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dystonia or fibro

16 Replies

Im beginning to wonder my mums got dystonia and my symptoms are getting worse Im beginning to think I may well have it also

16 Replies
LindseyMid profile image
LindseyMid

Mention it to your GP and maybe get a referral to neurology. There is no reason why someone with Fibro couldn't also have Dystonia.

gracies-faces profile image
gracies-faces

As you may've read in response to your other question today (RE: aspartame) I had temporary dystonia 9 years ago.

I didn't know it was temporary at the time, though. It was during a time when I was suffering from a prolonged post viral illness that went on for the best part of a year and lurched from one thing to another.

With hindsight, I now know this is all linked to my fibromyalgia and understand it went undiagnosed for years and years, despite begging for tests for years.

I'd be interested to see if there's a link.

jazher profile image
jazher

What is dystonia? xxxxxxx

in reply tojazher

lol glad you asked i didnt know either that was gonna be my question lol so what is it????? sorry not thick never heard of it love diddle x

gracies-faces profile image
gracies-faces

If I remember rightly (and please correct me if I'm out of touch) it's a neurological condition. It causes the muscles in your body to spasm uncontrollably and/or stay locked in a position for indefinite periods of time. I also understand everyone's experience is unique to them, for example, my neck would go into spasm and shake my neck (as if I was indicating "no") for hours on end and it was so exhausting. Other times my neck would lock facing to the side and my face would slope down on one side. It was as if I was a string puppet.

I have seen stuff on TV where some people's muscles lock for months or years.

I considered myself very lucky.

dystonia.org.uk/ my mums got cervical dystonia as my muscles now are always in contraction, Im wondering if thats what happened to my little finger as well,

jazher profile image
jazher in reply to

Thankyou i have never heard of it before.

I cant turn my neck to the right and its not because of pain, its strange.

Also the writers cramp i get all the time.

Think i will mention this to my doctor.

kel xxx

LindseyMid profile image
LindseyMid in reply to

More info on Dystonia:

nhs.uk/Conditions/Dystonia/...

oh that sounds awful my muscles twitch and also i do get locked in positions but i very slowly un lock myself a joint at a time is this the same/ it sounds more severe the one your talking about love to you and thankyou for answering whatit is love diddle x

I had a little doze earlier when I woke I just couldnt move I felt like Id been run over by a bus, my necks being pulled over to my shoulder, in the last few weeks my finger are bent, Im just goiing to mention to gp next week

Sarah-Jane profile image
Sarah-Jane in reply to

Lally, ask about trigger finger too.

lyn-elliott profile image
lyn-elliott

i also get spasms in my muscles i told my gp about it and he gave it a name but i havnt got a clue what he said its really painful when this happens but i can slowly release them i also get my muscles twitching i thorght it was fibro but i might have to go to the gp and ask aout this its so difficult to remember what i ant to ask him even writing a list doesnt always help lol

LindseyMid profile image
LindseyMid

Myofascial pain and restrictions can cause dystonic-like symptoms, with muscle spasms and tightness, muscle weakness and pain. And myofascial pain is very common in people with Fibro. But you wouldn't expect to see the severe repetitive muscular contractions typical of Dystonia. Myofascial Release has been known to help Dystonia sufferers though - the myofascial release therapist I see did some research work on MFR as a treatment for Dystonia.

lyn-elliott profile image
lyn-elliott

thankyou lyndseymid that is good to no i didnt thik it sounded as severe but untill reading this blog i didnt no what dystonia was either but i find that reflected in life my son was born with right sided hemi-plegia and when i had him it seemed that so many ppl i met had got a child with the sameillness it was like that when i got fibro it may just be were more aware of the outward signs shown

my mums quite disabled she had cervical dystonia so her mouth goes into spasms she and a lot of her family have alot of neuro problems, ie vocal cord paralysis, tremors shakes etc

kavqc profile image
kavqc

i have dystonia as well as fibro it was controlled with medication ask your gp for a referral to nuerology

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