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I am so frustrated I have no idea what else to do. Currently I am suffering with generalized body wide muscle twitching. They initially started in December of this year after I had a twitch in my right shoulder. I decided to google the symptoms and ended up in the worst panic of my life. I thought at first it could be MS and I then learned of ALS and my twitches exploded all over. I went to a neurologist in March who did not want to do the EMG and she said it was something called benign fasciculation syndrome. It took some time but the twitches became less frequent but never went away. In July I had a full physical and my GP stated it was nothing and could be attributed to stress or somatization of symptoms. I began an accelerated nursing program and now I can't concentrate because I am scared to death again because the twitching has come back.
My biggest problem is the unbelievable amount of discrepancy there is related to the subject. You can look on any site and it states that "muscle twitching" is a sign of MND. There are people who have been diagnosed who say they started out with twitching as their first symptoms. There are people in their 20s saying they have been diagnosed with the illness. Then there are hoards of people who state twitching is related to anxiety and stress. That it is benign if no other symptoms are present. I just do not know what to think.
I am 27 and have never been diagnosed with GAD or anything but I have had a very stressful childhood. Maybe I do need to see a psychiatrist?
If anyone has these issues please let me know. I would love to discuss them I hate this so much
10 likes, 110 replies
I have had the same issues for about a year now. I am a healthy 29 year old, with no underlying health issues. I did see a neurologist, & he had indicated that I too am suffering from benign fasculations. I have been under a ton of stress this past year, so I'm fairly certain this is why I have the twitching... Have you checked your Vit D & B12 levels, just to be on the safe side?
BTW, Good luck with nursing school! :-)
Hey Brittany, thank you for the response. It is good to see others can relate. How did your twitching begin? Did you get an EMG done? When I went the neurologist she stated that getting one was unnecessary. When I went for the physical in July before school my PCP stated that certain imbalances can cause this to happen. I got all my blood work back and there was an "insufficiency" of Vit D. I wasn't deficient so to speak, but I was not getting enough. I did buy Vit D supplements but the twitches did not go away. I guess some days are better than others but it is weird how they are present even when you do not necessarily feel very anxious.
Hello, again.🙂 My twitching began, after a brief health scare. I had some dental work done, & my dentist used nitrous oxide. I had seve headaches, burning sensations in my arms and legs, and visual disturbances. After the initial symptoms disappeared, the twitches are still present. (They have decreased significantly, however.) I would assume this is all stress related on your part, however, vitamin lack of D could cause twitching... Hope you feel better soon! You are certainly not alone. 😃
I know this message was 2 years ago. But it has caught my attention because I have recently had a vaccine and now have nerve twitching all over my body for the last 3 weeks. Its really effecting my life as i can't sleep and i am so worried.
I was wondering if you made a full recovery.
i started having muscle twitches after my first Moderna shot almost a month ago. I am having anxiety and extremely stressed about it. What vaccine did you get?
Hey I did too! I starting getting twitches and cramps a couple of weeks after the moderna vaccine. Are your twitches body wide?
I am also experiencing this! All over my body in random places! The twitches happen so fast and as soon as i move an inch, they stop! They feel different then other twitches. Is anyone else experiencing this after moderna? if so, did it resolve?
oh no. I started twitching after the 2nd moderna shot 4 weeks ago. i have them only at night when i'm trying to sleep. It can be my legs, feet, shoulder, thumb or head. Has anyone's subsided yet? The only thing that worked was some prescibed soma. also, no twitching when i'm awake, but this is getting exhausting!
I have been having muscle twitches all over for the past 8 weeks. it started the day i got my first dose of the covid vaccine. Have yours gone away yet? I'm thinking about seeing a neurologist soon
Are you still having the twitching? I started having it about a week after the first moderna vaccine but just in my feet. Then about a week and a half after the second vaccine, it started all over my body. It was at night for several weeks but now is bothering me sometimes during the day. So much worse at night and I am not sleeping.
