How do you manage the pain caused by your dystonia?

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Patients Dystonia

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Posted on

Hello. I've had secondary dystonia since 2007 after a brain injury. I am so confused. I spend half of my life in bed. Before dystonia I was never in bed. I don't sleep. I'm in incredible pain. 

Botox didn't help, meds didn't help, 

My girlfriend will come over and visit me and I look like a different person. My eyes are sunk. My body is so uncomfortable and the pain is so bad I just evaporate. 

I've tried everything. I've been going to a pain management clinic for sometime but my doctor treats me like I have a sprained ankle. I don't want to be loaded on meds. But I want to be able to live. 

The one love I have left is being able to play tennis. even though I have walking issues I can still play tennis (since I played as a junior)  on a good week I can play two times a week.  

A few years ago I was able to play more but the dystonia / pain is to much

Do people with dystonia need pain medication so they can get out of bed and be active and try to be alive?

Beginning of the discussion - 6/3/21

How do you manage the pain caused by your dystonia?

• Community manager
Posted on

Hello again @rumblefish7194‍, thank you for starting this discussion thread. I'm sorry to hear about all the pain your in, it sounds like it's really taking a toll on your quality of life.

For our other members, do you experience significant pain from your dystonia? If so, how do you manage it? Do you take any medications for it? Can you recommend anything to rumblefish7194?
@Chelebelle321@pumpkin47@Goncalo@JudiBeyond@kimlee@neener99@russode@Gigicoughlin@CrystalGiles@Aprilmariejack@Cathymls@Cat0919@Mom23ms@Awatchman@Paula.Schmidt@trasaba1126@Bagohlke@Charlotte‍ 

Please don't hesitate to share any experiences or advice here, we're all here to support one another!

Take care,
Courtney

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