Anyone have any ideas on what this might be or potential solutions?
Ongoing with gradual worsening over 30 years. Muscle pain and stiffness. Losing muscle strength even with working out and aqua therapy. I was an active horsewoman so was very fit.
Intermittent rashes chest and upper back. Dry, itchy patches on elbow, knee and forehead. Intermittent non-stationary ligament and joint pain. Sometimes a knee or a shoulder, or where the front of my thigh meets my pelvis or finger or hand swelling with sharp broken bone type pain. To the point I cannot bend the joint. Swelling is obvious to naked eye. Some days I lift my arm over my head and others can hear an audible snap with a sharp pain in my shoulder or I start to take a step forward and my leg joint feels like someone is stabbing it.
Rarely lymph node under right arm pain. Long term cough. Palms of hands will turn bright red and itch. Sometimes my face or the fronts of my thighs turn bright red also.
ANA 1:80 high abnormal
High Complement C3
Thyroid tests normal although sometimes throat there occasionally has swelling and pain.
Lymes tests all negative.
I was treated years ago with IV Colchicine and Myers cocktail. Within 3 days muscle pain and stiffness was completely gone. Went for 6 treatments. Seemed to be ok for a couple years gradually symptoms returned. FDA took IV colchicine off the available treatment list now so I cannot try again.
rheumatology Jefferson was clueless, worse she had zero curiosity and a I don't give a damn attitude. Said I don't have an auto immune. John's Hopkins head of rheumatology years ago said I have some unknown auto-immune disease but he didn't know which one. All he did was put me on prednisone which caused 100 pound weight gain and I felt miserable all the time. Wanted me to join his 'research study'.
I did get the weight back off.
Anyone have any clue or similar symptoms?
Tried low dose naltrexone. Made me dizzy with bad headaches.
Allergic to all NSAI's
Refuse to take any narcotics now. Tried that for almost 5 years. Not much in the way of pain relief for me so I quit taking. Doc looked shocked when I said oh that doesn't work so I quit taking it. Luckily I somehow dodged the addicted bullet.
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jimgill, you may have given us a few clues. Your skin issues hands and thighs sound like psoriasis. The joints may be affected by psoriatic arthritis as they are often seen together. A dermatologist may be able to determine by looking at your skin during a flare, if not they should offer a biopsy.
ANA 1:80 is high but is common in people without autoimmune systems. The follow up to a positive ANA would be an ENA which could help to determine if and which autoimmune system is activated in you.
There a many medications topical and injectable which can relieve symptoms. If you have psoriatic arithritis you would want to protect your joints from the permanent damage they can cause.
I'm curious about how you will proceed.
Sarcopenia can be counteracted for some extent by careful attention to nutrition. Creatine supplements, D3 supplementation, sufficient protein intake for your weight and exercise can help.
I'd try to get the ENA from whomever ordered the ANA. If your internist isn't helpful, you might want to see a rheumatologist. I'd see a dermatologist as well. If the dermatologist can't tell by looking, ask for the biopsy.
Best wishes.
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5 Reactions@gently thanks for the recommendations. Derm Biopsy wasn't conclusive : could be this could be that. I will get the ENA ordered. I have seen rhem DRs at Jefferson and John's Hopkins. Head rhem Johns said def auto immune he just didn't know which one. This was years ago. Complement C3 is also high. Other people may have 1:80 but don't have the inflammation and other symptoms I have. Why would the joints or ligaments get inflamed literally you can see they are swollen and hit to touch then within 48 hours go away? I have what is fairly severe very limiting muscle pain and stiffness. If I do a squat Somedays I can stand back up other days my legs just won't accomplish. I do the non inflammatory diet. I take supplements.
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5 ReactionsDo you have kidney problems?
Colchicine is a medication used to treat inflammation and pain, particularly during gout attacks. It works by reducing the inflammation caused by uric acid crystals that accumulate in the joints.
Did you ever have a kidney ultrasound or a CT scan of your kidneys?
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1 Reaction@swalex IV colchicine works on systemic inflammation also not just with gout. They use it in heart inflammation cases. My blood work, other than listed above, comes back normal. I think kidney issues would create consistent issues not show up in just different joint areas. Plus the severity of the muscle pain and stiffness is better although still present then will get sharply worse. I will ask dr about though. Thanks
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1 ReactionI thought I was reading my story! I was dx with fibro in 2001. Muscle and joint pain increased to the point where I could not get out of bed. Fatigue was so bad I’d nap for 2-4 hrs every afternoon and still fall asleep around 7-8pm. All inflammation tests came back negative yet I was filled with it. Lost muscle strength.
One issue I had was I was on a statin. Hence the weakness. It wasn’t until 2015 and 1400 miles away I was dx with Psoriatic arthritis (PsA). I had ultra sound done on all joints. Showed joint erosion and inflammation. It was the same rheumatologist that discovered celiac. Gastro confirmed. Since being gluten free I no longer have the severe joint/muscle pain , lightheaded, nauseousness and other misc issues. My pain was never the same each day or for that matter each hour at times.
Just a few ideas.
Oh X-rays cannot show PsA. Only scans. There are very few rheumatologists that can dx it. I’m not on any medication either. I’m T1D also. So I do use insulin.
It’s amazing how well I feel. I’m sure a stronger spiritual life has helped also. Wish you the best.
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4 ReactionsJim, May I ask about your diet. Would you describe it as a normal American diet? I have made good progress with amending my diet to combat my psoriatic arthritis. It is a different lifestyle, but I am healthier. If you are open to suggestions, I would have mine and I am sure others could add their ideas.
I would suggest researching cytokines, the messaging proteins that can signal a cytokine storm when in contact with saturated fat which can create inflammation. Also, research anthocyanins, (Greek for "blue flower"}. The pigments in deeply colored fruit and veggies calm down the cytokines. So the objective is to reduce the saturated fat and increase the deeply colored fruit and veggies. Works for me.
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5 ReactionsI would also like to mention:
Colchicine and the concepts of nephroprotection: a new feature of an old drug
https://jrenendo.com/Article/jre-25072
More about Colchicine and where it comes from: https://swaresearch.blogspot.com/2025/11/sorrel-and-autumn-crocus-beneficial.html
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2 Reactions@jimgill
I have had similar symptoms for the past 2.5 years with diagnosis of systemic sclerosis or scleroderma. It is diagnosed by blood test SCL-70. The main source of inflammation is coming from vasculitis throughout the body, which is causing chronic fatigue, joint stiffness, and GI distress. Another hallmark of scleroderma is skin thickening. But joints/GI inflammation and fatigue may start 1-2 years before actual skin thickening becomes obvious. For this reason, the diagnosis is frequently missed until the doctor will see skin thickening. The symptoms you are describing (sudden onset of muscle and joint discomfort) mainly coincide with food intake, particularly solid, fried, and acidic foods. You may have a different autoimmune condition possibly associated with GI. May be worth checking with gastroenterologist. Best regards
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4 ReactionsA few posts back someone mentioned cytokines. If that is part of the problem, I always mention quercetin because it quiets the cytokine storm supposedly.
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2 ReactionsLupus sounds very much like my late husband's lupus flair ups
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4 Reactions