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anybody with FM get muscle twitches (fasciculations)?

Posted , 13 users are following.

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Guest

Hi, I've only been posting on these boards for a week or so. Thanks for the opportunity to ask a question.

This is mainly for people who already have a fibromyalgia diagnosis and don't have any other known conditions that could be causing symptoms.

First, a bit about me. I've been healthy all my life, with very little to complain about. I went through a very rough time earlier this year, with chronic stress, a major loss, and decreased nutrition and sleep. About 6 months ago I started having pain all over, often for no good reason, and sometimes the pain came and went. It was in muscles, joints, and felt like it was running up and down my arms and legs. My feet became sensitive and painful, so that after standing for just a few seconds, I had to sit back down... but then my butt got sore from sitting, and so on. I also stopped being able to sleep well, my heart rate went up, my mood went down, my memory and concentration got impaired, I felt clumsy, I lost weight despite eating very well, I got heart palpitations, bladder symptoms, IBS, muscle twitches all over, and I was extremely fatigued from the smallest things like brushing my teeth. The ER found nothing wrong with my heart, but their limited tests didn't do much to reassure me. My GP brushed me off for the most part. A neurologist did an EMG (needle probe in my muscles) and noted the muscle twitches but said he saw no evidence of neurological disorder. He told me to get my stress level down. Ironically, that stressed me out, as I could tell SOMETHING was wrong, and everybody was just telling me to chill out.

As far as bloodwork, my thyroid is putting out a fair bit of T3 and T4, and my TSH is low but not low enough for a diagnosis. My TPOab is about 10 (despite being on a gluten-free diet). My blood sugar and cholesterol tends to be on the high side, perhaps pre-diabetes, but also not enough for diagnosis. Electrolytes are normal, red blood cells are a bit down, and there was no evidence of antibodies indicating lupus, Sjorgens, or connective tissue diseases. My B12 is normal. I'm negative for H Pylori, Lyme, Hep, and a few other nasty bugs.

Without much help from doctors, I've done a lot of research. I take Magnesium citrate and vitamins B, C, and D. I use acetaminiphen and ibuprofen for pain relief, just enough to take the edge off. Ashwaganda root powder before bed helps me sleep, and it's good for overall stress levels as well. I get a little bit of moderate exercise every day, careful not to push it, or I end up in worse pain and have to take a couple days to recover. My diet has improved greatly. I'm vegan (plus free range eggs), almost totally organic, gluten-free, and very little processed food or sugar.

I'm a little better than I was at the worst point, which was July and August. I need a little less pain meds, I'm sleeping a bit more at night, my energy level is quite improved (but still not normal), my mood is better, and my heart rate isn't as fast. I'm slowly gaining a little bit of the weight back. I still have some fatigue, some trouble sleeping, some anxiety, some bladder symptoms, some brain fog, and the muscle twitches continue unchanged.

My question is about muscle twitches (fasciculations). Do you also get them, and if so, what are they like? Mine are quick contractions of just part of a muscle, and can happen anywhere on my body. Anywhere I could contract a muscle voluntarily, a twitch can happen there. Some places seem to be "favourites" (like calves, under my eyes, shoulders) but they all end up twitching at some point. Sometimes they'll be quiet for a few minutes, sometimes I have about 1 per second. Sometimes the same muscle will repeat for a few minutes (or hours), other times it's totally random and spread out. They SEEM to be a little worse when I'm more stressed out or tired, but it's hard to be certain. Sometimes they're large and pronounced, other times they're smaller and faster, like a vibration. When in my fingers or thumb, they often come across as a hand tremor, which is unpleasant. Sometimes they keep me up, or wake me up too early.

I've read fasciculations are a part of Fibromyalgia, and I've also read that they aren't. In the absense of quality medical attention, or even a confirmed diagnosis, I'm left wondering if I've got FM, or something else (like a neurological disorder).

If you have FM, and nothing else that would cause fasciculations, could you please tell me about them?

Thank you! smile

0 likes, 17 replies

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  • katishma
    katishma Guest

    Edited

    I take a muscle relaxer to help with the spasms.

    Some last just a minute while others up to an hour before gone completely.

    Started out with my toes. Now they hit anywhere.

    With the meds they aren't as frequent and severe as had been.

    • Guest
      Guest katishma

      Posted

      Thanks, katishma.

      How long have they been happening, and did they begin at the same time as your other Fibromyalgia symptoms? Does the muscle relaxant have side effects for you?

