Seven Year Journey
 

Hi to all, not sure what I am doing as I am not very computer savvy. I suppose I am wanting to tell my story in the hope that someone may be able to make some suggestions for managing Small Fibre Neuropathy. After 7 years going from this one to that trying multiple drugs and having doctors just not believing me about my pain, I was sent to a Prof of Neurology who was quick to diagnose small fibre neuropathy on the basis that (she is a Professor on Neurology and she does not require any tests to prove her diagnosis.) I have been put on 600mg Lyrica a day and although some of the burning has lessened I am not able to freely move around without pain in my feet, legs and back. My feet have constant pins and needles and get cramped up after I sit and stop for a rest so depending on how long I have been on my legs the pain often travels up my legs as well. Hands are pins and needles and lack sensation and numerous other little things that prevent me from having a normal excistance and unlimited movement. I agree my symptoms are typical with this diagnosis but I can't find anybody with a medical knowledge of SFN to explain the condition and the prognosis and management of the pain. The Specialist says go to your GP and the GP says that is why we send you to specialists. Some days I feel really defeated by this SFN and google till I just get totally confused. Would like to talk to someone with an in depth knowledge of SFN that can tell me why in layman terms. So here's hoping I might find a needle or two in the haystack of information.:confused:

Welcome to Neurotalk.
 

You definitely want to do some reading in the Useful Websites section of the Peripheral Neuropathy section here:

https://www.neurotalk.org/peripheral...-websites.html

Generally, small fiber neuropathies preferentially or exclusively attack the small sensory nerves that are thinly myelinated or unmyelinated, and which subsume the sensations of pain, temperature, and a number of autonomic functions such as blood pressure and peristalsis of the digestive tract. The symptoms are therefore sensory or autonomic in nature, thought these can be quite varied in both kind and intensity.

Hi jennysgn

Welcome to NeuroTalk :).

I don't know enough about SFN in detail to say much that is useful but the PN forum here (https://www.neurotalk.org/forum20/) is very active. I am sure that if you post there you will get lots of support and helpful suggestions from other members.

This is a long shot but the annual meeting of the Australasian Neurology Society is in Brisbane this year (https://www.ans.org.au/). If you went along to it as a visitor you might be able to find QLD health professionals who can help you.

All the best.

Thankyou for that info
 

Thankyou I will look at the Brisbane seminar and try and get down to it. I am 5hrs north of Bris (Bundaberg) but I can get down there with the train. If the dates are good for me. Thanks again. Jenny

Jenny, I had another thought.

You could have a look at Healthshare (Healthshare | Empowering Australians to make better health choices).

Heathshare is intended for Australian residents. Anybody can ask questions there for free and its health professional members try to answer them. You can also search it for health professionals who are geographically convenient for you.