Hey! Just want to say these sensations were the first ones to SCARE the HELL OUT OF ME and began my journey with ME/CFS around 1999. Looking back I had experienced odd sensations even as a child; painful pins and needles from feet to scalp; IBS- intolerance to milk products; easily exhausted by mental/physical exertion, insomnia/hypersomnia/delayed sleep phase, horrible bloating, multiple and long-lasting skin rashes and infections....but as a child/adolescent I really thought these were NORMAL...and I was pretty invested in being NORMAL in those days.
Anyhoo, my first big crash was in 1999- I was a 7th year Senior in college and let's just say I was under a little bit of stress. My mother found out she had lung cancer and died within a year, I was in the midst of my first intimate relationship, I was pretty sure I was gonna finally flunk out of college, I had been prescribed Wellbutrin/Buspar for about 1 year,my younger siblings had been abandoned by their Dad back home and then I came down with what the school health clinic called a severe "Upper Respiratory Infection".
Well, let me tell you...it was more than that. All of sudden on top of the other "NORMAL" symptoms I was totally wiped out physically and emotionally by newer, scarier more acute symptoms---The main one being an overwhelming and disturbing POPPING, BUBBLING and TWITCHING sensation all over my body especially my head-thighs and feet, my arms and legs ached-not the muscles but even the skin was sensitive, nosebleeds, headaches and horrible PANIC and ANXIETY attacks like nothing I had ever felt. I was convinced I had Multiple Sclerosis, was having a Heart Attack or Brain Cancer all at one time. You have to understand I had never been "sick" in my life and had never been one to have the slightest concern about my health. I began, for the first time in my life to show up in local Emergency Departments explaining my symptoms and being told over and over nothing was wrong with me and that I was a HYPOCHONDRIAC, IT WAS ALL IN MY HEAD and my personal favorite EXACERBATED GRIEF REACTION. Eventually I became so despondent I had suicidal thoughts and ended up in a psych ward.
Needless to say I have been much quieter about the symptoms since then but the symptoms never went away...I mean the sinus infection/upper respiratory stuff comes and goes but POPBUBBLETWITCHING never stopped. I experience OI, Intolerance to Sun/Alcohol/Milk/Wheat/Meds, Migraines, Sleep Disorder NOS and now the worst.....BRAIN FOG and severe cognitive impairment....I know it is only a matter of time before I lose my job and my marriage. My husband is a doc and he says I am OVERLY SENSITIVE to my body sensations. I felt totally alone in my suffering until I found these forums while researching XMRV. I have not been tested but I have never been so sure of anything in my life as I am of this- ME/CFS is caused by a virus and I have been living with that virus in my body nearly all my life and it has caused physical and emotional trauma. With that being said I WILL BE AN ADVOCATE AND I WILL CONTINUE KICKING THIS VIRUS's ASS UNTIL I DIE. This VIRUS doesn't want to kill me...it wants to continue using me as a host so it can thrive. Well screw that. I AM NOT AFRAID ANYMORE. I AM NOT ASHAMED and I am not lazy, crazy or tired...I am SICK (ok...maybe a little crazy and tired). Ok, feels good to get that out. I'm gonna rest now.