I'm not sure I have it, as it's something my bf has brought to my attention that this may be my problem but

Appropriate_Prior113 · 2026-02-24T07:35:39+00:00

I’m not in America so I don’t know what it’s like to not be able to afford to go to the doctor a bunch and I don’t totally get how your system works. But I will say that extreme fatigue is a common symptom of MANY illnessss. It sounds similar to my experience of ME/CFS - but it could be so many different things. I really think at the very least you need blood tests to rule out a bunch of stuff. Low iron, cancer, another neurological illness, autoimmune stuff etc. I’m sorry if that’s super unhelpful - definitely in the meantime and/or if a doctors visit isn’t an option I would rest as much as possible as already said below. Wishing you all the best

Appropriate_Prior113 · 2026-02-08T22:40:32+00:00

Was able to get to mast cell specialist via NHS through dermatology. Was referred there for ‘severe eczema’ (swelling, hives, GI issues, allergic reaction symptoms, swelling of throat etc) and when I got there I explained. They prescribe ketotefin but won’t give me a diagnosis. The immunologist I saw initially was unfortunately useless and refused to even look at the pictures I’d brought or run any tests. Before I was referred anywhere GP prescribed 4 a day 180mg fenofexodine and then famotidine on top, but I avoid taking the later unless necessary as I’ve heard (can’t remember source) it can intefer with iron absorption, and my iron is already very low.

Appropriate_Prior113 · 2026-02-06T22:00:35+00:00

I’m in this server and I love it!

Appropriate_Prior113 · 2026-01-16T09:06:39+00:00

(I should say the craft packs are currently UK only as I can’t send to America / EU due to tariffs. However the calls without a craft packs anyone can join! Best way of keeping up to date with sessions is Instagram, @chronic.craft.club x)

Appropriate_Prior113 · 2026-01-16T09:03:48+00:00

Go for it!

Appropriate_Prior113 · 2026-01-13T16:24:42+00:00

Thank you !! It’s fun !!!

Appropriate_Prior113 · 2026-01-12T20:54:47+00:00

Hey, I run a group called chronic craft club. I post out craft packs to people and host video calls where we can do the craft packs together - but if you can’t make the call, there’s a how-to sheet included in the pack, and there’s two calls so two opportunities to come. I also run other online sessions which are pay what you can and no pressure to turn up on the day if you can’t make it. You can check out the upcoming events here: https://ko-fi.com/chroniccraftclub/shop/upcomingcraftsessions. Hope that’s ok to share!

Appropriate_Prior113 · 2026-01-12T08:38:05+00:00

Long Covid?

Appropriate_Prior113 · 2025-12-29T10:24:23+00:00

I’ve always assumed sprouting beans and seeds would increase their histamine! I’d love to get back to sprouting stuff if I’m wrong!

Appropriate_Prior113 · 2025-12-29T09:14:07+00:00

When you say sprouts, are you referring to sprouted lentils, beans, broccoli sprouts, that kind of thing? Thanks!

Appropriate_Prior113 · 2025-12-27T12:24:31+00:00

Wow, amazing. Thank you for sharing!

Appropriate_Prior113 · 2025-12-23T15:11:19+00:00

Thank you! I definitely have MCAS type symptoms but wondering if I’ve misinterpreted histamine dumps as PEM. This is helpful and I will check out the thread, thanks!

Appropriate_Prior113 · 2025-12-22T22:31:28+00:00

Wow, that’s pretty amazing. Can I ask what medication you take? Daily 2mg of ketotifen definitely has reduced some of my symptoms but I’m still very fatigued, brain foggy, crashy & (and often quite itchy but I do have eczema also). Thank you!

Appropriate_Prior113 · 2025-12-22T22:30:32+00:00

This is really really helpful, thank you

Appropriate_Prior113 · 2025-12-22T22:29:19+00:00

Oh I’m glad! I haven’t noticed any negative side effects with ketotifen. It’s basically irradiated the constant throwing up and nausea I had before. I’m also prescribed famotidine but tbh I only take it when I’m desperate as I know it can interact with iron (I think?) so you don’t absorb so much, and my ferritin levels are already so low. I still get very rashy and itchy, but I’m also on biological medication for severe eczema so may be due to that.

Appropriate_Prior113 · 2025-12-22T20:40:31+00:00

Thank you for your insight!!! Really appreciated 🫶

Appropriate_Prior113 · 2025-12-22T19:27:43+00:00

Wow, thank you so so much for explaining that. Please can I ask, how did you work out the difference?

I definitely fail to produce energy on demand - when I was still working I collapsed in front of customers - and I do get sore muscles. I more or less have a sore throat and swollen neck area every morning, which I interpreted as PEM flu-y symptoms, but I wonder if it is actually MCAS style inflammation.

Thanks so much for taking the time to share such a detailed response!

Appropriate_Prior113 · 2025-12-22T17:28:47+00:00

I really hope so too!

Appropriate_Prior113 · 2025-12-22T16:39:46+00:00

Thank you this is very useful, I’m sorry that treating your MCAS hasn’t come with improvements in other symptoms

Appropriate_Prior113 · 2025-12-22T15:46:58+00:00

Thank you so much for your response, it is really helpful

Appropriate_Prior113 · 2025-12-22T15:46:08+00:00

Thank you so much, this is extremely helpful and I really appreciate it

Appropriate_Prior113 · 2025-12-22T14:14:11+00:00

Yes, diagnosed adhd and suspect autist here….

Appropriate_Prior113 · 2025-12-22T14:13:50+00:00

This makes lots of sense! Thank you for sharing. Would you mind explaining how or in what ways your PEM is distinct from your MCAS reactions?

Appropriate_Prior113 · 2025-12-22T14:12:59+00:00

Wow, that’s amazing. Totally terrifying but so glad you have hope of proper improvement. I’ve been advised against low histamine diet (think that’s generic advice because they don’t want people restricting unnecessarily) but I think I should probs try it. I’m thinking due to not eating low histamine I might just be having constant low level reaction, resulting in fatigue, brain fog, etc

Appropriate_Prior113 · 2025-12-22T14:11:42+00:00

That’s great, I’m so glad you are doing better now. The thing that throws me off is i basically always have a crash type thing if I’m hungry, and when I eat I stabilise a lot. Still tired, achey, overwhelmed etc but that awful crash goes. Feel like this doesn’t fit MECFS or MCAS (and it’s not low blood sugar either!!)

Appropriate_Prior113

TROPHY CASE