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Originally Posted by LoriZ
My sense is that Calmare is often worth a try.
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Yes, that's what I think, too. It's not a magic bullet, but it just didn't seem to be well-known for a relatively new RSD patient like my daughter, and I've heard that you have a better chance for remission when you've had it for a shorter period of time, so I wanted to bring it up on a couple of discussion boards and shoot the breeze about it and hear about other people's experience with it.
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There are not a lot of clinical trials of it (and none, to my knowledge specifically for CRPS-mostly for cancer related pain).
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Yes, I believe that the new major studies coming out in June or July are for cancer-related neuralgia, and thank God for any treatment that can help cancer patients!!! But the types of pain are related, so I'm hoping that it will also help start studies and get insurance coverage for RSD patients.
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My daughter and another child we know both tried it and got relief to different degrees, but it did not last for either. I have heard anecdotal evidence of others for whom the relief is quite long-lasting.
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How long did it last for them, if you don't mind sharing?
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You can find a treatment center here: (see LoriZ's post for link)
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I'd suggest making sure that they're certified, and then ask how many RSD patients they've dealt with, and their success rate (and how they define the success rate), and if the doctor does every treatment or if they hand it off to a tech. Those are things that I found helpful.
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I'd love to hear other people's experiences with it.
Lori
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Me too! I'm really hoping that we hear from people that have had it done a while ago, and how they are now.