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.

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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.
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Help with Diagnosis? (lemmy.cafe)

submitted 1 week ago by [email protected] to c/[email protected]

7 comments fedilink hide all child comments

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] 6 points 1 week ago (1 children)

DAO enzyme deficiency? Simulants can inhibit DAO and cause nausea.

Do antihistamine help?

Remember Hickam's Dictum. A patient can have multiple problems at once. You don't need to explain all the symptoms with one illness.

[–] [email protected] 2 points 1 week ago

DAO enzyme deficiency is too slow. I I have pain reactions instantly. Like I have reactions just from putting stuff in my mouth, if it has a lot of Histamin, lol

Antihistaminika DO help, massive improvement once I figured it out.

Thanks for your answer!

[–] [email protected] 3 points 1 week ago (1 children)

If it is a single cause, I'd be looking for an autoimmune disorder. That's what those general symptoms end up being most of the time.

Thing is, damn near all of them can cause those symptoms. With the onset following a probable viral infection, I can't think of anything else that explains everything at once.

Now, there is a ton of comorbidity between mscfs, fibro, and stuff like rheumatoid arthritis or lupus (it's never lupus), or even MS, though you don't describe MS primary symptoms at all.

My bet? Once you finally find a diagnosis, it's going to be multiple things stemming from the response to the virus, whatever the virus was. It's easy to forget that long covid isn't the first time that people have had lingering effects from virii. A ton of them come along with at least mid length problems after the infection itself is cleared.

I mean, you've got the little bastards invading and coopting your cells. It takes time for that kind of damage to get repaired fully, and the immune system takes its own time settling back to normal.

Even a cold can cause mild symptoms weeks after the infection is gone.

Which, if I'm right, it's good news because most people will eventually return to normal. Might take a year or two in some cases, but It's better than having a permanent autoimmune condition.

[–] [email protected] 2 points 1 week ago

I think so too, but this full body pain reaction just a few seconds after I put any trigger in my mouth is just hella strange, I didn't see it described anywhere -.-

Don't think it's MS, my ex has MS, so we would have prob figured that out.

Rheumatoid Arthritis doesn't fit either, as the Pain is mainly located in Muscles ect, though joints as well.

... Yeah my best explanation is still somewhere in the cluster of me/cfs-fibro-mcas Though it just seems like a combination of the last two which is weird.

Thank you for your extensive answer, I appreciate it a lot!

[–] [email protected] 1 points 1 week ago

Histamine Intolerance?

[–] [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.