Thinking through how my CFS changed when I got recurrent virus

vision blue

Senior Member
Trying to have clearer thoughts on exactly what changed. I was sick before I got a recurrent virus, but it changed things.

Most limiting symptom was profound fatigue
Huge PEM
Tendonitis (sometimes i think bursitis) multiple places for no apparent
reason,, or very minor use
Muscles would feel like ran a marathon for minor use
Huge food sensitivity to aged foods, and then any non-fresh food - would especially cause sleep disturbances (myoclonus, interruptions, visual images, loud sounds) , left sided weakeness
A consistent rise in body temp compared to before I was ill
No longer caught colds or sore throats
resting heart rate in 90s
Muscles got weaker with attempts to strenghtn, not stronger
Was unable to walk a block even though used to be a hiker

Enter the viral event - i believe i caught it from a docs office; can go into more detail if it matters. Appeared to be either hsv1 or zoster based on synptoms, rash, the triggers, and response to antivrial (which alas i cna't take),now appears not zoster because has crossed the midline and is more of a cluster than a line. This recurred and the virus itself caused some horrific symptoms each time. Puzzling because I've had "cold sores" (hsv1) since young childhood and that's supposed to protect you against other strains. One other quick confound in there though - i also had a respitory illness with fever for one week (Oh so unusual for me, and caught from a doctor) and it was followed by a bad chest cough for at least 3 weeks. A few wees after recovery, landed in ER with stuff i think was connected - my first atrial tachycardia, severe vertigo (not my first) . So its hard to tease apart from the herpetic recurrent virus. but one or both of those left me with new symtponms that has changed my illness, and these flare with every viral recurrence. Oh wait, one more thing intervened.well, i'll mentioned that some other time. I'll see if can upload a pic of a recent recurrence. Not even the rashes behave like proper hsv1 rashes.

Seem to have sympathetic excess all the time and always
"revved up"
Everything feels overstimulating
Very high bp and very labile bp.
Big drop in resting heart rate
Big sustained drop in body temp
Heart pounds
At first tachycardia and pots, now my heart rate is not as
responsive i don't think but pouinds instead
Huge temp senstiivity issues- almost never comfortable. eithe
freezing with chills or burning up too hot - happens both day
and during hnight
Hair loss over body, eyebrows, legs, underarm, pubic
Big cognitive issues - attention and STM disappeared, and new
onset speaking issues with saying wrong words and it feelign
funny, new onset extreme emotional responses
Wake up with "surges" in nerves in heart and head
Many sleep interruptions and poor sleep and not sleepy
(with the virus, head would "fly" and nerve pains in head)
Prone now to PVCs and PACs

So find myself wondering just what i did with the virus. Before, my analysis based on alot of things (not that i kjnew this then) was that I have MCAS which lead to both CFS and an autoimmune disease - but was it CFS? I mean, i never had brain fog.

and now its differnt- suddenly there's the brain fog and what feels like neural degeneration and the other things i mentioned- so what did I do? Was it really CFS before? I did have PEM so seems like yes that's CFS and not just AI disease. Is it possible i had CFS before but only now did it reach brain? I'm guessing i've got HSV1 in both perhiphrar and central nervous system giving me dysautonomia and neurodeneration. Not sure exactly how this leads to sympathetic excess, but i guess tied in to the dysautonomia. And whether i also have AI encephalitis, don't know (and did that 3 week respitory illness do some of the heart arrhtymia or is this all from the recurrent herpes virus? )

So not always sure how to think about it. But oddly, my biggest limiation now is no longer debiliting fatigue. Before this viral thing, i could give myself the illusion of feeling good by not doing anything. But no longer since this. I"m uncomforable much of the day every day. don't feel like myself and can't "rest". And before, i could barely walk a block. When i worked really hard at it, i made it to maybe 2.5 blocks after months. And now? - get this=- I can walk a round trip of 1.1 miles!!!! You'd think that were heaven- except in its place, i've got adreniline (I think) making me crazy all the time. A huge limit is overstimulation- so I actually do LESS now than I did before- with the only benefit being i can walk sometimes. ( i retain many of the symtpoms from before, too - the muslces, the tendons etc etc)

