[Gildedlily]

Hi

I've been on here briefly once before and got help plus a warm welcome!

Arsenic poisoning was confirmed last year via blood and urine tests, and the diagnosis is mainly Small Fibre Neuropathy.

Like many of us, I dream of the day when I will be pain free. If I do virtually nothing ie severely restrict my physical activity and literally rest in bed majority of time, then what I now take is pretty helpful:

150mg pregabalin (x2 a day)
20mg amitriptyline daily
0.75mg citaprolam daily
Durogesic transdermal patch 12mcg/hr changed every 72 hrs

But of course life isn't like that, I'm busy and have 2 young children so spend all my time in pain of varying levels, sometimes managing to just grit my teeth and carry on, sometimes in tears with the pain, sometimes screaming into a pillow so the kids can't hear. This may seem like a really stupid question, but why does the pain get worse with increased activity?

When the durogesic was added in, my neurologist said try to cut back on the other meds. I tried it with the citaprolam - after 3 days without it, I was in extreme agony, like my arms and legs had been set alight. Have been too frightened to drop back on the others since.

Tried some supplements suggested by Mrs D, but unfortunately didn't notice a difference.

I wonder where will it all end? The meds keep getting added in, but we still haven't got to a point where the pain is sufficiently under to control for my daily living.

Anyway, about a year ago I had a range of tests (just one group of many) which I still don't really understand and I wondered if anyone can tell me what they mean:

'The findings are in keeping with predominately small fibre neuropathy - given that her skin biopsy intra-epidermal nerve fibres are within normal limits, but her heat evoked potentials are not obtainable in the face arm and leg, there is a suggestion of nerve root involvement, or involvement of the level of the dorsal root ganglia. Arsenic poisoning could present as polyneuropathy, or indeed a variant of Guillain-Barr Syndrome. In this patient the findings in our tests are compatible with the latter, although I would suspect here that both forms may co-exist.'