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Good Morning

Hoping to gain some insight on treatment and current research....

I have been experiencing joint and muscle pain ever since May 2020. I believe I had Covid at that time but my test came back negative (I had the majority of symptoms). Within a couple months I started having extreme inflammation in my hand, and then over time continued to have ongoing new symptoms such as multiple bursitis throughout body, developed Raynaud’s syndrome, and costochondritis. My muscle and joint pain are continually getting worse. I did not have muscle /joint pain symptoms prior to when I think I had Covid other than some weakness in my left hand (I am a right-hand amputee so suspect that was only due to overuse).

I had a Rheumatology eval and was told I have osteoarthritis versus autoimmune disease as I did not have any blood markers indicating autoimmune disease and the doctor dismissed the possibility it could be related to Covid. Tried to get into the Mayo Covid Long Haul Program but was turned away because I did not have a diagnostic test to verify Covid. So, with all that going on I am looking for some info……

What is the latest research related to onset of autoimmune disease and arthritis after experiencing Covid?

Are you aware of doctors that are willing to talk to patients or entertain the idea about Long Haul Covid related to muscle and joint pain and/or inflammation …… even if there is not a previous positive Covid test?
(I see a lot of Covid Long Haul Clinics posting the symptoms they are addressing but most of them do not include joint and muscle pain as one of these symptoms)?

I also understand that my situation could not at all be related to Covid but the circumstances just seem to fit.

Trying to also figure out best approach for treatment and how to begin – Rheumatologist recommended Physical Therapy and stated there was no further treatment that would help.

Any insight is appreciated!

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Replies to "Good Morning Hoping to gain some insight on treatment and current research.... I have been experiencing..."

Hi @ssj2020, it sounds like you're at the beginning of discovery and finding solutions to persistent joint pain. I'm hoping fellow members like @aztennisguy @gacko @jocelyneg @leezer @sueinmn @connie1977 can share what is helping them and contribute to your search for resolution and the latest research.

SSJ, Whether your pain is related to autoimmune disease, osteoarthritis or unconfirmed COVID, you want relief. You might wish to join this discussion:
- Osteoarthritis: Let's connect and support each other https://connect.mayoclinic.org/discussion/osteoarthritis-3/

Have you tried physical therapy? Is it helping?

Although I never formally tested postive for COVID (because I initially was asymptomatic and only 2 months later developed symptoms), my rheumatologist believes it is certainly possible that the myalgia and nerve pain i was experiencing (that were just recently attributed to a diagnosis of axial spondylitis), were probably triggered by either exposure to COVID or the vaccine itself (which also has the ability to trigger the body's inflammatory response). Even the internist who sees COVID long haulers indicated this was certainly possible. Keep in mind prior to February, 2021, I had never experienced any sort of muscular-skeletal issues. I am presently taking NSAIDs for the pain, and it appears to be helping. The rheumatologist indicated that if we reach a point at which the NSAIDs no longer work, then biologics will be the next step. Hope that doesn't happen! WHATEVER YOU DO, REMAIN PERSISTENT IN YOUR GOAL TO FIND REAL ANSWERS!! For those of you experiencing autoimmune issues, find a rheumatologist who is open minded about all of this!!

Sorry to hear you are in the same boat as many. I am ready to put a documentary together that shows the lack of help for Long Haulers of Covid. I was competitive tennis player just prior to covid, and in amazing shape, and Covid hit, and the cytokine storm began and I was treated with Ivermectin and some infusions, and than IV does of high doses of vitamins and glutathione. My body still is inflammed. I have been to multiple doctor's and somehow most are living on a different planet to think Covid has not caused the immune system to attack itself, and why they are not looking at infusions to help calm that part of the body down besides using steroids. I just had RNP antibodies come back positive and I never had those positive, as well as super high histamine plasma. I am sure you had your CRP, CK levels all checked as well? If not, I would check those as well. I will keep my eyes out for anything that might help. Only a few doctor's I see dealing with things that might assist long haulers. Doctor named Bruce Patterson you might want to read about as he is one of only a few I hear talk about calming the inflammatory response responsible for the joint, muscle issues, organ issues, etc.

Possibly also try to look into some good Naturopathic doctors in your area, as they seem to want to also get to the root cause of all the inflammation and may offer advice. I actually had to look up the blood work needed for muscle pains, etc. and have my naturopath run it because my primary care doctor did not believe covid had any long symptoms like muscle pain, etc. So be diligent, look at youtube long covid, as well as articles on gut health dealing with covid, than go to your naturopath or a doctor that might believe Covid exists, and telll them these are the things you need to focus on to get better (gut health, reducing the cytokines in the body, and the best ways to get rid of the remnants of covid in the body)

I am hoping the Mayo Clinic might start opening up virtual long hauler program, where you can meet withh docs that are interested in long covid people like us, run the true blood tests we need using affiliate labs like Labcorp, etc. and than working with us and our local doc to put a plan together to treat long covid organ and muscle issues. We can't just throw a dart at something as we already know certain people have genes that continue to be hit by covid and it is keeping their system on high inflammatory alert, causing the pains, etc.