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Autoimmune type issues for years without clear diagnosis
Hi All,
I have had evolving (auto?) immune type issues for years with normal labs and it is still unclear what is going on. I am wondering if anyone had a similar journey or has suggestions in general?
When I was 17 I developed sudden Achilles tendonitis pretty much overnight along with Raynaud's. I initially thought it was an injury but then it spread to other tendons in my feet and eventually other joints. I also became fatigued and had muscle aches and pains. When was 21 I was diagnosed with Lyme disease and treated for it, with some improvement in symptoms (but I know doxycycline is generally anti-inflammatory as well).
A few years after that I had a bout of gastroenteritis and a major flare up of tendon symptoms to the point I couldn't walk. I had some urinary symptoms as well and was told it seemed I had reactive arthritis. Things improved over time, but did not fully resolve.
Fast forward to my mid 30s and I became suddenly sick in summer of 2024. I had nerve symptoms (numbness, tingling, pain), muscle and joint pain, intense flu-like symptoms, rapid heart rate, weakness, sweating, shortness of breath, swollen lymph nodes. I ended up diagnosed with POTS and eventually the flare went away and I felt mostly better. This was not right after any obvious viral illness, but it was during a heat wave and after trying a new medication.
I had another similar flare in summer/fall of 2025 but this time I also had some subcutaneous pain and itching on one side and developed a puffy lipoma. I felt incredibly sick for months and ended up taking steroids followed by a course of doxycycline (both helped). This time I had more lingering tendon pain. Both recent flares were intense and I kept saying I felt like I was dying. Lost 10 pounds each time and could barely get out of bed.
I also pretty much had normal labs throughout all of this other than a few minor things like low electrolytes and high B12 and slightly high WBCs in 2024. I still have enlarged lymph nodes that are being monitored, and an MRI showed some arthritis in one my feet recently, but nothing severe. A rheumatologist said I might have seronegative spondyloarthropathy which makes sense to me, but some of these symptoms like nerve and subcutaneous stuff seem like they don't match this. He also mentioned post treatment Lyme but some of these evolving symptoms make me question if it is all that. I have also had hair loss, nail changes, livedo reticularis pop up in the last year and get dry eyes and mouth but am negative for Sjogren's labs. I have also become sensitive to sunlight and heat which I guess tracks with POTS.
Sorry this is so long, but does anyone have any feedback or recommendations? Thanks!
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wow. makes my PMR I had a couple years ago seem like a walk in the park. Good luck.
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1 ReactionNail and hair disorders with Enthesitis can be found
in Psoriatic arthritis with minimal skin findings evident.
Have you had a dermatologist screen your skin or do you have a family history of psoriasis?
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2 Reactions@seniormed Thanks for the response! Actually I recently saw a dermatologist and they didn't seem to think it matched. I do have very minor pitting on a couple of nails but not enough that they thought it counted as psoriasis. Other changes are new ridges, soft/brittle nails, slight yellowing, occasional splinter hemorrhages . I also have rosacea, seb derm and eczema but was cleared of psoriasis. The derm initially mentioned changes to capillary nail beds but then when I told her my autoimmune labs were normal she said they looked mostly fine and it can be a normal finding. No family history of psoriasis.
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2 Reactions@tuckerp Thank you. PMR sounds rough, hope you are doing better now. Perhaps the hardest part for me has been that with the normal labs I have been brushed off. This last flare my PCP told me it was all mental and he didn't want to dig into it any more. I am fortunate that I found a rheumatologist to listen to me finally.
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3 ReactionsUgh! It is so disheartening to hear a doctor tell you it’s all in your head as though you are only imagining the pain. Imagining pain? Why in the world would I do that? Grrrr!!
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3 ReactionsI would definitely look into long covid. It can cause just about all those symptoms. Good luck
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2 Reactions@mviscomi Thank you. It has been a thought of mine as well as I know POTS is quite common with that. What I am a unclear about is how my previous symptoms all fit in with the new ones, like if I have overlapping issues or what. I also found it odd my symptoms come on in such sudden flares and respond to steroids, but I need to talk to some more people with long covid to see if anyone relates.
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1 ReactionI would like to encourage you to watch:
"COVID Isn't Just a Lung Disease—What the Microscope Revealed"
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2 Reactions@yellowfleurs I had Covid in late September 2022 and this is my experience with long covid started about 5 months after with sensorineural hearing loss in one ear and vertigo. A year later it was gone and I qualified for a cochlear implant in my right ear. During this time I continued to have migraines, vertigo, and be off balance. In Late winter early spring of 2025 I noticed extreme fatigue, pain in my joints, perceived muscle pain and weakness, pins and needles in my extremities, paresthesias on my back and stomach, dizziness when standing. I was convinced I had an autoimmune and had my gp run some bloodwork. I was positive which brought me to the rheumatologist and continued my work up. I was then referred to a neurologist as I had neurologic symptoms. Other than bloodwork all my other testing was negative. I had 3 mris, 2 Emgs, ct scans, sfn skin biopsy, etc. no one could diagnose me and wound up at the Mayo Clinic. After almost 2 weeks of testing I finally got a diagnosis of long covid with fibromyalgia and me/cfs. Apparently covid can and did wreak havoc on me with new symptoms appearing out of nowhere. Best of luck to you
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3 Reactions@yellowfleurs Welcome to MayoClinicConnect! I’m glad you found this site and Im sure you are, too. Members of this group will probably answer you soon, and my AI disease didn’t come anywhere near what you’ve been experiencing. Are you seeing a local doctor or one at a multidisciplinary or university hospital center? They can probably put all the facts together for you. My husband took me to a university hospital and medical center because the doctors in my town didn’t know what they were looking at. So many new AI diseases have been diagnoses in the past 10+ years that doctors can’t keep up with them.
While you wait for members to answer your nervousness, you can do some checking of your own. Go to the top left-hand side of this page just to left of the title of the discussion. Click on Autoimmune Diseases. What comes up is a page listing all of the autoimmune diseases. In the search box, enter your most frequent symptoms or the ones that bother you the most. Click enter and the computer will hunt for all the discussions that mention the symptoms that you are experiencing. Choose the topics that you like and read thru the discussions. As an example, i put undiagnosed in the search box and lots of suggestions popped up. Good hunting!
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