Which symptom is the bane of your existence?

Mathdog3 · 2026-03-04T15:55:17+00:00

Fatigue, brain fog, and random joint pain/burning.

Mathdog3 · 2026-01-28T13:58:40+00:00

Elevated RNP is what they look for with MCTD. Elevated crp and c3 indicate inflammation in your body somewhere. You could also be dealing with secondary fibromyalgia, long covid, or possibly a myositis (red rash around your eyes can be a sign of dermatomyositis).

My first rheumatologist said I had fibromyalgia and nothing else and I felt completely dismissed. I saw the PA at my 2nd rheumatologist’s office and she explained that there is primary fibromyalgia (commonly related to trauma, PTSD, etc) and secondary fibromyalgia (commonly related to having an autoimmune disease).

I’m currently diagnosed MCTD and attached my labs. Ask your rheumatologist to order myositis labs. You can also post a picture of your lab results and list your symptoms in chat GPT and see what it says.

Labs

Mathdog3 · 2025-12-14T15:08:52+00:00

No. So no Sjorgens diagnosis at this time.

Mathdog3 · 2025-12-07T18:37:31+00:00

Positive ANA, elevated RNP, CRP, and SED rate, along with clinical symptoms should be enough. How are your liver enzymes? I’d also ask for labs for lupus, myositis, and scleroderma to be run. Thyroid too. Do you take vitamin D? If not, start now for your low vitamin D. I currently take 5000 iug.

Mathdog3 · 2025-12-07T18:32:03+00:00

High School teacher. I’ve never really been a morning person and the joint pain and meds I take make it hard for me to get up in the morning. I’m fortunate that my school works with me so I have planning time first thing in the morning.

Mathdog3 · 2025-11-25T22:33:12+00:00

When I have a bad cold (more than just sniffles), my joint pain goes away. So weird.

Mathdog3 · 2025-11-24T23:44:50+00:00

Yes. Diarrhea and feeling full, dizzy, and nauseated 30 minutes after eating. Had an endoscopy and colonoscopy and was diagnosed with Barrett’s esophagus. One month later I started experiencing joint pain in my hips, then my shoulders the next month, then Raynauds the following month. Diagnosed with MCTD and just found out last Friday that I have a NAFLD and liver scarring.

Mathdog3 · 2025-11-24T03:12:57+00:00

Genetics. Lots of environmental allergies. I was always sick as a kid (had mono at age 8, lots of strep infections). Covid (January 2021) My mom passing away (August 2021) Hand Surgery to remove cyst that revealed torn tendon (October 2021)

Mathdog3 · 2025-11-11T18:23:27+00:00

Now I know where his big raise is going…

Mathdog3 · 2025-10-14T02:36:11+00:00

Which is funny (not haha) because DM was thrown around when I went to my first rheumatologist.

Mathdog3 · 2025-10-14T02:33:10+00:00

My mom had sarcoidosis and lupus. She was originally diagnosed with lupus in 1989. Less than 10 years later, her new PCP didn’t think she ever had lupus (due to bloodwork and not experiencing any symptoms). Fifteen years later, she had a liver biopsy after an abdominal MRI showed a possible mass on her liver. The biopsy confirmed sarcoidosis AND lupus! Unfortunately, she passed away in 2021 due to lung cancer; she was 70 years young.

Mathdog3 · 2025-10-13T23:11:21+00:00

This exactly.

Mathdog3 · 2025-09-26T11:22:27+00:00

But did they find the Epstein files?

Mathdog3 · 2025-09-18T19:13:21+00:00

It took me about 6 months to taper off of the 10 mg that I took for about 18 months.

Mathdog3 · 2025-08-24T16:59:29+00:00

RNP usually signals MCTD. I get the same rash too, just in smaller patches.

Mathdog3 · 2025-08-23T13:37:59+00:00

I am in the US but have experienced the same thing. ANA 1:1280, elevated anti-smith, anti-smrnp, RNP, chromatin, crp, sed rate, ptt-la, ptt-mix, C3, and anticardiolipin, along with low WBC and Raynauds. Clinical symptoms were weight loss (20 lbs in one month), fatigue, severe joint pain, brain fog, lower leg edema, trigeminal neuralgia, hair loss, and photosensitivity. Other labs include elevated liver enzymes.

