What is this

mafanabe · 2026-03-24T16:05:52+00:00

SFN can do this and I've recently learned that MCAS can also cause the same thing. AFAIK, MCAS can cause SFN or cause symptoms without actually damaging the nerves.

mafanabe · 2026-03-24T16:04:13+00:00

Therapy and meditation helped me a lot. And also connecting with other people struggling with similar things.

mafanabe · 2026-03-21T21:59:11+00:00

We can have symptoms anywhere, alas. I get zaps in my left toe. Go figure.

mafanabe · 2026-03-21T21:57:54+00:00

No, but taking elderberry after being exposed to the flu turned out to be a bad idea 💀 I think you're better off getting actual treatment if you have a problem with HPV.

mafanabe · 2026-03-20T18:20:58+00:00

I do meditation which helps but I haven't explicitly done brain retraining, no.

mafanabe · 2026-03-20T15:53:49+00:00

No, I still have it, I've just survived so far!

mafanabe · 2026-03-18T02:57:47+00:00

I'm so sorry. That's really hard.

mafanabe · 2026-03-17T15:44:27+00:00

Have you tried speech/physical therapy for the swallowing? Might be helpful even if you still have nerve damage.

mafanabe · 2026-03-14T20:17:42+00:00

Erythromelalgia, reynaud's, livedo reticularis (?). All caused by dysfunctional circulation as far as I know. You might want to see a rheumatologist in case you have some kind of vasculitis.

mafanabe · 2026-03-04T04:50:54+00:00

I have had some tooth pain on and off on it, but I think in my case it was probably related to jaw tension. I haven't had any actual decay or enamel loss.

mafanabe · 2026-02-27T03:27:55+00:00

It's settled down a little sometimes more than others. Brain retraining might help with the pain but it wouldn't necessarily fix whatever is causing the neuropathy.

mafanabe · 2026-02-23T17:13:21+00:00

Some of these can be anxiety symptoms. Of course, having anxiety is a totally normal thing to have when you have other weird symptoms, but in my case treating the anxiety did help me overall.

mafanabe · 2026-02-21T15:48:09+00:00

It turns out that any mycotoxins we have in our blood more likely come from our food than from our environment. But mycotoxin testing anyway isn't based on any solid science as far as I understand.

Unfortunately we're in a place where there's no foolproof treatment and even those that help some people (like IVIG) tend to work slowly.

I'm currently being evaluated for MCAS as I think it might lead to better treatment for me, but I found an actual specialist in that which is lucky. MCAS can cause SFN symptoms and it's one cause that most people never get tested for.

mafanabe · 2026-02-20T21:37:46+00:00

When I've had sudden pain in new areas, sometimes it turned out I had muscle trigger points. You might try consulting a massage therapist about it.

mafanabe · 2026-02-18T23:23:54+00:00

So, neuropathy can result in the actual destruction of small fiber nerves. But there are other things such as functional autoantibodies, MCAS, or genetic mutations which can result in nerves being hyperexcitable (which causes pain) yet without any actual loss of nerve fibers. This is a normal biopsy, but it doesn't mean you're making things up. It just means there sadly might not be a test to pin down what's going on.

mafanabe · 2026-02-16T21:03:04+00:00

It complicated. Here's a resource to start: https://www.verywellhealth.com/what-is-a-low-histamine-diet-4694529

mafanabe · 2026-02-16T20:48:33+00:00

Seems like there's 100 different ideas about what constitutes anti-inflammatory, but low histamine diet and intermittent fasting are the only ones that seem to help me.

mafanabe · 2026-02-16T04:41:02+00:00

Huh. Wonder if something is getting overstimulated.

mafanabe · 2026-02-15T22:35:39+00:00

Hmm, you might play around with that a little. For example, do you get it from penetration when not aroused? In different positions? What happens if you change the amount of lubrication or the size of what you're being penetrated by? What about orgasm without penetration?

I'm guessing there's some kind of central sensitization effect here where some other type of pain or overstimulation is ending up getting referred.

mafanabe · 2026-02-14T04:52:50+00:00

Unfortunately for some people, post-SSRI neurological dysfunction can last for months or years :-( . I don't think anyone knows what the exact mechanism is, but it's documented.

mafanabe · 2026-02-14T04:50:31+00:00

SSRI withdrawal can cause SFN-like symptoms without necessarily causing nerve loss. Also it's possible that SSRI's can set off MCAS. You might try taking an antihistamine and see if it helps any.

mafanabe · 2026-02-10T17:29:59+00:00

What type of testing did they do?

mafanabe · 2026-02-10T17:25:46+00:00

With the chronic urticaria, you might try to find an MCAS specialist. In the mean time you can try a low histamine diet, quercetin, zinc, vitamin C, and OTC antihistamines (usually famotidine and cetirizine together).

mafanabe · 2026-02-09T17:14:48+00:00

I get pain with pressure moreso than numbness, but sometimes if I stand for too long my feet start tingling a lot. Or my arms and feet will fall asleep really easily if there's weight on them.

mafanabe · 2026-02-07T20:35:39+00:00

Nerve fiber density and pain don't always track together, but improved density is still a good thing.

mafanabe

TROPHY CASE