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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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How did your CFS start?

How did your CFS start?

  • With allergies

    Votes: 2 4.4%
  • With flu-like symptoms (not being allergies)

    Votes: 25 55.6%
  • With a known infection

    Votes: 18 40.0%

  • Total voters
    45

A.B.

Senior Member
Messages
3,780
For me it was a sudden onset of mild symptoms that very slowly became worse over the years, until I eventually got a CFS diagnosis. There was no apparent reason, and no sign of immune system activity.
 
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Seven7

Seven
Messages
3,444
Location
USA
MIne was slow too, but I remember 2 things) flu like that was not really a flu.
second time and third, I remember very clear I had a very unique dizziness vertigo like episodes.
 
Messages
16
Location
The Netherlands, Europe
Just like A.B. None of your options apply. You need a few more I'm afraid.

I wasn't aware CFS can develop very slowly and it seems most CFS cases start with "flu-like illnesses":

http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Onset

I was especially interested in how many cases started with a known infection, "simple" flu-like symptoms or an allergy.

If I could, I would add other options, but it seems it is impossible to do so once the poll is made.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
MIne was slow too, but I remember 2 things) flu like that was not really a flu.
second time and third, I remember very clear I had a very unique dizziness vertigo like episodes.

Oh yes - I had vertigo too - thanks for reminding me! And nausea and vomiting and diarrhoea. I've put it all in my blogpost.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
None of the options apply to me, either.

Mine started with IBS and I was affected cognitively (memory) before I had any physical symptoms. I gradually got worse over a period of six years, developing exercise intolerance, oversleeping, very bad pain in my calves, much more noticeable brain fog and dizziness. Then I got a respiratory infection with sudden worsening. A few days after the infection started and for a period of about two weeks I also had complete amnesia, although apparently I seemed normal to everyone else.
 

Mij

Messages
2,353
Sudden vertigo attack. Extremely elevated anti-thyroid antibodies. There was no known infection that I'm aware of, but I don't think I was tested for them. My immune cells all tested in within normal range at the time.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
I wasn't aware CFS can develop very slowly and it seems most CFS cases start with "flu-like illnesses":

http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Onset

I was especially interested in how many cases started with a known infection, "simple" flu-like symptoms or an allergy.

If I could, I would add other options, but it seems it is impossible to do so once the poll is made.

Well that's what Wikipedia says but it's not necessarily a reliable source. I'm not sure if there have been any studies on onset. Probably. But you'd have to evaluate if they paint an accurate picture or not. I suspect it is a mixed bag.

I was both gradual and sudden onset.
Over at least a decade I had slow decline, but could function. Then I had a year of being very obviously I'll with constant sore throat, and a bit flu like, and struggling to function, getting more noticeably worse. Then I had a very sudden, almost overnight crash into being too ill to work at all.
Later I had GET and that placed me into a bed bound then mostly housebound state from which I have never revovered.
 

A.B.

Senior Member
Messages
3,780
CFS does often start with what seems an infection. I have a feeling that cases with sudden infectious onset have a better chance at recovering though. If that is true, one would expect a higher percentage of slow onset cases in a forum like this where many have been ill for a long time.
 
Messages
15,786
I had vertigo at the beginning too. I think I had some during the precipitating "flu", but also had some several weeks after I had supposedly recovered from it. Occasionally a I get a couple days of mild-moderate vertigo, but pretty rarely.
 

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
Mine started very slowly too (I'm actually happy to see others here with similar experiences, usually you do hear more about flu-onset).

I can now think back on my childhood and recognize a few things that were abnormal but I didn't think anything of it at the time. For example, in college I studied all night for an exam. Many others would do this occasionally as well. But I felt physically ill in the morning - sore throat, fatigue, flu-like etc. The others were just tired but easily coped the next day. I was completely crashed that day and then the next I was "fine" and continued as normal.

I didn't really know I was ill until 12 years later when I started with pins/needles sensation in my body, and weakness in my limbs, and then that night was the first time that I could no longer sleep well. My muscles became achy and sore and was diagnosed with FM. Over the next couple of years the number of symptoms increased until I could no longer work, and then I was diagnosed with CFS.
 

JAM

Jill
Messages
421
I have always had them. They come and go, but I remember symptoms as early as 4 years old and my family traces them back to birth.
 

Revel

Senior Member
Messages
641
Can't remember a time when I wasn't ill. Symptoms slowly built until I had a major episode aged 9, requiring hospitalization.

Have had similar crashes about every 8 years since. Each time I claw my way back up I find that I've lost a little more of my physical stamina that never returns.

Two years on from my last health hiccup, I am still housebound and extremely weak in my upper body. This is now my new "normal" from which I don't expect to improve further.

Dreading what the next bout will bring.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
The choices don't work for me either. My best guess was the combination of 3 months of Hong Kong flu plus tick bites around the same period.

Sushi
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
I wasn't aware CFS can develop very slowly and it seems most CFS cases start with "flu-like illnesses":

For many of us it developed slowly.

If I could, I would add other options, but it seems it is impossible to do so once the poll is made.

You can add more options (or maybe a mod would have to help you) but it would skew your results now as many have already answered. If you want to add more options, contact me or another moderator.

Sushi