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

@lewin I live in rural PA and the closest big city to me is Pittsburgh. Even then, it's an hour away.

Some doctors are asses; only a few really care! You ARE NOT WRONG for feeling unheard and dismissed! It is amazing that you have lost so much weight! You should be celebrated for that incredible accomplishment!
(not important, BUT it makes it relative...to explain my opinion)
I've been dealing with severe abdominal pain AND lower back pain (sitting/laying) for YEARS; no doctor could diagnose thus help me. I kept on...
Years later, during a CT scan for my stomach; they noted my lower spine has crushed vertebrae; hence the lower back pain that a doctor didn't notice from their prior x ray nor the xray reader see it. My stomach issues took years and a dedicated gastrointestinal to diagnose, thus cure. I have been abdominal-pain free to almost one year now!
Prove that A-HOLE wrong! I'm sorry for you, but let that be the STRENGTH to motivate you!
I got great pleasure telling the "previous doctors" what the professional doctors found!

@ktp keep going to Drs. Use Chat GPT to help. I have been to 5 Rheumatologists, 5 dermatologists, oral medicine specialist, oral surgeon, 4 dentists etc in the last 3 years. Finally found a dr who did a biopsy of my tongue to tell me I had OLP and not crazy. Keep trying to get answers. The only person who cares about you is you. I had a neuro dr just tell me this 6 weeks ago and it has stuck!!!

I feel for you! I had a journey where doctors kept prescribing the same med over and over! And no results that helped. I switched to a functional medicine doctor and finally found relief. I was tested for so many causes based on my symptoms. That’s where most doctors go wrong - they treat the symptoms and NOT the CAUSE! You can find one by city and state at this website: ifm.org if you’re interested.
Best to you.

Please don’t give up! Perhaps a functional medicine MD Doctor, would be of help to you! Your situation reminds me of how frustrated I was, when my heart kept beating at 170 to 225 beats per minute for hours ( like 10 ), before it went back into normal rhythm. I got in to see my primary care Doc. right away! He thought that symptom, which was recorded and documented, on my smart watch, warranted further investigation. So, he referred me to a cardiologist. The cardiologist took an EKG, and ultrasound of my heart, and said everything looked perfectly normal, so he could do nothing to help me. i was so flustered. I felt like crying and when I had another episode like that, it was, also, upsetting, but, I thought, what’s the use, even calling the Doctor! I had been made to feel like I was a ‘turkey’ by that Doc, so I let that episode go, and did not report it! That was several years ago! I would have occasional episodes, again, that didn’t last so long. I did report them to my primary Doc.
He seemed uninterested too! So just this last year, I had one of those fast heart episodes, and, at 223 beats per minute, according to my smartwatch, after about 10 minutes, into the episode, I had this horrible feeling in my chest, where I actually felt like my heart moved, a flip flop sensation! Then, what scared the wits out of me, is that I couldn’t feel my heartbeat, and I started feeling light-headed. At the same time, my smartwatch flashed a red light, and a notice came up on the face screen! YOUR HEART BEAT IS IN ATRIAL FIBRILLATION! CALL YOUR DR. RIGHT AWAY, AND PRESS STEM OF WATCH, HOLD FOR 10 SECONDS, AND 911 WILL BE CALLED TO YOUR ADDRESS! So, I woke my wife up, and heard the ambulance sirens approaching! EMT Ambulance service is only 2 miles from my home. Anyway, my smartwatch recorded that ECG, and I sent it to the Cardiologist’s office the next day. Meanwhile, my heart had gone back into sinus rhythm. So, I was sent to a heart rhythm Doctor, an Electrophysiologist Cardiologist, who had a monitor put on me for several weeks, where several other A-Fib. episodes were recorded, and I was officially diagnosed with A-Fib. So, the lesson that I learned, was stop crying and feeling hopeless, because my body was trying to tell me something, and eventually, something happened, symptom wise, where the Doctor’s could see that something definitely was wrong, and that I needed help! Please try and be patient, and keep trying to find an answer for your symptoms, and concerns! I can tell you of several other instances, in my lifetime, where I’ve run into uncaring, or unconcerned, or overworked medical providers! Due to my perseverance, I have met Doctor’s that cared enough to truly investigate my symptoms, and, actually, those Doctor’s, who cared, about me, and thoroughly investigated my symptoms, all came up with my, unfortunately, having very serious disorders! Over the years, I have been diagnosed with Parkinson’s Disease, Gammaglobulin anemia, Supra ventricular Tachycardia, Ataxia, Tonic/Clonic Seizures, Pancreatitis, Fatty liver disease etc. So, please do not give up! Sometimes, caring, investigative, low patient load Medical Professionals are hard to find, especially in larger populated areas, where there is only one hospital, and the Doctor’s patient load is determined by non medically trained administrators, as I have found out, concerning my experiences! Good luck to you!

