I have had long covid twice now. The weakness and body shakes are worse this time around. There is no reason while they come on or i tried an antidepressant and it instantly brought an episode on.
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?!
Hi everyone, I am brand new on Mayo Connect and am actually heading to Mayo Clinic next month to be seen for Post-Covid Syndrome. I've had a bit of success with my local neurologist with symptom management around my tremors and muscle spasms from small fiber neuropathy that started a couple of months ago through medication treatment.
Hi I would love to know more also! I have also been struggling with this since September 2023. Been to several doctors and no one believes me or listens 🙁
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?!
I also contracted COVID in Dec 2020 and about a month after recovering started having Long-hauler symptoms in the form of muscle tremors and spasms that start as head bobs or stomach spasms and can turn into full body tremors (requiring I use a cane for balance to walk) and severe stuttering in my speech and mental blocking. I’ve struggled with these episodically for three years running now. Last Spring a friend in nursing got me on L-Theanine, which is an enzyme extract from green and black tea that has a calming effect. I take 200mg once in the morning and once at night and it really helps, along with good sleep—which requires I take Melatonin & follow a sleep prep regimen (called “sleep hygiene). This includes wearing yellow lens glasses in the evening to block blue light (TVs, cellphones, computer screens all use blue light, which triggers our optic nerve tuned to wake us at dawn), and getting my mind off of anything that causes worry and mental rumination (tune out anything that keeps the brain going). The consistent good sleep has been the hardest to maintain and the tremors come back during times of high stress and over exertion, so I’ve also finally enrolled in Cleveland Clinic’s reCOVery Clinic for Long-haulers. They are taking me seriously, have diagnosed me with Functional Movement Disorder and migraines (that manifest as nerve irritation rather than pain) and are helping figure out best ways to address my symptoms. Hope this all helps.
Thank you for sharing this. I am having the same symptoms once in a while, but last year it was daily. It's been very hard to explain this to doctors and family members. It's good to know I'm not alone. My spasms got to a point that I wasn't able to pass solid food and my esophagus had to be dilated. Thank you again for sharing!
Since I haven’t been here for a while, I thought it was time for an update: the dry cough and SOB that I had since June 2022 and was only controlled by steroid inhalers are gone. I have been off my inhaler for 3 months now, tremors are gone, spasms were gone but made a comeback during my recent bout of mystery respiratory infection, and left as soon as I recovered. As for calf twitching I still have them, still I am most aware of them when in bed or very still. They still occasionally get worse for a day or two and return to usual afterwards. I must say that I was looking at a video I had taken of the twitches last spring and I feel like the intensity has decreased. It is such a slow paced decline that I only noticed it when comparing to what they looked like almost a year ago.
Also I came across this today : https://www.medscape.com/viewarticle/five-bold-predictions-long-covid-2024-2024a10001te
May we all find hope and healing soon.
I had covid for first time in August. Had 4th vaccine two weeks before so fully vaccinated. No health issues before covid. 2nd & 3rd days of covid had what felt like electric shock going through body. A few days later developed tremors, twitches and body jerks. Mostly in evening before & after sleeping. Two weeks into covid went to Dr to find during covid I developed kidney failure- stage 3b. Never had any kidney problems before covid. Kidney’s bounced back- not to normal, but very managable. Tremors have continued and although not painful they do make sleeping difficult. My doctor wants me to see a neurologist locally, but I am hesitant because I am not sure anyone locally would have any idea. I also suspect they will think it is in my head! I have had tremors off and on now for around 70 days. Hoping they will simply go away. I do not know anyone with this symptom so just trying to roll with it. It is a bit scary… I do not know if go just ignore or if it could morph into something worse?
I've had problems since February of 2020. I got C19 early on, still suffering from LC.
I have exsersize induced Anaphylaxis, my throat closes off. I've checked out okay on every test. Fired my lung and heart Dr's and now my Neurologist. My family Dr is more knowledgeable than all of the specialists. I know it's dysautonomia and will treat it myself. I'm tired!
Thanks for all of this information.
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.
Unfortunately, we seem to be part of a class that has been left behind. I understand the world wants to move on from Covid, but every day is our own fully blown, surging pandemic. My neurologist did not find it strange that I couldn’t stand on 1 foot for longer Than one second, never mind the fact it took me a few tries to discern between my left and my right foot! Furthermore, Barak Obama is NOT the current president of the United States, nor was, she concerned that I didn’t know what hospital I was in… Mind you, it was the hospital I was born in! I was not told that the MRI scans of my brain showed brain lesions, and sadly it feels like I am the last one to know that things are being stripped away from me. I too, was very healthy and active at 48 years old, and now seemingly where you are at as well. Nothing in my body seems to function, normally, and the lack of understanding or desire to be around other people is defeating. If nothing else, we can support one another as a unified community and remind each other, that we are not alone. My love, understanding, and hope go out to all those who are affected as well.
