My wife has tremors, internal vibrations, and sudden muscle jerks from Covid. These are all worse while sleeping. At times her tremors are so bad that her head, nose, and other body part shake. She is unable to eat or drink while in this state. If the tremors continue to get worse she will not be able to eat and drink so we all know what that means. She is in a very bad place with her health right now. She needs HELP.
Yes, my wife has terrible covid tremors and at night she has covid internal vibrations and sudden muscles jerks.
She's taking Propranolol but obviously it's not doing the job.
We need HELP
Stopped the LDN and the Ivermectin, and tremors have increased slowly ... it may be PD from COVID. In fact that is what my intuition tells me. Still not taking PD meds though, and starting to cut down on the supplements.
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.
Hi there, how are you now? I just wanted to encourage you by saying ‘you’re not alone’. What you have experienced sounds very similar to myself, right down to the ‘ataxic gait’.
Hang in there 😊
I was prescribed a specific muscle relaxer that is nerve related that my friend with MS suggested and it’s worked beautifully for the muscle spasms/cramps that are severe. Tizanidine 2mg but i break it in half and use 1mg before bed because my leg cramps wake me up. The muscle twitching although annoying are not debilitating.
My father, 65 and a former ENT doctor, used to be the most athletic man you could think of. He was abnormally fit, muscular and healthy. But he has a similar path as jlloyd78731 describes below.
- progressive muscle weakness
- fasciculations in legs and arms
- polyneuropathi
- extremely fatigued
- in the beginning of his symptoms also other weird complaints like rhythm disorders, insomnia, stomach problems, etc This has now diminished
So ALS-like symptoms Been through the whole medical mill, EMGs done etc. Doctors say it's unlikely he has ALS. Can hardly walk or function. Cutting the hedge in the garden, for example, is already too heavy, can't lift the hedge trimmer anymore. On the verge of becoming 'disabled', which he will not accept and will not live through. As a doctor himself, he no longer has any faith at all in improvement or recovery.
What I am very curious about, we mainly read here people who, like me now, describe these symptoms, but are there any cases where people have recovered from this, improved or stayed the same? Or uberhaupt more known how this 'ends'? And then specifically those with similar neuro/muscle complaints? Or any other tips?
The very last thing I want is to lose my father of course
jlloyd78731 | @jlloyd78731 | Jan 2 9:28pm
I've had 2 moderna shots and a booster in March 2022. I got covid in mid-June 2022. Mid-July I was feeling slightly weak. I took 1000mcg of B12 once a day. Late September 2022 I started getting muscle twitches. My Dr. referred me to a Neuromuscular Dr who did an EMG test. He did the test 3 days before I got another virus…not sure what kind. He said 95% chance I have ALS. After getting the 2nd virus I was more fatigued and weak. I'm scheduling a 2nd opinion. I'm also looking for a post-covid clinic. I've known 10+ people with similar symptoms. Some last longer like me at 64yrs… some younger people get over it sooner. I hope the Dr is wrong with the ALS diagnosis.
Hey maarten! So sorry about what your dad is going through… my experience mirrors jlloyd78731 and your dad’s with the vaccinations and twitches/cramps, neuralgia and fatigue. I got covid for the 3rd time -that I know of- June 2022. In September I got a pfizer booster and 2 days later I got twitches in my feet. They gradually progressed to all over. I had an EMG, brain MRI, multiple electrolyte and metabolic even paraneoplastic panels done, as well as vitamin levels and trace elements checked and all were unremarkable. ALS was ruled out. A pain specialist diagnosed my pain a peripheral nerve hyperexcitability but couldn’t offer anything that was helpful other than a trial of SNRI which made the twitching worse. I had to stop working due to the fatigue and pain and I have at times thought about ending my life because I can not live like this anymore. I am 40 years old and can tolerate very little activity, while before all this I had no chronic illnesses, was on no maintenance meds and worked full time as outpatient and part time as inpatient pharmacist. I feel your dad’s disappointment with providers, I truly do. I stopped going to follow up appointments a few months ago.
