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.
Thank you @maarten for your kind words. It is sad and comforting at the same time to know we are not alone and that our symptoms are not psychosomatic or caused by something as simple as “dehydration” or “anxiety”…
Some of my neurological/ musculoskeletal symptoms did resolve. Those were the internal vibrations and tremors in my left knee and transient numbness and tingling on my right side. I don’t think the remaining symptoms are getting worse. I would describe them as remaining the same or very very slowly improving while experiencing occasional setbacks. I must admit that despite my conscious efforts to block intrusive thoughts, I spend a good chunk of time fearing new muscle weakness or lack of coordination, or some other glaring neurological symptom marking disease progression. In the beginning, I felt confused about why my symptoms seemed to come in waves, and why I had good days and bad days. The consensus seems to be that these two steps forward and one step backward is the nature of long covid. I’ve come to accept those bad days as part of the recovery; the day before yesterday I felt pretty good, even got some light yard work done before having to take a 4-hour nap. Today I stayed in bed mostly while I struggled with muscle stiffness, aching, and myotonia in my calves.
I was never known for my optimism but from the extensive literature review I’ve been doing during my downtime I do believe a treatment -if not a cure- and a clinical recognition of the post covid neuromuscular phenomenon is closer than we think.
The challenge is to manage day to day and self advocate until then.
If it’s one thing I’ve learned from all this is how I feel today is not necessarily how I will feel for the rest of my life.
Hope this helps ❤️
Thank again for sharing your experiences. I understand that you're still struggling and facing tough days, but hearing about your neurological improvements does give us a bit of hope. May I ask, how long have you had been dealing with these neurological symptoms before any improvements?
Your statement, "how I feel today is not necessarily how I will feel for the rest of my life," special. I will try to remind my father that this might be the case for him as well. He's currently experiencing more setbacks than progress, but your words offer a hopeful perspective. I just hope that soon, he too can start taking more steps forward than back.
I admire your perseverance and the positivity you're managing to keep, despite your own acknowledgment that you're not naturally the most optimistic person. It's inspiring.
Let's stay in touch and continue to support each other in this journey.
Thank again for sharing your experiences. I understand that you're still struggling and facing tough days, but hearing about your neurological improvements does give us a bit of hope. May I ask, how long have you had been dealing with these neurological symptoms before any improvements?
Your statement, "how I feel today is not necessarily how I will feel for the rest of my life," special. I will try to remind my father that this might be the case for him as well. He's currently experiencing more setbacks than progress, but your words offer a hopeful perspective. I just hope that soon, he too can start taking more steps forward than back.
I admire your perseverance and the positivity you're managing to keep, despite your own acknowledgment that you're not naturally the most optimistic person. It's inspiring.
Let's stay in touch and continue to support each other in this journey.
Dear @maarten , I felt like I was neurologically worsening from September 25th 2022 until January 2023. The downward slope was steeper between September and mid October, then the worsening was present but at a slower rate until January. Between September and October, I had internal vibrations that lasted for hours at a time and I was maybe awake and alert 5-8 hours a day. I had toe cramps 2-3 times an hour that had me screaming from pain, each lasting 10-15 minutes no matter what I did to relieve them. At times I feared the cramps would dislocate my toes. From October to January vibrations started fluctuating in intensity and duration, until they gradually decreased in both but I developed tremors and daily migraines. Cramps stayed the same, even occasionally occurring in my arms and hands. My employer was kind enough to accommodate me to do admin type work from home yet at times I experienced mild cognitive impairment where I struggled to do simple math or had difficulty recalling names (brain fog?) and I had extreme fatigue that forced me to end my work day earlier and head straight to bed. From January to April I would describe my symptoms as staying the same with small fluctuations here and there. I stopped working altogether in March….During this time I could identify a pattern of symptoms where I’d be waking up with twitching in my calves, start doing light house work before crashing and having to take a nap for 4-5 hours. Frequently I was too tired to eat, never had enough energy to prepare my own meals. Since September anytime I was ill with a respiratory infection (common cold? perhaps another round of covid?) I’d got worse with neuromuscular symptoms specifically tremor, twitches (including a new eyelid twitching limited to while I was actively sick), EXTREME exhaustion and muscle spasms but returned to my 2023 baseline within a week of recovering. I am certain the rapid worsening of neurological symptoms were not medication, electrolyte or dehydration related. From mid April I have been very very slowly improving in terms of energy. Twitching is limited to calves, toe cramps are gone, so is the cognitive impairment. Tremor is less severe except after any physical exertion. For some reason I believe exertion and a diet rich in carbs worsens the twitching.
