Chronic Illness

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A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.

This is a support group, not a place for people to spout their opinions on disability.

Rules

Be excellent to each other
Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc
No quackery. Does an up-to date major review in a big journal or a major government guideline come to the conclusion you’re claiming is fact? No? Then don’t claim it’s fact. This applies to potential treatments and disease mechanisms.
No denialism or minimisation This applies challenges faced by chronically ill people.
No psychosomatising psychosomatisation is a tool used by insurance companies and governments to blame physical illnesses on mental problems, and thereby saving money by not paying benefits. There is no concrete proof psychosomatic or functional disease exists with the vast majority of historical diagnoses turning out to be biomedical illnesses medicine has not discovered yet. Psychosomatics is rooted in misogyny, and consisted up until very recently of blaming women’s health complaints on “hysteria”.

Did your post/comment get removed? Before arguing with moderators consider that the goal of this community is to provide a safe space for people suffering from chronic illness. Moderation may be heavy handed at times. If you don’t like that, find or create another community that prioritises something else.

founded 9 months ago

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Help with Diagnosis? (lemmy.cafe)

submitted 2 weeks ago by [email protected] to c/[email protected]

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So, I know that getting info from here isnt the same as an official diagnosis, but doctors have been absolutely useless. I am still looking for a diagnosis that fits but it don't really find anything. I would welcome any person with ideas where to look for more info.

15 months ago, I had an infection, though I tested negative for Corona several times.

Afterwards I got flu like symptoms and didn't get better until I crashed a few weeks later.

After Several Months with strong Fatigue, Nausea, ME/CFS like Symptoms, where I barely could leave the house I was doing okay ish. Then Symptoms got worse again and I developed ChronicPain in in Muscles and Joints all over my body. It somehow seemed connected to eating but it took a long time to realize that it is connected to Histamin.

So thats where I'm at: I thought it might be mcas, but my "only" symptom after eating anything with histamin is pain and fatigue. It doesn't really fit the "allergic reaction" I see described as typically for mcas. My body also reacts super fast on anything, with histamin. I don't even have to swallow sometimes to feel the pain train starting. Histamin blocker help a lot, but any Histamin-Food is off the table.

Then I thought It might be fibromyalgia, because the pain seems really similar, but again it is connected to Histamin-Food, and doesn't fit anything I read online.

I would appreciate some comments from mcas/fibromyalgia people a lot, otherwise I'm at a loss what it could be -.-

A yes, one more thing: I am now completely unable to take any stimulants because of nausea. So, Coffey, Tee and ADHD meds are off the table. :/

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[–] [email protected] 1 points 1 week ago* (last edited 6 days ago)

Did you look for largely milder chronical symptoms in your family members?
Some hereditary diseases can grow bigger with no warning at some point of life but they might be a lot of clues from the inconveniences you and your relatives experienced in a daily basis. These inconveniences would be overlook because it never handicapped your life much and it seems like something normal as you experienced it your whole life, and you saw people around you experienced it too.

Good luck with having a diagnostic. It's not a cure but it's a big step.