I can say that some symptoms completely resolved with time. Those were sudden onset tingling and numbness in my right arm and right half of my face and occasional weakness/ tremor in my left knee and internal vibrations. Some symptoms decreased in frequency/severity such as toe cramps and disabling cervical and lumbar neuralgia along with the pulmonary issues. Some symptoms have changed into a new symptom, particularly the all over rapid twitching (fasciculations) are now limited to my calves and they are more like neuromyotonia instead, and some symptoms resolved and spontaneously return such as debilitating fatigue. I asked the same million dollar question from every provider I’ve seen and all they could say was that yes they has seen others with same symptoms post covid/vaccination and they all believed symptoms get better with time. None could of course offer any timeline of months or years (decades?) when I could expect improvement.
Left with a broken body that can’t keep up with my mind I am trying to be my own “ Dr House”… On that note has your dad noticed if albuterol inhaler (if he has used any) or a natural insulin spike (such as 30-40 minutes after eating a large-ish serving of a simple carb) makes the twitches worse?
I have had tremor since about 6 months after getting my first COVID in November of 2019. It tarted with my lower back on the right side where I was diagnosed with neuropathy. That continues today. Last May I was diagnosed with Parkinson's and my right hand began twitching after the diagnosis and a fall that I had where I fell right on an old neck injury. I still believe it was COVID that caused these tremors and they have gotten worse. I have not taken any of the shots, and am glad because I only hear terrible things about the effects or at least that people still got COVID anyway. I did get a second COVID and it made my hand tremor much and worse. Now that the news is out that patient zero was a scientist working on gain of function at the Wuhan lab, maybe the medical community can get down to the reality of figuring out the neurological effects gained in the function of this hellish nightmare of a virus they created.
My father, 65 and a former ENT doctor, used to be the most athletic man you could think of. He was abnormally fit, muscular and healthy. But he has a similar path as jlloyd78731 describes below.
- progressive muscle weakness
- fasciculations in legs and arms
- polyneuropathi
- extremely fatigued
- in the beginning of his symptoms also other weird complaints like rhythm disorders, insomnia, stomach problems, etc This has now diminished
So ALS-like symptoms Been through the whole medical mill, EMGs done etc. Doctors say it's unlikely he has ALS. Can hardly walk or function. Cutting the hedge in the garden, for example, is already too heavy, can't lift the hedge trimmer anymore. On the verge of becoming 'disabled', which he will not accept and will not live through. As a doctor himself, he no longer has any faith at all in improvement or recovery.
What I am very curious about, we mainly read here people who, like me now, describe these symptoms, but are there any cases where people have recovered from this, improved or stayed the same? Or uberhaupt more known how this 'ends'? And then specifically those with similar neuro/muscle complaints? Or any other tips?
The very last thing I want is to lose my father of course
jlloyd78731 | @jlloyd78731 | Jan 2 9:28pm
I've had 2 moderna shots and a booster in March 2022. I got covid in mid-June 2022. Mid-July I was feeling slightly weak. I took 1000mcg of B12 once a day. Late September 2022 I started getting muscle twitches. My Dr. referred me to a Neuromuscular Dr who did an EMG test. He did the test 3 days before I got another virus…not sure what kind. He said 95% chance I have ALS. After getting the 2nd virus I was more fatigued and weak. I'm scheduling a 2nd opinion. I'm also looking for a post-covid clinic. I've known 10+ people with similar symptoms. Some last longer like me at 64yrs… some younger people get over it sooner. I hope the Dr is wrong with the ALS diagnosis.
