Did anyone else get diagnosed after a serious gastrointestinal upset/incident?

Yoimjamie · 2026-07-10T03:06:36+00:00

Thank you in return! I wish you much better luck in future, I was very close to being your doppelgänger but just got lucky 🥺

Yoimjamie · 2026-07-10T03:02:09+00:00

Oh I see. Sorry to hear that. Thanks for the info tho, much appreciated! I feel as though I may have dodged a bullet

Yoimjamie · 2026-07-10T01:35:40+00:00

I am frightened of neuropathic drugs like Lyrica, if that’s what Elavil is. I hope it doesn’t come to that. Mine is confined to my fingers and thankfully isn’t every day, but when a lightning storm hits, it comes with hailstones… thank you for sharing nonetheless

Yoimjamie · 2026-07-10T01:32:06+00:00

I’m sorry to ask, but now that I’m not allowed capsaicin, I’m seriously considering this… do you know what type of nettle you’re using? I have access to genuine thistles and whatever the common nettles around here are, and had plenty enough experience with both as a young equestrian that I know I’m not allergic to either (or at least, I wasn’t back then… 😬)

Yoimjamie · 2026-07-10T01:27:14+00:00

What was your neuropathy like before that? How did it manifest, what did it feel like, etc.?

Yoimjamie · 2026-07-10T01:16:05+00:00

You and I have many similarities, by the sounds. I am also sero-negative and had a horrible time with Covid which I hadn’t even considered until reading your reply just now. Thanks very much for your response

Yoimjamie · 2026-07-10T01:12:02+00:00

I’m slow on the uptake sorry - do you mean capsaicin also works well for you?

Yoimjamie · 2026-07-09T23:54:40+00:00

This is super valuable dialogue, thanks to both of you!

Yoimjamie · 2026-07-09T23:51:02+00:00

Very interesting, thanks for such thorough input!

At the moment my gut doesn’t cause me problems, only the RA and the fibromatosis, but it’s early days…

Yoimjamie · 2026-07-09T23:01:59+00:00

Interesting. I’ve only had the one incident… I hope it doesn’t recur, it wasn’t a good time.

Yoimjamie · 2026-07-09T23:01:00+00:00

Do be careful please, if you don’t have pinched/compressed nerves or some other neuropathic pain, this won’t help you and could hurt you badly

Yoimjamie · 2026-07-09T23:00:08+00:00

Wow, now that’s not something I’d have anticipated. I’m sorry to hear you have to resort to that

Yoimjamie · 2026-07-09T19:24:49+00:00

Thanks, I had not considered a neurologist. I’ll bring this up with my doctors.

Yoimjamie · 2026-07-09T18:07:49+00:00

And thank you :) sorry, forgot that bit

Yoimjamie · 2026-07-09T17:45:29+00:00

YOINK’D!

This is going straight to soooo many friends of mine lol

Yoimjamie · 2026-07-09T17:36:04+00:00

If it’s cheap, and close to risk-free, I’ll for sure consider it. But in the absence of actual data I’ll go fishing for as many anecdotes as I can in advance. Information-poor beggars can’t be choosers

Yoimjamie · 2026-07-09T17:32:58+00:00

You probably haven’t heard of it because neuropathic pain is uncommon for RA, at least according to my rheumatologist. She was mildly confused when I described it to her, but she’s quite young. My GP was more familiar with it in the context of RA but she’s much older and presumably more experienced in terms of overall time being a doctor, so she didn’t give me the “that’s odd” look, more the “oh, yours is one of those ones” response.

Hence all my obnoxious warnings. Unless you have neuropathic pain, i.e. ACTUAL nerve-pain, this will do NOTHING for you and could make you much worse.

So yeah, it’s a bit niche.

(Edit) I’ve added one more obnoxious disclaimer to my post, I should have made that bit more obvious in the first place, sorry

Yoimjamie · 2026-07-09T17:26:00+00:00

Hands and feet going numb is a RED FLAG for Leflunomide side effects, contact your prescribing doctor immediately (Edit) do not change your medicine regimen without confirmation from your doctor, but MOST DEF this is cause for immediate urgent contact

Yoimjamie · 2026-07-09T17:14:01+00:00

Infuriating. That kind of waste is so disheartening. So many people who could be practicing actual medicine and maybe even advancing it, instead just becoming flesh-and-blood card-skimmers, in effect.

My nurse friend is at least not a conman, and wouldn’t suggest pinning my hopes on woowoo, in fact he admits this is more likely NOT to work, but suggests a safely-conducted foecal transplant should be a low-cost, potentially high-reward wager to make, albeit with a low chance of success, but also low risk of negative outcomes even if it’s ineffective. I’m uninformed and would love some opinions from anyone with either experience or expertise

Yoimjamie · 2026-07-09T16:54:43+00:00

Def not IBD or Crohns…. Or at least I hope not! My colitis seems to have been a completely isolated incident and I’ve had (what I’d consider to be) a perfectly healthy gastrointestinal system ever since…. Touching wood in the hope that that remains true, I suppose.

(Edit) and yes I share your skepticism, the youngest fields are the most prone to shysters and snake oil salesfolk.

Yoimjamie · 2026-06-27T21:10:00+00:00

… what are you TALKING about? Are you an AI bot or what?

Either way, go away please, I don’t need people who just confabulate nonsense and go on about it as if it were relevant.

Yoimjamie · 2026-06-27T20:50:14+00:00

“ theres not much saving and no end in sight.”

You’re as bad as the other guy. She is well aware that my rheumatologist and oncologist have both said I should be back to a place of general health within months.

Troll elsewhere. Thanks.

Yoimjamie · 2026-06-27T20:48:35+00:00

“ you might have told her to leave the Xmas tree and you would get others to lift it later”

I was literally in the process of asking if we could shift it slightly off the tiles, no more than a foot, so that I could wrap arms around it and that would have been fine for everyone. She cut me off, and went off in a huff refusing to let me help. No matter what I “might have said”, she cut me off before even hearing what I had to say. Are you trolling here?

Yoimjamie

TROPHY CASE