Unfortunately, we seem to be part of a class that has been left behind. I understand the world wants to move on from Covid, but every day is our own fully blown, surging pandemic. My neurologist did not find it strange that I couldn’t stand on 1 foot for longer Than one second, never mind the fact it took me a few tries to discern between my left and my right foot! Furthermore, Barak Obama is NOT the current president of the United States, nor was, she concerned that I didn’t know what hospital I was in… Mind you, it was the hospital I was born in! I was not told that the MRI scans of my brain showed brain lesions, and sadly it feels like I am the last one to know that things are being stripped away from me. I too, was very healthy and active at 48 years old, and now seemingly where you are at as well. Nothing in my body seems to function, normally, and the lack of understanding or desire to be around other people is defeating. If nothing else, we can support one another as a unified community and remind each other, that we are not alone. My love, understanding, and hope go out to all those who are affected as well.
I'm so sorry. You have my sympathy in your struggles.
I would like to mention, though, that I am now well again! I'm not sure if this might help you or anyone else, but I will tell you about the surgery that brought me back to normal.
It had been nearly 2 years of struggles, so many tests, specialists, 3 neurologists, etc. In the end, a neurologist saw my three brain MRIs and said there was a "very impressive" sinus infection going on in my right sphenoid sinus (behind my eyes and nose). It was so big and so bad that it had begun to move the bones. She said it was a "very unusual presentation", but it was putting pressure on my brainstem and cerebellum, which was causing my extreme vertigo and balance issues, my incoordination, my tremendous, debilitating headaches, my tremors, my confusion, etc. The MRIs had shown this issue all along, but everyone else had missed it. It showed as completely opaque on my MRI in the right sphenoid sinus. I saw a new ENT who completely agreed with my 3rd neurologist and he said I needed surgery.
I had a very extensive, 2-hour long sinus surgery. After the surgery, the ENT told me I had a fungal ball in my sphenoid sinus. The only way to get rid of that is surgery. I had issues and infection in ALL of my b sinuses (sphenoid, maxillary, frontal, ethmoid). I even had a septal deviation that needed surgery at the same time, so that was done as well. It took a couple of months before I was really healed up, but I am telling you, the vertigo is gone, the headaches are gone, my mobility, balance, and coordination are back ... and so is my energy and speed in walking!!!
I no longer walk like I'm 99 years old (at a snail's pace). I can walk fast or run!
God is so good and faithful. He got me through these terrible, life-changing struggles and led me to the right specialists to get me back to normal.
I pray that this information will help you or someone else.
Keep pushing, keep advocating for yourself, keep getting 2nd and 3rd opinions until someone listens, cares, and figures out what's gong on with you.
Connect
Connect
Like
Helpful
Hug
I have had long covid twice now. The weakness and body shakes are worse this time around. There is no reason while they come on or i tried an antidepressant and it instantly brought an episode on.
-
Like -
Helpful -
Hug
1 ReactionI 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?!
-
Like -
Helpful -
Hug
1 ReactionHi I would love to know more also! I have also been struggling with this since September 2023. Been to several doctors and no one believes me or listens 🙁
-
Like -
Helpful -
Hug
1 ReactionI also contracted COVID in Dec 2020 and about a month after recovering started having Long-hauler symptoms in the form of muscle tremors and spasms that start as head bobs or stomach spasms and can turn into full body tremors (requiring I use a cane for balance to walk) and severe stuttering in my speech and mental blocking. I’ve struggled with these episodically for three years running now. Last Spring a friend in nursing got me on L-Theanine, which is an enzyme extract from green and black tea that has a calming effect. I take 200mg once in the morning and once at night and it really helps, along with good sleep—which requires I take Melatonin & follow a sleep prep regimen (called “sleep hygiene). This includes wearing yellow lens glasses in the evening to block blue light (TVs, cellphones, computer screens all use blue light, which triggers our optic nerve tuned to wake us at dawn), and getting my mind off of anything that causes worry and mental rumination (tune out anything that keeps the brain going). The consistent good sleep has been the hardest to maintain and the tremors come back during times of high stress and over exertion, so I’ve also finally enrolled in Cleveland Clinic’s reCOVery Clinic for Long-haulers. They are taking me seriously, have diagnosed me with Functional Movement Disorder and migraines (that manifest as nerve irritation rather than pain) and are helping figure out best ways to address my symptoms. Hope this all helps.
