I'm a human puzzle looking for answers

Hi fedup, I wish I had some possible diagnoses for you to consider. Instead I have a question: Have you had a consultation with an immunologist?

@jacqincalifornia Hello, no I have not. I may need to look into that tho

@fedupintexas For sure. And maybe an endocrinologist too.

I'm sorry to hear your struggle to find answers. If you haven't had a CCP test, Early Sjogren's Panel, or a comprehensive work up for Hashimotos, those can sometimes catch things if you're seronegative for Sjogren's, RA, etc. on 'standard' tests.

I would try a different specialist as has been suggested. I had an orthopedic Dr tell me one time that dont let them call it fibromyalgia thats what they stick on you when they cant figure it out. For those that suffer sorry. I know it can be real. It sounds like an inflammation. Then as my body does it starts producing histamine. Everything then becomes a mess. My skin, my gut, my allergies, fatigue. Mine turned out to be PMR. You dont say if they prescribed you any medications. Prednisone can really mess you up. Keep after it but realize that you will have to be your own advocate. Dr prefer to give you something. Could be something as simple as a food allergy.

Have you had a myomarker panel? The rash on the chest may be a “shawl sign” which coupled with the muscle weakness may indicate some form of myositis overlap syndrome. It’s often connected to Raynaud’s.

I have dermatomyositis that started out with all over muscle pain, on and off positive ANA, one positive RNP, and then came the muscle weakness and rash on the chest.

My rheumatologist kept throwing a myomarker into my labs and I probably did 7 or 8 that came back negative before I started to test positive. Just a thought. Good luck!

Document the rash flares with some photos.
If the rash is lasting for any length of time you should ask about a skin biopsy. When the problem is complex you may consider traveling to a multi specialty clinic or dermatology program at a university for help.
Did the doctors order any muscle enzyme tests?
Sunscreen in the meantime.

This is what I was able to find...
ANA fluctuation is real and doesn't rule anything out. ANA titers can shift with disease activity, timing of the blood draw, medications, and even lab methodology (different labs use different substrates/cutoffs). A negative ANA on one draw after a positive one doesn't erase the earlier positive — it's not uncommon in early or evolving autoimmune disease, especially connective tissue diseases, to see this kind of bounce.
Low-positive RNP appearing consistently across two different lab draws is not nothing, even at 1.1 (just over most labs' cutoff). Anti-RNP is associated with mixed connective tissue disease (MCTD), lupus, and overlap syndromes — and MCTD in particular classically presents with exactly what you're describing: Raynaud's, puffy/swollen hands, and photosensitive skin involvement. A weak positive can still be clinically meaningful, particularly when the clinical picture fits this well.
Being told to "just see a dermatologist" isn't necessarily wrong, but it shouldn't be instead of continued rheumatology follow-up — it should be in addition. A dermatologist can do a skin biopsy of an active rash, which is one of the more useful diagnostic tools here, especially for things like subacute cutaneous lupus or dermatomyositis, and that biopsy result can actually strengthen your case with rheumatology rather than replace it.

