Does your ME feel like your initial infection?

Leila

Leila

Senior Member (Voting Rights)
I came across this question on Twitter, I think in the context of longcovid.

For those of you that had a clear viral/infectious onset:

Do your symptoms resemble the initial infection you had?

For me, that's absolutely the case. If I had to choose a name for my illness that describes it the best, it would be "Chronic Mono"

Some symptoms got better over time, some got worse.
 
My initial infection was a gut bug (with vomiting). I had constant nausea for the first 2 years or so and gut problems tend to recur, with ramped up nausea, loss of appetite and sometimes vomiting with my PEM. But I also have other symptoms of my ME, and/or during PEM, that are not related to the initial gut bug, like headaches, sore throat, pain, orthostatic intolerance etc.
 
For roughly the first decade I would've said yes (same exact thing as in the OP, my GP actually did call it chronic mononucleosis - but then again, he was not what we would think of as ME-literate), then everything changed subtly over a period of several years and how I am now barely resembles what I started with. I had a sore throat, hypersomnia, moving sleeping patterns more or less from the beginning but could force myself to to things when I really needed or wanted to. Nowadays none of that is true anymore, the only constant is probably the PEM. But it is surprisingly hard to quantify when I think about it since ME just has so many symptoms.
 
My onset was a sudden viral/vertigo/mild sore throat/ear and grinding/nausea gut sickness. I don't know what virus I had. I went through 5 1/2 years of PVFS and felt that I had eventually recovered from that virus.

For the last 18 years I feel that my immune system has changed and remains activated, or unable to keep 'triggers' in check. I experience frequent viral infections and react to everything- dust/allergies etc. On occasion when my immune system 'settles' I can feel pretty decent, almost normal if I stay within my 'energy window'.
 
I first had mono for a while without knowing it, and struggeling at swimming practice without being sure why. Then a couple of months later me and my family had a stomach virus or something like that. I had never been so ill in my life, I just remember sleeping for a week, only waking up to drink, and food tasting like blood. When my family recovered, I still felt really ill, so we went to get my bloodwork done after a while and all the doctor found was that it seemed I recently had mono but that it wasn't an active infection anymore. He said I probably only felt ill because of some after effects of mono and that it would pass pretty soon. So I don't know if it was mono that caused my ME, or the second infection or a combination of the two. But I haven't had a day I've felt healthy after I got mono, so I count that as the start of my illness.

The first 3 or so years I would describe as feeling like an active virus infection. I needed to sleep 18 hours a day, and it was almost impossible to wake me up. I had constantly swollen glands, and felt very warm like I had a fever constantly. My PEM/crashing resulted in sleeping a lot. In the beginning daylight was extremely painful for my eyes, while now it's usually not painful, it just drains my energy very quickly and gives me sensory overload.

After the first years it changed. From sleeping a lot, to struggeling to fall asleep. Feeling a lot more of that electric/wired feeling, while the first years was more of a drowsy, sleepy, fever feeling. Now instead of making me sleep a lot, my PEM/crashes makes it very hard to sleep. I rarely have swollen glands though I always have a sore and dry throat. Instead of feeling warm like I have a fever, I tend to feel too cold. The PEM is more severe and lasts longer, and losing function after big crashes is more permanent, while in the beginning I could do pretty extreme exercise, get a crash and sleep a lot, and then get almost back to baseline (baseline was still feeling very sick though).

Some symptoms have always stayed the same, like the constant dizziness and severe brainfog, muscle weakness regardless of my fitness, often shaking from fatigue/exhaustion and getting the feeling of lactic acid build up very quickly.
 
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Trish said:
My initial infection was a gut bug (with vomiting). I had constant nausea for the first 2 years or so and gut problems tend to recur, with ramped up nausea, loss of appetite and sometimes vomiting with my PEM. But I also have other symptoms of my ME, and/or during PEM, that are not related to the initial gut bug, like headaches, sore throat, pain, orthostatic intolerance etc.
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Same here. Gastro infection with vomiting, then for several years low grade nausea that felt very similar. The nausea became less severe and less frequent with time, eventually becoming a symptom that occurs rarely.

Unfortunately as the nausea started disappearing new symptoms started showing up.
 
I was exposed to EBV via my boyfriend some months before my ME began, but although I developed a couple of swollen glands a few weeks after he first showed symptoms, I wasn't ill. (He was really unwell, and needed a couple of months off work.)

My worst ME symptoms in the first two years were continuous nausea and severe weight loss – my BMI would have been around 16.8. I also had energy impairment, frequent sore throats, and burning pain in my thigh muscles, but these weren't as bad as the digestive problems. The nausea resolved after the first five years, and never returned (it was hard to keep my weight up for nearly 20 years, though, despite eating like a horse).

So no, it's very different now. My symptoms, whether I'm in an active flare or am stable and pacing well, are much closer to the 'classic' ME profile.
 
chrisb said:
Not any more. But for the first 10 or eleven years every relapse felt like a recurrence.
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I would agree, that this was initially true for the first ten years or so, but over time new symptoms have appeared. Each successive major relapse sees new symptoms including food sensitivities, orthostatic intolerance, chostochondritis, different patterns of cognitive impairment, etc.
 
I had a slow and progressive onset, going for years before it got serious (with something I would actually call mild chronic fatigue for most of my teens), so it's hard to tell but it's mostly the same as the initial symptoms, just much more severe. Basically I don't have a short period of severe illness to compare to, but the long regression is basically the same song at lower volume. It started mostly with neurological and autonomic symptoms, brain fog started years earlier but was mild, and those are still there, stronger than ever.