Two other quick things: , peppered in there, have been bouts of severe vertigo, leaving me with permanant changes to balance and visual senstitivity to motion. And then another thing- i have to check my notes to see where in the mess these started: Huge swelling s with excurciating pain - we're talking moments of near 10 - in various places- and then GONE in a week or so to completely normal. ONe rheum said possibly palindromic rheumatism. (shoulders, knees, wrists, finger, elbow- minor trauma sets it off, and i do mean minor).

One of regrets is i didn't realize i had CFS before and thought only AI disease even though the whole story didn't make sense. And then the realization of mast cell activation came much later. Anyway, had i kown was cfs before i thinjk i could have helped things; mind starting to get fatigue and wander-y so can't finish the though.

Sorry for long post. I still didnm't write it correctly. unlike some on this list, and unlike a skill I do have to write other things effeciviely, when it comes to writing about my own condition, my writing falls apart. If its obvious to anyone what i did to my disease with the added viral bonus, would be interested to hear

ok, this is my new years day accomplishment. Happy New Year everyone.
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Tendonitis (sometimes i think bursitis) multiple places for no apparent

I developed some bursitis in my elbows. Talk about odd crap. (does not involve any tendons or the joint)

The bursa: can fill up with a clear fluid. Or not. The elbow that had fluid did not hurt much. The one that didn't, hurt all the time, sometimes looked red, and that went on for almost two years. Cycles with the other symptoms.

Maybe I did injure my elbows throwing up during one of my recurrent bouts of the Critter Lives In My Stomach (my GP claims its caused by injury).

I'm getting reactivations in the stomach/gastroperesis/fever chills suggesting virus is flaring. Seems to happen about once a year, sometimes twice. Takes weeks to recover (if this is recovering).

The bursitis is finally gone for now, and I'm extra careful NOT to crawl around on my elbows. Didn't happen when I got sick again last month.

The inflamed bursa hates the laptop: really hurts near the computer.

(aside- I saw my chinese herbalist, I did soak my elbows in some traditional herbs which helped, but it stuck around for some months. I"m reminded I yelled at him, when I said my elbows hurt and he said well you have arthritis. NO Its not that- the bursa is right under the skin, isn't in a joint. And he isn't listening. Classic typical moment that words don't convey and humans make huge assumptions.)

Meanwhile, not sure whats up with your list, but we can sure generate a litany of body dysfunctions. Personally I had decades of mild, Eppstein barr driven, and then got these gastro things recently which seemed to have taken me down to a much lower level of functioning.....


Senior Member
Interestingly your 'After' list sounds vaguely similar in some ways to how I was when I was more moderate. I felt like I was always on adrenaline, awful sleep disturbances, etc. A lot of that was likely triggered by some allergen exposures.

Yet the 'Before' list is vaguely similar to how I am now which is more moderate-severe (completely housebound at the best). I'm currently relaxing in bed with my laptop and some tea and my HR is 100. Even mental activity gives me 1-2 days of crushing PEM. Constant tendonitis from things as simple as picking up a grocery bag. Muscles are weak that I've needed crutches or a wheelchair for several years. And so forth.

vision blue

Senior Member
@Rufous McKinney Thanks. So one take-away is we can get stuff piled on top, a mess...Interesting on bursitis stories. I get the elbow bursitis too btw; in particular, i can't push down.e.g. If i try to use a cane, the next day i have elbow bursitis, otoh, I'm fine with a walking stick.

@hapl808 So maybe you should give yourself a virus :) Only kidding. or half kidding anyway e.g. have you ever tried changing the balance between Th1 and Th2? (especially since you mention allergin in part I). What happens when you distract your immune system?
Glad you posted that and i think it is interesting. Wonder if our big adrednilne means there has to be a crash after- any triggers that sent you over from part 1 to part2? Thanks for post