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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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First and foremost--
Remember YOU ARE IN CONTROL OF YOUR CARE. Never let a doctor try to tell you otherwise. You don't have to agree to procedures you don't want. Its definitely OK to say and emphasize that you are in pain, and yet do not think a surergy, etc is in your best interest and ask for other options. If your current doctor does not like it or treats you with disrespect, keep searching for another one. I'm on my 3 rd pain management dr. As for my personal experiences.... Most of my physicians have heard of CRPS/RSD. The problem is, almost all of them have different opinions of "how" to best treat it. (My neuro-- who doesn't treat my CRPS/RSD is currently at odds with my PM who does ![]() ![]() Also remember that each person's experience with RSD/CRPS is different. The RSD/CRPS in my pelvis/abdomen was "triggered" by surgery, however I've had RSD/CRPS in my legs for years, that went undiagnosed until recently. Hence, it has started to effect my internal organs and body systems. So, in addition to the neurologic and pain aspect of it, I have an autoimmune component to it. When one thing gets triggered, it sets of a chain reaction (example: when I have lack of sleep due to pain, the lack of sleep causes increased seizures, etc or when I get sick, it cause a huge in my pelvic RSD, triggering bladder issues, etc) and it gets to be a vicious cycle that somehow has to be broken. Getting doctors to understand that has been my one of biggest challenges (vs playing the "well, its the other specialists issue" ). Hang in there ! L2L |
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"Thanks for this!" says: | AintSoBad (09-27-2009), dreambeliever128 (09-26-2009), hope4thebest (09-26-2009), loretta (09-26-2009), SandyS (10-02-2009) |
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