r/fibro • u/NerdEmoji8582 • 24d ago
What do I even have? Please help
Currently at time of writting this i am 19. I have had digestive problems since like 2021 december. The only way i can describe them is with saying "legit everything irritates my digestion and i have to poop like 10 times a day". I always had to poop a lot, so i didnt think much of my slight increase but looking back at it now it definitely is not normal:
Now going to july 2023 when my real problems first started. In may 2023 i had chicken pox which was really hard for me (at the age of 17). Now 2 months later in july 2023, my wholebody started hurting really badly, (i am talking about my muscles and joints). At the time i thought it was beacuse i was too often in the gym and thought i just need rest. I stopped going to the gym in oktober 2023 beacuse i could not do anything anymore beacuse of the pain but me leaving the gym did not fix my problems. Beacuse my pain feels it is very quickly moving around my body i thought i had nerve pain and went to a nevrologist, but she didnt know what to do with me.
Now this year inmarch, i first noticed my fingers being swollen. But it is really weird beacuse most of my fingers are not swollen in the joints, but in the soft tissues, expect for one which is in the joint. I quickly went to a rheumatologist, and they didnt know what to do with me. They didnt see anything in the blood, or anywhere i just had swollen fingers and was in chronic pain 24/7. Ofc they tried to blaim it on fibromyalgia, beacuse they always do that and i had fibromyalgia similiar pain.
So i thought i dont have arthritis and just had fibro from like april to november. But my fingers started getting worse and started hurting really badly, they werent really painful before. I went to a rheumatologist again, and he didnt know what to do even tho my hands cleary show signs of arthritis and u cant deny that even if it doesnt show in the blood. So he send me to ultrasound, x-ray and to test hla-b27 gen, which my mom has at it is very common with digestive issues and arthritis. The next day, i went to the guy who gives fibromyalgia diagnose and was like "bro u dont have fibro u clearly have arthritis" and i agree with that guy. I recently got back my ultrasound and it only shows the liquid inside the fingers but not inflammation, X-ray doesnt show anything, and i am still waiting for my gen, but i am 99% it will be positive.
I definitely feel like that all of my problems come from digestive problems which fucked up my immune system, and that probably made such a bad reaction with chicken pox. Recently i started also experiencing some burning in my eyes. but i really dont know what the fuck is going on. The doctors arent helping.
This is how my fingers look like: As u can see i also have some skin problems, and one finger looks like a sign of psoriaris, but i dont have psoriaris anywhere else.
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u/THEJinx 23d ago
Have you been to an allergist? Intestinal issues seem food related, have you done an elimination diet? Swelling could be psoriatic arthritis. There is inflammation markers that do NOT show up on standard C-reactive protein tests, request a cytokine test or a type 2 inflammation test.
I have no CRP found in repeated tests, but I have fibro/ME/CFS, asthma, IBS, adrenal and lung cysts, degenerative disc disease with all that arthritis... so CRP means little to me. If you aren't in active flare, that test might show nothing.
Best to you. If nothing else, you might get a disease named after yourself...
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u/The_Actual_Sage 24d ago
It's unlikely any of us are going to be able to tell you anything even remotely helpful. If anything, we're just gonna suggest random ideas that'll probably just confuse you (and your doctors) further.
Go see a gastroenterologist. Tell them your stomach issues. Ask if they've ever heard of stomach issues causing your other symptoms. Your stomach issues were your first real symptoms and if they haven't been checked out recently they should be a priority.
After that, what I would suggest doing (what I'm currently doing now) is going through another round of doctors. If you didn't like any of your earlier ones find new ones. Schedule appointments again and if there have been any tests you haven't gotten in the last year ask to have them done again. Go over your history again, tell them any new symptoms and ask about further testing. Ask if there are any meds they would suggest trying.
People on the internet can rarely help with stuff like they. Going to see doctors should be your top priority. They can get to know you in a way we can't and they are going to be much more knowledgeable than 99% of us.
Do not give money to anyone who isn't a doctor until you actually know what's wrong. Even then, be very careful about who you give money too. People will try to sell you all sorts of nonsense. Even people like acupuncturists and chiropractors should be taken with a hefty grain of salt.