Are you still having the twitches? I have been having them since I got the Moderna vaccine. It has been 7 weeks now.
How are you doing? Even though my twitching started after moderna shot... I must say i had a lot of anxiety about getting it. It's hard to say if it's anxiety or vaccine related. Has your muscle twitching gone away. Did you have Anxiety like me about getting the shot?
Hi, I would love to hear if your issue resolved over the past few years? I too started having non-stop muscle spasms in my calves and more frequent ones in other parts of my body coupled with cramps. Going on a month and a half now. and it all started 2 weeks after the first Pfizer dose of the covid vaccine. (didn't get the second for this reason). yes i had alot of anxiety about the shot too though as i went through alot last year with two broken ankles, a bone infection that i beat with IV antibiotics. and a dvt blood clot from the PICC line in my arm (used during IV antibiotic treatment). so i had intense fears that the shot might give me another clot after the astrazeneca vaccine got pulled for clotting concerns. So yes i had a ton of anxiety about the shot. so im not sure if it was the shot or the anxiety from the shot... but in my head I think it was the shot. on the other hand i had my blood tested and i had slightly low vitamin D levels and slightly elevated ALT and GGT. could potentially be lack of vitamin D too. but its interesting to see that some of you experienced the same symptoms as me around the same timeframe after getting the covid shot. hopefully we will all get through this soon.
Hi Carley ,
I have been having twitching of my eyelid, and my hand every day for several weeks. i had my covid vaccine (pfeizer) earlier this year in February. I have an appontment to see a neurologist. How have your spasms been?
I also had the Pfizer vaccine in february, I had both doses. For about a month I have had twitches in my hand between my index and thumb, as well as my eyelid. how have yours been? My twitches occur all through out the day randomly.
I have been having twitches everyday and I had the pfizer vaccine. mine didnt start immediatley after the vaccine there was a gap of several weeks. I have a nurologist appointment. How have your spasms been?
hi Carley. Which Vacvine did u get ? i had the pfizer 3 weeks ago and are getting these symptoms 😞
i too have had muscle twitching head to toe same side as where i had 1st pfizer shot . 3 weeks and i still have it. Hope this resolves
how are your twitches now
I too had muscle twitches after my first Pfizer shot. EMG and labs were all normal. they went away about week or so later. I definitely get them again when I think about it or my anxiety is higher than usual. did anyone get their second covid vaccine after having this??
did you get your 2nd vax?
my Dr told me not to get my 2nd jab. Waiting to see immunologist
i have had twitching for 5 weeks since pfizer - also developed tremor in hands amd jaw, all in last 5 weeks. have you inproved? did you have the second jab?
A good friend of mine was diagnosed w ALS . I can tend to be a bit hypochondriac generally. In March I started having a twitch in my tricep that lasted for about a week and a half. And then moved to my forearm on the opposite limb and thankfully has stopped. My problem is now the twitching is occurring in both of my calf muscles. This is not occurring all day, but happens much more so when I fixate on it. I am really losing my mind because of the lack of sleep. 10 days ago a physician friend of mine who does EMGs did a test on my upper and lower limbs. Everything came back perfectly normal which was a nice relief. Right after the test is when the calf muscles started to twitch. Again, I am convinced this is due to anxiety, but like most of you I am freaking out I am so fixated on my friends diagnosis I am stressing myself out beyond belief.
My friend said i am experiencing BFS and need to chill.
Its so hard its Affecting my life and I don’t know what to do. If anybody has any similar stories please let me know. Britney/ Michael, could you please update us on how you are doing? I will keep you all in my prayers. Its good to talk with people who are going through similar circumstances.
any luck or advice from your immunologist ?
he thinks after doing research and the numbers of people with the same reaction is not enough to link mine. I know this is from the pfizer
hi carley, did this ever go away?p
hi lesley, did this end up going away?
hi jordan, did your twitches go away?
hello audrey, did the muscle twitches go away??
hi sue, did your muscle twitches go away?
hey alison, did the twitches go away?
did this resolve for you maria?
did thi twitching go away kevin?
