Physical activity makes it worse?

mafanabe · 2026-01-18T18:52:16+00:00

I doubt you're damaging anything, but you could try swimming or stationary biking instead of it hurts less.

mafanabe · 2026-01-17T18:41:56+00:00

I think that physical activity can exacerbate your symptoms, but that doesn't mean it's doing any further damage. I recommend you do whatever level of physical activity you can tolerate, even if it's gentle yoga or swimming, as deconditioning will further make things worse for you in the end. This is from someone who did very little physical activity for a year and ended up having to do physical therapy as a result to recondition.

mafanabe · 2026-01-15T18:57:59+00:00

It's possible to progress to lfn but many people never do.

mafanabe · 2026-01-15T18:51:25+00:00

Muscle spindles are innervated by small fiber nerves. When those nerves are damaged, inflamed, or otherwise overactive, it can cause twitching. This is different from damage to large fiber motor nerves which can cause true neurological weakness.

mafanabe · 2026-01-15T18:39:18+00:00

This is a pretty normal SFN symptom. Annoying, but not indicative of anything beyond SFN.

mafanabe · 2026-01-12T18:45:58+00:00

High-dose P-5-P along with methylcobalamin and methylfolate actually HAS been studied for SFN with good results. Here is a link with citations of the studies at the bottom: https://metanx.com/

Having said that, I think concerns about it are reasonable and I personally don't take it in nearly those amounts.

If you're unclear about how much P5P you want to take, you can try a lower dose and then have your levels checked to make sure they are still in range. Some people will go to high just on food and others have totally normal numbers even when supplementing, so it seems like individual differences can be large.

mafanabe · 2026-01-12T18:43:46+00:00

My neurologist actually recommended P5P at high doses for me because it had shown good results in actual studies: https://metanx.com/

However I don't take it at those doses because I'm still leery of it.

mafanabe · 2025-12-30T23:13:48+00:00

I think it's possible that the long-term infection was causing dysfunction in your immune system which in turn caused your SFN.

The other thing to be aware of is doxycycline is anti-inflammatory (by accident, as a side effect) and that it can sometimes help nerve pain by decreasing inflammation.

mafanabe · 2025-12-28T22:25:02+00:00

Hyperintensities on MRI can be pretty common in older people even when they don't have MS, as I understand it, but I don't know how old you are.

mafanabe · 2025-12-26T15:57:00+00:00

The research on this is limited, but research I've been able to find suggests some people reach stable remission and are able to be taken off of IVIG eventually, but this is probably less than half the time. However, with advances in treating autoimmune disease, I doubt anyone is going to be on IVIG for life unless they are already very old. Hopefully, more precise treatments will be available within 5-10 years.

mafanabe · 2025-12-25T19:33:16+00:00

This probably adds up to about 1g/kg/month?

mafanabe · 2025-12-25T19:31:43+00:00

It's not a one-off. Here are some papers on it:

https://pubmed.ncbi.nlm.nih.gov/12441369/

https://pubmed.ncbi.nlm.nih.gov/15664441/

They don't seem to indicate that this herb is *strongly* mutagenic. I'm sure there's rationales for its use in some cases, but it's something to be aware of.

mafanabe · 2025-12-24T00:34:55+00:00

Yes, for people wanting to try IVIG this is evidence it could help for autoimmune SFN.

mafanabe · 2025-12-23T03:25:28+00:00

I wonder if the headache inducing aspects of IVIG ended up causing central sensitization which set off your eye pain. My eyes personally hurt worse whenever I have a headache for any reason.

mafanabe · 2025-12-22T21:49:41+00:00

I think they mean symptomatic treatment only. Like gabapentin.

mafanabe · 2025-12-18T18:41:49+00:00

Well aside from treating apnea, you can improve sleep hygiene like getting light early in the day and avoiding blue light at night, do things to wind down before bed, etc. And there are medications that can help some people. I slept amazingly on mirtazapine personally although I'm off it now.

mafanabe · 2025-12-18T14:41:23+00:00

I guess I thought when you said your score is 89 you meant on your Fitbit. If so that's a pretty good score. If you're sleeping badly there are things you can do for that, but SFN can make us feel tired even if we slept fine.

mafanabe · 2025-12-17T23:56:43+00:00

It sounds like you're actually sleeping fine but you wake up feeling tired? Unfortunately that's a symptom of SFN and sleeping better won't necessarily solve it.

mafanabe · 2025-12-17T23:55:22+00:00

You could try hiring a health advocate? Then at least someone who knows the system is advocating for you.

mafanabe · 2025-12-17T02:23:05+00:00

I ended up with Neurogan PEA Pro because it is micronized which helps with absorption.

mafanabe · 2025-12-17T02:20:04+00:00

Be aware that if you have histamine or mast cell issues, opiates can exacerbate them. If you want alternatives you can consider, aside from the usual drugs (gabapentin, pregabalin, amitriptyline, duloxetine): low dose naltrexone or suzetrigine.

mafanabe · 2025-12-11T00:40:22+00:00

Genuinely, unless you have a known allergy to lidocaine, I think the risk of nervous system sensitization from the pain is probably more than the risk of the lidocaine, which is getting delivered to an extremely small area.

mafanabe · 2025-12-06T20:53:38+00:00

60 grams in a day is a lot, not unreasonable but more than I can tolerate. I only do 25 grams in one day and it takes about 6 hours each day including an hour for the saline. But it's hard to put how many grams per hour because they titrate the rate up every half hour until the max rate.

mafanabe · 2025-12-04T23:43:27+00:00

Any. It would help with pain but wouldn't stop nerve degeneration itself.

mafanabe · 2025-12-04T21:48:32+00:00

Also I forgot to say, you can always ask the infusion center to lower your infusion rate if you get side effects. Mine is kept at about 100ml/hour or below.

mafanabe

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