Hi there, sorry for this long message but I am hoping for some advice or help!
some background to me: I am a 23 year old female with health issues for many, many years (predominantly since I was 6). At the age of six I was kept in isolation in hospital with a virus that we don't know the name of. From this illness I suffered convulsions, vomiting, very high temperature etc etc. Since then I have been sick, I had shingles at 10 and was diagnosed with Tourette's Syndrome at 17 (very late diagnosis). Along with all of this I have had reoccurring issues with temperature control, stomach problems, temperatures, nausea and painful skin to the touch. I missed a lot of school as a child due to these issues along with a period of bad migraines (they have now been treated and aren't an issue).
More recently (the last 8 months) I have become the most ill I have ever felt. This 'period' of illness became it's most prevalent after a hip operation. Prior to this all the aforementioned symptoms were nearly constantly there, however now it is on a level that I have never experienced before. I am tired all the time, regardless of how much I rest or sleep, I have very sore and stiff joints that primarily affect my arms but on and off my hips and knees too. My muscles get very sore and tired after doing even the smallest things and I on bad days struggle to eat and lift a glass up without pain and feeling the brunt of it for hours after. I have lost 14Kg in these 8 months, I am nauseous nearly constantly, have bowl issues frequently. I get ocular disturbances, including 'light' flashing around and also fuzzy vision, a lot of the time I get very dizzy accompanied by eyes blacking out and numbness down my arms. I get bad numbness and pins and needles in all limbs, back and neck pain, as well as a weird sensation of 'pricking' or 'stabbing' pain moving around my body that often makes me yelp slightly. I have myoclonic jerks which are separate from my (controlled) Tourette's, along with my leg giving way and also buckling often. I am very sensitive to hot and cold and am sweating nearly constantly (aside from this horrible heat outside) with night sweats. I also have very sore skin to touch, that also moves around and effects different areas at different times. I am finding it hard to hold pens at time (as someone who loves drawing this is a real issue), I am also finding myself losing my short term memory, stuttering, struggling to find words.
Due to all this I have had to defer my final year of university as I was unable to work or attend anymore, I barely have a social life as I often find myself feeling too ill to do anything or too tired, when I do I spend days and days after in bed in so much pain.
I have had every test under the sun including Lymes, Lupus, MS etc. All came back negative except for high levels of Glandular fever immoglubin in my blood. I have basically forced my GP to send me to neurology as she just said that 'hopefully it will get better'... it's not. Apparently to her I have no symptoms of ME. Does anyone have ay advice on where to go or what to do from here? I am so sick of it all!
Thank you and sorry for the long message,