Tim, Ally, cemc, Sue and others- thankyou so much for your responses and advice ref my nerve pain. I have incorporated all of your advice - Im on no starch using iodine test. Hardly eating much at moment as appetite is badly affected with this bout. I am taking all supplements incuding alpha lipoic acid and omega 3's. LDN has arrived - took last night but know this takes time. Couldnt wake u this morning!
So sorry to go on but I have a real concern now regarding the advancement of my symptoms-especially my legs. What Im concerned about is that my symptoms arent my typical AS ones. I'm actually not suffering back pain really apart from the odd twinge which is why Im so confused. I worry this is another AI disease on top of the AS which is scaring me.
The burning in my legs has become severe. I have burning skin on top of my thighs with little dots that are red/brownish depending on activity. My feet are pale and white and I have dark patches of skin on ankles for over a year. The rheumy said they are from my shoes, I nearly lost my mind; they are not from my shoes for certain.
The skin on top of my thighs burns to touch and i cant even wear jeans or anything anymore as its agony. My bum cheeks burn and sting too. I thought it was just post baby stretchmarks causing nerve pain but I dont believe it is now.
I havent been able to eat properly for over a year - no appetite at all and bad food reactions - but I know thats a typical AS thing for some people (I hope it is anyway).
I have weakness in the legs and now feel it in my arms a bit too. When this all kicked off over a year ago, comments were made about how white I was. I still have whiter skin than usual but my legs are ghostly white as are my feet and I feel like the skin is changing alot.
ECG nerve conduction tests on leg came back fine - so no peripheral neuropathy (at the moment).
As suggested, I am taking every supplememt under the sun and will be straight onto the doctors tomorrow for VitD and Vit B12 deficiency.
I cant tell whether this pain in my legs is burning skin/nerves/circulaiton. It feels like it is all 3. It is getting worse and worse and I cant actuall ythink straight with the discomfort which is why Im desperately on here pestering you all.
I apologise for going on about my symptoms here and as soon as I am managing this and in less pain (optimism :-) I will stop going on!
I am quite frightened, I am a single mum with a 2 year old boy and about to lose my job. I am so worried as its getting worse. When I had the usual awful AS symptoms, they never bothered me at all. My rheumatologist is lovely but I dont believe he is taking me seriously about my legs. Im debating whether to try see a vascular person - I dont know where to begin.
I am on no meds and am going to urgently request steroids and for long terms the azulfadine as TIm suggested. I just worry that this isnt AS and that these treatments wont help as it isnt neccessarily related to my AS. (I am HLA B27)
FInally - my ESD rate and C-protein levels werent actually that high when tested 5 months ago which is why my rheumy is just shrugging me off without treatment.
Thank you all - you are my only advice and support. One day this will all be sorted and under control and I wont whinge on.