Fibromyalgia Diagnosis: Is There More to My Pain?

When I got diagnosed with fibro my blood tests came back negative. My doctors said to keep getting blood tests periodically because other illnesses can pop up if you also have fibro

It took me 11 years to get my fibromyalgia diagnosis and a gauntlet of tests. I’ve known I’ve had it for years. I would say that my GP wasn’t a good source for autoimmune. He just reads the results but doesn’t really refer me unless there are symptoms. Ask to see a rheumatologist and an endocrinologist. Some autoimmunes have similar symptoms so it’s best to go with the specialists. The only thing I obviously had was hashimotos.

i got diagnosed with hypothyroidism and months later my pain wasn’t resolving after being on meds for months. when i did research all my symptoms pointed to fibro, so my doctor ran tests for everything else it could’ve been and they all came back negative. fibro diagnosis is more so ruling everything else out because it can’t show up in a blood test, so it’s possible you could have something else too.

Same happen too me but I have alot of inflammation and that's cause from arthritis/ lupus but I dont have lupus my rheumatologist specialist says its seronegative rheumatoid arthritis..now I have little os arthritic in my hip and a tear lateral ..so it take time too find things out especially with our young age

After many years of feeling like fibro wasn't the main thing wrong with me I found a list of common symptoms of MCAS. I had a big one that hadn't been explained/helped before, and researched it more. Started on H1 and H2 antihistamines per Dr Afrin's book. Felt better. Not fully, but it helps. Also found that because of having adhd (or other neurodivergent dx) I'm likely to have hypermobile joints which can cause muscle stiffness and pain around the joints. No doctors ever mentioned this. Most doctors don't know about MCAS. consider seeing allergist and neurologist.

I get a lot of negative tests or even tests that come back in the "maybe" range. Because this isn't a definitive "yes" it's been very hard to get doctors to give me a diagnosis. Sometimes they even think I'm lying

I have talked with a lot of people with fibromyalgia and not a single one had only fibromyalgia trust your instincts and keep digging

YES. That’s been my experience for the last 5 years. I just recently found a rheumatologist and cardiologist who would listen and was diagnosed with dysautonomia. I feel like they diagnosed me with fibromyalgia at first in an attempt to just appease me. You know your body best, so don’t give up on getting answers!!

I know when I got diagnosed with it, I basically had to fight to even get that diagnosis. I kept saying something was wrong, but they were like “nah, you’re young. Also you’re female and overweight, so that’s likely the entire problem.” 🙄. But I’m going through the same thing right now. I know something else is going on, even though the the tests aren’t showing it.

I know while the doctor was figuring out what they have still diagnosed fibromyalgia she believes that I have lupus but the actual marker for lupus was to low