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

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rumblefish7194

06/02/2021 at 5:38 AM

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

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Courtney_J

Community manager

06/03/2021 at 12:31 AM

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Courtney_J

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Last activity on 08/08/2022 at 11:09 AM

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1,340 comments posted | 5 in the Living with dystonia group

6 of their responses were helpful to members

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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?
@mongoose‍ @Nick_Hodo‍ @Lmb278‍ @Healthy2b‍ @mimoon‍ @Rav966‍ @Sunbeam‍ @madalena‍ @Jaytwothree‍ @betsyns‍ @Buggsme‍ @Zozime‍ @Phoenix28‍ @DAZielinski‍ @dystonialisa22‍ @rex2748‍ @Scuba158‍ @sweb55‍ @Juliagriffin‍

Feel free to share with us here!

Take care,
Courtney

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Courtney_J, Community Manager, Carenity US

Do your doctors or other people take your dystonia pain seriously? https://www.carenity.us/forum/other-discussions/living-with-focal-dystonia/dystonia-exhaustion-pain-med-3401 2021-06-03 00:31:45

betsyns

06/03/2021 at 3:56 AM

betsyns

Last activity on 06/26/2021 at 7:21 PM

Joined in 2019

1 comment posted | 1 in the Living with dystonia group

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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.

Do your doctors or other people take your dystonia pain seriously? https://www.carenity.us/forum/other-discussions/living-with-focal-dystonia/dystonia-exhaustion-pain-med-3401 2021-06-03 03:56:49

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

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