    • linda54686
      linda54686 Guest

      Edited

      Hi there drutterm..Well most of your post sounded as though it was me! Im 58 female always so active and never sit still but all this scared me so much ive slowed down a lot more..being a single mum with a home and big garden to keep going has kept me fit..suddenly 15 months ago i suddenly felt anxious and depressed out of the blue i went to the gym (first time)to try lift this feeling and went bit mad on a few excersize mmachines..the next day fasciculations started in my calves..that absolutely terrified me..and still does..about 4 wks later pains so bad in arms started couldnt hold shopping or anything even a pan without pain. My legs felt like jelly when i walked i kept sitting ddown..anxiety went through the roof.i googled 24/7 almost..the pain then started in my top thighs and hamstrings..still the twitching carried on daily mostly mornings in bed when still.. had many cleared blood tests. See 2 rhumatologists clear reports..see 4 neurologist all clear..had clear emg on arms... (they didnt do legs!)all clear spine mri clear..had odd buzzing sensations in legs now and then and felt shakey when tried stretches.. Searched for answers to what is going on..nothing.....they said kind of fibro pain...but i sleep well have no pain during night and no brain fog!.. had many pain killers all made me feel zoned out so tried manage the pain with just paracetamol (alergic to ibuprofen) still no answers.. suddenly 5 months later arm pain went ! though muscles slightly tender still and odd little aches in muscles and fingers now and again but not much.. pain in hamstrings was really bad and glutes awful..odd burning pain front thighs... i then did foam rolling on my legs revently which seems to of helped but really tender when pushed a bit.. i massage my legs with oil that seems to of almost cured glute pain as sitting on a seat for long or driving even with a pillow was awful... i now take 10mg amatriptyline at nite which is helping a lot (i want to be pill and pain free tho as you all do) and apart from odd pains like i been shot with a paintball gun which can be in an arm one minute then to a leg another sometimes its not so bad.... massaging oil im my calves eases the fasciculations off..though when i get anxious about all this it gets worse..i have random twitches now not too much.. my muscles are all still tender on any pressure... i have no inflammation in blood tests.. and still no tiredness....s this fibro..i dont know..it worries the hell out of me tho but no neurological diseases i have been told.. ive slowed my life down ..and i get up every day thinking i want it all to go away...it is easier but it still scares me.. i have had terrible upset and stress just before this started with 2 very ill ddaughters..maybe that kicked it off also a gallbladder removal the same time i dont know.. i eat healthy too ...
    • Guest
      Guest linda54686

      Posted

      Thanks linda, nice to meet you.

      You're right, our stories have some similiarities! By the way, I'm an avid gardener as well. I had to take this year completely off, in order to deal with my health, something I've never had to do before. I miss my plants!

      It sounds like you've found a few things that are working for you, in terms of bringing your pain level down. Paracetamol is a pretty effective and reasonably safe treatment for mild and moderate pain, we just have to be careful about long term use (liver etc). I use it regularly, but only enough to keep the pain level down where I can mostly ignore it - about 3 per day, and a couple ibuprofen. Foam rolling sounds good, I think any type of gentle stretching or aerobic exercise (even walking, or wading in a pool) is great. It seems the key is to stay active, even if it hurts, but not to overdo it. People with Fibro who stay in bed or sitting all day every day tend to get into even worse pain and fatigue. So do what you can, and learn your tolerance for exercise. It's an adjustment. I'm in my early 40s and was reliant on being strong and active to get things accomplished, so it has been interesting. Massage is good for some. For me it doesn't seem to do much. I feel like the pain is coming from my nerves and/or brain, not necessarily the muscles themselves, so rubbing them feels nice and relaxes them but doesn't stop the pain.

      Fibro is VERY often triggered by stressful life events, pregnancies, or surgeries. Mine was the former. Sounds like you had that PLUS a surgery? That's definitely enough to trigger it in somebody succeptible. You've got at least some weakness, fatigue, depression, anxiety, and pain... these are all the hallmarks of Fibromyalgia. The only really major one that normally comes with it that you don't have, is insomnia, but that's a blessing! Losing sleep because of all the other stuff really doesn't help - in fact it makes everything else worse and contributes to the vicious cycle.

      What do you mean by "eat healthy", if you don't mind me asking? I've found a plant-based diet without gluten is really helping me. My pain levels went down when I got off gluten a month ago, and continue to slowly fade. I wish the fasciculations would go along with the pain, but any improvement is very welcome. My guts are a lot happier, too.

      I hope this helps a little, maybe provides some ideas to research and think about, and reassures you a little as well. I obviously can't say one way or the other from here, but what you said sure sounds a lot like Fibromyalgia to me. It's not a wonderful condition, of course, but it's far better than most of the nasty neurological conditions that you and I have both been looking into and dreading. The buzzing, twitching, shakiness, weakness.... it can be so scary. Not having control of your own body, very suddenly, is really frightening. I'm only just starting to be able to relax, and I think that's actually what's making a lot of the difference. That, and learning all I can about FM. I keep telling myself: if I've got MS or something like that, I'll find out in time and there's nothing to be done about it right now anyway, other than try not to stress out, eat well, and stay as healthy as I can. If I don't, well then, all the better.

      Side note, I was seen by an internist today after a long wait, and after reviewing my chart, assessing me, and asking me my history, he says he believes I've got fibrymyalgia (and PTSD). He wants me to keep doing what I'm doing, and hopefully get some supportive counselling, and thinks I'll continue to see improvements. I hope you're able to find relief soon, perhaps in the form of a medical professional who understands Fibro and can identify it, if that's indeed what's going on with you.

      All the best to you and all the other Fibro people here smile

    • katishma
      katishma Guest

      Posted

      Didn't realize it at the time

      The GP had at the time just said pulled muscle.

      All those times it was the fibro.

