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.

I know what you're going through even though my symptoms are different, I know very well how desperate you may feel.
My SFN is not caused by a autoimmunedisease.
It changes your life though.
I hope you MRS.D can help you

Welcome JoannaP79.

Just wanted to offer you a hug.

My symptoms nowhere near as bad as yours and I find them scary and upsetting enough. I am also a single parent (of a 10yo) and I understand how much being ill can make things seem to fall apart when you are alone and responsible for a child.

I hope you find the treatment, care and relief that you need.

Hi Joanna,
Welcome to the group. It is a great place to be! You are not alone. The people here are very knowledgeable and helpful.
I am sorry about the time you are having. I know what its like to take care of little ones and be terrified and hurting.
Is IVIG an option for you? I hear some stories that it can really help.

So sorry you find yourself here with us, Joanna, but you are not alone.

Hi Joanna, I am hoping that you are experiencing an acute phase. Many conditions have these. Some of the symptoms fit ,others don't.(always the case). I had a diagnosis that ranged from one Dr to the next. Periferal Neuropathy, Amyotrophy. I had muscle wasting, lost 60 lbs, knee pain butt pain,lumbar pain, had to start using a walker. But things are turning around!! It is not so bad now. If you use the search engine here, maybe you can read about the mottling of the skin. I remember others. If you are caring for a two-year old there is no need to talk about excercise but there is a universe out there of sufferers ready to help w/ niutrition, vitamins,pain, sleep, etc. Good Luck, Ken in Texas.

Hi Joanna,
I'm so sorry you are going through this. I can feel the pain in your writing and can relate to it. Mine started after a strange bout of bathroom issues and odd abdominal pain that would move around to different parts of my abdomen. This lasted from May - early August 2014. Then in Sept., I suddenly got horrific skin burning that was in my face, arms, hands, chest back. Feels similar to a severe sunburn. Had other neurological symptoms such as facial numbness, muscle twitches, hands that would ache like I had arthritis, squeezing sensations in my arms, feeling really cold no matter how many blankets I had on me BUT the burning was and is the worst symptom.

I've had many tests (not the small fiber one yet) and nothing has been found to explain my symptoms. I have been on Gabapentin and have gotten better. I've noticed alot of the symptoms have either left or come up less often. I even get long periods of no burning (2-3 weeks at a time often). The last burning pain I had was on Jan 22 2015. It always comes back but the intensity has not yet been to the severity it was when this first started happening.

I only wanted to share my story with you because I know when something acute like this happens and you are in so much pain, what crosses the mind is am I actually going to have to live like this, why can't anyone help me, I'm in so much pain but I still have to work this high stress long hours job. You feel terrified it will never get better and it makes it worse when you don't know the reason. I don't know if it's the Gabapentin that's helping me or if I'm getting better on my own. Early on, I would never have had 2-3 weeks with no burning, no way.

Big hug to you and just know you aren't alone. I know what you are feeling and know you are scared (I'm 39 by the way, not too much older than you). Have you tried Gabapentin, it's for nerve pain. Some people it helps and others it doesn't but it's worth a try.

By any chance have you seen if any of your medications (if you take any) could be causing this?

Please keep posting and let us know how you are doing and the results of your small fiber test.

Keera

Hi all,

Thankyou so much for your lovely replies. I have since seen my rheumatologist and sadly he is telling me that sometimes a cause wont be found and you just have to manage the symptoms and get on with it. I am on pregablin now and take one to two tramadols a day. I've just started this combo so hope that it helps.
Don't know for sure if it is autoimmune but Ive been told it prob isnt related to my ankylosing spondylitis (AS). Think it has to be immune mediated as its just too much of a coincidence that my AS plays up and then I have this too seperately.
I will let you know the outcome of the SFN test. I really hope and prey this improves or just doesnt progress, which it feels like it is :-(.
I feel better today as Im not in screaming agony as I was when I wrote my first message. I have noticed that I just can't touch alcohol - red wine especially as the next day I am in the worst pain in my legs. This again makes me sure this is neuropathic as I understand alcohol is to be avoided.
I am going to look at all the threads for nutrition, excercise and supplements and work my hardest to try implement them.
Thank you all for you kind helpful words.

Wow, we have somewhat similar stories, are the same age, and this happened roughly in the same time frame. Mine started in Feb 2014 with major burning that started in April/May 2014. I'm in the middle of getting lots of tests done, but once all the diagnoses are settled, I will definitely post my story. My burning is so terrible and came on so strong, that it made me feel absolutely crazy.