I have dystonia and I struggle with the way people look at me

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Patients Dystonia

I have dystonia and I struggle with the way people look at me


Posted on

I have spasmatic cervical dystonia also and have found that using CBD oil helps my spasms tremendously and my anxiety with the feeling of people staring at me- I use to feel like everyone was staring at me so I wouldn’t go to certain events. I’ve realized over time that I stress myself out at these events or outings by thinking everyone is staring at me but really they aren’t, maybe some are, but it’s like a cold sore on ur lip-u feel everyone is looking at it,if that makes sense. I’ve learned not to put myself in stressful situations and to keep negativity away- this def helps. Stress definitely makes everything worse. I go to acupuncture every week also for my jaw and neck and I sleep with a mouth guard for TMJ from the dystonia pain and it helps a lot! I also got to PT for cranial sacral therapy which is amazing!!! I have contemplated the Botox but am so afraid to get it! I have dysphagia in my throat already so I’m leary to try it. My pain is like a 5 everyday with some flare ups and some good days. You kind of get used to it I fell for me anyway. I don’t know my progression (has been 2 years thus far) but I’m hoping isn’t much more than it is now. I turn to the right - I stay positive and for neck exercises and try to constantly fight it . I made the decision that I won’t let it beat me.. 

I have dystonia and I struggle with the way people look at me


Posted on

@Jdsbruce I understand that feeling. It is hard because like you said - people mean well, but when I wake up - I am still waking with the same condition, same symptoms, same pain. 

How is having Cervical dystonia and MS? Does MS complicate things?

I have dystonia and I struggle with the way people look at me


Posted on

@Foxyfoxm Thank you for sharing. I think I wrote you in the other forum about your acupuncture. That is great the CBD helps with your anxiety. I know people say that I am feeling the stares, but most people are not really staring, but I don't know - I argue differently - I have actually seen people just stand there and stare and it drives me crazy, but I should not let it get to me.

I have dystonia and I struggle with the way people look at me


Posted on

Staring is inevitable and we can't change the stares we received. Try not to focus on it.

I have dystonia and I struggle with the way people look at me


Posted on

Yep, get stares.  The worst are on job interviews even when I explain I have neck spasms.  It's so freaking frustrating. πŸ˜”

I have dystonia and I struggle with the way people look at me


Posted on

@Dyston!a yes, MS complicates life in general. I'm on max oral dose of Baclofen, take 800mg Neurontin 4 x a day, take 100mg Provigil 2x a day to make it through work. I've got nothing left by time I get home...I'm just exhausted. 

I have dystonia and I struggle with the way people look at me

β€’ Community manager
Posted on

Hello everyone,

How are you doing? Have you seen this discussion?Β emoticon cute

Have you noticed how others react to your dystonia? Does it bother you? How do you handle it? Do you think there is enough education out there on dystonia and its symptoms?
@mvmentme‍ @SFoster‍ @tammysue2015‍ @BeckyS‍ @mamawho‍ @Tamiam‍ @maritootles‍ @Janine‍ @Tussie56‍ @JudyMcVay‍ @izisjewels‍ @donhop‍ @Powens‍ @Sunbeam‍ @madalena‍ @Jaytwothree‍ @betsyns‍ @Buggsme‍ 

Feel free to share your thoughts and experiences here!

Take care,
Courtney

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