs made it easier, at least until I didn't have to be on my feet, then there was a great swell of relief as I could take them off, followed - maybe an hour later - by the onset of intractable pain that wasn't touched by up to 20 mg. of oxycodone. Eventually, I realized that I was in a vicious cycle, and was persuaded to drop them entirely, at which point my overall pain levels dropped significantly. Once more I had to learn the lesson, immobilization and RSD don't mix! (The casting of both feet shortly after the injury having really brought on the RSD in the first place.) I would advise anyone to avoid a brace to the maximum extent possible, where even now, as my bare feet hurt, all I have to do to get some temporary relieve from the deep internal pain in just shake them a bit. And I understand why so many pain docs will tell patients to avoid guarding the limb at all costs. (Although the real danger is said to be atrophy.) That said, if you absolutely require something to keep your arm from avoiding contact, etc., I would get something as flexible as possible, and then make a point of slipping out of it at least a few minutes every hour in order to fully mobilize the limb. Even due a little weight bearing exercise: hold a book out in front of you for 30 - 60 seconds. It's that important. Mike |
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Has she tried Lidoderm patches? They help to provide some pain relief, BUT they also reduce the stimuli that can most aggravate allodynia such as fabric touching the skin, wind, etc. Prior to the RSD onset I had been wearing a wrist brace for 2 years or so. After my 3rd surgery (the trigger for my RSD) I could no longer stand to wear a brace. I became very proficient in guarding my "bad" hand, though. I did it so often, that I end up causing my elbow to get worse, along with new pain in my right shoulder, trapezius, shoulder blade and neck. Has she tried working with a pain psychologist? I don't think I could have broken my habit of guarding without help. And lastly, finding the right combination of pain meds, in the optimal dosages, was key for me. I choose to limit outside stimuli by staying in my home, so that I can CONTROL my environment. Even a tens unit, for when she's in public, might be a good idea. When I'm out in public, I now have coping mechanisms I learned in therapy (such as breath work) along with meds to help me deal with the pain and not further exacerbate my RSD by guarding. Edit to add: I use a pillow for travel and at times at home--pretty much when my pain is elevated from unusual activity. If she's like this all the time--her meds are not adequate IMO. I have very little atrophy at this point (it was much worse years ago) and while my range of motion is decreased, it's within normal ranges. |
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