- Home
- Share
- Forum
- Dystonia Forum
- Treatments for dystonia
- How do you manage the pain caused by your dystonia?
Patients Dystonia
How do you manage the pain caused by your dystonia?
- 10 views
- 0 support
- 1 comment
All comments
Courtney_J
Community managerGood advisor
Courtney_J
Community manager
Last activity on 08/08/2022 at 11:09 AM
Joined in 2020
1,340 comments posted | 5 in the Dystonia Forum
6 of their responses were helpful to members
Rewards
-
Good Advisor
-
Contributor
-
Messenger
-
Explorer
-
Friend
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
See the signature
Courtney_J, Community Manager, Carenity US
Give your opinion
Members are also commenting on...
Articles to discover...
10/25/2018 | News
Half Of Women At Risk Of Dementia, Parkinson's, Stroke: Study
09/21/2018 | News
11/04/2024 | News
10/21/2024 | News
Common health issues in pregnant women: Everything you need to know!
10/19/2024 | Nutrition
Turmeric: The golden source of anti-inflammatory and antioxidant benefits
10/12/2024 | News
09/28/2024 | Advice
Subscribe
You wish to be notified of new comments
You have been subscribed
rumblefish7194
rumblefish7194
Last activity on 06/02/2021 at 5:12 AM
Joined in 2021
2 comments posted | 2 in the Dystonia Forum
Rewards
Messenger
Explorer
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?