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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Re: Shaman
May 14, 2003
Hi Knappa, (once I finished this I thought I'd come back and warn you-its a long post! ;) )

There does seem to be a theme with the tx from what the researchers are finding. Nothing conclusive yet really, sad to say.

The blocks are offering the first real hope for CRPSers if done early and properly. Many doctors out there are using blocks to diagnosis and then no more is given. Or, as in one lady's case I read, she had over 435 blocks at the time the article was written and is still at it. It seems to be a case of over-treated or untreated, only for dx or done in sets which seem to be the more approp. way to give blocks according to what the experts say.

Some people don't even respond until the 4th or 5th block. So when a block is done for dx purpose the CRPS is missed and then the person is out of that window.

Im going into my seventh year with this. I have strong faith that one day and not that far away that there will be a better tx. I guess my cup is still empty and needing me to get back at filling it with life ;)

There may not be a cure, at this point in time, but there is always the chance at remission. Thinking like that is so beneficial to the mind and body but I am realistic. Blocks of any kind, whether it be by medication, ganglion, cutting the nerve and so on is not done properly on most of us.

You own example of going through many doctors before you find one that knows this condition is much the same as mine case. Not enough knowledge out there. I reckon us to the pioneers with the many before us unfortunely. But it is starting to change...finally!

There is a post title something like 'treatments tried or what have you tried' which a few of us posted on I think it was just last week that you can take a look at too.

Tx I've tried are massage(various types), chiropracter, prolotherapy, dry needling, accupunture, pressure point massage, medications, biofeed back, hot waxing, TENS, Magnets, Capisin cream

The ones that I found effective with how this disease has hit me were hot baths (or anything with heat) and I do soak long or a couple a day, and with the epsom salts which keeps my swelling down, PT(or my own excerise regime), and finding a better combination of meds which did take a long time. The right combination of meds actually creates a chemical block that's taken orally(and a few different routes) and each of us are very different in how the meds work/act/respond on us.

Because of the traction type injury I endured, the chiro was really helpful but I should comment that it wasn't a bone-cracking type chiro. I was told by my neurosurgeon that my spine couldn't handle alot. He said I risked breaking something in my neck or stroking if I went that way. I went to a passive chiro who knew this disease very well.

A control is much more possible than a cure, of coarse. And each form of tx you find that helps you stick with it and see where it takes you.

Some areas of the body are more difficult to excerise for example so we have to be creative as well. Im trying to figure out how to do my hip/buttocks, short of the obvious.

What have you tried that helped so far or what are you thinking about trying?

Shaman





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