What I have found to help me with feeling powerless affected by a disease that is so poorly understood, is to try to observe my symptoms objectively and use my abundant free time to explore scientific explanations and hypothesis then later brainstorm those with my providers, suggesting more tests or trial of otherwise safe medications as done in clinical trials around the world to see if anything would work for me. I understand every member of this community has ended up here following the same path in their capacity and I strongly believe your dad being a physician might find it at least somewhat empowering to take the lead in his care even if it does not lead to finding an immediate treatment or cure. As a healthcare provider I found struggling with a mystery disease with no prognosis quite humbling. I can’t decide if it’s the symptoms today or the fear of the unknown symptoms tomorrow that I struggle with more.
Wish your dad and everyone here healing and insight
Fiona
Thank you for sharing more about your journey. Hearing about the areas where you've found improvement, particularly that the twitching is now just in your calves, gives a spark of hope. Unfortunately my father is experiencing twitches and tremor all over his body, in his arms, legs, and shoulder. Even the muscles in his throat seem affected, causing his voice to be a bit hoarse and making swallowing food more difficult.
I hope that you continue to recover and make even more progress in managing these symptoms. Sending positive thoughts your way.
Dear @maarten , I felt like I was neurologically worsening from September 25th 2022 until January 2023. The downward slope was steeper between September and mid October, then the worsening was present but at a slower rate until January. Between September and October, I had internal vibrations that lasted for hours at a time and I was maybe awake and alert 5-8 hours a day. I had toe cramps 2-3 times an hour that had me screaming from pain, each lasting 10-15 minutes no matter what I did to relieve them. At times I feared the cramps would dislocate my toes. From October to January vibrations started fluctuating in intensity and duration, until they gradually decreased in both but I developed tremors and daily migraines. Cramps stayed the same, even occasionally occurring in my arms and hands. My employer was kind enough to accommodate me to do admin type work from home yet at times I experienced mild cognitive impairment where I struggled to do simple math or had difficulty recalling names (brain fog?) and I had extreme fatigue that forced me to end my work day earlier and head straight to bed. From January to April I would describe my symptoms as staying the same with small fluctuations here and there. I stopped working altogether in March….During this time I could identify a pattern of symptoms where I’d be waking up with twitching in my calves, start doing light house work before crashing and having to take a nap for 4-5 hours. Frequently I was too tired to eat, never had enough energy to prepare my own meals. Since September anytime I was ill with a respiratory infection (common cold? perhaps another round of covid?) I’d got worse with neuromuscular symptoms specifically tremor, twitches (including a new eyelid twitching limited to while I was actively sick), EXTREME exhaustion and muscle spasms but returned to my 2023 baseline within a week of recovering. I am certain the rapid worsening of neurological symptoms were not medication, electrolyte or dehydration related. From mid April I have been very very slowly improving in terms of energy. Twitching is limited to calves, toe cramps are gone, so is the cognitive impairment. Tremor is less severe except after any physical exertion. For some reason I believe exertion and a diet rich in carbs worsens the twitching.
What I have found to help me with feeling powerless affected by a disease that is so poorly understood, is to try to observe my symptoms objectively and use my abundant free time to explore scientific explanations and hypothesis then later brainstorm those with my providers, suggesting more tests or trial of otherwise safe medications as done in clinical trials around the world to see if anything would work for me. I understand every member of this community has ended up here following the same path in their capacity and I strongly believe your dad being a physician might find it at least somewhat empowering to take the lead in his care even if it does not lead to finding an immediate treatment or cure. As a healthcare provider I found struggling with a mystery disease with no prognosis quite humbling. I can’t decide if it’s the symptoms today or the fear of the unknown symptoms tomorrow that I struggle with more.
Wish your dad and everyone here healing and insight
Fiona
Hi @fbaron. Fiona just wanted to say thank you so much for sharing your challenges from a healthcare professional standpoint that helps validate all of us and give strength and hope for a healing future!🌈
YES. I am a 53 y/o woman who has always been healthy, athletic and active. I had a very mild case of Covid in January of 2022- almost no symptoms except for loss of taste and smell for 4 days. I recovered and felt fine, until September 2022. I started feeling SUPER shaky on the inside, exhausted and mentally foggy. My hand movements felt like a Parkinson's tremor although it wasn't visible. I went to my doctor and told him I thought I had MS. He referred me to a cardiologist, neurologist and auto immune specialist. They did bloodwork, muscle and nerve tests, stress tests and MRI. They all came back normal, although I was diagnosed with POTS and Ehlers Danlos Syndrome. It's July now and the last 10 months have been filled with internal tremors, vibrations, exhaustion, clumsiness and brain fog. I am embarrassed to have conversation with people because I'm afraid I'll sound ignorant. I nap every single day. I have to or I won't make it until evening. I feel my most normal when I'm playing tennis. The running and big motions of swinging my racquet aren't affected by my symptoms.