I was 64 when I contracted Covid in NYC in Feb. 2021. My 1st symptom, that got me tested, was a racing heart which normally was 50bpm even though I was sedentary. I was given Bamlanivimab monoclonal antibody infusion treatment 5 days after diagnosis. My internal vibrations began that night feeling like subways rumbling through my veins, fast, starting with my lower legs. At first, they lasted about an hour, but progressed, usually starting with numbness in my feet and working their way up my body, lasting longer and longer until sometimes they lasted 24 hours. It felt like they were wearing my body out. I saw every possible doctor and had a battery of tests, including EMGs and imaging. Nothing was abnormal except non specific hyperintensities in my supratentorial subcortical white matter and micro-hemmoraging of my brain and ground glass opacities in my lungs. The lungs cleared post Covid. The “tremors” weren’t visible outwardly. While I actively had Covid, they gave me so much anxiety it felt like I was on adrenaline or like my body was running a race, but I was at rest. Some days I did 10 paintings a day. Sometimes, I picked the paint off of the walls and ceiling in all 4 rooms of my apt. I felt a strong compulsion to do something to stop the tremors. The tremors could be brought on by loud noises or being surprised or feeling emotional (hearing a love song, a sad story of the news, a movie, a painting that evoked emotion), a phone waking me while I was sleeping, etc. I had to stop watching TV, turn my ringers off, and do everything I could to not feel emotion. I met someone with similar issues that got treatment for CSS by Dr. Sletten at Mayo Clinic Jacksonville, Florida, for Covid leaving him with a hypersensitivity disorder. I had lots of gastro and throat problems. I lost 5 dress sizes and had severe muscle wasting and often painful cramping, especially inside the creases of my elbows. Every possible pain and muscle relating/ anti-anxiety medication was tried, including medical marijuana. Nothing helped except the medical marijuana lozenges helped my appetite and sleep which was a problem. It helped me gain my weight back along with eating pints of Hagen Daz ice cream. An infectious disease director told me to take speedy walks which helped to mask the sensations and make the episodes wear off faster. Gaining my weight back and walks solved the muscle wasting. They had dissipated a lot after a year,….until I got Covid again in Dec. 2021. Then it started over again. I had intense headaches especially behind my right eye and eye socket and electric like shocks from my right eye socket wrapping around the back of my head. I’d also feel them in my legs. I saw long Covid eye specialist Mark Dinkin at Weill Cornell and long neuro Covid clinic at Northwestern, which took a year to get the appointment. They were learning from me, assuring me I wasn’t alone, but didn’t have answers. The tremor episodes lessened, but I developed episodes of falling over feeling like I was going to pass out. Sometimes I felt it laying down. On 5/21/23, I lost feeling in my left hand, arm, and left chin and lower lip for a few seconds. It felt like novacaine. I was diagnosed with TIA, but imaging showed nothing new. An MRA of my brain showed a new 5mm brain aneurysm in the left central artery. Transthoracic echo showed two new heart aneurysms. I don’t know if these are related to my tremors, but I suspect they are because I felt like the toll the vibrations took were wearing out my heart and injuring my brain. I often would get tiny micro blood clots in my left nostril and more recently a small amount of bright red blood from my nose. My occupation used to be researcher, but I can’t work because I was left with severe cognitive decline especially of my executive function after the 1st bout of Covid. After the 2nd bout, I could no longer take notes. They are fragmented. My blood pressure is often hard to control. I was given 2.5 mg of Amlodipine a few days ago that sent me into a full blown attack of the vibrations, worse than any episode to date!!!! They started with the numbness in my toes, moving up to my brain. The compulsion to pick the paint off the walls was back, but more intense than ever. A feeling of ravenous mess took over and I ran to the refrigerator grabbing anything to try to satiate myself or make it stop! Luckily, it only lasted an hour, but I swear that there is a connection between the way Amlodipine works and the tremors! Otherwise, I don’t get the tremors as often as I used to. I’m 5’8 and weight 248 lbs. Each episode of tremors/pain/symptoms is very scary for me and makes me feel hopeless and lose faith in the medical profession, but I self talk a lot, telling myself to not worry, but live each moment to the fullest now and try to enjoy whatever time I can, but life is not promised to any of us. That helps. I feel for everyone with these tremors.
Thanks for being so open and honest about your experience, I genuinely appreciate it. It's unfortunate that we're seeing so many people grappling with these kinds of issues, but knowing that we're not alone in this can be a small source of comfort.
