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Ok so long story short.....2 and a half years ago a physio trapped a nerve in the right sight of my neck during mechanical neck traction! The trapped nerve sorted itself over a few weeks nut left me with excruciating constant burning in right hand/fingers/forearm. This also began in my left arm and is now as bad in my left. Then after a few months the same pain started in my feet but was sporadic - this is now permament but in varying intensities over the day.
So my symptoms are:
Burning, throbbing, shooting pains in hands and feet - varying intensities over the day but always there.
Allodynia and hyperalergisa - a breeze on my arm, or dogs tail touching it can send me through the roof - this isn't constant tho.
Burning etc is in both the palm and dorsal of hands (used to only be palm) and the same with feet so when really bad I am unable to rest hands so hold them out so as to not touch anything. Unable to have blankets rest on feet or feet rest of sofa etc when really bad.
At night I often sleep with arms hanging off the side of the bed and feet hanging off of the bottom of bed!
Things I have tried......
Currently on 600mg of carbamazepine a day with only a little improvement in hands but feet have worsened while on it
Epidural injection thingy in neck
Pacing - I have adapted everything so that I am able to do some things even tho this still causes pain
Probably more but I can't remember right now haha
I am at my wits end, I have lost my job due to not being able to fulfil the role suitably (HLTA in a primary school so lots of teaching 5/6/7 year olds) due to the constant pain, lack of concentration, side effects of meds. I feel my world is shrinking, everything I do causes the pain to get worse do I sleep my days away - when I finally get to sleep. My kids do more house work than I do so suffer with severe guilt!
At My latest hand physio appointment she sat there and said"oh your complex, let me get my colleague!" The colleague said exactly the same and that she has no idea what to suggest! Thanks 😂
Specialist pain nurse has said that we have more or less exhausted medication ideas apart from morphine etc but as I'm only 34 and have 2 children we both agree that morphine isn't really the way forward, especially when I get drowsy with many medications.
The rheumatologist has said there is no more that he can do but has sent a letter with a couple of recommendations (denervation and spinal cord stimulator) to one of the local pain consultants........ that's great! Thank you! But said pain consultant is currently only working privately at the moment due to a conflict in views with the new pain service in the area!! Sho i have made a private appointment to see him £200!! To get his opinion as the rheumatologist said that he is the best one (which he is). After moaning to ACE (our pain management system) i have also just been given an appointment with their pain consultant..........
But what else can they offer? What else can I ask them to consider?
Sorry for the long post - I have probably forgotten lots too!!
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