When lying in bed at a night, I can feel the internal vibrations and I have random muscle spasms and twitches throughout my body. I don't have any pain at all. This is the weirdest thing I have experience in my life.
YES. I am a 53 y/o woman who has always been healthy, athletic and active. I had a very mild case of Covid in January of 2022- almost no symptoms except for loss of taste and smell for 4 days. I recovered and felt fine, until September 2022. I started feeling SUPER shaky on the inside, exhausted and mentally foggy. My hand movements felt like a Parkinson's tremor although it wasn't visible. I went to my doctor and told him I thought I had MS. He referred me to a cardiologist, neurologist and auto immune specialist. They did bloodwork, muscle and nerve tests, stress tests and MRI. They all came back normal, although I was diagnosed with POTS and Ehlers Danlos Syndrome. It's July now and the last 10 months have been filled with internal tremors, vibrations, exhaustion, clumsiness and brain fog. I am embarrassed to have conversation with people because I'm afraid I'll sound ignorant. I nap every single day. I have to or I won't make it until evening. I feel my most normal when I'm playing tennis. The running and big motions of swinging my racquet aren't affected by my symptoms.
When lying in bed at a night, I can feel the internal vibrations and I have random muscle spasms and twitches throughout my body. I don't have any pain at all. This is the weirdest thing I have experience in my life.
I can relate to your issues as I have been dealing with buzzing, tremors, muscle spasms and just shaky inside which started May 2022. I’ve had all the testing you have had with no explanation. I’ve had 3 vaccines and a mild case of Covid. This was all before my issues started. I feel very lucky right now I am dealing with a buzzing tremor feeling in my legs affecting me around 6:00 pm everyday and lasts all night. I am able to ignore for the most part and hopefully go away with time like my other issues. I no longer wake up in morning with muscle twitches in my legs and arms. So weird! The internal vibrations were the worse since you don’t see anything. I have told people and no one has heard of this. So I don’t even talk about it anymore, I really believe this has something to do with the Covid vaccines or having the virus. Doctors don’t know what to say when they can’t find anything. So I wish you continued healing and hopefully it will just go away soon.
Hi to all. Ah ha moment? Just read these recent posts and recalling so many posts with my own journey of our type of movements bringing on/ affecting symptoms. I have begged to be tested thru exercise rehab and seems for me small repetitive movement like writing, typing, reading, talking, unfortunately thinking, brings symptoms on. Others sharing wide difference in tolerated activity is hopefully informing doctors and those researching posts to see this correlation and inform healthcare systems that individual testing is needed to create healing possible for all!🌈
first of all thank you for all your accounts and also the hope & encouragement. I've been dealing with internal tremors and muscle spasms for a exactly year now. Was fully vaccinated and had a mild case of Covid. Symptoms started circa 2 weeks after the initial symptoms went away. First I started having nerve pain in my toes, then slowly my feet and fingers started turning numb with strange tingling and the numbness crawled up my body until it was basically everywhere, even my tongue. Had me scared as hell, so went to the hospital multiple times, got tested for GBS, which it wasn't thankfully.
That's roughly when the muscle twiting and internal tremors also started. It felt like I was a phone on vibrate, except it wasn't visbile from the outside. However, I sleep with earplugs and when I do I can /hear/ the vibrations.
I also felt insanely on alert, as if I had had too much coffee constantly. Doctors couldn't figure out what it was, neurologist gave me Gabapentin, which helped the nerve pain a bit but had me constantly dizzy and tired, so I stopped it. Neurologist tried to put me on antidepressants but that only worsened my inner tremors and made me feel even more insane/alert (though I am told that that is a normal side effect of anti-depressants). I went back to the neurologist, and he told me to stop it. Additionally I also had nerve pain on my legs, arms, chest daily, especially when trying to go to bed. All symptoms were worst when trying to rest/laying down. Additionally I experienced the worst depression right after Covid I ever had in my life. (But that slowly went away, though it comes back some times.) I also still have memory issues and heart issues (getting a scan in September).
