Hi I am new here and am in desperate need of advise!! I am Canadian and have struggled through for 15 years with no diagnosis but these last 3 years have been hell as pain worsened and now I have constant burning skin pain. Briefly as I can my history is hypersensativity to medication (antibiotics and anti convulsants). balance, fatigue, vision problems _ mris are normal EVP showed delays in eyes and legs. Evps seem to change over time one had delays of legs and hearing, last one worsening delays in legs. The burning skin started last year at this time. I now take Fentanyl 150mg and dilaudid 8 mg 4 hrs to keep on top of it...but last few weeks is worsening again!! My skin has loosened, become wrinkled and very dry. I have never had this before. My neuro wanted me seen by vascular dr but they think it is neuro. I had blood clots DVT in leg and Pulmonary embolism at 27 and last sept 2011 I had another PE. I sweat profusely even in cold, skin to touch can feel cold at arm by wrist yet hot at top of arm. These temp differences happen all over my body. The burning is worse when I first wake up...even burns inside my head, moving is agony, like the blood is fighting to flow through my skin.
I don't know what to do! It takes 6 mths to a year to see a specialist and my family doctor just wants me to accept what is happening as chronic pain. But with so many other symptoms I don't buy it.
I have read about Small Fibre Neuropathy but have not been tested for it. Can i go to the states to have this done? i don"t want to wait anymore. This is the worst I have felt - and believe me that means alot!!
I thank you so much for reading this and if anyone has ideas or suggestions - I would be tremendously appreciative!!
Thanks again!