Do your doctors or other people take your dystonia pain seriously?


Patients Dystonia

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Topic of the discussion

Posted on

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

Beginning of the discussion - 6/3/21

Do your doctors or other people take your dystonia pain seriously?

• Community manager
Posted on

Hello @rumblefish7194‍, thank you for opening this discussion and sharing what you've been going through. I'm sorry to hear that you haven't been getting the medication you need, it can be frustrating when you don't feel heard or taken seriously by your doctor. Let me tag some other members who can possibly share with you.

Hi all, how are you today? What do you think about rumblefish7194's situation? Do you feel like your doctor takes your pain concerns seriously? What about other people in your life? Do they understand your condition?

Feel free to share with us here!

Take care,

Do your doctors or other people take your dystonia pain seriously?

Posted on

I had to change my primary doctor just recently. She was horrible and didn’t listen to me much. I too felt ignored and betrayed. The new doctor I have now is excellent. He listened to everything I had to say about my Dystonia condition, the pain, etc. He has been really good about giving me the pain meds, etc that I need. As for others understanding my condition-I guess it really depends. There are family members/friends who seem to understand and often show empathy. Then, there are those others who choose to ignore or just avoid me altogether. 

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