Does anyone else have this?
I've had it for 11years. GPS and non specilast medics just look vague and don't realise how extensive it is in my body just think it's finger and toes etc. Or they start indicating that it's probably 'all in your head' and you need to change the way you think about it.
Have taken to avoiding them and gritting my teeth.
Can be yes
Constant burning pain keeps me awake half the night so very tiring.
I saw Professor David Bennett at the Radcliffe in Oxford. He runs a research project into SFN don't know where you live but I saw him in 2014for a definitive diagnosis.
You can be referred to him and his researcher will give you lots of tests and they will go into his project
It's one of the few in the world and SFN is a non sexy neglected disease
Good luck
Hello, I was just doing a search for SFN as I am awaiting tests etc and found your message so looked at profile and posts - hope that is ok. It made me wonder whether you had checked how well you are breaking down and getting rid of toxins, hormones etc. A long history of increasing ill health and a few missed clues made me do some genetic testing recently and also a functional (urine) test to see if my phase 1 and phase 2 liver detoxification are working properly. There are 5 stages to phase 1 and 6 to stage 2 (methylation being the best known). Poor methylation can cause a lot of problems (as I'm finding out!), including with oestrogen, and affects your ability to use B12 and folate at cell level. I had some other genetic variants showing a risk of poor oestrogen clearance too. (One gene, COMT, is linked specifically to Fibro pain.) It seems that I have an increasingly disproportionate reaction to medication/toxins/chemicals/foods as I have been unable to get them out of my system 'normally' for years - so an overflowing bucket! May be worth a read purehealthclinic.co.uk/heal... and purehealthclinic.co.uk/heal.... The good news should be that a genetic predisposition doesn't mean it is actually happening or ever will - mostly down to epigenetics so we have some control once we know about the issue (useful to know for those lucky enough to have children or grandchildren to worry about...I worry for my cousin's kids but they all think I'm mad so ignore me anyway) Best wishes
