Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-21-2021, 10:13 AM #51
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I have been suffering with RSD/CRPS for 26 years today, this day *exactly* and I have yet to "understand" what remission means. Is it that you plateau? That the symptoms stop getting worse, but you don't get better either? Is it that?
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old Today, 04:14 AM #52
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Quote:
Originally Posted by SloRian View Post
Hi Jasper,

My daughter had excellent results - she went into remission after 12 treatments. The remission lasted for 3 months (within the typical range), then it started to come back and she needed 4 more treatments to get back into remission (also typical - we're hoping this remission will go 6 months or longer - that's the pattern). It's been almost a month now and she's going strong. We went to NJ, and the doc and his staff were professional and kind and very friendly.

I have a great update, too - I wrote a 5-page letter to my insurance company, trying to get them to cover the cost (I pointed out that my daughter was scheduled for a $60,000 SCS, and was put into remission for under $3000 with Calmare, which is quite a savings for the insurance company). I just got a letter from our insurance company yesterday, and they paid 80% of the costs of the Calmare treatment! This is great news - part of the reason why this treatment isn't well-known is that it isn't covered by many insurance companies yet. Insurance companies won't pay for things out of the goodness of their hearts, but they might pay if they see it saves them money. Anyway, I hope they will start paying for more people to try this. Like most treatments, it won't work for everyone - but it sure worked for my daughter, and it's non-invasive and painless. I'm very grateful we tried it.
Hi There 👋🏼
New to this group & here to learn right now. That’s wonderful the Calmere Therapy worked for your daughter…. such a relief for her & your family, I’m sure. You had mentioned writing several page letter to your insurance company to fight for coverage. Would you be willing to send me a DM & share a copy of that? I have no support to help me do that & just not capable currently for taking that on —having a template to work from would be incredibly helpful!!!

Have intractable pain & after years of determination, trying combo of different therapies & lifestyle changes — was able to stabilize my CRPS for many years.. But now for last 8 months in excruciating flare non stop, barely able, eat, sleep, ect. Doing everything I possibly can on my own but nervous system is so dis regulated, those modalities are barely working. If your willing to share & help a warrior get some relief, I’d be so grateful!! All pain specialist want to do is SCS & wise enough to know, that’s not the right route for me..

Thanks for your time & hope to here from you soon. Would love to hear an update on your daughterÂ’s recovery as well. Take care 🧡
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