Autoimmune symptoms continuing for 12 months post Covid - no answers

Posted by cheart0405 @cheart0405, May 10, 2023

I tested positive for Covid on Mother’s Day 2022. I have never been the same since. For the past year I have developed symptoms that seem autoimmune in nature - almost textbook Lupus, but no diagnosis. I am exhausted all of the time. I have severe bouts of joint pain where I can’t climb a flight of stairs. I was hospitalized in August 2022 because my knee randomly swelled and they removed massive amounts of fluid. I had elevated CRP and SED rate. I also tested positive for Covid again, even though I was asymptotic. They gave me no answers but mentioned speaking to a rheumatologist for a “pseudo-gout”. I have been seeing rheumatology since 9/2022 and still have no diagnosis, and my joint pain has gotten almost disabling. I take Colchicine daily to “prevent hospitalizations” per my provider. I was tested for Lupus and Lyme - both negative. My blood work always comes back ok with the exception of elevated RBC and RDW, which no one things is abnormal. I have also become anemic and am taking iron - there is no attempt to look for the cause by anyone. I frequently have low grade fevers and swollen glands in my neck as well as painful lymph nodes under my arms. My newest issue is leg edema, to which my doctor messaged me and said “wear support hose”. I am so frustrated- I feel like there is no attempt to get any answers and I am merely “existing” to the best of my ability. If I had the money I would buy one of those DNA test kits just to get answers. I am only 48 and am starting life over with my soul mate - I want to be able to enjoy this 2nd half of my life. If anyone has suggestions, tests to ask for, specialists - please let me know.

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yesibeleive | @yesibeleive | Jun 11, 2023

Have you seen an Endocrinologist? Has Rhumatoid Arthritis been ruled out?
I think it's time for a fresh set of eyes.
Consider changing doctors.

covidstinks2023 | @covidstinks2023 | Jun 11, 2023

I agree. I had to go to two different rheumatologists to get a diagnosis as to all the inflammation I have felt since Covid. The first one ran very few tests...the second one listened and ran all the autoimmune tests available. Bless you...there is hope!

Becky, Volunteer Mentor | @becsbuddy | Jun 12, 2023

@cheart0405 Sounds like you’re having a difficult time and maybe no answers. @covidstinks2023 and @yesibeleive have given you some good info saying that not all doctors are familiar with autoimmune diseases. Many symptoms are like yours, lots of them that don’t seem to make sense. I agree that you want to find a rheumatologist. One who is familiar with autoimmune disease. You can call a university hospital or major medical center in your area. Let them know of your major symptoms and that you need help. Please stay in touch and let me know what you find out. I hope you find some help and are on your way to getting better

kayabbott | @kayabbott | Jun 13, 2023

Your symptoms sound a bit like Reiters Syndrome (aka reactive arthritis), which can be triggered by covid. I had it almost 35 years ago and it mostly hit my large joints (a knee, elbow, shoulder, TMJ) with extreme swelling, pain, fatigue, and swollen lymph nodes. The cortisone and naproxen didn't help, but it went away after a few months on methotrexate. People that get Reiters have the HLA-B27 gene. In my case, my boyfriend was cheating on me and gave me a STD, which can also trigger Reiters. Boyfriend is long gone. A blood test shows if you have HLA-B27. My Reiters has been gone for 35 years and the associated fatigue has turned me into an exercise fiend (I only crawl on floors if I do PT now). Please let us know how you are doing, I know how much pain you are in.

yesibeleive | @yesibeleive | Jun 13, 2023

What triggers Reiter's syndrome?
What Causes Reactive Arthritis? Reactive arthritis, or Reiter's syndrome, is usually preceded by an infection caused by bacteria, such as Chlamydia trachomatis (a sexually transmitted disease) or Salmonella (a bacteria that can contaminate foods).
https://stanfordhealthcare.org › causes