Fibromyalgia Action UK
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These symptoms are getting scary now, wat bout you???

hi every1 just wondering if any1 else had any of same syptoms as myself. When i first got taken into hospital about 8 years ago i collasped at work with symptoms of a stroke, my left side had gone completely numb shaking no feelin anything. Docs where comin to me stickin pins down my legs n feet i couldnt feel a thing!!! after all this poking about the finally told my it was Hemiplygic Maigrains. so ive been on medication for all this time for this condition.Inbetween ive been hospitalised several times with same symptoms and differant doctors telling me differant things!!!! After finally being diaognosed with our wonderfull friend Fibro & given over 100 tablets a week plus morphine patch....all of these which do absolutely nothing for me ive been told it never was this miagrain problem its conected to Fibro. These last few weeks ive had times where i can just be sittin & my legs will start shakin for no reason my fingers feel like there swollen as do my ankles and thursday just gone i was just layin with my partner he was sittin on settee n i was layin down (he was ticklin my back, love that) and all of a sudden my head started shaking he said my eyes went vacant i just looked straight thro him n i was just out of control with the shaking. This is now gettin more frequant and very scary, the doc said its all connected to the Fibro n theres not a lot he can do!!!. Is there please any1 else out there who is having any of these experiances???. The tablets im on are Amitriptyline, dloxetine,diclofenac. plus others for other things xxxx please help xxx

11 Replies

I would go and see another doctor, or better still, write to the Practice Manager and explain that you would like to have further tests done for anything that may cause seizures as you experiencing them more frequently now and your partner has witnessed it, and your GP is not taking these seizures seriously and you desperately need to get to the bottom of what is happening to you.

Silky x


Please be careful using certain expressions like seizures because we don't in fact know for sure that these episodes are seizures. They may indeed be tremors or shakes relating to Fibro, we don't want to worry anyone unnecessarily.

The advice given was to see a GP as soon as possible and ask for a referral to either a Rheumatologist or a Neurologist for further examination and treatment, also a review of medications.


I'm agreeing with Silky, it sounds more like seizures than a fibro thing.

Having said that I found Amitriptyline made me shake like I was fitting. My parents took me to the hospital the first time it happened. I was fully concious though so still get it checked.

Hope you get to see someone who can help and get this horrible symptom to go away. All the best



Akasha please see above reply regarding using the expression "seizures". Thank you.


hi hun,i think once we have been diagnosed with fibro,everything we have after that docs seem to say ,,oh thats the fibro! i told my doctor...bloody nora if i came in and said my left leg went black and fell off you would say,..oh yes its the fibro! now he treats things separate..i now have thyroid problems found out because i asked for my blood to be tested for thyroid[i have regular checks for my blood count,wasnt telling him his job!!] when they came back and my levels were very low,...wait for it!!...................he said when we get your levels right all your other symptoms eg pain fatigue weight gain migrain etc should clear up!!! i laughed my head off,i said oh so i havent got RA and fibromyalgia then?..oh no you still have them! so the motto of this is dont be fobbed off by thinking everything is down to fibro..xxxx


Hello there, it's not unusual to have involuntary movements in your arms and legs or any part of your body with Fibro, also what I call the judders, suddenly kicking out for example. It sounds like your shaking is more constant though which also is a symptom - tremors.

If you click on the link it will take you to an NHS site where it describes symptoms of Fibro, amongst them are tremors, shaking etc.

I can understand you worrying about this, I would suggest that you see your GP and I am sure this will result in a referral to either a Rheumatologist or a Neurologist. If you don't get a referral, perhaps ask for one. Then hopefully you would be fully examined, and given the appropriate medication. Of course if you have an understanding GP this helps enormously as they may then be able to help you.

Try not to worry, see your GP and take it a step at a time. We are all here for you, so please feel free to contact us at any time. Wishing you all the best, here's a hug for you. :)


Arr Thank you everyone for your support. I had to go doctors last week because i couldnt walk with back pain, i get back pain anyway but its never been that bad! like you say once you tell anybody your on lots of medication for fibro thats it we put that stone in there heads n bang.... Oh yes its all connected to your fibro!!!! Wen i win the lottery im going private after all thats the big problem they wont send us for the specialist tests because they cost to much turn we just have to live with this ba"^*d of a condition. Thank you everyone. Sending gentle hugs all the way xxxx


In my opinion seeking another Dr if there is one in this practice if not write to practice manager. (as mentioned)

have you ever been to Rheumotoloty or been to see a Neurologist?

I have had many shaky moments with my legs and also staring too and it scares my kids, but it goes.

I had to go through so much before answers its difficult and not everything relates to one condition as i found with this silly tendonitis Dr said not connected building fluid up. but keep an eye on it.

some times we feel we tell our Dr's or they ask what would we like.

There is many conditions that mimic others and you can not ever say 'it is' on here really unless you are a Medical profession but you should have to see a Gp to be physically examined 1st anyway and they have to rule out other things.

MRI can usually see what is going on in the brain.

Just like comments above some dr's can relate everything to fibro! sometimes you have to research as much as told to steer clear and ask blood tests.

each Dr is different in a lot of how they understand different things, some Dr's are great at dealing with Back problems so if i have a back problem i use certain ones.

hope you get sorted out soon.

thing is with fibro usually tests do come back negative and this generealy i believe is what gives diagnosis.

all the best xxxx


Ive had alsorts of scans fairycazzie and seen all sorts of people. Ive now been refered back to the Pain Management Clinic, again!!! I just seem to be goin round in circles and im be told nothing its so frustrating. I feel stuck in a nasty horrible circle....Im in pain All of the time which stops me doin stuff in turn makes me depressed, being depressed makes me anxious and in more pain and more depressed. Its not a good train to be on cause theres times when i want it to go full steam ahead and Bang into the wall then i wouldnt have to be dealing with all this stuff :-( Im really struggling coming to terms with this condition, like most of us on here ive gone from being a very strong independant woman to someone who just sits all day in pj's wanting to do stuff wanting to do all the stuff i could do before without suffering afterwards!!! Thanx again everyone carnt tell you how good it is just to come on here n say how i feel, the tears are streamin down as im typing...big soft hugs to you all xxx


Have you seen a neurologist recently (since this symptom was happening)? If not, it probably would be a good idea to get a referral for testing.

Medications can cause severe and worrying side effects, especially when many are used together at high doses. But whether these symptoms could be medications or another condition or related to Fibro, they must be checked out well.


Hi I've been having... Episodes very similar to seizures sorry I'm using that word but the other description would be fit, I even have drewl running down the side if my face involuntary muscle contractions unable to move ,,I have a big thirst come on ,, and when I can move I try to drink water but can't ,, I go down on the floor and then become cold ,, hands and feet are cold and sweaty ,, my colour drains from my face and then I start shaking ,, it's like muscle contractions . These have ended up in hospital visits. Awaiting to see a neurologist . Very scary,, don't know yet what's its related to,,,I even get an aura before hand . I know when it may come on,,,


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