Diagnosis and Treatment of Pain in Small Fiber Neuropathy, 2011, Hovaguimian & Gibbons

Oldish paper but interesting.
Abstract
Small fiber neuropathy manifests in a variety of different diseases and often results in symptoms of burning pain, shooting pain, allodynia, and hyperesthesia. Diagnosis of small fiber neuropathy is determined primarily by the history and physical exam, but functional neurophysiologic testing and skin biopsy evaluation of intraepidermal nerve fiber density can provide diagnostic confirmation. Management of small fiber neuropathy depends on the underlying etiology with concurrent treatment of associated neuropathic pain. A variety of recent guidelines propose the use of antidepressants, anticonvulsants, opioids, topical therapies, and nonpharmacologic treatments as part of the overall management of neuropathic pain. Unfortunately, little data about the treatment of pain specifically in small fiber neuropathy exist because most studies combine mixed neuropathic pain syndromes in the analysis. Additional studies targeting the treatment of pain in small fiber neuropathy are needed to guide decision making.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/

 

Yup, that's me.

 

This is my experience too.

My neuropathy has been described as idiopathic.

The only medication that is tolerable and works for me is codeine + paracetamol (acetominophen) but I can only get a tiny amount of that from my doctor.

So before I get into bed I cool my feet in a bucket of water I keep beside the bed then turn the ceiling fan on to dry them.

Like clockwork, 90 minutes later I wake feeling very ill and physically agitated in every cell of my body. (It's very hard to describe.) This is probably not related to my feet but there's no way I can tolerate the burning of my feet once I've woken up so I dunk them again. After about an hour I eventually get back to sleep.

Very often I wake after another 90 minutes with all the same symptoms. After another dunk and waiting for the other horrible sensations to subside again, I sleep for the rest of the night. This happens all the time.

Cold water is a bit of a miracle for me but a challenge in the middle of winter.

 

The widespread feeling of discomfort, resembling pain but not quite the same, in the whole body is just a manifestation of SFN right?

It triggers the suffering centers in my brain the same way pain does. It's like experiencing pain but without the pain.

 

A simple question, could the following be related to SFN? :

It's not every day, but recurrently, either when I go to bed or wakes me up at night, my feet burn, like boiling, and very hot to the touch (only my feet). More than unpleasant sensation making it impossible to sleep without cooling them adequately for several minutes (eg with a "magic" bag taken from the freezer).

 

I get this, too. Feet literally red hot as in lobster-red and measurably hot. Highly disagreeable. Suspected (but unconfirmed) erythromelalgia.

It seems to be another mystery condition but there may be a link to SFN.

Davis MD, Sandroni P, Rooke TW, Low PA. Erythromelalgia: vasculopathy, neuropathy, or both? A prospective study of vascular and neurophysiologic studies in erythromelalgia. Arch Dermatol. 2003 Oct;139(10):1337-43. doi: 10.1001/archderm.139.10.1337. PMID: 14568838.
https://pubmed.ncbi.nlm.nih.gov/14568838/

 

Thank you very much for this information @Ravn , it enlightens me. I didn't know about erythromelalgia. Without doing a self-diagnosis, I'll keep that in mind. This is one of the "weird" symptoms I have with ME. Couldn't tell my GP about it, yet another "mysterious" symptom. Facing suspicion or indifference, no thanks. Since it's not everyday and I manage it, I prefer to endure in silence.

NB: reading on the subject, I realized that it also happens to my cheeks ...

I found a recent and succinct presentation in my language (French), made by a doctor from my Province (see page 16). Strangely, I already take 2 drugs (amitriptyline and pregabalin) which are recommended as a treatment, for my chronic pain and sleep disorder.

https://www.ssvq.org/wp-content/uploads/2020/11/KOENIG-Martial-AcrosyndromesVasculaires_SSVQ2020.pdf