Like you, my father has felt misunderstood, even by his fellow doctors, which has been quite a challenge.
If I interpret your story correctlt @fbaron it seems that while some of your symptoms have receded or disappeared, but the neurological and muscular issues are not improving or worsening? That's a similarity with my dad's situation, and that is what is his biggest concertn.
Though it's difficult to ask, where does it end for people having these neuro/muscular problems (fasculations, muscle weakness, tremor, twitches, etc)? Can it become wheelchair-bound or worse because of these symptoms? Or perhaps on a more hopeful note, any stories of recovery or significant improvement on these specific issues?
Above all, I want to acknowledge how hard this must be for you all. It takes courage to share your story and I admire your resilience. I hope that the collective experiences can lead to more understanding and effective treatments.
Connect
Connect
Like
Helpful
Hug
My wife has tremors, internal vibrations, and sudden muscle jerks from Covid. These are all worse while sleeping. At times her tremors are so bad that her head, nose, and other body part shake. She is unable to eat or drink while in this state. If the tremors continue to get worse she will not be able to eat and drink so we all know what that means. She is in a very bad place with her health right now. She needs HELP.
-
Like -
Helpful -
Hug
2 ReactionsYes, my wife has terrible covid tremors and at night she has covid internal vibrations and sudden muscles jerks.
She's taking Propranolol but obviously it's not doing the job.
We need HELP
Stopped the LDN and the Ivermectin, and tremors have increased slowly ... it may be PD from COVID. In fact that is what my intuition tells me. Still not taking PD meds though, and starting to cut down on the supplements.
Hi there, how are you now? I just wanted to encourage you by saying ‘you’re not alone’. What you have experienced sounds very similar to myself, right down to the ‘ataxic gait’.
Hang in there 😊
I was prescribed a specific muscle relaxer that is nerve related that my friend with MS suggested and it’s worked beautifully for the muscle spasms/cramps that are severe. Tizanidine 2mg but i break it in half and use 1mg before bed because my leg cramps wake me up. The muscle twitching although annoying are not debilitating.
My father, 65 and a former ENT doctor, used to be the most athletic man you could think of. He was abnormally fit, muscular and healthy. But he has a similar path as jlloyd78731 describes below.
- progressive muscle weakness
- fasciculations in legs and arms
- polyneuropathi
- extremely fatigued
- in the beginning of his symptoms also other weird complaints like rhythm disorders, insomnia, stomach problems, etc This has now diminished
So ALS-like symptoms Been through the whole medical mill, EMGs done etc. Doctors say it's unlikely he has ALS. Can hardly walk or function. Cutting the hedge in the garden, for example, is already too heavy, can't lift the hedge trimmer anymore. On the verge of becoming 'disabled', which he will not accept and will not live through. As a doctor himself, he no longer has any faith at all in improvement or recovery.
What I am very curious about, we mainly read here people who, like me now, describe these symptoms, but are there any cases where people have recovered from this, improved or stayed the same? Or uberhaupt more known how this 'ends'? And then specifically those with similar neuro/muscle complaints? Or any other tips?
The very last thing I want is to lose my father of course
jlloyd78731 | @jlloyd78731 | Jan 2 9:28pm
I've had 2 moderna shots and a booster in March 2022. I got covid in mid-June 2022. Mid-July I was feeling slightly weak. I took 1000mcg of B12 once a day. Late September 2022 I started getting muscle twitches. My Dr. referred me to a Neuromuscular Dr who did an EMG test. He did the test 3 days before I got another virus…not sure what kind. He said 95% chance I have ALS. After getting the 2nd virus I was more fatigued and weak. I'm scheduling a 2nd opinion. I'm also looking for a post-covid clinic. I've known 10+ people with similar symptoms. Some last longer like me at 64yrs… some younger people get over it sooner. I hope the Dr is wrong with the ALS diagnosis.
