Anyone experience Involuntary body jerks & tremors with Fibromyalgia?

I was diagnosed with Fibromyalgia in 2019, trialed many medications since and currently on Fluoxetine 20mg a day of which only gives me some relief.

I am on the referral waiting list to see a Neurologist since March 2022 as I have been experiencing all over body involuntary jerks,internal tremors and Restless Legs which are all worsening. I am unsure if this is a symptom of Fibromylagia however my Gp seems to thinks so. My blood test results are all normal apart from FBC with continuously come back elevated above the normal reference range and haemaglobin. I have been told I will not have a date any time soon to see Neurologist, quite possible a years wait or more so I am thinking of paying to go privately but before making that commitment as it’s not cheap I wondered if any fellow Fibromyalgia sufferers have/are having the same issues . Or comments to suggest a different cause with similar symptoms, Lupus and MS have been mentioned in the past. To add I also have Hashimotos hypothyroidism. Thank you in advance for any advice.

[desquinn Partner Volunteer FMAUK Trustee]

Restless Legs are common in people with fibro. Often people will use quinine or meds but it depends on the root cause. FBC being off could be anemia or something else for example and I am sure they would follow that up.

[Hazel_Angelstar Administrator FMA UK Staff]

I have restless legs syndrome - but it doesn't only affect my legs, like you say it can affect the whole body (hubby said I conduct an orchestra some nights)

However, while it may be connected to your fibro, there could also be other causes

[Colourpink66]

if you can afford it I would see a neurologist privately I was referred years ago for RLS for which I was prescribed ropinrole which I still take although not as much as they used to, plus you get treated so much better and give you some piece of mind , good luck

[Bar123ney]

hi I was diagnosed two years ago with fibro. But my husband has told me that I do seem to have a sort of tremor with my head although I have not been to doctor with this. I hope you get an appointment soon. Please let us know how you get on .

[Patdoyle]

I get tremors in my arms and hands. I waited 9 months to see a neurologist on the NHS and it was a telephone appointment. He said it was part of fibromyalgia and prescribed beta blockers which have helped. I saw a neurologist privately about 5 years ago. He ruled out MS and lupus. Cost me 300 for an hours consultation

[Missykay]

My body suddenly jerks muscles twitch when I am sitting on sofa it seem like the bottom moved like the ground in am earthquake very weird I don't know why it happens but feels very scary

[Makie-Uppie]

Yes, all the time, the funniest is when I prepared and then threw a salad at my youngest. Not only did it take me ages to do it but he did not look good in cucumber.

[Billyboy2216]

Hello I haven't been diagnosed as yet, waiting for appnt with Rheumatologist......I also have Hashimotos and on 300mcgs/day, Diabetes2 and have been on fluoxetine for years, its all getting worse, sleep is awful making work hard, either can't sleep or can't get enough it's a constant battle, getting really painful legs, hips, shoulders 😫 feel like crying someday's with all the pain, really sympathise with you x

[Nevergiveup123]

Hi I get this at night time I've always just put it down too my medacation especially the anatryptaline. I'm eager too here how you get on .Good luck x

[Hidden]

Hi Maynan17, sorry to hear this. I too suffer with involuntary movements. I do however have diabetic neuropathy and suffered a stroke two years ago as well as later being diagnosed with fibromyalgia. My limbs can spontaneously jerk and sometimes with some force. I sleep in a separate room from my boyfriend as I have a tendency to 'just kick out without warning'. It is quite often painful. I also have occasions where I feel like I am falling off the kerb and have fallen out of bed several times. I take nortryptaline having tried all the others (pregablin, duloxetine, amytriptaline etc etc) but nothing works for me. Magnesium cream gave me a little relief. You could try that when heading to bed. May be worth getting your magnesium levels checked.x

[Vivtom]

interesting.my wife has had four episodes of being violently jerked up in the middle of the night and finds herself jerked to a half sitting position.all very frightening.so far-can’t get anywhere with the surgery but will keep trying.she is on very heavy medication.