      Took getting costocondriuts for anyone to figure out what all my problems was from.

      The muscle relaxer am on claims may cause drowsiness but never has bothered me. Am on a low dose twice a day.

  • jeanne81532
    jeanne81532 Guest

    Edited

    Hi drutter yes I get muscle twitches in various places. The weirdest for me are in my abdominal muscles, and are really big twitches which remind me a bit of 'baby movement'. Others can be in arms, legs, face. Hope you get a diagnosis soon, it does sound very much like fibro. x

  • azzarh
    azzarh Guest

    Posted

    I was diagnosed a few weeks ago after years of apathy for my GP,s.

    One of the most surprising aspects to my experience is realising that something you've suffered for so long has become so normal you don't associate it with anything.

    I've had muscle spasms exactly the way you have discribed for so long I can't remember when I didn't get them. I now wonder if it's the Fibro or just an unrelated thing??

    If it is connected to the Fibro, I estimate I've had it for at least 20 years, which would coincide with a traffic accident in which I suffered whiplash injuries .

    I am convinced that accident was the trigger to all the later symptoms I have with the Fibro!

    Good luck and I hope you find the answers you are looking for.

  • Faith2016
    Faith2016 Guest

    Edited

    Yes I actually started twitching before I had any other Fibro symptoms. I have been diagnosed but I have also read a lot about BFS, which is surprisingly very similar to Fibro. I have also heard some doctors believe they fall under the same spectrum which is why so many of the symptoms overlap. I honestly think I have both!
  • kiki74
    kiki74 Guest

    Posted

    I too started with the twitching before other fibro symptoms hit. Often when I was streseed. Last for a few seconds/minutes and then stop. But when they were still in the process of diagnosing me my thumb twitched for 3 days. Drove me crazy! Of course it was a holiday wkend and the doctor's office was closed. At least my family saw it,so they knew I wasn't crazy.

  • ihavenonickname
    ihavenonickname Guest

    Posted

    My fasiciculations seem to be related to lack of rest a lack of hydration

    kind regards

  • jacob80633
    jacob80633 Guest

    Posted

    Hi Guest,

    I have been experiencing similar symptoms to what you had mentioned and was curious to find out how you were getting on? and your outcome to your symptoms?

    kind regards Jacob

  • jade68713
    jade68713 Guest

    Edited

    Wow! its so comforting that I found this thread, word for word it was like reading my journey. Ive been healthy up until this year when I hit 36 years old I had a traumatic year, mother died, dad got cancer, lots of family members diagnosed with cancer, and Covid. I was severely stressed and then developed over all body pain, heart palpitations, lightheadedness and severe muscle stiffness, I also wasn't sleeping etc sometimes i can wake up and it will feel like my body is trembling, so weird. The pain started in mid spine as a sharp pain, then quickly spread to feet, hands then all over body pain. My muscles hurt so badly that it was difficult to even roll in bed. The mornings are rough, lots of stiffness. It is a joint pain AND all over muscle pain. I also developed severe anxiety to the point that I could not run meetings anymore for work. I am active and horseback ride, but at one point i couldnt lift my saddle or have the energy to ride . If I did push myself then i was sore for a full week. I went down the road of Lyme disease, got treatment but still sore and living on ibuprofen and tylenol for a while. It has been about 6-7 months since my severe symptoms started. I'm improving slightly enough as to where i don't require tons of pain meds anymore ( but i know something is still not right)sleeping better too after two months of Trazodone (weaned myself off now), but now i have developed body wide twitches arms, calves, butt, left eye, and fingers for over a month going on two months. Sometimes they are so powerful they wake me up, hence why i am writing this at 4am . Taking magnesium, vitamin B and D, plus potassium with no improvement. I saw two rheumatologist, clear MRI of spine but i do have a positive ANA which is low (i guess lots of people have a low ANA with no symptoms) which are referring me to a nerve specialist. I also keep smelling cigarette smoke randomly and my hand can get pretty clumsy too which is weird. They ran additional blood work yesterday, more ANA stuff, just waiting on results . The twitching is soooo annoying. Did they ever find out what was causing yours? I also read that they are a symptom of FM. Other than a slight positive ANA the other bloodwork seems fine for inflammation markers. I am not one that likes to take medication so trying to get to the root cause and not just treating the symptoms. Unfortunately high blood pressure runs in my family so i am on Lisinopril. Also, side note that i have too gone gluten free for almost two months now and incorporating fasting to help with my imaginary inflammation symptoms lol. Please let me know how your journey is going . i could use a friend right now 😃

    • LoobyM
      LoobyM jade68713

      Edited

      Hi Jade 68713, have you had your test results back? I sent you a PM but not sure if you got it?

  • Ti2grr
    Ti2grr Guest

    Edited

    As like others have posted saying your words were spoken as if they were our own. I am sitting here currently having such bad fasciculations that my toes start jerking then foot calf thigh primarily on right side or should i say more pronounced on right side. i have bad days where they hit abdomen sometimes folding me over then chest tightness difficulty breathing and then shoulder neck and back spasms end result often times headaches

    • LoobyM
      LoobyM Ti2grr

      Posted

      @ti2grr have you been to see you GP?

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