-
Like -
Helpful -
Hug
1 ReactionHey maarten! So sorry about what your dad is going through… my experience mirrors jlloyd78731 and your dad’s with the vaccinations and twitches/cramps, neuralgia and fatigue. I got covid for the 3rd time -that I know of- June 2022. In September I got a pfizer booster and 2 days later I got twitches in my feet. They gradually progressed to all over. I had an EMG, brain MRI, multiple electrolyte and metabolic even paraneoplastic panels done, as well as vitamin levels and trace elements checked and all were unremarkable. ALS was ruled out. A pain specialist diagnosed my pain a peripheral nerve hyperexcitability but couldn’t offer anything that was helpful other than a trial of SNRI which made the twitching worse. I had to stop working due to the fatigue and pain and I have at times thought about ending my life because I can not live like this anymore. I am 40 years old and can tolerate very little activity, while before all this I had no chronic illnesses, was on no maintenance meds and worked full time as outpatient and part time as inpatient pharmacist. I feel your dad’s disappointment with providers, I truly do. I stopped going to follow up appointments a few months ago.
I can say that some symptoms completely resolved with time. Those were sudden onset tingling and numbness in my right arm and right half of my face and occasional weakness/ tremor in my left knee and internal vibrations. Some symptoms decreased in frequency/severity such as toe cramps and disabling cervical and lumbar neuralgia along with the pulmonary issues. Some symptoms have changed into a new symptom, particularly the all over rapid twitching (fasciculations) are now limited to my calves and they are more like neuromyotonia instead, and some symptoms resolved and spontaneously return such as debilitating fatigue. I asked the same million dollar question from every provider I’ve seen and all they could say was that yes they has seen others with same symptoms post covid/vaccination and they all believed symptoms get better with time. None could of course offer any timeline of months or years (decades?) when I could expect improvement.
Left with a broken body that can’t keep up with my mind I am trying to be my own “ Dr House”… On that note has your dad noticed if albuterol inhaler (if he has used any) or a natural insulin spike (such as 30-40 minutes after eating a large-ish serving of a simple carb) makes the twitches worse?
I have had tremor since about 6 months after getting my first COVID in November of 2019. It tarted with my lower back on the right side where I was diagnosed with neuropathy. That continues today. Last May I was diagnosed with Parkinson's and my right hand began twitching after the diagnosis and a fall that I had where I fell right on an old neck injury. I still believe it was COVID that caused these tremors and they have gotten worse. I have not taken any of the shots, and am glad because I only hear terrible things about the effects or at least that people still got COVID anyway. I did get a second COVID and it made my hand tremor much and worse. Now that the news is out that patient zero was a scientist working on gain of function at the Wuhan lab, maybe the medical community can get down to the reality of figuring out the neurological effects gained in the function of this hellish nightmare of a virus they created.
I was 64 when I contracted Covid in NYC in Feb. 2021. My 1st symptom, that got me tested, was a racing heart which normally was 50bpm even though I was sedentary. I was given Bamlanivimab monoclonal antibody infusion treatment 5 days after diagnosis. My internal vibrations began that night feeling like subways rumbling through my veins, fast, starting with my lower legs. At first, they lasted about an hour, but progressed, usually starting with numbness in my feet and working their way up my body, lasting longer and longer until sometimes they lasted 24 hours. It felt like they were wearing my body out. I saw every possible doctor and had a battery of tests, including EMGs and imaging. Nothing was abnormal except non specific hyperintensities in my supratentorial subcortical white matter and micro-hemmoraging of my brain and ground glass opacities in my lungs. The lungs cleared post Covid. The “tremors” weren’t visible outwardly. While I actively had Covid, they gave me so much anxiety it felt like I was on adrenaline or like my body was running a race, but I was at rest. Some days I did 10 paintings a day. Sometimes, I picked the paint off of the walls and ceiling in all 4 rooms of my apt. I felt a strong compulsion to do something to stop the tremors. The tremors could be brought on by loud noises or being surprised or feeling emotional (hearing a love song, a sad story of the