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Living with LPSVS (long post-COVID vaccination syndrome)
Post-COVID Recovery & COVID-19 | Last Active: Mar 2 12:52pm | Replies (186)Comment receiving replies
I developed several autoimmune conditions from Covid/vaccine. It started with antiphospholipid syndrome (clotting disorder). I developed the lupus anticoagulant antibody and had an event in October 2021 (acute DVT in right thigh and saddlebag PE). I had Covid in Jan 2021 and then was vaccinated April/May 2021 with Moderna. Extensive bloodwork and genetic testing found that my APS developed due to either Covid or the vaccine, they can't single out which, but derived from infection and not genetics. I am still on blood thinners due to the APS. In late 2022 I started experiencing intense/debilitating muscle/joint pain, brain fog, tingling sensations, etc. and was diagnosed in May 2023 with Sjogren's syndrome. Again, linked back to Covid/vaccine. I am now on a prescriptions that have immensely helped give me a sense of normalcy, but I went from great health to a complete shift in 2021.
All this to say that it may be worth exploring autoimmune conditions (antibody tests) through a rheumatologist to make sure your long Covid symptoms aren't something more. I had to advocate for myself in getting a Sjogren's diagnosis because none of my doctors were connecting the dots, but I knew my pain was extreme and spoke to something more going on. I pushed for blood tests and found a rheumatologist through recommendation from my hematologist. I never tested positive for ANA, but my inflammation tests were off the charts before I saw my rheumatologist and got a diagnosis.
I have not gotten any Covid vaccines/boosters since because I know my body is susceptible to creating antibodies that later turn, and frankly I am still unraveling new diagnoses since and wouldn't like to take any chances with developing more.
Replies to "I developed several autoimmune conditions from Covid/vaccine. It started with antiphospholipid syndrome (clotting disorder). I developed..."
I read your story and yours is a lot like mine. I’m still playing the testing game but we all know I have an immune disorder but not sure which one. Sjogren's lung (pulmonary) disease would be one I would look into. The symptoms I have match the Sjogren's but I also have issues breathing still after three plus years. I will request a Rheumatologist referral. They ruled that out but I think that was still suggested to go see. I too have intense Disabilitating muscle and joint pain. Brain fog, and nerve pain all over. Getting treated for Fibromyalgia. Though there is more to it. My Dr is just treating symptoms. More tests being done. They have mentioned Cushings as well. Going to a Medical School Hospital and seeing the head Endocrinologist referred by my Cardiologist. I can barely walk now. Limited.
What are the medications you are taking that are helpful for your symptoms? I'm sorry you're going through all of this. Praying for continued healing and finding answers.
@sarahm73 I had the same thing happen. 89 days after the initial second dose, I went down. I was handicapped when I woke up. I went to bed fine. I was a healthy, fully functioning staff accountant, until they let me go because it was during Covid and I couldn’t get into doctors to get diagnoses. Everything. Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, chronic stress syndrome, the list goes on. OVERNIGHT. But the doctors say no. Now I’m disabled, can’t live on what I get monthly, and all because I got the vaccine. I’ll never forgive myself or the government for injecting us with that poison.
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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.