Relapsed in 2019 with dysautonomia and sheet intolerance. Signs of SFN?

ChookityPop

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I relapsed hard in 2019 after working way more and way harder than I should. I dont know what I was thinking tbh.

In the beginning of my relapse I got a lot of pressure in my calfs when I stood still or while walking. Over a short period of weeks to a month ish I developed these problems in my legs. Lots of pain while walking, pressure in calfs(feels like blood pooling without swelling), pain behind the knees.

I was diagnosed with a tiny bakers cyste behind one knee a year later. From the symptoms behind both knees I assume I have had the same issues in both knees possibly from bakers cyste.
Those symptoms can come back but I keep them in check with compression tights, sleeves, peptides and maybe diet.

One thing I had forgotten about was this incredible sheet intolerance. I couldn't stand having anything on my legs etc when I slept. It was very uncomfortable. Another thing I had was that I liked cold surface on my burning legs, so I would lay on my stomach and move around the bed so that I could rest my legs on the cold surface. I dont remember if I did this at the same time as I had sheet intolerance.

I pushed myself too much in retrospect, because I didn't understand what was happening to my legs. I thought they would start working again. So I assume the sheet intolerance can happen today if I push my self way to much.

I did the craziest thing back then. I walked up a mountain top outside the city with my ex gf and two others with these legs. It takes 30 minutes ish to walk up and then we slept in hammocks. I slept for 3 hours in -3 celcius. In the coming two weeks I got worse and worse everyday single day. Ive never been that ill.

I dont remember if the sheet intolerance started before or after that but it was really painful. I very rarely struggle with it these days most because of pacing and compression I assume.

I get burning pain after exertion, this can be from typing too much that will make my arms burn.

What could that be you think? Sign of small fiber neuropathy? Any of you had this?

Edit: Should I drop the compression and try to trigger this burning sensation and possibly sheet intolerance before I eventually do a sweat test? Probably not necessary right?
 
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Starsister

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I relapsed hard in 2019 after working way more and way harder than I should. I dont know what I was thinking tbh.

In the beginning of my relapse I got a lot of pressure in my calfs when I stood still or while walking. Over a short period of weeks to a month ish I developed these problems in my legs. Lots of pain while walking, pressure in calfs(feels like blood pooling without swelling), pain behind the knees.

I was diagnosed with a tiny bakers cyste behind one knee a year later. From the symptoms behind both knees I assume I have had the same issues in both knees possibly from bakers cyste.
Those symptoms can come back but I keep them in check with compression tights, sleeves, peptides and maybe diet.

One thing I had forgotten about was this incredible sheet intolerance. I couldn't stand having anything on my legs etc when I slept. It was very uncomfortable. Another thing I had was that I liked cold surface on my burning legs, so I would lay on my stomach and move around the bed so that I could rest my legs on the cold surface. I dont remember if I did this at the same time as I had sheet intolerance.

I pushed myself too much in retrospect, because I didn't understand what was happening to my legs. I thought they would start working again. So I assume the sheet intolerance can happen today if I push my self way to much.

I did the craziest thing back then. I walked up a mountain top outside the city with my ex gf and two others with these legs. It takes 30 minutes ish to walk up and then we slept in hammocks. I slept for 3 hours in -3 celcius. In the coming two weeks I got worse and worse everyday single day. Ive never been that ill.

I dont remember if the sheet intolerance started before or after that but it was really painful. I very rarely struggle with it these days most because of pacing and compression I assume.

I get burning pain after exertion, this can be from typing too much that will make my arms burn.

What could that be you think? Sign of small fiber neuropathy? Any of you had this?

Edit: Should I drop the compression and try to trigger this burning sensation and possibly sheet intolerance before I eventually do a sweat test? Probably not necessary right?
I have had extreme problem with sheets and any clothes or sensations that has gotten progressively worse over 40 years. Started with burning feet in 80s then hands and eventually all over body, like one big blister from head to toe. Some days all I can do is lay on my side on smooth bamboo sheets with no clothes, nothing touching my body.
I suspect SFN and joined a FB group. Seen some neurologists but so far not gone through pain and expense of EMG and punch test because the said there is no treatment but pain meds which I am already taking (hydrocodone). Seems to be some overlap of ME and SFN. I don’t notice any improvement if I have no activity. At one point when I was still able to do it, I found that playing racquetball helped. .. they say those activities that work all 4 quadrants of body are great. I know someone who said they had neuropathy in their legs and healed it by “ walking across the country” on some challenge. I do know that caffeine makes my skin more sensitive almost immediately after ingesting. I think “autoimmune” neuropathy is a thing so assuming it’s that. The nerve pain as well as spinal deterioration for me are more disabling than the classic ME fatigue I had for many years. It is clear whatever ME is, that it just keep morphing into different things. Smoothest sheets I found are $250 bamboo ( sateen) from Carihola company. Now anything with ANY thread texture feels like shards of glass. My best wishes to you!
 

minimus

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@ChookityPop Sounds like small fiber neuropathy to me. It’s worth getting a skin biopsy, which is painless, if you can find a neurologist to do it. It seems to be the gold standard test for SFN, though some neurologists like Oaklander at Mass General think there may be false negatives. If positive, the same neurologist should run blood test panels to check for an underlying autoimmune cause, which might then allow for a trial of IVIG. Unfortunately, a third to a half of patients have “idiopathic“ SFN, which means no cause can be found.
 

ChookityPop

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@ChookityPop Sounds like small fiber neuropathy to me. It’s worth getting a skin biopsy, which is painless, if you can find a neurologist to do it. It seems to be the gold standard test for SFN, though some neurologists like Oaklander at Mass General think there may be false negatives. If positive, the same neurologist should run blood test panels to check for an underlying autoimmune cause, which might then allow for a trial of IVIG. Unfortunately, a third to a half of patients have “idiopathic“ SFN, which means no cause can be found.
I suspect SFN and are trying to get a sweat test here in Norway. They are lagging behind so hard. Its very unusual to get a skin biopsy here but Im going to get tested no matter what. Im doing the aa SFN panel on celltrend.de this or next week. If that is positive I think they will help me a little faster over here.

Idiopathic SFN patients wont respond to IVIG? I have seen that Oaklander study presentation on youtube, its super interesting. She is a genius!
 

minimus

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Idiopathic SFN patients wont respond to IVIG? I have seen that Oaklander study presentation on youtube, its super interesting. She is a genius!
Seems like people who respond best to IVIG have a strong autoimmune profile, in the form of blood work that shows high levels of and/or many types of autoantibodies. For those who have SFN but lack evidence that it is immune-mediated or caused by an underlying autoimmune illness like Sjogren’s, it‘s not easy to find a doctor in the US who will consider prescribing IVIG, given the lack of medical evidence to support its use and its very high cost. Insurance companies here also generally won’t authorize it. I don’t know what the situation is in Norway.
 

ChookityPop

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