1. < Post-COVID Recovery & COVID-19

Living with LPSVS (long post-COVID vaccination syndrome)

Posted by sandtoes @sandtoes, Jan 11 10:17am

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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j77 | @j77 | May 14 9:46am
In reply to @sandtoes "Mayo Clinic, here's my question. This is your forum. I assume someone is monitoring this. You..." + (show)
@sandtoes

Mayo Clinic, here's my question. This is your forum. I assume someone is monitoring this. You read how all of us out here suffering with LC or PLCVS. Why is no one helping us?????!!!!!! WHY. So many of us have spent months or years being sent from one specialist to another with no help, no diagnosis. One of the specialists I was sent to said this to me when I pushed him for an opinion on my symptoms, "Doctors only look at what they can fix." The more I thought about it, the more that summed up my last frustrating year of doctor visits. Well, how about you Docs help us find a fix??!!! Or at least help us better cope with these symptoms. Life as I knew it is over. I can no longer exercise, be on my feet for longer than 20-30 minutes, do more than one chore in a day, work in my yard, on and on. So Mayo, why isn't anyone helping us?!! While venting here is good, help would be better.

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I agree with this 100 percent.The doctors are only going to he able to help with what they can actually see from Tests which is basically useless to Long covid sufferers.Covid needs just as much research as cancer,HIV,etc.I am not sure,but for some reason the Government,CDC,half the world have completely forgotten about covid.It is almost like it never existed.The problem is that until it happens to one of them or a Family member or friend they are not going to be too concerned.No one knows the long term effects of covid or the vaccine.The people that created Covid in a lab should be the same people trying to figure out a cure.I went from a perfectly healthy person to disabled.Going from one specialist to another with no help.My life is destroyed.

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www3 | @www3 | May 18 1:44pm

Yes I had it after the first shot. 17 different foctos no help

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www3 | @www3 | May 18 1:50pm

The first medical journal study. It real and published now
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1 reply
sandtoes | @sandtoes | May 18 1:57pm
In reply to @www3 "The first medical journal study. It real and published now" + (show)
@www3

The first medical journal study. It real and published now

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I wasn't able to open the report. Will keep trying.

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skbnm032022 | @skbnm032022 | May 19 9:16am
In reply to @pauljay "After the second Moderna covid vaccine, my wife got sick with chronic fatigue or long-covid like..." + (show)
@pauljay

After the second Moderna covid vaccine, my wife got sick with chronic fatigue or long-covid like symptoms. It's been years now and she's still debilitated with intermittent fevers. Can anybody help?

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Second Moderna got me, too.

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flemingms | @flemingms | May 19 10:54am
In reply to @www3 "The first medical journal study. It real and published now" + (show)
@www3

The first medical journal study. It real and published now

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will you supply the citation? I would love to read the whole article.

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pacer3702 | @pacer3702 | May 19 11:47am
In reply to @www3 "The first medical journal study. It real and published now" + (show)
@www3

The first medical journal study. It real and published now

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Please post either the title of the paper or the link to the complete paper. This is only a screenshot of the introduction.

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debofmn | @debofmn | May 19 12:21pm

I received my Pfizer Vaccine in March, 2021 and I have received most of the boosters since then. I was diagnosed with fibromyalgia over a decade ago, but I was able to manage my symptoms and often had the energy to go on long hikes and play pickleball for hours. A few months after the vaccine, I started going down hill. By fall, I was gasping for air when I did anything with sudden movements, but I could still go on long walks. It continued to get worse. Unlike fibro, I only had short durations when I got a little better. Overall, my ability to do things has continued to decline. I got Covid in spring of 2023. By June, my ability to even walk short distances started rapidly declining, and other symptoms cropped up. I got a Covid booster in the fall, and I think I went down hill even more after that. I can't even walk around the block now without holding on to my husband for support. I think my muscles are failing me and quickly run out of energy, but that could be my brain rationalizing. My doctors are at Mayo Clinic, but I feel like I'm alone with this. (I do not tolerate most medications or supplements.)

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1 reply
dloos | @dloos | May 19 9:52pm
In reply to @debofmn "I received my Pfizer Vaccine in March, 2021 and I have received most of the boosters..." + (show)
@debofmn

I received my Pfizer Vaccine in March, 2021 and I have received most of the boosters since then. I was diagnosed with fibromyalgia over a decade ago, but I was able to manage my symptoms and often had the energy to go on long hikes and play pickleball for hours. A few months after the vaccine, I started going down hill. By fall, I was gasping for air when I did anything with sudden movements, but I could still go on long walks. It continued to get worse. Unlike fibro, I only had short durations when I got a little better. Overall, my ability to do things has continued to decline. I got Covid in spring of 2023. By June, my ability to even walk short distances started rapidly declining, and other symptoms cropped up. I got a Covid booster in the fall, and I think I went down hill even more after that. I can't even walk around the block now without holding on to my husband for support. I think my muscles are failing me and quickly run out of energy, but that could be my brain rationalizing. My doctors are at Mayo Clinic, but I feel like I'm alone with this. (I do not tolerate most medications or supplements.)

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It seems for some of us it doesn’t matter if we were vaccinated or caught the virus. This virus is very serious for some people. Everyone in my family has had the virus, some vaccinated, some not. I am the only one to develop long Covid. I have been very ill for two years and still getting worse.

It is a sin and a shame that we are forgotten. Out here on our own seeking non-existent help.

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1 reply
j77 | @j77 | May 19 10:15pm
In reply to @dloos "It seems for some of us it doesn’t matter if we were vaccinated or caught the..." + (show)
@dloos

It seems for some of us it doesn’t matter if we were vaccinated or caught the virus. This virus is very serious for some people. Everyone in my family has had the virus, some vaccinated, some not. I am the only one to develop long Covid. I have been very ill for two years and still getting worse.

It is a sin and a shame that we are forgotten. Out here on our own seeking non-existent help.

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Yes!It is awful.I broke down crying to one of my Family members today.It is so hard.It is literally like being trapped in a body that does not work.I don't understand how in the world we got it so bad.Now that the weather is nice it is even more difficult.Everyone is running on the Bike trail and having Fun and headed to the Beach.I am pretty sure I picked up the Hell virus from the Beach.

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