Post COVID: Anyone experiencing internal vibrations?

4 days after getting the vaccine I became suddenly ill. Lost vision in my left eye briefly, headache, woke up in the morning with acute vertigo, dizziness, difficulty speaking, blurred vision, internal tremor, electrical malfunction through my body down arms and legs. Balance issue, visual issue and brain buzzing, brain fullness, tinnitusy sensation so extreme I would have daily crashes of sleep with all these symptoms at once. I began falling asleep and waking up with this horrible internal tremor with also low grade fever. I lost my ability to talk properly, trying to get words out in a sentence became difficult. Word finding, memory trouble. Went from working out at orange theory and going for 5-10 km runs to having to hold onto my husbands arm for support when walking. I had heart palpitations even lying down and when walking even on a flat surface. I also got a weird rash that came and went. I had a litany of overwhelming symptoms that was difficult to describe. If you can imagine my GP told me my sudden onset illness wasn’t vaccine related and encouraged me to take the second one a couple of months later despite the fact I hadn’t been able to return to work because of how sick I was. All the specialists assured me the vaccine was safe and effective. So got the second one based on advice and within 24 hours I was in an ambulance with severe chest pain, sweating profusely and feeling sick and nauseous. Given nitro under my tongue and the attending denied my symptoms had anything to do with the vaccine. Chest X-ray appeared normal so I went home. It has been 4 years of hell. I’ve never been able to return to my career. I to this day wake up to a horrible internal tremor vibration and tinnitus- brain fog feeling. Often with stiff hands and arms- like muscles are flexing. I try to go for a walk but even this morning I got bad vertigo/dizziness with tinnitus and had to come home. I crash with these symptoms everyday. After the first year I was dx with MECFS- I had worked in healthcare for 23 years and had never heard of this. It sounded like a partial fit to my symptoms but did t explain all. The term ‘brain fog didn’t feel exactly right compared to my symptoms but I struggled to describe what my brain felt like. Also didn’t explain the tremor, daily swollen neck glands, on and off rashes on my legs arms chest and face, fevers, trouble talking and reading. The pain came on last year when the neurologist took me off Amitryptiline which I had been taking for 6 years for migraines. I had begun falling and feeling neuropathy in my fingers and legs. At one point my legs became so heavy one morning I couldn’t move them. Stayed like this all day to the point I went to ER. Neurologist took me off the amitryptaline and within two-3 weeks my heavy legs, neuropathy and falling for no reason improved. I get neuropathy now and then but way more manageable. I was also dx with MCAS at the same time. I have also now been recently dx with Lupus SLE and Sjogren’s. This is in Jan 2025. In 2022 I was dx with a positive ANA showing Sjogren’s the Rhumatologist had me spit in a cup and said I had too much spit so didn’t have sjogren’s. I had also tested positive for Lupus Anticoagulant but they assured me that ‘healthy people can have a positive test’…..huh? Except I wasn’t a healthy person. Another 1.5 years go by and I’m suffering daily. I begged my GP to send me to a new Rhumatologist who in Dec 2024 sent me for more tests. I’m losing my hair by this time and losing weight for no reason, can’t exercise because of PEM and crashing. My muscles look like their wasting and I’ve got these indentations now in my arms, wrists, hands and legs and ankles and since coming off the amitryptaline I have pain like I’ve never had. I found out in January 2025 I have Lupus SLE. My speaking improved but have a hard time reading and concentrating. I fall into a terrible crash. I have started on Plaquenal but afraid to go on Prednisone. I’ve been on Paquenal for 9 weeks and it has taken the edge off the pain but not enough. I have pain in my legs, forearms and knuckles in my hands. The worst pain is in my rib age and when I breathe in my back and side ribs hurt. The pain will go from one place to another within hours. Because of the vaccine, I have never recovered. I struggle everyday and I’m so disappointed in the medical community who have not provided the care that I need. The care starts with being honest about how the vaccine can do this to someone. If research isn’t done than I don’t have a future. The denial and gaslighting I’ve endured for the past 4 years has been almost as painful as my illness. It didn’t have to be this way. But it added a whole other hurtful and impactful, stressful layer that has caused double harm. I’m exhausted and fight everyday to keep going and try to stay hopeful for a future but it’s hard, especially when I dread going to sleep and waking up with this terrible tremor that no one has an explanation for. Is it spike in my brain? In my body? In my CNS? Not a question my GP or any of my doctors can answer. Nor do they have any interest in answering. This is the most isolating illness I’ve ever experienced. No support whatsoever unless I jump into a Long Covid chat . Thank you 🙏 Tracy

Hi @tls5alex. Tracy I am so sorry you've gone thru so much. Your story so mimics my journey with my prior healthcare profession, my personal healthcare system insisting vaccines necessary despite my past EBV history which thankfully I had many years symptom free being very weight lifting healthy/ always on my feet active before this began in 2021 with my first vaccine, 2nd vaccine 2022 with covid diagnosed within couple of weeks, post covid diagnosis journey, and then covid diagnosed again 2024 without ever recovering from post covid the first go around. I so relate to all your symptoms, indescribable push into ground fatigue, different types rashes, fevers, body pains/ changes, mcas/ histamine/food reactions, neurological/brain function issues, and diverse ever changing reactions/opinions/treatment attempts/or flat out denial of this new daunting disease that affects each person so similarly yet so differently with our own distinct medical make up and history. I am hopeful for you that this indescribable vibration/shock, subsides or at least lessens with time as mine has. Just a suggestion, for me I had to seek neuro PT who truly understood this prescribing pacing with no exertion yet slow muscle building and neuro realigning techniques catered to my bodies reactions preventing crashing. In turn I think this helped building back some muscle for these vibrations /shocks to travel thru lessening them and help repair other suspected neurological source🤞 Going into 4th year, I can finally feel a muscle again and only random shocks happen now making dealing with all the rest still, greatly appreciated little easier🤞I wish you the quickest healing possible!🌈

You describe exactly how my symptoms are. Any relief? It’s been a year for me.

First off, I’m so sorry you’re suffering so badly. I too have Long Covid, going on 3 years in December without taste or smell. That’s the lingering one for me. I have body tremors now only occasionally if I stay up too late or am on my feet for too long during the day. I’ve stopped doing that! I also get severe cramps in my legs, not daily, but on occasion as well. I’ve started taking 2 Tums every night before bed and since I’ve been doing that (3 weeks) my cramps have subsided. Body tremors are much less than after my initial covid infection which was December of 2022. I’ve had 7 Stellate Ganglion Block injections through our big hospital Northwestern in the city of Chicago. They helped a lot with PTSD/Anxiety. They might help with your body tremors. I wish you good health!

I'm not sure if I understood you correctly: what I feel, almost exclusively when I'm about to fall asleep, is a kind of tremor or as if I'm being "pulled," almost like a puppet, and my arms and legs jerk in a peculiar way that's hard to describe. I'm not sure if you're referring to something like that or more along the lines of palpitations. It is extremely peculiar and clearly started with the syndrome

I get them occasionally as well. Thanks for sharing!

suef
St. Petersburg, FL.