NOW, what helped me esp with the twitching, nerve pain and inner vibrations was
1) CBD oil - outer application for the nerve pain and swallowing a few drops before bed for sleeping. The latter took a while to take effect but then really helped.
2) for anyone who is struggling with anxiety and the inner vibrations and muscle twitching (mine is not severe but keeps me awake which is super harrowing) I can HIGHLY recommend a weighted blanket. I use a 6kg one and I'm ca 57kg heavy (sorry European). It just keeps your body in place which helped me TONS with sleeping.
3) I am also taking a lot of vitamins, most notably a B complex mixture which has helped with fatigue, C, D3 and K1 together, magnesium before bed, and I also did a 2-month Q10 round.
The nerve pain lasted for circa 8 months and has almost completely disappeared. It only returns when I am very exhausted or sick or scared/emotional but now usually only in my arms and feet and cbd oil helps alleviate it.
I still have muscle twitching everywhere everyday, often in my face, but can ignore them, though I hope I won't have them forever. The inner tremors are manageable with the weighted blanket, though also constant.
I will def try to see a neurologist again, too.
Also, one of you mentioned that the inner vibrations were caused by intense emotion and I had that one time as well, which was kind of crazy. The twitching and inner vibrations also seemed to get worse after exercise/exhastion, but I am currently able to do half-time studying (I stand/walk the whole day). Though I still struggle with fatigue almost daily unless I sleep 10+ hours. I also can't drink coffee or black tea anymore or the feeling in my chest/the vibrations get worse -- though I imagine that might have to do with my heart issues as well. (Green tea is okay.)
Some days are worse than others, sometimes the symptoms return badly, and some days are better and I can almost pretend not to be carrying this.
Reading your all's accounts gives me comfort to know that I am not alone, which was certainly one of the scariest things I've ever felt when this all started, and I hope my account can give a little hope or help to some of you. Please stay strong and give yourselves time to recover, however slow it may be. Sending you all love.
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Thank you @maarten for your kind words. It is sad and comforting at the same time to know we are not alone and that our symptoms are not psychosomatic or caused by something as simple as “dehydration” or “anxiety”…
Some of my neurological/ musculoskeletal symptoms did resolve. Those were the internal vibrations and tremors in my left knee and transient numbness and tingling on my right side. I don’t think the remaining symptoms are getting worse. I would describe them as remaining the same or very very slowly improving while experiencing occasional setbacks. I must admit that despite my conscious efforts to block intrusive thoughts, I spend a good chunk of time fearing new muscle weakness or lack of coordination, or some other glaring neurological symptom marking disease progression. In the beginning, I felt confused about why my symptoms seemed to come in waves, and why I had good days and bad days. The consensus seems to be that these two steps forward and one step backward is the nature of long covid. I’ve come to accept those bad days as part of the recovery; the day before yesterday I felt pretty good, even got some light yard work done before having to take a 4-hour nap. Today I stayed in bed mostly while I struggled with muscle stiffness, aching, and myotonia in my calves.
I was never known for my optimism but from the extensive literature review I’ve been doing during my downtime I do believe a treatment -if not a cure- and a clinical recognition of the post covid neuromuscular phenomenon is closer than we think.
The challenge is to manage day to day and self advocate until then.
If it’s one thing I’ve learned from all this is how I feel today is not necessarily how I will feel for the rest of my life.
Hope this helps ❤️
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2 ReactionsHi @fbaron,
Thank again for sharing your experiences. I understand that you're still struggling and facing tough days, but hearing about your neurological improvements does give us a bit of hope. May I ask, how long have you had been dealing with these neurological symptoms before any improvements?
Your statement, "how I feel today is not necessarily how I will feel for the rest of my life," special. I will try to remind my father that this might be the case for him as well. He's currently experiencing more setbacks than progress, but your words offer a hopeful perspective. I just hope that soon, he too can start taking more steps forward than back.
I admire your perseverance and the positivity you're managing to keep, despite your own acknowledgment that you're not naturally the most optimistic person. It's inspiring.
Let's stay in touch and continue to support each other in this journey.