@artemis1886 definitely not just you. I think I am in the minority to find a rheumatologist in OKC that listens and responds. Cuts down on the frustration level! I wonder if you could contact Connected Rheumatology out of Dallas…maybe she knows someone in PA…

You are young and I'm assuming you do not have many experiences with doctors. First, unless you yelled, used totally inappropriate words and called a doctor really, really bad names you have not burned that bridge. Doctors are professional and understand patients are under stress. Unfortunately, Rheumy everywhere are overworked. There is a national shortage of them and therefore they do not have the time they once did. Mine is so busy that to get an extended visit which is what my condition requires means they have to msg her to get her permission to open a time slot up to book me. I see her every 4 months and the Nurse Practician every 4 months - meaning there is only 2 months between visits.
You need to learn how to be your own medical advocate. Which means you go into the appointment with questions/concerns and not simply waiting to react to what the doctor tells you. I use MyChart to send my questions 2-3 days in advance. Distill your questions to 3-5 max. Identify your single most important visit goal. An example would be "to understand the doctors suggested next steps and why" - this is very high level but can work as a guide for most all appointments.
You need to become a partner in your health care and don't think of the doctor telling you "do this, don't do that". At your age I assume you are using an AI chat partner, you can ask your AI tool questions. Never assume AI knows more that the doctor - It is OK to tell the doctor that your AI tool said something and ask if the doctor can explain if it applies in your case and why/why not. Use the tool to help fill in gaps once you leave the doctor's office. Look at your labs before going to see your doctor if you have access to them, read up but be ready for the doctor to explain what it means in your case.
You may be sick with an elusive problem. You should try what you Rheumy suggested for at least 6 months unless it makes your symptom worst. Talk with your PCP and develop a 3-6 month plan of action that makes sense to you and to your doctor. Then follow the plan and evaluate progress at the end of the 6 months when y'all work on the plan for the next 6 months. Please avoid thinking that some doctor is going to ride into your like on a white horse and save you. That rarely happens. I have done it myself - it never worked.
I am sorry you are having these problems. Please try to enjoy what you can and rest well. You have done a lot of self-improvement work. Do not give up on yourself.

This is a good place to "get it all out." When I saw this post "I'm tired" I was immediately reminded of when I was 30 and went through this same kind of thing. I think I wasn't taken seriously because doctors would judge me for being young, "how could you be this sick?" I had a doctor tell me that I drank too much water (apropos of nothing, just a random useless comment)

In fact, I had to get to Stanford teaching hospital and be seen by ENT, I had a malignant tumor of the parotid/salivary gland. By the time I got there 3 years had gone by and it spread, Stage II, to my face. I needed a 6 hour surgery and radiation treatments. The too-much-water doctor called me up the day he rec'd the pathology report. "Why didn't you tell me about the nodule?" He never called it a nodule before.

Besides cancer, when I was 30 I had the onset of autoimmune illness and severe disabling fatigue. I was never able to work as an RN again.

You think they'd take me more serious when I'd been a charge nurse?!! Absolutely not. I'm still a woman and I'm "getting all this out" to tell you that I'm so very sorry to hear this kind of treatment/not healing is still happening. Because I thought since the 90's maybe there was more consciousness.

What I really want to say is after I was going through my 30's , my entire reality had to change. I lived my life for the quality of BEING not DOING. I had to accept that how I'd been in the world would never be the same. I lost a nursing career but became a survivor and a visionary poet. I met people who saw me as a creative. I read and studied. I remembered my dreams every morning because I didn't have to jump up at the sound of an alarm.

When I turned 60, I realized I wouldn't change my life if I was to do things over. That is because I love who I am. I've lived a deeper life of the mind and soul. I still live with ongoing chronic illness challenges, but know what it means to survive.

I hope you can find time for yourself, believe in what you love. I know this might sound like Oprah Winfrey! but it's true. You are a treasure to yourself. These doctors can be very messed up. It's your work to know the difference between them and your true self.

I’m so sorry you aren’t being listened to. It’s hurtful and frustrating.

Does the rheumatologist have a Nurse Practitioner or PA you can have a follow up appointment with? Sometimes it helps to have another appointment to go over test results and symptoms. As a nurse I can confirm that many doctors don’t have great communication skills with their patient. The physician extenders, especially nurse practitioners are much better for follow-up visits.

I would also follow up with a pulmonologist to see what they recommend based on your home sleep study results. I know they ideally want about 4 - 6 hours of sleep but it’s up to the pulmonologist to interpret the results. Their treatment may help some of your symptoms.

In the end it might be that fibromyalgia as a big part of your pain and suffering. But as far as just prescribing meloxicam and it being one and done doesn’t track for me. There are 2 strengths. You may need a strength adjustment, you may need change to another medication, idk. But to shut down like he did is certainly not where this should end.

I hope you get some answers. It takes a long time to get answer sometimes. And I hope you get peace and relief.

You need a hug. If considering going to UPMC, Julius Birnbaum has recently relocated there from Johns Hopkins. I think he has a good reputation as a clinician in Rheumatology, Neurology, and Internal Medicine. You can preview him on many online videos. He's written a book: Living Well With Autoimmune Disease, which I'm currently listening to on audio book. If you can get an appointment with him, you'll probably get some help.

Best wishes to you.