Originally Posted by MAT52

Hi Emily,

Your symptoms sound a lot like mine although I would have to add in a weird crawling icy sensation in my legs all through the days. I've suffered from this nerve related stuff for at least four years. About a year into it all my menopause was well underway and then my joint pain started up acutely. After this I was eventually diagnosed with Rheumatoid Arthritis and the nerve symptoms came and went alongside my rheumatic ones. However I am equivocal for autoantibodies. I did take three DMARDs over three years including injectable Methotrexate - and like yourself I'm terribly averse to drugs and also very intollerant. I came off them all eventually for this reason and the RA symptoms have never returned.

But the neuropathic symptoms, similar to those you describe, have gone from strength to strength over the last year and I have had many investigations - so far none have revealed anything. It is classed as a mild idiopathic small fiber neuropathy to date.

I take it diabetes has been ruled out and that you have no other worrying symptoms such as rashes?

My rheumatologist has agreed that in my case it probably is part of my multi-system autoimmune disease because I have a high ESR and other inflammatory markers and my rheumatoid factor fluctuates but was raised above normal when my symptoms started. I also have Hashimoto's Hypothyroidism of many years now.

One of the many things I've learned from this forum is that the amount of nerve pain does not necessarily equate to nerve damage - in fact numbness tends to represent a more advanced type of neuropathy than pain. I always think it's like when a tooth is dying and the pain is awful - but once it's died then the pain goes and root canal treatment can be done without any local anaesthetic. Push this up to a grand scale and to me this is how it feels. I have just had a skin biopsy taken from each leg and am hoping something shows up but have been warned it probably won't - and even if it does it won't actually show the cause.

I agree about symptomatic treatments such as Gaberpentin - which I tried too but was like a drunk and angry so only made it up to a medium dose before having to stop. I also tried (and loved) Amitiritpyline for 3 years until finally it stopped working and started causing severe heart palpitations so I stopped and had a giant flare up afterwards. Also I've taken Cymbalta for four months and had to come off this too for the same reasons you outline - I don't want to take anything until I know what's causing this problem. I don't mind so much with RA/Lupus drugs because they are addressing my autoimmune process at source but symptom treatments and me just don't work. I find magnesium spray helps somewhat and also take AdCal D3 and B12 sublingually although mine isn't very low. I have recently passed from extreme burning pain in feet and legs to very little pain but lots of cold numbness. A new phaze is born!

Good luck getting to the bottom of it all - I'm afraid I haven't got there yet but I never give up hope that I will.
Warm regards, Mat