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

@kizu Oh my goodness, I could just hug you. So many of us who have commented have been through it with doctors ourselves, and I will say this, as it’s my own experience: rheumatologists seem to be the WORST specialty when it comes to communicating effectively.

It is NOT you. It’s them. And you may find you’ll have to visit and drop one or more two doctors in the coming months. So many people who have been to a rheumatologist experience this. So my advice to you is to make sure you are taking full and complete care of yourself. Take many deep breaths. Get good sleep. And above all, put yourself FIRST.

You will have to be very direct with this specialty. There’s no other way around that. Practice being assertive before you go in.

It’s a lot. I know, believe me.

If you can get to Pittsburgh (such an amazing city), do.

Call your insurance company too, and tell them the issues you’re having. It’s their job to help you find doctors in-network to help you. Lord knows we pay them enough; put them to work for you.

Hang in there. This is tough, but you reached out here, and that was a big first step.

I am pulling for you from South Florida! 🌴

@kizu I think I reacted very favorably to what you said because I feel kind of the same way, not about weight, but about age. It seems like people often disregard what I say and lack patience to even try to understand. People can be even more unnatural and unfeeling than automated phone voices or AI.

People often assume a superior, know it all attitude with me. I am just a doddering old lady. And the rules of both medicine and human kindness are suspended, because I can’t be made younger and therefore worth paying attention to. I am left to die and lied about. And if I tell somebody or ask for help, I am ignored, as if I had said nothing.

It's not always this bad. Sometimes people are quite decent, even fun to be with. But I am shocked at how dismissive people can be with me because they see me as old and therefore unintelligent.

I just want to say I understand your frustration and you did nothing wrong. The doctor was wrong in how he treated you. I have to say my first symptoms of my autoimmune started prior to 1994, and I wasn’t formally diagnosed until 2024. There was much discouragement, frustration, and just pushing past all of the symptoms in the in between times.
I want to encourage you to keep trying, keep pushing for referrals, researching and finding different doctors. There are some good ones out there that can think outside the box, really listen, and be kind and considerate as well.

Saying a prayer for doors to open for you to reveal a diagnosis and treatment that will help.

@johnbishop Thank you so much for all the help ❤️ It really makes me feel better knowing there's people like you in the world

I'm sorry to hear your story and empathize. I've thought 8 months of no diagnosis has been long, but you've been through much more.
Doctors see disease through the prism of fitting symptoms into diagnoses and not from our perspective. That doesn't make them wrong, but in cases like ours disappointing.
My personal experience has been that fibromyalgia has been the term used when no diagnosis fits or no treatment helps. I've decided to take at least one small step toward life again each day and treat that as a victory. I haven't given up on doctors, but for now I just need to help myself along. I've been an athlete all my life and today I'm going to "restorative yoga," which will ironically be exhausting.
It's good that you reached out. You are not alone.

Sadly there’s a name for what you experienced - it’s a common phenomenon that women especially experience called implicit bias. My son is almost done with his occupational therapist degree and just turned in a paper on it. Whether it’s socioeconomic, racial or based on stereotypes or beliefs about patients with higher body weights - healthcare professionals unfairly dismiss patient concerns and often their diagnosis and treatment is delayed as a result of it. A common thread of implicit bias is a lack of empathy in dealing with the patient which seems to be the case as well here. I’m so sorry you were treated this way.

My best advice is don’t give up. I’m on the chunky side and it took 4 rheumatologists before I finally found one who was willing to listen. She found what every one of the others missed - I have dermatomyositis … a diagnosis that is 9 out of every million people. Three before her kept telling me I had fibromyalgia as well, lose some weight, get some sleep, maybe you have anxiety, yada, yada, yada.

No - my body hurts all over, I can’t get out of a chair, and my legs drag. This doctor really listened, took me seriously despite many of my labs looking fine, and figured out what was wrong with me.

