[JoannaP79]

Hi all,

I have just joined the group, I am a 34 year old female, desperately seeking support and any words of wisdom. Will try keep it as positive as possible but I am struggling so much, I dont know what to do. Sorry if this is a bit long but here is my story.
I have had an autoimmunedisease called ankylosing spondylitis since 2001, managed this with painkillers and didnt affect my life too badly for the most part. Roll forward to 2013, 6 months after the birth of my son, I all of a sudden started feeling really unwell and rushing to the toilet every morning without fail and suffering extreme fatigue and feelings of anxiety. I lost weight (which I never could put back on) and had really strong feelings of weakness in my legs. This weakness in my legs has now progressed to the most horrific pain and feelings I have ever known. It has progressively gone from strange tingly, stingy feelings starting a few months ago to sever burning, stabing, numbness, tingling, prickling, mainly over the top of my thighs accompanied by awful joint pain in my knees. My legs have shrunk loads and are so white and pasty with thin mottled skin but also turn purple and blotchy and rash up bright red. I am now taking pregablin and today went crying to the doctor for more pain relief - I have just started tramadol - doesnt seem that effective.
I used my own savings yesterday to have a small fibre biopsy done in London. I have had peripheral tests done such as nerve conduction tests and these came back normal. I have been going back and forward to my rheumatologist saying something isnt right with my legs and he suggested part of it may be anxiety! I now cannot stop crying from the pain, discomfort and disability this has caused. I am on a waiting list for humira as recommended by my rheumatologist but just dont know if this is the right thing. I have other active autoimmune symptoms so am convinced this is autoimmune related although this isnt typical of ASpondylitis so is a new as yet unknown autoimmune lovely! No one can tell me what but I desperately want to start some treatment as its progressing so quickly and I wont be able to walk soon. I am a single mum to a 2 year old son and am struggling so much to keep up. I feel so desperately depressed, afraid and so alone. Only people who suffer neuropathy understand what this is like.
Does anyone here take IVIG for autoimmune related neuropathy and has it helped? I am desperate for some hope as I am now feeling extremely depressed to the extent I just dont know how I can carry on with this pain if it continues. I dont know for sure it is SFN as results will take another few weeks but I am convinced based on my symptoms that this is that. I have never known pain like it.
I feel so angry and devastated that this has happened. Is there any hope things can improve? :-(
Im sorry this is so negative, I used to be such a bubbly outgoing person but constant pain and uncertainty over what is happening to me is soul destroying.