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Myoclonus and fibromyalgia

Lizzy_G profile image
13 Replies

Hello fibro peeps

I would be interested to know if anyone experiences a succession of muscle group spasms or seizures with each spasm feeling like part of your body gets an electric like shock for a second or two. I searched on the web and apparently this is called myoclonus or myoclonic seizures

It seems quite scary to me but it's been happening to me for months!! It usually starts when I'm resting and it can occur in any part of my body

I would really like to find out if this is associated with fibromyalgia which I was diagnosed with in January after being very ill and mostly housebound for 7 months previous

Hope this will help me and many others

Julie :)

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Lizzy_G profile image
Lizzy_G
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13 Replies
Fibrofoggiest profile image
Fibrofoggiest

Hi Julie,

Yes, I get lots of muscle spasms and the electric shock like sensations which you suffer from, so you have my very deepest understanding and sympathy. Like you they occur randomly. I now use a combination of diazepam and oramorph to help release the spasm. However, I'm not sure about the link with fibro, but will find out when I see my GP on Thursday.

Sending lots of positive healing vibes your way 😀😀

Foggy x

Lizzy_G profile image
Lizzy_G in reply to Fibrofoggiest

Hi Foggy :)

Thanks for your reply, I really appreciate it

I find it really weird having so many symptoms as I'm sure you do!! It's difficult to desperate off each one as I have tried to google most of the strange ones haha and as I'm sure most fibro sufferers will find, I end up thinking I've been wrongly diagnosed because I've clicked on too many links!!!

I do find the spasms very disturbing at times though so if your GP does give you any advice I'd be very interested to know

Thanks for your kind words and big hugs

Julie :)

Aurorasparkle profile image
Aurorasparkle

Hi Julie

I had sow thing like this last yr. I was hospitalised briefly with it. It turned out to be an allergy to an antipressant effexor/venlafaxine

Hope this helps.

Have you been ref to a nuerologist?

Xx

TheAuthor profile image
TheAuthor

Hi Lizzy_G

I am so sorry to read that you are suffering with this problem, and I sincerely hope that you can find the answers that you so desperately desire and deserve. I have pasted you a link below to the National Institute of Neurological Disorders:

ninds.nih.gov/disorders/myo...

I have suffered with this issue myself, and judging from the excerpt below it is a possibility that it can be a part of your Fibro as it is associated with a number of neurological and nervous system disorders.

Excerpt from National Institute of Neurological Disorders

Myoclonic jerking may develop in people with multiple sclerosis, Parkinson's disease, Alzheimer's disease, or Creutzfeldt-Jakob disease. Myoclonic jerks commonly occur in persons with epilepsy, a disorder in which the electrical activity in the brain becomes disordered and leads to seizures. Myoclonus may develop in response to infection, head or spinal cord injury, stroke, brain tumors, kidney or liver failure, lipid storage disease, chemical or drug poisoning, or other disorders. It can occur by itself, but most often it is one of several symptoms associated with a wide variety of nervous system disorders.

I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

nadine111 profile image
nadine111

hi julie,

i get muscle spasms that feel like electric shocks, too. seems to happen when my eyes are closed before falling asleep for a nap or at night time but also have them sometimes when having acupuncture. can feel the needles shaking. can be very freaky experience. when have an "episode" while my husband is with me he still can't get use to my body behaving in that manor that i can not control. have noticed that sometimes, sometimes i am a bit more relaxed afterward. anyone have same experience?

budgiefriend profile image
budgiefriend in reply to nadine111

Yes, what you describe is like mine. I get the shaking and jerking, and sometimes it continues off and on for a whole day or several hours. Sometimes afterward, I feel relaxed and less pain. I notice that it happens quite often when I have

a) pushed through pain or extreme fatigue to do something like get a sandwich for my lunch or go to the toilet, instead of staying in bed. or,

b) had severe pain for many, many hours without any letup.

I find that after these severe bouts, I tend to have a less painful day the following day. That makes me wonder if some of the shaking and jerking is the body's attempt to deal with the stress of muscle pain and fatigue.

Or could it be related to the fight or flight response being possibly stirred into action by extreme pain and pushing through fatigue.

I would really like to know if there are some Fibromyalgia experts who have opinions on these possibilities.

bluejeans16 profile image
bluejeans16

Sometimes my legs will start moving about when I am in bed it is like I am having a convulsion while i am awake.This is a new thing. I also suffer from muscle spasms but don't think mine are linked as I have suffered from them for years

agtf1 profile image
agtf1

Hi, I experience the muscle spasms & electric shock feelings too. My GP, a rheumatologist & a neuro have put them down to Fibro.

I have seen a lot of posts where people have been diagnosed with different things as well a Fibro when they get a new symptom, my GP just says "yup that's the Fibro" and that's that 😕.

Good luck when you see your GP. Hope they can give you some relief/answers x

barbarabarker profile image
barbarabarker

I am a 67 year old female. I was diagnosed with fibromyalgia 17 years ago. As a child I sometimes when very tired and sitting down my legs would jump slightly. Even before my fibro diagnosis I began to get restless legs and some slight jerking of legs occasionally when in bed. Now I am frequently prevented from getting to sleep because of severe jerks from the waist down as well as RLS when I have to keep moving my legs to relieve the peculiar feeling. I have to get out of bed and return later. Sometimes this works, but not always.(I also have insomnia )

Reading around the subject indicates it is quite common with fibromyalgia.

Kaleidobrain profile image
Kaleidobrain

This is very interesting, from another Julie..I posted about this very thing tonight.. How are you doing now? Better I hope. x

Justkeepgoing1 profile image
Justkeepgoing1

I'm getting jerks all day long, I wake up having them too. From little ones to huge, I can have about 40 in one minute and its usually all day long, in my torso, fingers, legs lower back arms its exhausting :-(

CH1969 profile image
CH1969

Yes i have this. Happens mostly at night time but also throughout the day. My doctor put me on Ropinerole 1mg tabs. It has seemed to help quite a bit.😊

fredsmummy profile image
fredsmummy

Hi lizzy, just came across your post now as was doing a little bit of digging! I was originally diagnosed with FND but I have partial seizures:, all neurological and now diagnosed with fibromyalgia. So just wondered if you had any more info on this. Originally they thought I was having a stroke (spasm) but that was very different to the partial seizures I now have

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