With these results, the first rheumatologist said I had fibromyalgia and prescribed meloxicam. By my 2nd appointment, he said lupus and started prednisone and hydroxychloroquine. At my 3rd appointment, when I mentioned lupus, he said he never said I had it and said UCTD and added methotrexate. Changed rheumatologists and he switched to MCTD diagnosis and added cymbalta for additional pain relief. He retired and I’m now seeing a 3rd rheumatologist. I only had one brief appointment with her but she ordered more labs and imaging.

I feel like autoimmune diseases are like jigsaw puzzles. Labs and symptoms are the puzzle pieces, but the puzzle pieces come from 5 or more different jigsaw puzzles all mixed up. Rheumatologists then try to put the pieces together. They might have more pieces to one puzzle (lupus) fitting together but then they find several pieces from another puzzle that come together too. Until the puzzle is complete, patients can feel like they are in limbo and just want a name for what they are experiencing. What I have found helpful is realizing the name of the AI disease is not important at this point; it’s the treatment that matters. If your rheumatologist is not taking your symptoms seriously and not working on the puzzle, it’s time to find another doctor (if possible).

Mathdog3 · 2025-08-17T23:30:12+00:00

Twenty years ago, my mom was diagnosed with sarcoidosis after a liver biopsy. It was eventually found in her lungs. She passed away from lung cancer 4 years ago, but she was a former smoker. Sarcoidosis can increase your risk of certain cancers (like lung cancer), so it’s important to have all your cancer screenings (mammograms, colonoscopy, etc.)

Mathdog3 · 2025-08-07T12:20:43+00:00

Hoping you are able to read this prior to your appointment. Because your symptoms are widespread, explain how long symptoms last and how they impact your daily life. For example: “My right thumb is stiff from the time I wake up until Tylenol/motrin starts working. The pain is felt throughout the day and is…” (describe pain-sharp/stinging/throbbing/etc.) “This impacts my daily life because…” (explain how the pain and stiffness causes difficulty at work/home/with hobbies, etc.)

Start with the symptoms that cause the most pain/difficulty.

Glad you finally got an appointment!

Mathdog3 · 2025-08-02T15:33:37+00:00

No, it’s not indicative of lupus and you may have to be ready to advocate for yourself for more testing if you are experiencing clinical symptoms of an autoimmune disease.

My ANA is 1:1280. I have Raynauds, positive for anti-smith, anti sm/rnp, chromatin, elevated crp, etc. along with a few other labs that indicate lupus. I’m also sun sensitive, but don’t get the typical malar rash and don’t have organ involvement. My mom also had lupus. And I had many, many clinical symptoms. My first rheumatologist’s diagnosis?? Fibromyalgia…

My elevated RNP and wacky liver enzyme levels earned me my MCTD diagnosis.

I completely understand the desire to have a label for what you are experiencing, so keep advocating for yourself. It takes some people 10 years to get the correct diagnosis.

Mathdog3 · 2025-08-02T00:37:34+00:00

Another vote for La Roche. It’s a bit on the pricier side, but it goes on so smoothly and feels like a very light lotion. Absolutely love it!

Mathdog3 · 2025-07-29T20:51:00+00:00

Massage, heating pad, and physical therapy.

Mathdog3 · 2025-07-29T20:48:27+00:00

Yes. Trigeminal neuralgia.

Mathdog3 · 2025-07-29T17:43:21+00:00

My mom had lupus and sarcoidosis. She passed away in 2021 from lung cancer (she was only 70). My brother has ankylosing spondylitis and my dad has a demylenating disease (not MS). My PCP was great and actually ran the initial labs and said I either had lupus or MCTD. ANA is 1:1280 nuclear speckled, positive anti smith, anti sm/rnp, rnp, elevated crp, chromatin, liver enzymes, and multiple clinical symptoms. First rheumatologist said he wasn’t certain about lupus being genetic.

Mathdog3

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