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Dystonia Society
356 members125 posts

My story

Hi everyone, I have a diagnosis of cervical Dystonia and also rheumatoid arthritis. I work part time and my work colleagues are great. All my family live very close and help/support me loads. I try to stay positive and enjoy trips away. I do have a lot of pain in my neck and shoulders, I have Botox every 10 weeks which helps but my nurse said she has to gradually up the dose so hopefully will soon get much more bearable. I too need to rest when I can otherwise everything flares up, I try not to let it get me down too much. I find having to explain it is tiring and I do get quite embarrassed when my head pulls/ spasms . I struggled for 3 years before I was diagnosed and that was only after I had researched my symptoms I came across an interview with Derek Thomson (played Charlie in Casualty) and it was exactly what I was going through, I mentioned it many times to my rheumatologist and they just kept saying it was my RA, I insisted on being referred and I think they agreed just to prove me wrong, well I was right, thank god I came across that interview so I could get the treatment I needed. Well that's my story, so glad I will be able to share with others. X

2 Replies

Hello Sharlynn welcome to the site, it is rather a new site so not too many posts, but seems to be a very supportive one. I have only been posting on this site a short while,

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Hi Sharlyn and welcome,

I also live with RA and dystonia (blepharospasm) and I find my dystonia by far the more difficult of the two conditions to live with.

All the best


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