Sounds like me when I was 48. I am 69 now. Like others have said UMUST be your own advocate. What I found out coincidentally was multifold at the time. I had an undiagnosed viral infection called hepatitis C. The doctors did not find it. The blood bank did. I went to the doctor three times a week for inflammatory type symptoms. At the same time I ended up going through menopause early, which sounds like some of your symptoms. The two were entirely unconnected on top of that I ended up with gout flares, which was entirely unattended to, even after I went to the hospital for the gout flares to be treated. In addition, I was hypo and hyperglycemic, which also presented problems. All my conditions were unrelated to each other, and it made it difficult to not only diagnose my main complaints, but treat my severe inflammatory conditions, weakness, and fatigue. The gout was only formally diagnosed two years ago and it was a fluke because someone here mentioned a supplement that I tried because I was always in pain. Turns out all the arthritis doctors I see at UCSD were all wrong. My x-rays showed severe osteoarthritis, so that’s all they looked at. Turns out my pain was coming from the undiagnosed gout. Currently I am dealing with my blood glucose being out of whack. Because they’ve neglected to deal with that over the last 20 years, I will place money. I’ve probably skipped the pre-diabetic phase and I’m in the diabetic phase. I am saying all this because you just keep on plugging away. The doctors don’t do a good job of giving you enough time. I just went to a doctor a couple weeks ago for anemia, which has been a lifetime problem and he says that I don’t have anemia. It’s possibly internal bleeding that may be related to a cancer. I have to repeat tests. I did seven years ago that are difficult to accomplish like colonoscopy and endoscopy. I probably won’t do that. He’s a very fine doctor, but he’s going down a narrow rabbit hole, and I have other more important things to attend to like the blood sugar. You have to do your own research, you have to keep pushing and you have to try and avoid damaging solutions to your body. On top of all that you have to keep searching out better doctors. A doctor may be good in one field, but maybe you don’t present clearly and then that Dr. isn’t really good. I found that women tend to be better than men because they are lateral instead of linear thinkers in medicine. Men are better at going down linear paths whereas women are open to lateral ideas. That’s my experience.
In the meantime, what I suggest is finding a good hormone specialist to check that your hormones are balanced, finding a good acupuncturist for acupuncture school that can relieve your symptoms, finding a good holistic Doctor Who will look at supplements as opposed to medicine, checking your diet for lactose or gluten intolerance (I ended up with both and eliminating them from my diet was a big win for my health) . Go easy on yourself and know that this all takes time. I never really bought the fibermyalgia diagnosis I received in 2004. If I had, it would’ve shut me out of resolving various problems that were all lumped under fibromyalgia. For me, I found that it’s crucial that I have HEME iron supplement. That alleviated some issues and got me the iron I needed in a way that it was bioavailable. That had to be in conjunction with B12. My body was not digesting the food. It ate well because I ruined my intestines by not knowing I was lactose intolerant for my whole life. A lot of my answers came by, looking at my ancestors and their diseases and what they incurred as they aged. It makes sense that all this is happening to you at a time where you are in a major life change about app approaching some stage of menopause. Make sure you know what stage you are in. When I showed up at the specialist at 47 and she took the labs she said you’re not entering menopause you’re done.. Sorry for the length but suffice to say that we’ve gotta pay attention to our bodies because nobody else will as well.

Hi!
So sorry you are experiencing all this at a young age. I’m 67 & have been dealing with autoimmune diseases for over 30 years. I have 3. My whole family has them & it’s is harder for me to watch my 2 daughters, 37 and 41 years old, start having to deal with their emerging symptoms. What makes it all worse besides the pain & discomfort is the anxiety & fear when no one can give you an answer.
From everything I’ve been through, I would say one of the most important things is to find a good doctor that will keep digging until they find a diagnosis. It is only then that you can start treatment & get some relief physically & emotionally.
There is a wonderful Rheumatologist in Texas, closer to Dallas I think, who I have learned so much from watching her YouTube channel. Her name is Dr. Elizabeth Ortiz from Connected Rheumatology She has a good website too. She has information on how to find a good Rheumatologist & what kind of questions you should be asking.
Keep searching, even if it means firing a few doctors along the way.
It took years for me to get a diagnosis after being dismissed with “ you’re just depressed or a too busy Mom”. Finally got my Lupus diagnosis along with Hashimotos & diabetes all at age 35.
The latest is Giant Cell Arteritis (GCA/PMR). I once again, was released with no answer from 2 different ER’s, only to get so sick that my husband brought me into Mayo Clinic about an hour from where we live near Phoenix. They immediately admitted me & reassured me that they would figure out what was wrong & keep me until they do. And after 2 weeks we had an answer, GCA, a treatment plan & I’ve been home slowly recovering, feeling better. I shudder to think where I would be if Mayo wasn’t an option. But I’m sure there are good doctors in Texas; check with hospitals that are connected to Universities; teaching hospitals.
Sorry this ended up being so long but I hope it had helped a bit. Hang in there & good luck finding answers.