-
Like -
Helpful -
Hug
1 ReactionThank you for sharing this. I am having the same symptoms once in a while, but last year it was daily. It's been very hard to explain this to doctors and family members. It's good to know I'm not alone. My spasms got to a point that I wasn't able to pass solid food and my esophagus had to be dilated. Thank you again for sharing!
-
Like -
Helpful -
Hug
3 ReactionsSince I haven’t been here for a while, I thought it was time for an update: the dry cough and SOB that I had since June 2022 and was only controlled by steroid inhalers are gone. I have been off my inhaler for 3 months now, tremors are gone, spasms were gone but made a comeback during my recent bout of mystery respiratory infection, and left as soon as I recovered. As for calf twitching I still have them, still I am most aware of them when in bed or very still. They still occasionally get worse for a day or two and return to usual afterwards. I must say that I was looking at a video I had taken of the twitches last spring and I feel like the intensity has decreased. It is such a slow paced decline that I only noticed it when comparing to what they looked like almost a year ago.
Also I came across this today :
https://www.medscape.com/viewarticle/five-bold-predictions-long-covid-2024-2024a10001te
May we all find hope and healing soon.
@bshack I am having the same issue for years with Tremors and body jerks. Any resolution? Any treatment?
Thanks!
-
Like -
Helpful -
Hug
1 ReactionI've had problems since February of 2020. I got C19 early on, still suffering from LC.
I have exsersize induced Anaphylaxis, my throat closes off. I've checked out okay on every test. Fired my lung and heart Dr's and now my Neurologist. My family Dr is more knowledgeable than all of the specialists. I know it's dysautonomia and will treat it myself. I'm tired!
Thanks for all of this information.
Unfortunately, we seem to be part of a class that has been left behind. I understand the world wants to move on from Covid, but every day is our own fully blown, surging pandemic. My neurologist did not find it strange that I couldn’t stand on 1 foot for longer Than one second, never mind the fact it took me a few tries to discern between my left and my right foot! Furthermore, Barak Obama is NOT the current president of the United States, nor was, she concerned that I didn’t know what hospital I was in… Mind you, it was the hospital I was born in! I was not told that the MRI scans of my brain showed brain lesions, and sadly it feels like I am the last one to know that things are being stripped away from me. I too, was very healthy and active at 48 years old, and now seemingly where you are at as well. Nothing in my body seems to function, normally, and the lack of understanding or desire to be around other people is defeating. If nothing else, we can support one another as a unified community and remind each other, that we are not alone. My love, understanding, and hope go out to all those who are affected as well.
I'm so sorry. You have my sympathy in your struggles.
I would like to mention, though, that I am now well again! I'm not sure if this might help you or anyone else, but I will tell you about the surgery that brought me back to normal.
It had been nearly 2 years of struggles, so many tests, specialists, 3 neurologists, etc. In the end, a neurologist saw my three brain MRIs and said there was a "very impressive" sinus infection going on in my right sphenoid sinus (behind my eyes and nose). It was so big and so bad that it had begun to move the bones. She said it was a "very unusual presentation", but it was putting pressure on my brainstem and cerebellum, which was causing my extreme vertigo and balance issues, my incoordination, my tremendous, debilitating headaches, my tremors, my confusion, etc. The MRIs had shown this issue all along, but everyone else had missed it. It showed as completely opaque on my MRI in the right sphenoid sinus. I saw a new ENT who completely agreed with my 3rd neurologist and he said I needed surgery.
I had a very extensive, 2-hour long sinus surgery. After the surgery, the ENT told me I had a fungal ball in my sphenoid sinus. The only way to get rid of that is surgery. I had issues and infection in ALL of my b sinuses (sphenoid, maxillary, frontal, ethmoid). I even had a septal deviation that needed surgery at the same time, so that was done as well. It took a couple of months before I was really healed up, but I am telling you, the vertigo is gone, the headaches are gone, my mobility, balance, and coordination are back ... and so is my energy and speed in walking!!!
I no longer walk like I'm 99 years old (at a snail's pace). I can walk fast or run!
God is so good and faithful. He got me through these terrible, life-changing struggles and led me to the right specialists to get me back to normal.
I pray that this information will help you or someone else.
Keep pushing, keep advocating for yourself, keep getting 2nd and 3rd opinions until someone listens, cares, and figures out what's gong on with you.
Blessings!
-
Like -
Helpful -
Hug
2 Reactions