Quote:
Originally Posted by Keera
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.
