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.'

Welcome to our PN forum.

I have to be brief this morning, as I am out the door almost for the rest of the day.

But I do have a question.... how was this treated? (not the drugs you now take for symptom relief).

http://en.wikipedia.org/wiki/Arsenic_poisoning

Notice the reference to lipoic acid?
I found the reference in that article to garlic (sulfur donor) interesting too.

Hi Mrs D

It wasn't treated. I turned up at an A&E Dept, they then sought advice from a specialist poisons unit and the advice was no immediate treatment was necessary as my symptoms did not warrant it. I felt really ill in a weird 'never felt like this' before way but although very nauseous and in pain, was not vomiting and alert etc.The blood and urine was taken and the results came through a fortnight later. They mentioned that chelation therapy? would be used if my symptoms were worse. I have since wondered if this had been done, whether I'd be ok now and not going through all this. I began to have neurological problems about a month after and 20 months later still trying to find a way to cope with it. Initially it was thought I would recover, but it's now thought this is permanent damage.

When I went to A&E (20 months ago) feeling really unwell, the blood and urine tests were done, but no treatment given. The test results took 2 weeks to come through as they had to be sent to a special poisons unit. The neurological symptoms started about a month after the A&E visit.

I don't know how you got Arsenic poisoning, but if you don't know, I would investigate.

Also you mention young children....do you drink well water? Arsenic is sometimes found in well water. Have your children been tested?

Are you in US? In the US you could consult an environmentally trained physician to have a good lab test your hair.

This would show if you are excreting arsenic, and if your hair is long, would give a timeline of the poisoning and excretion.

Not all labs are good qualified labs however.

I have read forensic cases, where victims were poisoned by arsenic by another person, and in those cases PN was the result. However, the recovery is not so much covered in those, as the process of bringing the criminal to justice.
This was an extreme case:
http://www.buffalonews.com/cityregio...ry/751679.html
Anne Rule wrote this true story in one of her books.
"Last Dance, Last Chance". The recovery of Mrs Pignataro is explained a bit at the end of this compelling book.

I love Anne Rule's true crime books. A person can learn a lot and I sure have.

So true that Ann Rule is teaching, how to read people and recognize sociopaths. Her granddaughter was my now deceased daughters best friend. I was so jealous when she got to spend the night at Ann's house, both girls thought I was crazy, her granddaughter has never read her books, calls them too creepy. I did get an autographed book from her though, I treasure it, she writes so so well. She has a website called annrules.com, very interesting look at a busy and very nice lady.

I love her books.... I've read many...
She brings out so much in them. Who'd think you'd learn about PN from one, for example.

I agree. She is great Over the years I have read pretty much all of her books. They are always good.