Living with LPSVS (long post-COVID vaccination syndrome)

I have been tested for a lot no one knows why I have these symptoms the mimic m.s. and go in and out of remission. Its related to stress. I only had 1 vaccine. It set me on fire from the inside out

Where are the treatments?

Never get another vaccine. All 17 doctors agree on that. They say treat it from the outside. Mine goes in and out of remission. I havenerve damage. They give me pred to put it back in remission. Is there any place that can help. The first medical journal article was published on it

since covid 19 (though being vaccinated 4 times ) i have been suffering from chronic fatigue which my research suggests that it is a result of having covid. i too have had every test that you can imagine which did not offer any solution to my having constant fatigue. to give it a name - chronic fatigue syndrome fits the description. i have to push myself to get through the day. any suggestions?

Hello!Can I ask you what your treatment for Sjogrens is?I have actually had 3 positive ANA's with a high speckled pattern and my Rhuematologists still don't think I have an Autoimmune diseases.We have tons of Lupus in the Family.I have extremely dry painful sandpaper eyes that I can barely open in the sun.I also have floaters and blurriness along with extreme muscle pain and can barely walk. I think Sjogrens is part of what I have.I dis not realize Sjogrens can affect walking until I read up on it.I just thought it was dry eyes and mouth.

I am sorry to hear you are struggling with diagnosis. As I mentioned in my original comment, I was never positive on the ANA tests, but when my rheumatologist did a series of antibody tests, I tested positive for the Sjogren’s antibody. I never had overwhelming dry eyes or mouth that I would even consider them symptoms. Mine was the excruciating and debilitating pain in my joints and extremely high inflammation that had me leaning towards autoimmune conditions. Also, because I had already developed one autoimmune disease with APS, I knew I was more susceptible for others. I am on blood thinners due to my APS, so we were limited to only one option in med for treatment of my Sjogren’s, which is hydroxychloroquine (Plaquenil). I also completely changed my diet at the same time, following an anti inflammation diet. It can take up to 12 weeks before you see the benefits of the hydroxychloroquine, so I was doing anything I could to get relief. The diet helped immensely, cutting my pain in half, and then after about 6 weeks I was feeling the effects of the med too. I can’t even begin to express what it has felt like to feel like myself again, and not be crippled with pain. I have also continued the diet as it is absolutely worth the work for the relief it provides along with my med. I hope you find the answers you need to get relief as well.

Thankyou so much for replying!My primary gave me Plaquenil to try out,but I have only been on it for 6 days ans feel nothing.Maybe it is too soon.My Primary is the only one that has tried to help through this whole ordeal.I have the extremely dry eyes,but horrible muscle pain and extreme weakness in the shoulders,neck,uppers arms,pelvis and trunk of my body.I have gone to several neurologists and asked about a bunch of diseases and all my tests come back negative.I already have Hashimito's.I had several years of extreme periods where I ended up with Anemia.I had a one time iron infusion and possibly got covid at the same time.I think all of that and working in Healthcare during the pandemic set my body into some kind of shock.I know extreme stress can bring on Autoimmune too.That is how my Hashimito's came on.

I have had problems since my Covid vaccine , 3 years of being “sick” but no diagnosis. I am a very active person and hard worker at my career until after those shots.
It does go into remission and I think I am cured or it’s over and then it blind sides me out of nowhere and I face weeks of being in bed and other issues and I just have to wait for it to pass. Frankly I am pissed

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.

Don’t give up on the Plaquenil. Give it 4 months. I couldn’t walk for two years after Covid. Worst leg pain plus fatigue. I finally started on that and my Dr said it takes 3-4 months to kick in. I was bad. It was my last hope. At 3 months I was about to go off it. Then about 3 1/2 months I was starting to walk and able to get up from my car and sofa without help. Plus way less pain. It’s been a lifesaver for me. I thought maybe it was just my time so I tried to go off of it after being on it for about eight months and within weeks I was back to help out. I was so long story short I’m back on it and it makes all the difference in the world.