Anyone have any ideas on what this might be or potential solutions?

@mlledaffodil I hope that you find an answer with hopefully a doctor that really can look at the whole picture!!! I know with me I have aches and pains and a lot of anxiety and whenever I have a lot of anxiety I feel so bad but I really can’t help it because the littlest thing gets me very nervous and I react by feeling really really really bad my joints everything feels horrible. I have rheumatoid arthritis and PMR. I went on so many medication‘s and they do not work for me I think I get so nervous with my anxiety that I get flares one after the other but I really can’t help it with my anxiety was around since I was a little girl and I’m 80 years old right now. You know it can’t hurt to do a little thing like breathing meditation nothing to lose and also eating healthy wholesome foods. some of the Buddhism phrases are really really good even though they’re from many many many years ago I try to use them sometimes when I can. for example one of them that is really cool phenomena is like a wave ever changing never repeating gone forever I will love them as a pass through my mind. Another thing I just thought about was doing really super Duper relaxing light exercises. Another thing try to keep your glass half full and go with the flow what do you have to lose. Hope you feel better and better each day my very best wishes to you have a happy new year!!!

One of the problems with combined skin and autoimmune rheumatic diseases is very few specialists are experienced in both..
You will likely benefit most with traveling to a combined rheumatology/
dermatology clinics. You usually need a referral for consultation by your
doctor to enroll.
If you live Southeast, Ohio State University medical center has a combination
mutispecialty derm and rheumatologist clinic. 650/288-3539.
You could have a similar coordinated team approach at Mayo Clinic.
A group of cooperative Dermatologists and Rheumatologist clinics
called PPACMAN may be able to help. 614/293-1707. There are several clinics on the East coast Boston and New York.
Have you completed testing with biopsies, etc with a dermatologist?
.

You sound like me seven years ago. My hand was huge with swelling and the fatigue and weakness were such that I had to use a cane to stand. I had weird symptoms like pain behind my ears! I was diagnosed with psoriatic arthritis, which I now believe was accurate. I made the difficult decision not to take methotrexate or immunity lowering drugs because they told me I would have to be on them for life or my problems would come back worse than ever. So I decided to work on my diet instead. It took about 9 months to start working though, and during that time I did get somewhat severe joint damage in the hand that was swollen. Since then the only symptom I've had is a little itchy scalp once in awhile, usually after the holidays when I've let myself go off my dietary guidelines. About that, broadly speaking, I'll only say that most of what I eat falls loosely into the category of anti-inflammatory. I'm not trying to promote any specific therapies. I just wanted to share my experience to add to the information offered here.

@llmartin Could you share your dietary guidelines? In 2025, I had a dramatic decrease in pain and fatigue from psoriatic arthritis after learning about cytokines and anthocyanins. My diet focus now is deeply colored fruit and veggies that have anthocyanins that calm the cytokines and reduces inflammation. Some of the things I have include black grapes, blueberries, red cabbage, blackberries, red onion, black lentils, and black soybeans.
Also need to avoid saturated fat.

@searcher1
I find the Mediterranean diet helpful for PsA.
I avoid gluten and meat. Daily have coffee, nuts, berries
olives and dark chocolate. Pomegranate juice and beets are
also antioxidants. I take turmeric, CoQ10 and vitamin D.

@searcher1 your diet sounds wonderful! I will have to pay more attention to deep colors and try the black lentils. I usually have some berries once a day. Frozen fruits and vegetables make it easy to consume more of them. One simple concept has helped me a lot. I eat a big salad for lunch everyday--pre-washed greens topped with chopped vegetables (usually colorful!), raw nuts and seeds. For dinner I'll usually have some kind of vegetables or legumes, including tofu, whole grains, and greens, either raw or cooked. Sauces such as tzatziki, cashew cream, or salsa help. In short, I eat a lot of plants. I usually don't tell people what I eat, though, because I'm sure it sounds pretty far out, LOL So I always have to add that it has evolved from years of learning to appreciate these wonderful healing foods, seeing them listed on credible websites as anti-inflammatory, and finding ways of incorporating them into my daily life. It was so good to hear that you have found the same relief from PsA I have. Kind regards.

@llmartin
The anthocyanins (Greek for blue flower) are very fragile, so when you have frozen fruit or raw veggies on a salad, you are doing great.

The black (beluga) lentils are very tiny, so I soak them for a short time (45 minutes) and gently cook them for about 15 minutes. Some of the anthocyanins go into the broth, so I save the broth and drink it. I buy the Palouse Brand (family owned) in Washington State.

I make a red cabbage slaw with red onion and red wine vinegar that is a standby side with any dish. I have a small food processor that chops them up quickly. Red cabbage and red onion are a great source of anthocyanins and keeping them raw preserves them.

When you have time, research psoriatic arthritis and black soybeans, The research on it is coming from Japan were the black soybeans are part of the culture. Eden's has canned black soybeans that works great to eliminate a flare. Shiloh Farms has dry black soybeans that I make in my instant pot. I use some of it to make black soybean natto, the Japanese fermented beans. (You have met someone that is more "weird" than you are.)

Keep up your good diet and I hope you will feel great. I am feeling much better now than I did decades back. I think that is progress. Thanks be to God.

I would have your RA factors checked, but mine were negative. I had an MRI on my hand and it showed a Rheumatoid Arthritis that is called Seronegative meaning it didn't show up in bloodwork. Most Rheumys don't even look for Seronegative RA. If your bloodwork doesn't show the RA factors, they just write it off as fibromyalgia or PMR (if you are lucky) and try to prescribe Gabapentin (bad drug) or antidepressants. They tried to send me to a pain clinic for Suboxone treatment. (I'm a retired drug & alcohol counselor and was totally resistant to that approach) I refused their drug interventions and they told me not to come back if I won't take their medicines. 10 years later I was diagnosed with PMR, one year later a hand MRI showed it to be Seronegative RA.
I stuck to my guns to stand up for myself because I knew something was terribly wrong, and it wasn't what they were selling me. Whatever it was was progressive and I got much worse over those 10 years. They wouldn't listen to me, just gaslighted me. They never order additional tests until my hands blew up and I can't use my right hand at all. Rheumatology recommended the MRI, but left it to my PCP to order it and follow up. The MRI definitively showed RA. Finally, I will get the Rheumatological help I have needed for 10 years.
Suggest it to your PCP, see if he/she will follow up on the possibility.
Terri

@searcher1 Thank you for all the great info. I took notes and look forward to trying the lentils and soybeans. Very interesting. --You're not that weird! 🙂

@rocksology
Sounds like me. Doctors don’t care and can’t figure out if I have RA/PMR/Seroneg. I had the mildest hints of arthritis which were never an issue until 19 months ago I took the first of two shingle shots. Yup, shot me into pure agony with bones deteriorating to the point of a left total shoulder replacement 2 months ago. I will need the right shoulder replaced asap. I did not “age” into this. I am in flare all the time. 19 months now. Pain level a 14. No joke.

Questions: with your seronegative status, what medication are you on? Was your seronegative detected by a certain blood test? I have never had tests if HS-CRP or IL-6.