Hello, i took the 2nd Moderna shot in February and had a robust immune response to it. About 3 weeks after that I developed body wide muscle twitches. i have had them for 6 months now. neurologist did an EMG and he said in his opinion he didnt think I had ALS but wants to see me every 2 months . of course ive had severe aniexty over it but, if it is from vaccine i would feel better. Thank you for this forum.
have your twitches improved at all ?
i still have mine from pfizer back in may the twitches can be all over even my scalp . I'm now waiting to see an neurologist 😞
i had covid in Jan and my spasms started may. i think its an aftermath of covid and thats what triggered it. ive not taken vaccination yet. it started on my jaw and then i got super worried and 2 weeks later exploded all over my body. i frlt them most at night when lying down. neurologist in june said its benign and stress related. then they stopped in july for 5-6 weeks. very occasional. then they started on my body again end of september . i saw neurologst for followup oct 4 and he said its benign and gave me anxiety pills which i have not taken yet. also there is burning and pain in my left arm and right arm(lesser and not so much as compared to left) and occasional burning in thigh area also with pins and needles aswell in feet and other random areas. doctor didnt suggest MRI since he said brain scans can come out incorrect since when a person is anxious or stressed out, neurons are already going crazy. he said unless there is muscle weakness no need to worry. tiredness is okay that happens in BFS but weakness is like not able to walk stairs or lift coffee mug. it is scary since you see ALS and MS come up in google searches but better not to read up on it so much and trust your neurologist. And wait it out. if 9-12 months go by and no weakness issues, then its benign for sure. no need to get testing ,mris done prior to that. give your body some time .
i also found that Guillain barre syndrome which is pretty much the same symptoms as BFS can occur after covid virus or the covid vaccine.
i have already been assessed for this but def not this.
dr saying adverse reaction to the pfizer. Wish i never had this
i had 1st dose of Pfizer in early october i have twitching all over my body . i am extremly anxious about it and cannot sleep. as soon as i lay down the twitches intesify . it doesnt help that every google search turns up ALS . i have had very slight muscle cramping but i also run and exercise so its tough to tell. This is terrible and i have to wait 3 months to see a neuro im a 34/yo male btw
I've had this twitching all over since my first dose in May. I have seen immunologist who told me to get my 2nd so 4 mnths later i did ...i have been back and forwards to the dr and demanded to get this sorted so he referred me onto a private doctor which was last week and he told me its def from the pfizer and it's the immune system triggering the nerves.
mine are in my head and face alot and at times legs and hands.
this dr also thinks could be fibromyalgia but i doubt it.
i hope you get answers 😞 9mnths so far I've had this.
my dr refuses neuro as he said all they will do is put me on ant seizure meds which will make me drowsy 24/7
I have been having muscle twitches in my whole body and non-stop legs for over 4 months after the first Pfizer shot, never done the second. Had two different neurologists perform 4 nerve conduction tests with needles in muscles and electric signals. Had a full ANA blood test for auto-immune disorders and all clear. All doctors say it is anxiety however I have videos of twitches in my legs that look like something is under the skin. At nights it is the worst. Honestly I don't know what to do next. Healthy M26 and here we go.
mines still happening still my head too 😩
Like you, I started getting the muscle twitches after my 2nd Moderna shot; about three weeks afterward; which was 10 months ago now. In the beginning they only came in my calves at night, then my thighs, then my forearms. Now they come during the day too, mostly just my legs, but pretty much all the time. I'm trying to ignore them because my neurologist said they are benign. They have toned down a bit since I started taking a good B vitamin supplement, and Calcium at night before bed. I also sometimes take a homeopathic Leg Cramps supp at night. Helps me sleep. I'm 66. I think it's important that we log about these symptoms. Good luck. I hope you get some relief.