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 10-12-2015, 04:05 PM #11
Theodora Theodora is offline
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Location: Madison, WI
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Theodora Theodora is offline
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Thank you for the responses!

I just checked a Calcium and Vitamin D and have finally brought both of those up to where they should be. They had been kind of low.

I do break a lot of bones since the RSD started. I also dislocate or tear tendons a lot due to the hypermobile part of it. (My original RSD Doc says hypermobility caused my RSD).

I guess I never put these things together in my head to blame it on the RSD but I too find it difficult to say where it stops and something else starts.

There was one very good RSD Doc here when I was first diagnosed - he was neuro/pain. Everyone else now seems to think I'm some hypochondriac so I'm afraid to ever bring anything up. When I do I'm dismissed immediately and they treat me like I'm loony. I don't even visit the Doctor for broken bones anymore. They seem to think I'm a nut but I don't even complain about the pain very much. I don't seek meds - in fact, I never take them and say thank you, but no thanks. I don't know what else to do. Maybe being hooked up with a decent Doctor would solve a lot of my problems?
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Age 32 - RSD/CRPS Dx 11/2006 with Severe Small Nerve Fiber Neuropathy and various recurrent issues and autoimmune disease.
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Old 10-12-2015, 07:37 PM #12
Enna70 Enna70 is offline
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Quote:
Originally Posted by Theodora View Post

There was one very good RSD Doc here when I was first diagnosed - he was neuro/pain. Everyone else now seems to think I'm some hypochonSdr iac so I'm afraid to ever bring anything up. When I do I'm dismissed immediately and they treat me like I'm loony. I don't even visit the Doctor for broken bones anymore. They seem to think I'm a nut but I don't even complain about the pain very much. I don't seek meds - in fact, I never take them and say thank you, but no thanks. I don't know what else to do. Maybe being hooked up with a decent Doctor would solve a lot of my problems?
Sadly my experience was the same as yours....the medical profession can't answer our medical situation thus we don't have one .... Getting a decen doctor does help; especially to keep us sane after hearing we are crazy....but what you are doing...being your own advocate is very important too...continue to get informed and please continue to share your journey.....
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joint pain, neuropathy, rsd


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