[MAT52]

Ive just commented on some else's post here about bone pain with PN because this describes mine to a tee as well - only mine also affects my hands and face as well as legs and is bilateral.

For me I've found that all the tests have been inconclusive apart from confirmation that I have a connective tissue disease/ systemic process occurring. I do hope my doctors are right to assume it's benign - but it certainly doesn't feel this way to me. It seems to have progressed to the front of my mouth and nose now so I feel as if this part of my face is in a vice or being sucked by a vacuum nozzle. As with all the other burning pins and needles and shooting pains (not an issue anymore thankfully) no one has yet been able to give me a reason for this awful predicament I'm in. Wet sensation in legs, freezing or burning extremities, sweats, panics, hypertension, palpitations etc and widespread burning parasthesia all through the night.

I've tried four disease modifying antirheumatic drugs now - had anaphylaxis and pancreatitis with three and severe GI problems with the other. I've tried Amitriptyline, Gaberpentin and Cymbalta and had heart palpitations, mood changes and dizziness so I've quit trying all these kind of drugs.

Steroids and NSAIDs work for me at higher doses but they cause me other problems long term so I'm having to taper off Prednisolone now and the PN is flaring. Because nothjng has shown up in nerve conduction tests, brain MRI, EMG, Lumber puncture (apart from paired Oligloclinal bands) or skin biopsies - the neurologist and rheumatologists X 2 have all suggested there's nothing more they can do for me.

I haven't found anything that helps yet and I have tried food eliminations, suppliments, cutting out sulphates in toothpaste because I also have this in the front of my mouth and nose now.

The doctors are implying that it's psychosomatic (Fibromyalgia hadn't been mentioned but I feel it's implicit) - certainly idiopathic - but I don't believe this for one minute. A new general practitioner I saw last week told me bluntly that patients like me need counselling not steroids. My shed rate fluctuates with the pain but they refuse to check this in the area of Scotland that I've moved to. Only my CRP gets checked and it doesn't respond to my nerve pain in the same way as my ESR used to.

I'm being told by my new GPs to accept that I will have it for life and therfore have to learn to live with it. This seems to me to be a counsel of despair - if I knew I'd have to live with it at this degree of severity forever more then I'd take all my sleeping pills and have done. And yes mine feels as if it's in my bones too - foul thing it is!

I personally won't rest until I know what's causing it - because it's progressing and is now so widespread. I struggle standing still for more than a short period but can exercise fine if only I wasn't so overwhelmingly exhausted because of nights of having no sleep from the pain. Any idea what I can do next? And at what point should I ask to see a neurologist again for repeat checks - when the pain progresses to lack of sensation? Is this when it might show up in nerve conduction studies or skin biopsies or on scans at last? My body thermostat is completely kyboshed too and my sense of taste and smell keep coming and going - I either freeze or burn! It's as if I've entered some kind of hell although in theory my life is very fulfilled and exciting just now - potentially anyway!