There are good doctors, but sometimes it takes a few jerks before you find a good one. Don’t be discouraged. Look online, look at reviews - if someone repeatedly has reviews that their bedside manner is abrasive, I tend to avoid them. Don’t let this one doc defeat you. Keep looking for answers because you deserve to feel better and you deserve to be treated with respect 😊

Unfortunately, this happens all too often. Some doctors, even rheumatologists, don’t get the whole sero-negative thing. It can take years for antibodies to show up or the test methods often don’t pick them up. I’d find another rheumatologist…

Have you been to a neurologist? Get an emg/nerve conduction test. My neuropathy is autoimmune.
And biopsy on your legs for small fiber neuropathy. This rules out neuropathy.
Have you been drinking enough water and Gatorade.
My son was diagnosed with hypotension. When he got up his blood pressure would drop. The cardiologist had him drinking Gatorade and water to bring up his blood pressure. Get a blood pressure cuff and take your blood pressure and write it down. Keep track of it for a month or longer then take it to your doctor.
On your blood test are your autoimmune markers high? Have you looked at your blood work? Do not take the doctors word. My Ana, crp and other autoimmune markers were high. Yet the rheumatologist said everything was fine and my blood work showed a speckled Ana(1998). Look at your family history mine has rheumatoid arthritis. They have been looking since 2002 . My autoimmune markers were high but tested negative for any autoimmune diseases but it messed up my kidneys because the doctor would not treat me. This January I tested positive for lupus, mixed connective tissue disease, Sojourns and Hashimotos all at once. (2002-2026 that’s a long time) It took me being stressed out because a drunk driver hit my son on his motorcycle. He now has severe traumatic brain injury. Rheumatology is not always it. They think they know it all. I took pictures of my face showing the Rheumatologist pictures of my butterfly rash on my face. I had a lip biopsy by an ENT showing Sojourns it was positive then I went to the eye doctor tested for Sojourns positive. Negative blood work and the Rheumatologist would not accept it. He wanted a positive blood work. Find a Rheumatologist that will listen to you. One blood test isn’t the answer. The new rheumatologist did bloodwork I tested positive second blood work he did a dna-ds I tested positive which means it’s genetic. Why I tested negative for years and yet my autoimmune markers were high I don’t know. I have been in extreme pain since 2002 just to be diagnosed in 2026. They still are not treating it. I do get IVIG which helps me not get sick so much. It helps with muscle atrophy that I have from the neuropathy. Bottom line find a neuromuscular neurologist get tested for neuropathy. Go back to that doctor and get a copy of all your lab work and you look at it.
Don’t just accept his word for it. Anything elevated google it and see what it is. Check to see it he tested your autoimmune markers or just for rheumatoid arthritis, lupus and other autoimmune diseases.
Read the reviews of the doctor before you get a referral to them and most these days post online where they did their residency and fellowship. My neurologist before he passed away after over 20 years did his residency in Guadalajara Mx. He was an awesome neurologist. Very smart.
Find you a doctor that will listen to you. It took me four tries of seeing rheumatologist before I found one I liked and it so happens he got all my positives. Currently my sed rate is 126 which is way too high. See if he ran complement C3 and C4. Always get a copy of your labs from the doctor. Read up on fibromyalgia. I was diagnosed with it and then the neurologist found the neuropathy. Some days it hurts just to touch me. I start crying. The molting of the skin the doctor diagnosed me with Raynaud’s syndrome. My legs and arms molt then turn purple sometimes they turn white. This is not just a simple one or three visits. Don’t give up. Keep looking for a doctor that doesn’t give up. We know our bodies better than they do.
Just keep trying and don’t give up. It’s okay to get frustrated.

@aspyres I thought it was just me I was finally diagnosed in 2026 but my autoimmune markers high since 2002. By the time they diagnosed me my kidneys are damaged. I have several types of neuropathy and they knew the cause was autoimmune. My son made me start taking pictures of my face because I had the butterfly rash. I finally tested positive for lupus, sojourns, Hashimotos and mixed tissue disease all at once. Second lab draw dna ds it’s genetic. Why so long my kidneys are damaged and my sed rate 126. The rheumatologist still haven’t put me on anything.

I live in Pittsburgh and care is terrible here. I''m just curious why you recommended Pittsburgh? It is a nice city but health care system is a big problem.