I don't know what to do next - I'm tired

Thanks for telling us. In what you said, this idea impressed me the most: You said, “ How much weight do I have to lose before I’m finally believed?” Wow! I don’t know what to say to that. It seems that you think that doctors do not believe you because you are heavy? And that weighing less would cause doctors to believe you? Do I understand correctly?

you havent done anything wrong, don't give up , I had a god awful pain for 10 years docs said " its all in your mind your imagining things " 10 years later by accident in another state the doc I saw was checking my spine cos I had back issues, and found I had a bag ( gall bladder ) full of stones, so bad I was having it out a month later. so now I dont let any doc tell me that what I am feeling isnt real.

Hello @kizu, I can't imagine the frustration you have been put through trying to get someone to listen and find a treatment that helps. Some of the symptoms you mentioned sound a little like Orthostatic hypotension (postural hypotension). Mayo Clinic has some information here on the condition - https://www.mayoclinic.org/diseases-conditions/orthostatic-hypotension/symptoms-causes/syc-20352548.

You also mentioned having mottled skin. Here's some information that may offer some suggestions that help - Causes and treatment for mottled skin: https://www.medicalnewstoday.com/articles/321422.

You might want to join this discussion to learn what others have shared:
-- Sudden severe dizziness when standing up: https://connect.mayoclinic.org/discussion/sudden-severe-dizziness-when-standing-up/

Have you considered seeking a second opinion at a teaching hospital or major health facility like Mayo Clinic that use patient centered care?

I understand, it’s a huge blow to your confidence. I found getting a diagnosis made my life easier, I researched and read and then had an easier time managing the disease.
Gaslighting by doctors is rampant and it’s important to advocate for yourself even though the stress may manifest into more fatigue and pain.
I’ve been in your shoes and am still there. Thankfully my Rheumatologist has been wonderful and we have a plan. Treatment is not universal and it takes time to find what works for you.
The reactions to your weight bothers me. I was 135 lbs in 2001 and 270 lbs in 2022. Doctors told me you’d feel better if you lose weight. I was put into a box. I also felt weight discrimination in many aspects of life. It’s hard to feel safe,
Now I’m 147 lbs., no appetite from disease. No diet or excercise. Symptoms did not go away but they may have gotten worse if my weight stayed the same.
Here’s the kicker, I tell the docs I lost 120 lbs in < 18 months and they don’t seem to care.
Take care of yourself. You can do it. I send you hugs and good wishes.

I am so sorry you're having to deal with this on top of feeling ill!
I've had a similar experience with doctors dismissing me and telling me to stop thinking about it so much!
My advice to you is to keep searching for a doctor will listen and is able to put the pieces together.
Please don't give up! I know it's so hard but there is help! I will be praying for you and please feel free to reach out any time!! You're not alone!

Well, I would say it could likely be fibromyalgia based on what you said. But I am not a doctor and I would encourage you to go get a second opinion like he said. Just start over. Don't give up, at least you have some information about what the illness isn't. That's a start. Sometimes figuring this stuff out takes more than just one doctor. I think you have come a long way. Now continue on your journey with a new medical person who can define it more accurately and give you the help you need. Meloxicam never did anything for me, even Tylenol was better than that.

Please consider a Dr that knows about Sjogren's Disease. It can play with your autonomic nervous system and produce some of your symptoms and can be hard to diagnose. Please don't give up! We are pulling for you.

@tatiana987 Yes, originally about 4 years ago when I went to try and find help for this unexplained pain that had randomly started at that point, I was told that it was probably weight related. It progressively got worse, and about 2 years ago I really was having a hard time. I used to be ~380 lbs, which to be fair is big and probably did contribute somewhat. But it's only gotten worse with more symptoms the longer I let this go on, and I'm down to 260. I just feel at this point no one will listen unless I'm a "normal" weight.

@johnbishop Thank you for the helpful links and reply. I have considered a second opinion, but I don't really know where to go. That doctor was the only rheumatologist around me within about an hour, as I live in rural PA. I could drive to Pittsburgh, but can't figure out which one to even try. It's just very overwhelming.

@kizu Here's a page that lists teaching hospitals in PA if you want to see if there may be one close to you that might be worth seeking a second opinion - https://www.healthguideusa.org/teaching_hospitals_pennsylvania.htm.