chronic fatigue for three years
I am f in my mid/late twenties. I had to quit my job. I moved in with my parents and did all the extreme dieting and all of the blood work.
My inflammation is always raised. No one knows why. When I had six months of chronic fatigue, I had a doctor tell me it was probably my period and I should come back when it’s a year.
I’ve seen a rheumatologist. Two actually! I’ve seen a neurologist. Functional medicine. Same thing every time. You have nothing wrong with you. Your inflammation is raised. I don’t know what that means and I don’t have anything to do about it other than tell you that you’re maybe just living wrong.
I gave up.
So many referrals and no improvement and no answers. I have stopped searching for answers around year now.
The all over joint pain started a couple months ago and now I have the confirmed hypermobility. Looking back with context my life is making sense. Especially with pots and MCAS. Physical therapist recommended looking into EDS. But it still feels like it’s all in my head!
I had my first doctors appointment looking into it and it feels like everything is starting all over again.
I’m being referred to a geneticist and cardiology and getting a mast Cell blood test.
She gave me the referrals I needed? I should be happy? My friend said it a way that feels good, which is “referrals: the land of Hope and betrayal.”😭
I don’t think my doc believes me in general. What if I don’t meet all of the criteria? What if I do have it and a doctor doesn’t know what’s happening or they have an ego issue? I’m already so burnt out on the healthcare system.
this mystery illness has taken so much of my life. With EDS (and pots and MCAS) I might have an answer to the reason why I haven’t been able to work and ways to treat my fatigue.
But I actually don’t even think I’m going to be believed or to get that answer. Whether I have EDS or not. I just wanted to talk to people who could understand.
(Side note: I think I’m crashing out about the medical system because my chiropractor vented some crazy shit at me today for like 20 minutes about vaccines and Ozempic and some insensitive weight loss stuff. I’m kind of mad at doctors and yet my health and wellbeing hinges on them and I want to punch a wall about it)
TLDR: how do you not give up every second on the diagnosis Odyssey? I’m so angry and I feel so gaslit and I’m too tired to do anything about it.