Edited , 8 users are following.
I wrote a few posts on this forum last spring, after having many months of debilitating flu like symptoms and nervous system related symptoms. After a while of obsessively looking for recovery stories on the forum, and feeling discouraged when I didn't find many, I promised myself I wouldn't return to the forum until I was well and could provide you all with an uplifting recovery story of my own. Well, since I am still not well and have come to realise a few things about this virus, I have to break that promise in order to discuss my thoughts on this virus/illness/condition with you. Not sure what I am looking to achieve, but hopefully get some further understanding on the mechanisms of this mystery virus, or whatever it is that is causing these strange symptoms.
Summer 2016: Brain fog, memory problems and a buzzing/electrical feeling in my whole body started. Occasional nausea and irregular heartbeats. Chalked it up to not enough sleep.
Oct 2016 - April 2017: New job and new relationship.
Started getting sick a lot with flus, colds, stomach problems, fungal infections and recurring cold sores (had them all my life but they increased in frequency).
March 2017: Stressed out from my new competitive job and from having to call in sick all the time. Developed shingles (not common at the age of 26) along with headache and flu like symptoms.
April 2017: After the shingles had healed I started feeling dizzy, nauseous, nervous, had joint and muscle pain and was extremely fatigued. Quit my job as I felt my body was breaking down and I couldn't keep up with work.
May 2017 - Aug 2017: Started a new low-stress job. Had occasional joint pain, pain between my shoulder blades and random burning on my skin during the summer. General health check only showed slightly elevated liver enzymes.
Sep 2017: Moved in with boyfriend and started exercising several days a week. Soon got neck pain and a pressure like headache that stayed with me 24/7 for seven weeks straight and wasn't relieved by pain killers.
Oct 2017: Caught a nasty flu-like virus with cold symptoms that stayed with me for 4 weeks.
Nov 2017 - Apr 2018: The October flu never really went away, or rather, it morphed into the following symptoms:
- Muscle twitches and a restless/buzzing feeling in the whole body
- Muscle weakness
- All over joint pain and burning muscle pain
- Sharp nerve pains in forearms, hands and head
- Tingling, pain and numbness in whole left facial nerve + jaw tremors
- Intense pain and soreness in thoracic spine
- Burning sensations on skin (felt like shingles but without the rash)
- Blurry vision, light flashes, eye floaters, sensitvity to light
- Sound sensitivity and high pitched tinnitus
- Nausea and loss of appetite
- Periodically severe anxiety and feelings of depersonalization
- Brain fog and dizziness
- Racing heart for no reason, irregular heartbeats
- Breathing problems, felt like the breathing reflex sometimes just stopped working
- Insomnia despite exhausted, night sweats
- Low grade fevers and sore throat almost daily
- "Chemical smelling breath" according to boyfriend
- White tongue (brushing and scraping made no difference).
- Petechiae in throat and on neck, chest, arms and dermatographia
- Hair loss and beau's lines on my nails
All symptoms worsened dramatically after any kind of physical exertion.
I saw several different doctors and specialists and had ALL the tests done (Lyme disease, MRI of brain, spinal tap, ophthalmologist, blood panel, liver enzymes, STDs, allergies etc etc... ) Everything looked absolutely normal. In april 2018 I demanded a monospot test despite already having had mononucleosis in my teens. The test turned out to be positive and I was SO relived to finally have an answer to my symptoms and knowing I would eventually get well. But the months came and went and I still had severe relapses after any kind of physical exertion. At best I felt 85% better for up to 5 days before crashing again. I saw an infectious disease doctor and told him about my never ending symptoms and the positive monospot. He said it was highly unlikely that I had had active EBV for over a year and that what was causing these kinds of symptoms. He said that the monospot test is very unreliable and often shows false positive due to other reasons such as inflammation/other viruses etc. He thought it sounded more like ME/CFS, and said that one CFS-theory is that an infection throws the immune system off balance and causes it to attack the bodys own nervous system. When they didn't find any measurable amount of EBV in my blood nor spinal fluid I went with the CFS/ME theory. I started taking really good care of myself in hopes of being one of those who actually recover from it within the first few years, before it becomes chronic. The severity of my symptoms have definitely lessened since April. My hair has stopped falling out (phew!), my body aches have lessened, brain fog is lighter etc... But I still have some level symtoms each day and I can definitely not do any kind of straining activity without relapsing big time. So yeah, it does seems to be along the lines of CFS/ME.
But here comes the mysterious part... My boyfriend has been experiencing a few similar symptoms to what I have had the last year: Night sweats, sharp shooting pains in his jaw and ear, muscle twitches, pain in hands and forearms and dizziness. They seem to have been mild, he has only mentioned them occasionally and he hasn't felt sick or flu like with them, so I have hoped that they were only coincidences and convinced myself that I was being paranoid about them sounding similar to mine. (Note: he hasn't been aware that I have had these specific symptoms as I have had so many different ones that I have feared sounding like a crazy person if I told him about them all..) Anyways, now one of my closest friends has told me about these exact same "mystery symptoms" that she has been experiencing on and off for the last two years! (again, she doesn't know that I have had these specific symptoms either. I have just told everybody that I have had mono for a ridiculously long time as this is what I have believed). And now that I start thinking about it, I can think of a couple of more people in my social surrounding that have fallen sick with some unknown virus this last year and been sick for an unreasonably long time. These people are all over the age of 27 which makes it highly unlikely that it is EBV going around since 95% of adults already have had the virus and reactivation is very uncommon. And the symptoms don't really match up with those of mononucleosis, as much I would like to tell myself that they do.
When I read on CFS/ME forums (warning: don't do it!) they do have the exact same symptoms as I do... But so do war veterans affected by "Gulf War illness"... And so do people who believe that they have "chronic lyme disease"... And so do people who believe that they have "chronic EBV"....
Could all of the above really be caused by the same thing? What they all have in common are the symptoms and that no one has yet to found an explanation for them. They all seem to be somewhat contagious, since they all seems to cause occasional cluster outbreaks. This makes me wonder if there is some sort of undetectable virus that some people are more vulnerable to, and others are immune to, since not everybody are affected?
What are your thoughts?
And to those of you who have the same kind of symptoms as I listed, does anyone else in your social environment also seem to be affected?
All I know is I don't believe that my symptoms and the symptoms affecting some of my friends are due to EBV. But what then...?
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