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Originally Posted by Jimking
lolo217, it is quite common for RSD to be misdiagnosed or doctors knowing what it is and dismissing the patient without ever mentioning it to them. It's a can of worms many lazy doctors do not want to deal with. My wife's journey with doctors is long. Treatment at some of the best hospitals netted nothing. Even a world renowned facility turned into a nightmare. She is now on SSDI and medicare.
Most doctors seem not except medicare and those that do seem to be the bottom of the barrel. She has often been treated as a drug seeker. I've seen it first hand because I go to all her appointments as her advocate. Overall her treatment in the US dealing with RSD, from 1-10 I'd give her treatment a 5. She no longer visits doctors, she is no longer taking narcotics because she is tired of being humiliated, but that is her way of dealing with a bad situation, not everyone would do this and shouldn't. My wife does not hold doctors up on a pedistal and never did, even before her RSD. She's very shy and feels great guilt because of what it has done to her and others around her. So, she has little tolerance of doctors who roll their eyes at her.
She is in pain daily without fail, but she says the narcotics did nothing for her pain so who needs them. She moves around, cooks, garden, cleans the house if she can, it may take a month but she manages while I'm working. But I will say in her early days of RSD those pain meds were very important, no doubt about it. The pain in those days was driving her crazy and I'm not kidding one bit. Over time she seems to be able to control and or tolerate the pain better by lowering her stress level, diet and moving about as much as she can and avoiding situations that can trigger flares. Her energy level is low, she can only walk about a block or two and that is about it. She is not overweight, she looks much younger than her 54 years, and sweats constantly. Heat hurts her, the weather hurts her, coffee she loves!  
We live in Virginia just outside of Washington DC. I hope everything works out for the better lolo217, don't let RSD control you, control it. |
lolo217, I'm sorry you have this monster disease! I can empathize with you, and with Jimking's wife. My hubby (and everyone I know) has a hard time understanding the pain and the exhaustion it causes. My hubby is a "fixer" and I know he hates that he can't fix this or take it away. I try to reassure him that I really don't wast him to fully understand because to truly understand you have to feel it for yourself...and I wouldn't wish this on my worst enemy.
I'm with Jimking's wife...I hate doctors. I always have, but even more so after a doctor literally screwed up my wrist/hand when he put the screw in the scaphoid bone wrong...which was the trauma that most likely caused the RSD. I took pain meds the first couple of years since I had to have three more surgeries (by a hand specialist) trying to salvage as much use as possible. I've never been big on medicine because most doesn't work for me, but I do believe you should take it if it helps and you don't have a high enough pain tolerance to function without it.
Back to your hubby... If he says he loves you, you have to try to not only believe it, but cherish it and him. He doesn't want you to hurt. He probably hates that he can't help you feel better. And he most likely can't stand to hear that is more likely to get worse than better. I'm preaching at myself here...but think about how you would feel if the roles were reversed and he were the one in this kind of pain constantly.
I hate to even think about it!! I'll keep you both in my prayers.