I agree, once you get the fibromyalgia diagnosis it’s used as a blanket culprit for everything that happens to you afterwards. All new symptoms, as well as worsening, are ignored and not looked at as if it could be something else. I had cancer and obvious swelling on my neck but was told it’s just a swollen salivary gland and I should put a hot compress on it. The swelling was in the middle of the neck and those glands are right under your jaw and kinda part of it. I questioned my diagnosis for over a decade. It just doesn’t sit right. And recently I started PT with a totally new people in town and first feedback I got was that they can help me recover the two decade long chronic pain from an injury and that my body doesn’t represent as a fibro body. And after a month of therapy, I am starting to feel different. People, go and search for anyone that may be of help to you. Advocate for yourself everywhere you go. Question every decision providers make as to why they think it is what it is and why the approach they’re taking.

I’ve heard some people have success when they ask a doctor to make a specific note in your file that they refused a test with their reasoning, then the doctor finally caves and orders it because they’d rather not look bad I personally haven’t don’t it but I guess it does. It’s worked for me to have backup, usually my mom goes with me to appointments and asks a lot of the why not? questions. I guess it’s harder to say no to two people than one, but not always :/

I believe in advocating for oneself. But sometimes some things are beyond what is needed. There are reasons some doctors don’t order the tests you want. 1. It’s costly. 2. Doesn’t help in diagnosing an illness 3. So its a waste of time. Everything is ruled out??? What do you think you need tested for to make sure you’re diagnosed with fibromyalgia is an acceptable diagnosis? I haven’t ever really researched other tests needed done to rule out fibromyalgia…. But I think a MRI of the brain and spine and a spinal tap are not necessary tests. I only have had a fibromyalgia diagnosis for 20 + years. Never had a spinal tap, I had some imaging done of my back and head. Back due to having severe back pain which turned out to be a pinched nerve or DDD. The head/brain to check for otter reasons that maybe causing the migraines I get daily. I guess I am cheap and would rather spend money on other things than to have expensive diagnostic tests that will likely come back normal. I understand advocating for yourself. And if you really think these tests are necessary and will give you peace of mind, then proceed to get them done. I advocated for myself in the hospital when the nurse would bring medications to take and they varied from the number of pills from the last time I had them such as 1 or 2. I asked why did the last time I got one and now I have two of that med. Want to wish you luck in your health journey and finding the right doctors and specialists who can heal you or at least make you ailments less painful to live with 😊