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Living with LPSVS (long post-COVID vaccination syndrome)

Posted by sandtoes @sandtoes, Jan 11, 2024

Has anyone experienced long-covid symptoms from the vaccines. I have been searching for 10 months now for the cause of my severe fatigue. I have been sent to an ENT, a cardiologist, a hematologist and undergone so many tests/scans. My doc told me a few days ago that he is stumped. No idea. Come back in a month. I pace myself to get through a day. Is this LPCVS? Is there something to do besides pace oneself? Should I ever get another covid vaccine?

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thedreamingtree | @thedreamingtree | Mar 21 7:49pm
In reply to @arichards3 "My LC was caused by my first and last booster November 2021." + (show)
@arichards3

My LC was caused by my first and last booster November 2021.

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Same exact situation here, the ME/CFS and PEM still persists amongst other symptoms...

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lkirnbauer | @lkirnbauer | Mar 22 8:43am

I too experienced fatigue after my first Covid Vaccine. Come to find out that I have hypothyroidism, which makes you tired. It’s a thyroid condition. I would suggest talking with your doctor about having your Thyroid Level checked. It’s done through a simple blood test. Test TSH, TPO Antibodies, Thyroglobulin, T3-Free and T4-Free levels. This should give you an answer as to why you’re so tired. I take Synthroid to control my Hypothyroidism. Good luck!

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sarahschlagal | @sarahschlagal | Mar 22 12:42pm
In reply to @arichards3 "Yes, my Long COVID began shortly after my first Moderna booster in November '21. A much..." + (show)
@arichards3

Yes, my Long COVID began shortly after my first Moderna booster in November '21. A much longer story, but the short version is that I worked my way through every local Specialist and all the tests they could throw at me, finally going to Mayo Rochester LC program in August '23. When I asked several Mayo medical professionals if was wrong attributing LC to the booster, their response was consistently "we have heard that from many others". My only positive test for COVID was July '23 and it was a mild 'head cold' like case.

On several Doctor's advice I will not take the vaccine again. The Mayo program is very good and with nearly 5 months of executing their plan I feel better, not 100%, but at least better.

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Very helpful. Your comments match my own experiences with Moderna vac. Had two, (One booster). Fatigue, dizziness, leg weakness though I do try to walk daily, brain fog, constant thirst, slowed GI.
Gratefully, no pain. I suppose life could always be worse, at least I can breathe. =]

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sarahschlagal | @sarahschlagal | Mar 22 12:58pm
In reply to @sandtoes "I am not an anti-vaxer either but am sure my problems, starting in April, 2023 are..." + (show)
@sandtoes

I am not an anti-vaxer either but am sure my problems, starting in April, 2023 are from the vaccine. Vertigo, chronic fatigue, heart palpitations, high blood pressure, brain fog, exercise intolerance (I was a very active, exercising person), heat intolerance are all symptoms that are chronic or flare up at times. I have been to an hematologist, heart specialist, pulmonologist, allergy specialist, endocrinologist, and had every blood test and scan know to man, all finding nothing significant. The best practice I have learned I learned here from other suffering folks. Pacing. I have finally achieved a level of activity where I can do some basic house chores, some shopping and a bit of exercise. Not always on the same day. I have pushed to exercise and I'm able to do about 20 minutes most days. Pushing myself past where I reach tired (sometimes just cutting up veggies) results in a day or two set back. The key is immediately stopping activity when the fatigue kicks in. The first year, not one doc would talk about the possibility this was caused by vaccines. I was told I needed anti-depressants, or probably just getting old. I even had one doc excuse himself from the room saying he would be right back and then, he never came back. (no longer my primary!!!) I have given up on doctors. They wear blinders and do not look at the whole person in front of them. I hope you find some relief. Pace yourself and take care.

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So understand!! The confusion that is in this victim's mind is whether it were having had Covid three times, and/or, the fact that I received the Moderna vac twice. (original in 2020, then the second a couple of months, (I think), later). =/
Had been known for unbelievable energy and verve, Taught fitness for nearly 40yrs. but now, simply washing my hair sets me back for the rest of the day, or longer,....
Best to you!

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