Do your doctors or other people take your dystonia pain seriously?
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rumblefish7194
rumblefish7194
Last activity on 06/02/2021 at 5:12 AM
Joined in 2021
2 comments posted | 2 in the Living with dystonia group
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Hello one and all. I've had dystonia since 2007 - secondary since it was from a Brian injury. My dystonia is cervical, axial, right arm etc
I live my life now 50 percent of the time in bed. I am tried all the time. If I do go out and do something. I'm back in bed.
On a lucky week I can play tennis 2 x a week but that's it.
I am now seeing a pain doctor. He doesn't think dystonia is painful. But it's been years now. I know it's not looked up on highly.
But don't people from dystonia need to take some pain medication? When I'm in bed half of my life it seems like it makes sense.
I've tried for years to not take pain meds. But now I have a great girlfriend. Who comes over and finds me in bed with sunken eyes and not able to do anything.
My doctor doesn't understand. I don't know how to tell him the pain I'm in