Take care, and wishing you further recovery,
Maarten
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1 ReactionDear @maarten , I felt like I was neurologically worsening from September 25th 2022 until January 2023. The downward slope was steeper between September and mid October, then the worsening was present but at a slower rate until January. Between September and October, I had internal vibrations that lasted for hours at a time and I was maybe awake and alert 5-8 hours a day. I had toe cramps 2-3 times an hour that had me screaming from pain, each lasting 10-15 minutes no matter what I did to relieve them. At times I feared the cramps would dislocate my toes. From October to January vibrations started fluctuating in intensity and duration, until they gradually decreased in both but I developed tremors and daily migraines. Cramps stayed the same, even occasionally occurring in my arms and hands. My employer was kind enough to accommodate me to do admin type work from home yet at times I experienced mild cognitive impairment where I struggled to do simple math or had difficulty recalling names (brain fog?) and I had extreme fatigue that forced me to end my work day earlier and head straight to bed. From January to April I would describe my symptoms as staying the same with small fluctuations here and there. I stopped working altogether in March….During this time I could identify a pattern of symptoms where I’d be waking up with twitching in my calves, start doing light house work before crashing and having to take a nap for 4-5 hours. Frequently I was too tired to eat, never had enough energy to prepare my own meals. Since September anytime I was ill with a respiratory infection (common cold? perhaps another round of covid?) I’d got worse with neuromuscular symptoms specifically tremor, twitches (including a new eyelid twitching limited to while I was actively sick), EXTREME exhaustion and muscle spasms but returned to my 2023 baseline within a week of recovering. I am certain the rapid worsening of neurological symptoms were not medication, electrolyte or dehydration related. From mid April I have been very very slowly improving in terms of energy. Twitching is limited to calves, toe cramps are gone, so is the cognitive impairment. Tremor is less severe except after any physical exertion. For some reason I believe exertion and a diet rich in carbs worsens the twitching.
What I have found to help me with feeling powerless affected by a disease that is so poorly understood, is to try to observe my symptoms objectively and use my abundant free time to explore scientific explanations and hypothesis then later brainstorm those with my providers, suggesting more tests or trial of otherwise safe medications as done in clinical trials around the world to see if anything would work for me. I understand every member of this community has ended up here following the same path in their capacity and I strongly believe your dad being a physician might find it at least somewhat empowering to take the lead in his care even if it does not lead to finding an immediate treatment or cure. As a healthcare provider I found struggling with a mystery disease with no prognosis quite humbling. I can’t decide if it’s the symptoms today or the fear of the unknown symptoms tomorrow that I struggle with more.
Wish your dad and everyone here healing and insight
Fiona
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2 ReactionsHi Fiona (@fbaron),
Thank you for sharing more about your journey. Hearing about the areas where you've found improvement, particularly that the twitching is now just in your calves, gives a spark of hope. Unfortunately my father is experiencing twitches and tremor all over his body, in his arms, legs, and shoulder. Even the muscles in his throat seem affected, causing his voice to be a bit hoarse and making swallowing food more difficult.
I hope that you continue to recover and make even more progress in managing these symptoms. Sending positive thoughts your way.
Take care,
Maarten
Hi @fbaron. Fiona just wanted to say thank you so much for sharing your challenges from a healthcare professional standpoint that helps validate all of us and give strength and hope for a healing future!🌈
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1 ReactionHave you tried infrared light therapy?
YES. I am a 53 y/o woman who has always been healthy, athletic and active. I had a very mild case of Covid in January of 2022- almost no symptoms except for loss of taste and smell for 4 days. I recovered and felt fine, until September 2022. I started feeling SUPER shaky on the inside, exhausted and mentally foggy. My hand movements felt like a Parkinson's tremor although it wasn't visible. I went to my doctor and told him I thought I had MS. He referred me to a cardiologist, neurologist and auto immune specialist. They did bloodwork, muscle and nerve tests, stress tests and MRI. They all came back normal, although I was diagnosed with POTS and Ehlers Danlos Syndrome. It's July now and the last 10 months have been filled with internal tremors, vibrations, exhaustion, clumsiness and brain fog. I am embarrassed to have conversation with people because I'm afraid I'll sound ignorant. I nap every single day. I have to or I won't make it until evening. I feel my most normal when I'm playing tennis. The running and big motions of swinging my racquet aren't affected by my symptoms.
When lying in bed at a night, I can feel the internal vibrations and I have random muscle spasms and twitches throughout my body. I don't have any pain at all. This is the weirdest thing I have experience in my life.
