Someone asked me for an update on an old post. Thought I’d pop my reply here to. The quick version - not much has changed. In pain, but happy. Would be happier if certain consultants could be bothered to do their job!
Hmm, not much has changed.
I’m currently 2 years (ish) in to the wait for a second opinion from neurology.
My GP has said that she still isn’t discounting MS, but she thinks I have small fibre neuropathy.
My feet and lower legs burn like I’m standing on hot coals & the flames of hell are licking my legs, but that’s where gabapentin has come in. It calms it, but doesn’t get rid of it, & it’s not very effective for the allodynia that is also over my feet, legs, hips and tummy.
Recently the pain has become worse, & I need to have a chat with my GP as I’m at the max dose that I can tolerate, and I think its effectiveness is wearing off.
It might sound silly though, but having taken the advice of some lovely people on here, I’ve filled my life with good stuff. I’ve gone part-time at work, I’m learning to play piano, and I’ve taken up gardening (when it’s warm 
). If I could get a neurologist to show me some respect and actually do a physical exam and not just shout at me about it all being in my head, I would be happy - I’ve made my peace with the idea that this pain will be part of my life for a very long time (maybe forever), & I find ways to work with it. I’m also aware of how lucky I am to be surrounded by such a loving supportive family, & a GP who has the amazing combination of listening to her patients and having the intelligence/diligence/compassion to research things for her patients.
So, still in limboland, angry with NHS neurology & frustrated beyond words that the pain clinic won’t see me as I have an outstanding referral for neurology, yet finding enough peace to be happy (& that is something that shouldn’t be underestimated).
Love to you all - hope your journey to finding answers is easier than mine x