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I'm a woman in my 3rd decade (doesn't let me say my age!) who has experienced nerve pain, numbness, tingling, spots, rashes and a whole host of other symptoms like twitching, severe fatigue and balance issues (too many to type!), for around a year and a half. My right side is affected, my ear is constantly sore and muffled, my skin, glands and lymph nodes hurt most of the time and my jaw feels dislocated and feels like it needs clicking (slight swelling). The pain worsens just before the spots appear (I get them around my scalp, nape, face, in mouth and upper back), and my blood work showed that my white cells returned to normal after a dose of acyclovir......but according to my GP and others I have seen, it can't be shingles! Their theory rests upon the fact that it is recurrent and on two occasions, it had crossed the boundary and appeared on my scalp above my left ear and along the front of my hair line. Also, my family (mother, 2 of my brothers and 2 of my sisters) have also been suffering with it! My mother had it first in the same places as me, my sister (a hairdresser) had it a few weeks later on her wrist (she had done mums hair and then mine the next morning), then I got it and then the others also caught it. My sister also cuts a guys hair who had been suffering from shingles of the scalp for over a year, before any of us caught it. They say you can not catch it but I had it twice around 6 years ago on my trunk, and I had been working with people who had shingles on both occasions. I wonder if perhaps my family are susceptible to the virus and perhaps struggle to shake it off. My pain and skin irritation is constant, but I get flare ups of the rash/spots regularly. I recently spoke to a GP about a recent flare up in my mouth which appeared on the inside of my cheek and soft palate at the back of my throat, he issued acyclovir and it had halved the pain! In fact, whenever I have had it this happens, but it comes back within a week or 2. I wish the doctors in the UK could see past their set view of the virus and how it behaves, because so many people seem to be experiencing shingles these days. I often wonder if the virus had mutated or if there are different strains, because medical professionals don't seem to know enough about it and the studies are exceptionally poor. This virus has taken over my life and has turned me into a bogged down recluse, I work because I have to but I am too exhausted to do much else and my colleagues do not understand it or take it seriously at all. I take something for the nerve pain but not a strong dose as I have to be as alert as possible at work, and I take codeine when I get home. I just hope that one day it will disappear, that I will be free of the pain and that my children can have their mum back.... I hope that happens to all of us that are affected by this horrible virus. I also hope that we can be heard by the many medical professionals who are letting us down through sheer ignorance and a complete lack of research! Thank you for listening to my ramblings!
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