Long haul Covid tremors and muscle spasms

Posted by cristen1 @cristen1, Aug 11, 2022

Does anyone have remedies for long haul Covid internal tremors and muscle spasms or twitches?

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Tizanidine has helped my muscle cramps but I purposely take a small dose of 1mg instead of the prescribed 2mg… I take it before bed and it helps so much!

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@lfi56d

I first had COVID in December of 2020. I was sick for one month and ran a fever of 101-102 for 2 solid weeks. No hospitalization, though. I began having muscle factions in my arms that has now moved to my legs. They often turn into full blown cramps if I can’t stretch them out. This usually happens after I go to bed. My sleep is interrupted every night! Does anyone have suggestions?!

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Hi @lfi56d. My nurse friend suggested teaspoon of mustard and know histamine intolerance can be issue so checking into your personal reactions first helpful and hope brings you relief!🌈

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My husband and my dad both suffer from long-COVID tremors. Dad was given propranolol but he read the side effects list and took one (he's kind of a novice with medications) and decided not to take any more. So we don't know if it would have helped. My husband seems to complain about the tremors most when he's tired or trying to do fine work with his hands. He has found that a little caffeine (like tea or ½-caf coffee) tends to slow the tremors a bit.

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The muscle spasms drop me to the floor. I never had this. It happens without warning. I would be interested to see how anyone captures this type of issue and tames it.

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@mgn

I have read the comments on long covid with great interest. I had mild covid May 2022 and was fine until I got my fifth vaccine early November 2022. By the end of the month I was extremely hoarse, breathless, fatigued and choking when swallowing. I saw two ENT surgeons who found nothing of interest, had a modified barium swallow which showed slight irregularities and had MRI and CT scans of head and neck which were normal. I saw one neurologist who saw no signs of disease and a second one who said I have ALS. I do have weight loss, some muscle weakness and fasciculation which he thought indicated ALS. Motor nerve conduction study was inconclusive and I refused EMG having severe needle phobia. So, I was interested to learn that others had been diagnosed with ALS who might have long covid. I would really like to know how to find out what is actually wrong with me and if I have any hope of recovery.

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did you end up having als? i have similar issues

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@artistandtwin

I've been experiencing a tremor in my hands and muscle spasms in my legs for over a year now (since I got covid the 1st time). My neurologist doesn't seem to be concerned about my tremor, but then again, she doesn't seem that concerned with my incoordinated, slow-as-a-snail ataxic gait.

I need help and encouragement that I will return to normal someday. I am in my 50s and was an active, healthy woman before covid hit.

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My neurologists are the same way.They are not too concerned I can barely walk.I was perfectly healthy in my 40's and exercised all of the time and now I am pretty much disabled.I don't even look like the same person I did 2 years ago.My body was so destroyed it feels like I am in a strangers body.I had thyroid disease since my 20's,but I am just trying to figure out how the healthiest people are the ones that got hit the hardest.The only thing I can think of is that we make better hosts for the virus.The people that are bedridden were training for marathons,yoga instructors,don't smoke or do drugs,etc.They are not doing nearly enough research or have enough help available for people suffering from Long Covid.So many people worked so hard during the Pandemic and had to leave their jobs due to long covid.Disability is so hard to get too without actually having a more specific diagnosis than long covid.So anyone that got long covid is punished for something that we never even had a chance of fighting since it was manmade.So crazy!

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@edrinez

did you end up having als? i have similar issues

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I have the same issues as well.I have seen three neurologists.I have trouble walking,loss of strength in whole body and face.Slow talking,swallowing,chewing.I also have muscle twitching all throughout my body.The neurologists are saying no,but I think ALS is really hard to diagnose.I was tested for Myasthenia Gravis which is similar to ALS,but there is treatment for MG.My test came back negative,but a specific antibody for that test came back borderline.I am just wondering if it just part of long covid.I saw that long covid clinics are now using mestinon which is uses to treat Myasthenia Gravis.It gets the muscles and nerve signals working properly and it also helps the vagus nerve to function properly.Covid attacks the vagus nerve which controls so much in the body.Doctors don't know much about the vagus nerve at all.