news, a movie, a painting that evoked emotion), a phone waking me while I was sleeping, etc. I had to stop watching TV, turn my ringers off, and do everything I could to not feel emotion. I met someone with similar issues that got treatment for CSS by Dr. Sletten at Mayo Clinic Jacksonville, Florida, for Covid leaving him with a hypersensitivity disorder. I had lots of gastro and throat problems. I lost 5 dress sizes and had severe muscle wasting and often painful cramping, especially inside the creases of my elbows. Every possible pain and muscle relating/ anti-anxiety medication was tried, including medical marijuana. Nothing helped except the medical marijuana lozenges helped my appetite and sleep which was a problem. It helped me gain my weight back along with eating pints of Hagen Daz ice cream. An infectious disease director told me to take speedy walks which helped to mask the sensations and make the episodes wear off faster. Gaining my weight back and walks solved the muscle wasting. They had dissipated a lot after a year,….until I got Covid again in Dec. 2021. Then it started over again. I had intense headaches especially behind my right eye and eye socket and electric like shocks from my right eye socket wrapping around the back of my head. I’d also feel them in my legs. I saw long Covid eye specialist Mark Dinkin at Weill Cornell and long neuro Covid clinic at Northwestern, which took a year to get the appointment. They were learning from me, assuring me I wasn’t alone, but didn’t have answers. The tremor episodes lessened, but I developed episodes of falling over feeling like I was going to pass out. Sometimes I felt it laying down. On 5/21/23, I lost feeling in my left hand, arm, and left chin and lower lip for a few seconds. It felt like novacaine. I was diagnosed with TIA, but imaging showed nothing new. An MRA of my brain showed a new 5mm brain aneurysm in the left central artery. Transthoracic echo showed two new heart aneurysms. I don’t know if these are related to my tremors, but I suspect they are because I felt like the toll the vibrations took were wearing out my heart and injuring my brain. I often would get tiny micro blood clots in my left nostril and more recently a small amount of bright red blood from my nose. My occupation used to be researcher, but I can’t work because I was left with severe cognitive decline especially of my executive function after the 1st bout of Covid. After the 2nd bout, I could no longer take notes. They are fragmented. My blood pressure is often hard to control. I was given 2.5 mg of Amlodipine a few days ago that sent me into a full blown attack of the vibrations, worse than any episode to date!!!! They started with the numbness in my toes, moving up to my brain. The compulsion to pick the paint off the walls was back, but more intense than ever. A feeling of ravenous mess took over and I ran to the refrigerator grabbing anything to try to satiate myself or make it stop! Luckily, it only lasted an hour, but I swear that there is a connection between the way Amlodipine works and the tremors! Otherwise, I don’t get the tremors as often as I used to. I’m 5’8 and weight 248 lbs. Each episode of tremors/pain/symptoms is very scary for me and makes me feel hopeless and lose faith in the medical profession, but I self talk a lot, telling myself to not worry, but live each moment to the fullest now and try to enjoy whatever time I can, but life is not promised to any of us. That helps. I feel for everyone with these tremors.
Hi @fbaron and @covidtremors,
Thanks for being so open and honest about your experience, I genuinely appreciate it. It's unfortunate that we're seeing so many people grappling with these kinds of issues, but knowing that we're not alone in this can be a small source of comfort.
Like you, my father has felt misunderstood, even by his fellow doctors, which has been quite a challenge.
If I interpret your story correctlt @fbaron it seems that while some of your symptoms have receded or disappeared, but the neurological and muscular issues are not improving or worsening? That's a similarity with my dad's situation, and that is what is his biggest concertn.
Though it's difficult to ask, where does it end for people having these neuro/muscular problems (fasculations, muscle weakness, tremor, twitches, etc)? Can it become wheelchair-bound or worse because of these symptoms? Or perhaps on a more hopeful note, any stories of recovery or significant improvement on these specific issues?
Above all, I want to acknowledge how hard this must be for you all. It takes courage to share your story and I admire your resilience. I hope that the collective experiences can lead to more understanding and effective treatments.
Wishing you strength, and the very best of luck,
Maarten