No kidding I read a few COVID accounts that were nearly exactly the same as my course, except condensed within a few weeks instead of slowly over years. Almost spooky how well it matched but on a different time scale.

So I would say: yes, but it's complicated.
 
More than one infection may be at play, or have triggered what we call ME/CFS. I also had slow and progressive onset comprised primarily of neurological and autonomic symptoms, but had a vicious bout of acute Lyme that intersected roughly five years into that slow descent, and which caused rapid and lasting deterioration, and brought about a new symptom, PEM.

The acute Lyme was very different from the neuro and autonomic symptoms I experienced before that tick bite, and both symptom clusters are different from what I experience today. Acute Lyme is just like a stomach bug.

Trying to explain my current symptoms to a physician is virtually impossible. I try to suggest it's not comparable to what they know, but am usually met with arrogant denial. So I offer up an analogy, I say it's like trying to explain what allergies feel like to someone who has only known acute febrile illnesses. Sure, they are both immune responses, but they result in different sequelae. Same as channelopathies are different and unique (albeit technically not immune responses) Our's is a rabid chimera of a disease that clinicans were not taught about in school.

Which makes it all the more dangerous with psych's or their surrogates mucking up the research process.
 
My ME trigger wasn't clearly an infection. A tetanus booster may have been the trigger, but the first notice of something being wrong was what felt exactly like the onset of a flu, except that it was gone the next day. A couple of days later, it happened again, more severely, but still completely flu-like: aches, fever, chills, malaise. It turns out that this was a type IV delayed food sensitivity (involves t-cells, so is similar to viral activation) that suddenly sprang up. Pretty much anything other than highly-refined sugars, starches and oils would trigger the flu-like symptoms 48 hrs later. The fever and chills disappeared after the first few times, but the rest continued. I managed to stop the type IV reaction 2.5 years later, but the same symptoms continued to flare up several times a day 20 minutes after eating (I assume due to insulin increasing tryptophan transport into my brain, booting neurotoxic kynurenines). So, for that period (a decade or so), the symptoms were still mainly the same as from t-cell activation. I no longer get the multiple daily abrupt flare-up of symptoms, but the symptoms that remain are still the same as when my ME first started.
 
Peter Trewhitt said:
Each successive major relapse sees new symptoms including food sensitivities, orthostatic intolerance, chostochondritis, different patterns of cognitive impairment, etc.
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I can relate to that. I've had 3 major relapses. Each one lasted 1 to 3 months, then I gradually got better. However after each relapse I developed symptoms I didn't have before.

The first one was a dizziness and head pressure spell that lasted around 2 months. Eventually the diziness and head pressure got better, but never completely disappeared, now those 2 are frequent symptoms for me.

The second was a 3 month spell of morning nausea, loss of apetite and facial pain. Eventually the nausea and loss of apetite went away, however the facial pain remained and now it is a symptom I have every day. Soon after the recovery I developed other minor symptoms as well.

The third was another spell of nausea and loss of apetite that lasted 2 months. Again those symptoms went away, but once again soon after that I developed new symptoms (congitive issues, muscle twitching, numbness, food sensitivites, etc.)
 
December 1989 christmas week i had a stomach bug that lasted the whole week i recovered from that to come down with Beijing flu i lost 2 weeks in a high fever when i managed to get downstairs muscle weakness was the most noticeable symptom it then took me 3yrs to be able to walk without concentrating on every single step which is exhausting on its own i think i was in a constant state of pem for the first decade following medical advice who knew . but i have acquired multiple other symptoms over the years eye pain and discomfort tends to bother me a lot the only reading i can do now is on the computer or filling necessary forms that all ways gives me p e m .
 
duncan said:
More than one infection may be at play, or have triggered what we call ME/CFS.
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I had an infection at 20 years old that left me with complications. I didn't experience ME from this but I think the dysregulation of microbiome could have set me up for ME years later. Ten years after this I caught something viral - the first symptom was extreme dizziness for 2 days (never experienced anything like it before) then flu like symptoms developed with very hot sore throat. I didn't know at the time but this was my ME onset.

In regards to these two different infections that were complicated and left permanent disease I do feel that symptoms follow along the lines of the infection. For instance the first infection 'bacterial' I have the symptoms of a changed microbiome and with the second infection which was a 'flu like' ME onset I have the ME symptoms.

It's been very interesting reading the long COVID patient experiences. It sounds to me like they have fallen into ME. What they are describing is very much how we experience ME and PEM.

To answer the thread title I do think there are various symptoms that will be unique depending on infection that caused the ME and added to the usual ME symptoms and PEM that is experienced.
 
Yes, but.

When I first got sick back in 1984 I felt like I was hit by a viral freight-train. Out of the blue. Then I had positively crushing fatigue that put me to bed for months and there were a host of other viral-like symptoms that were really unmissable.

Swollen glands under my chin and the side of my neck that ached and throbed.

Bed-drenching night sweats.

Strong sensitivity to light (photophobia).

Strong sensitivity to certain chemicals that triggered feeling even worse (such as cigarette smoke, acetone, and unidentified pesticides).

Most of the symptoms other than fatigue and brain fog (and unrefreshing sleep) faded over the last 36 years. Still somewhat chemically sensitive, not not as severely so. The fatigue and brain fog go up and down, with day to day variability and trends over time. Not as bad as the initial six-months.

Bill
 
DigitalDrifter said:
I never got an initial infection, I had a very gradual onset. Does anyone have reliable stats on this? How many ME patients have gradual onsets?
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I've met several people irl that had a slow gradual onset without symptoms of an infection. All of them have allergies to many things, including mold. I never had sensitivities to anything until around 14 years into the illness.
 
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