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@j77

I have the same issues as well.I have seen three neurologists.I have trouble walking,loss of strength in whole body and face.Slow talking,swallowing,chewing.I also have muscle twitching all throughout my body.The neurologists are saying no,but I think ALS is really hard to diagnose.I was tested for Myasthenia Gravis which is similar to ALS,but there is treatment for MG.My test came back negative,but a specific antibody for that test came back borderline.I am just wondering if it just part of long covid.I saw that long covid clinics are now using mestinon which is uses to treat Myasthenia Gravis.It gets the muscles and nerve signals working properly and it also helps the vagus nerve to function properly.Covid attacks the vagus nerve which controls so much in the body.Doctors don't know much about the vagus nerve at all.

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Yeah exact same here, twitching and weakness and my left vocal cord is paralyzed now..

Im also getting no als but like you I believe its because it’s hard to diagnose… I am undoubtably getting weaker unfortunately.

Kind like similar to how polio invaded the cns and caused motor neuron death I think Covid is doing something similar. My fiancé who had my same infections also has similar symptoms with twitching and weakness but she’s progressing slower

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@edrinez

Yeah exact same here, twitching and weakness and my left vocal cord is paralyzed now..

Im also getting no als but like you I believe its because it’s hard to diagnose… I am undoubtably getting weaker unfortunately.

Kind like similar to how polio invaded the cns and caused motor neuron death I think Covid is doing something similar. My fiancé who had my same infections also has similar symptoms with twitching and weakness but she’s progressing slower

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It is so bizarre.So at the very beginning I could not swallow at all.The specialists were trying antibiotics,antiparasite,antifungal and nothing was working.The GI Doctors could not figure it out and said this has to be viral and it is your muscles.Thankfully my primary gave me steroids which gave me the ability to eat again because I had lost so much weight.Have you lost strength in the trunk of your body as well?It is like ALS/Muscular Dystrophy and Myasthenia Gravis all in one.Have you tried steroids?That might help your vocal chord.I could barely talk when I was having the swallowing issues.Also have you been tested for Myasthenia Gravis?Covid can bring on Myasthenia Gravis which is similar to ALS.There is also a disease called LEMS.I thought I had Lupus because so many people in my Family have it,but the Rhuematologists told me no.You should also look up the vagus nerve when you get time.I could not sneeze,cough or yawn for a year and now it is slowly coming back.I think covid brings on Autoimmune and neurological type symptoms,but it hides from the conventional tests.I would Love to try Mestinon,but the neurologists will not let me try it out.They don't know enough about long covid to know what could help or possibly work.

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@j77

It is so bizarre.So at the very beginning I could not swallow at all.The specialists were trying antibiotics,antiparasite,antifungal and nothing was working.The GI Doctors could not figure it out and said this has to be viral and it is your muscles.Thankfully my primary gave me steroids which gave me the ability to eat again because I had lost so much weight.Have you lost strength in the trunk of your body as well?It is like ALS/Muscular Dystrophy and Myasthenia Gravis all in one.Have you tried steroids?That might help your vocal chord.I could barely talk when I was having the swallowing issues.Also have you been tested for Myasthenia Gravis?Covid can bring on Myasthenia Gravis which is similar to ALS.There is also a disease called LEMS.I thought I had Lupus because so many people in my Family have it,but the Rhuematologists told me no.You should also look up the vagus nerve when you get time.I could not sneeze,cough or yawn for a year and now it is slowly coming back.I think covid brings on Autoimmune and neurological type symptoms,but it hides from the conventional tests.I would Love to try Mestinon,but the neurologists will not let me try it out.They don't know enough about long covid to know what could help or possibly work.

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I don’t think I tested for MG but I think it’s more quickly progressive and bilateral.. I have been twitching for 2.5 years and slowly been losing function..

It started with my tongue getting tired when eating years ago, then clearing my throat a lot, and mild paresis of my vocal cord, and now full paralysis of my left vocal cord. My left pinky is also weak and left leg.. I have a tremor in my left facial muscle when I do a half smile.. my uvula is also deviated which I believe indicates cranial nerve weakness..

I agree with the vagus nerve as I also have pre ventricular contractions which is affected by vagus nerve from what I looked up..

I’ve seen 5 neurologists and had 2 EMGs. I will see a neuromuscular next, and am really certain I will get an als diagnosis soon enough..

I think something with Covid triggered it, als can be triggered by virus and even reactivated hold viruses which Covid does unfortunately..

There are many studies on covid and neurodegenerative affects and triggers that it does to the body. I’m glad you recovered but mine has been a slow downhill decline, I can only hope my fiance doesn’t follow my steps as she is only 26 and I am 30, but it doesn’t look good. Even if it isn’t als the progressive paralysis and weakness will eventually be the end of me unless they figure it out.

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