-
Like -
Helpful -
Hug
1 ReactionI can relate to your issues as I have been dealing with buzzing, tremors, muscle spasms and just shaky inside which started May 2022. I’ve had all the testing you have had with no explanation. I’ve had 3 vaccines and a mild case of Covid. This was all before my issues started. I feel very lucky right now I am dealing with a buzzing tremor feeling in my legs affecting me around 6:00 pm everyday and lasts all night. I am able to ignore for the most part and hopefully go away with time like my other issues. I no longer wake up in morning with muscle twitches in my legs and arms. So weird! The internal vibrations were the worse since you don’t see anything. I have told people and no one has heard of this. So I don’t even talk about it anymore, I really believe this has something to do with the Covid vaccines or having the virus. Doctors don’t know what to say when they can’t find anything. So I wish you continued healing and hopefully it will just go away soon.
Hi to all. Ah ha moment? Just read these recent posts and recalling so many posts with my own journey of our type of movements bringing on/ affecting symptoms. I have begged to be tested thru exercise rehab and seems for me small repetitive movement like writing, typing, reading, talking, unfortunately thinking, brings symptoms on. Others sharing wide difference in tolerated activity is hopefully informing doctors and those researching posts to see this correlation and inform healthcare systems that individual testing is needed to create healing possible for all!🌈
Hi everyone,
first of all thank you for all your accounts and also the hope & encouragement. I've been dealing with internal tremors and muscle spasms for a exactly year now. Was fully vaccinated and had a mild case of Covid. Symptoms started circa 2 weeks after the initial symptoms went away. First I started having nerve pain in my toes, then slowly my feet and fingers started turning numb with strange tingling and the numbness crawled up my body until it was basically everywhere, even my tongue. Had me scared as hell, so went to the hospital multiple times, got tested for GBS, which it wasn't thankfully.
That's roughly when the muscle twiting and internal tremors also started. It felt like I was a phone on vibrate, except it wasn't visbile from the outside. However, I sleep with earplugs and when I do I can /hear/ the vibrations.
I also felt insanely on alert, as if I had had too much coffee constantly. Doctors couldn't figure out what it was, neurologist gave me Gabapentin, which helped the nerve pain a bit but had me constantly dizzy and tired, so I stopped it. Neurologist tried to put me on antidepressants but that only worsened my inner tremors and made me feel even more insane/alert (though I am told that that is a normal side effect of anti-depressants). I went back to the neurologist, and he told me to stop it. Additionally I also had nerve pain on my legs, arms, chest daily, especially when trying to go to bed. All symptoms were worst when trying to rest/laying down. Additionally I experienced the worst depression right after Covid I ever had in my life. (But that slowly went away, though it comes back some times.) I also still have memory issues and heart issues (getting a scan in September).
NOW, what helped me esp with the twitching, nerve pain and inner vibrations was
1) CBD oil - outer application for the nerve pain and swallowing a few drops before bed for sleeping. The latter took a while to take effect but then really helped.
2) for anyone who is struggling with anxiety and the inner vibrations and muscle twitching (mine is not severe but keeps me awake which is super harrowing) I can HIGHLY recommend a weighted blanket. I use a 6kg one and I'm ca 57kg heavy (sorry European). It just keeps your body in place which helped me TONS with sleeping.
3) I am also taking a lot of vitamins, most notably a B complex mixture which has helped with fatigue, C, D3 and K1 together, magnesium before bed, and I also did a 2-month Q10 round.
The nerve pain lasted for circa 8 months and has almost completely disappeared. It only returns when I am very exhausted or sick or scared/emotional but now usually only in my arms and feet and cbd oil helps alleviate it.
I still have muscle twitching everywhere everyday, often in my face, but can ignore them, though I hope I won't have them forever. The inner tremors are manageable with the weighted blanket, though also constant.
I will def try to see a neurologist again, too.
Also, one of you mentioned that the inner vibrations were caused by intense emotion and I had that one time as well, which was kind of crazy. The twitching and inner vibrations also seemed to get worse after exercise/exhastion, but I am currently able to do half-time studying (I stand/walk the whole day). Though I still struggle with fatigue almost daily unless I sleep 10+ hours. I also can't drink coffee or black tea anymore or the feeling in my chest/the vibrations get worse -- though I imagine that might have to do with my heart issues as well. (Green tea is okay.)
Some days are worse than others, sometimes the symptoms return badly, and some days are better and I can almost pretend not to be carrying this.
Reading your all's accounts gives me comfort to know that I am not alone, which was certainly one of the scariest things I've ever felt when this all started, and I hope my account can give a little hope or help to some of you. Please stay strong and give yourselves time to recover, however slow it may be. Sending you all love.
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