Small fibre neuropathy - do I have it? - opinions requested
 

Hello and thanks for reading!
About three years ago I started to notice a burning sensation on my legs between the knees and ankles primarily on the outer sides. This would come and go for the first two years, several months and then return.
Over the past year I think it has become more frequent.
Here's the strange part. For the most part, I only notice the burning at night when I initially get into bed and cover my legs with a blanket. To get comfortable I have to arrange the blanket so it leaves my lower legs exposed and at the same time covers my feet which tend to get cold if not covered. The other odd thing is my legs seem to adapt as I find when waking my legs are fully covered but there is no burning pain.
When this first started I was given a complete neurological workup, including the shock test, and passed all tests and was dismissed.
This past year my dermatologist (not my neurologist) suggested I may have SFN. It sounds like it could be but because as the night progresses and the pain goes away makes me wonder.
Does this happen to other SFN patients?
Thanks for any opinions!!

Based on my experience and what I've read other people say, SFN symptoms have a tendency to worsen in the evening and subside during the night. My SFN symptoms in my legs are minimal when I wake up, and at that their worst when I crawl into bed.

I have the same situation with blankets on my legs from the knees down when I get in bed. I can only use certain type of sheets (Sateen) and I even have started ironing them as it feels better on my legs. However, when I wake up I have no burning and the blankets do not bother me. There are many days I don't want to get out of bed for this very reason.

Thanks for the replies!
Have you been diagnosed with SFN? Punch biopsy maybe?
Have you found anything that helps, other than narcotics?

OK, my diagnosis of SFN (which is severe, like my skin is on fire, my face, arms, hands and finger tips are affected) was made by my neurologist without any testing.

I have profound Peripheral Neuropathy, which was diagnosed with EMG nerve conduction testing, in 2010 and 2013, and I have several other neuropathic conditions, so I think just based on what I was experiencing was enough for the diagnosis.

I take 3600 mg of gabapentin every day, and most of the SFN is controlled. I still have numbness, tingling, and a sensation sunburn in my lower face, lips and tongue.

I wear braces on my lower legs, and walk with a walker (this is PROFOUND Peripheral Neuropathy) and when I take off my braces and get into bed, the bottom of my feet buzz, tingle and hurt like when you hit your 'crazy bone'. That lasts for about 3 minutes, and then it is gone.

I had to buy new sheets, because I had very high count Egyptian Cotton sheets, but they weren't really smooth, and my face was irritated by the pillow cases. So I bought lower thread count Pima Cotton, Sateen finish) and they feel cool and soothing. I just realized that I should have just gotten new pillow cases! Oh well

Best of luck and finding solutions to your problems with SFN.

Regards, ElaineD

I have a dx for SFN but didn’t have a punch biopsy. My pain management doctor talked me out of it as he felt it would become another place I’d have pain after. For example when I had frozen shoulder for a year after my shoulder burned and it never had before. I take Kratom for the burning and for me it’s been very good. I was able to get me off the narcotics with it. At night I use aspercreme with lidocaine or Salinas Lipocaine plus. I recently found something that works even better and to me makes no sense: Benadryl itch stopping Gel. I don’t itch and I don’t have poison ivy but it allows me to use covers and even makes me sleepy. Go figure! Btw I am in Florida too.

It does sound like fairly typical SFN symptoms. Might not be a bad idea to see the neurologist again and indicate that your your dermatologist suspects SFN. (Most of the tests they give you during a routine neuro workup are looking at large fiber issues. Small fiber issues are more difficult to diagnose and also very difficult to pinpoint the cause and to treat.) My case is similar in that my neuro never found specific evidence to prove SFN, and has only diagnosed me with "disturbance of skin sensation".

I was diagnosed via skin biopsy, which was relatively painless. Your doctor can order a punch biopsy kit from Therapath.