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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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How did it start for you?

Messages
80
Was it gradual with symptoms accruing over a period of time or was it everything was good until that one day and then “WHAM”! I’m really sick. ?
 

Dechi

Senior Member
Messages
1,454
I had a first viral infection, got mild ME (didn’t know at the time). Almost 2 years later I got a second one and I got worse. I’ve had it since then, it’s been 5 years.
 

Runner5

Senior Member
Messages
323
Location
PNW
I went on vacation, broke my foot, came back sick from Seattle. It was pretty much overnight.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Was it gradual with symptoms accruing over a period of time or was it everything was good until that one day and then “WHAM”! I’m really sick. ?

Yes.:) The first time I got cfs was after a viral infection and it came on very fast. I almost completely recovered after about 2 years.

Then slowly became more and more fatigued over several years, until I couldn't work anymore. So I have had both almost overnight onset and a gradual onset over several years.

Jim
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I had surgery and chemotherapy for stage 3 cancer, got the predictable fatigue, was in a significant car accident and experienced a 4 month tragic saga ending in the death of an immediate family member.

By that point, my endocrine and immune systems were severely dysfunctional and I had 7 reactivated chronic infections, resulting in my ME/CFS.
 
Messages
80
I remember now having small, gradual symptoms like weakness, sadness, fatigue, soreness over like a 2 or 3 week time and then all of a sudden I got wiped out on about week 4.
Got weaker, anxiety and scared, heart pounding, more tired. Had no idea what was wrong. That was about November of 2016 right before I turned 50. Symptoms like fatigue, soreness, mental sharpness and fatigue kind of leveled off for the year. Had no idea what was wrong but was somewhat optimistic that we’d find some hormonal or Lymes thing going on. As we kept ruling things out I seemed to keep getting gradually more progressively worse and worried about not finding the reason Now here we are 17 months later with nothing left other than getting official diagnosis of CFS, I’m really sick and tired and down. Missing a bunch of work and worried about the future regarding Health and finances. I guess That’s my start. Hopefully the start ends soon. I’m ready to go to next stage of acceptance and survival. The survival part is scary though because I’m not sure how long I can keep doing this. I’m cautiously optimistic that a diagnosis will help.
 

Wishful

Senior Member
Messages
5,751
Location
Alberta
"WHAM!" for me too. I first felt like a flu was coming on (full-body aches, malaise), but I was surprised that it was gone the next day. I wondered if it was a reaction to some oranges I ate (rare for me). A week or so later, I had some orange juice (again, rare for me), and this time it felt like a full-blown flu. When that passed a few days later, I had some more orange juice. Felt fine the next day, so I thought it wasn't the juice. The next day, the flu symptoms suddenly flared up. I just happened to notice the clock was showing the same time that I had drunk the juice 48 hrs previously. After some research into allergies, I realized that I had suddenly developed a type IV delayed food sensitivity, first to oranges, then to most foods, plus a baseline of 'not feeling well'. I managed to stop the type IV reaction 2.5 years later after food poisoning, but still had symptoms flare up daily. It took me years to realize that it was no longer a type IV reaction, but a reaction to insulin following carb meals. It took another 10 years or so to realize that it was ME/CFS.

Oh, I had a tetanus booster some time (weeks? months?) before the 'WHAM!'. There's no way to prove it now, but I expect that was the trigger for my ME/CFS.
 
Messages
95
Location
SoCal
Always had it when young but typically only last a month or two. Now it's been consistent :(
 

Intuition

Dance with ME
Messages
26
Location
Melbourne, Australia
Had mild viral symptoms before going to bed one night.
Woke up the next morning with high fevers and extreme fatigue. Fevers eventually resolved but fatigue never left. Tried going back to work and had my first crash. Over the next month the familiar POTS, brain fog, and sleep disturbance all developed.
 
Messages
80
Anyone else have a gradual onset of like a month or two where symptoms added up and got worse and then you realized something could be really wrong?
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
Wham! Was on a hike (just a short walk on trail near my house). In excellent physical condition. On way back, suddenly felt totally drained. Thought I must be getting a virus. Went to bed thinking, "flu." Flu never got better. That was 25 years ago. (well, I had a partial remission at year 5 that lasted many years... relapsed 9 years ago).