The Onset Poll

This poll is on the type of onset you experienced. Because some studies have shown stressful events prior to onset are increased in general in ME/CFS it includes a stress component. Besides something as obvious as a chronic illness, loss of job or to the family researchers can include such events as starting a new job, moving to a new location and entering a new school as stressful events. Its up to you to decide if you were under 'increased stress' at the time.

 

Adding another option in the poll?

Cort, you might want to add another option to check off.

"Gradual onset characterized by numerous episodes of infection (viral or bacterial) over a period of time."


Probably not worded right, but I think alot of gradual onset's report this way, according to my doc.

 

Another gradual onset.....

Hope its ok to comment re: my answer to the poll. It was gradual. with severe migraines, possibly the encephalapathy for a couple of years while continuing to work. Then, after no clear medical reason given for my increased viral symptoms, cognitive fog and sleep problem, I seemed to fade out like a battery gone dead. Many, not knowing how to cope years back, kept going til we dropped;then tried to rest and repair... more relapsing than actual improvement. Reaching a plateau or window of a couple hours per day of 'routine' self care activity for over a decade+.
Keeping hope alive......SueC.

 

This is cool! Thanks for making these great polls Cort.

I'd like to see a poll that tallies if you are XMRV + or - and if you were acute or gradual onset.

 

I definitely had a sudden/flu-like onset - but in hindsight, I think I was likely having related (but not debilitating) health probs for 6 mos. immediately before that, possibly longer.

 

I left my job in Advertising to teach high school in 01. Each year I picked up some infection/flu/illness from the kids.

Prior to going to work as a teacher I was rock skinny with less than 10% body fat. I ran 5 miles every morning and swam every evening. The first year I taught I picked up some flu/infection and never quite recovered 100% (more like 90%). The next year was the same story and I was down to 80% (Was running 4 day's a week now). 03 The same story now I was down to about 70%, in 04 60%; in 05 I had given up running completely and was only swimming during the summers I had gained 60 pounds and it was all fat.

By the beginning of 06 I was working and that was it. On October 5th of that year I woke up one morning and couldn't move. My ex finally came and dragged me to the doctor 3 days later after the school had called and threaten to fire me. I had the worst case of mono, blah, blah, blah the doctors had ever seen and you know the rest of the story. I never recovered.

I will say that going on year 3 of this illness I am a small percent better. At least I don't look at the trees in my yard and wonder how the broccoli got so big. (big grins)

So does that qualify as gradual or is that like 6 flu like onsets????

 

I'm going to to add a category because I think your story George is more common that we think

 

I'm not really sure how to answer this -- for one, because I'm not sure I have CFS (I'm not currently diagnosed with anything), so I don't want to skew results on these things.

But also, I have a hard time telling whether my onset of whatever I have was very sudden, a flu about two years ago from which I never recovered (and during which I had very quick changes to things like metabolism), or whether it was more like George's onset (I had a whole series of bizarre sicknesses about ten years ago, some involving mysterious immune issues, which spontaneously resolved without ever being understood), or whether I had a lower grade issue going on for a long time that was thrown over some edge or triggered to a new level when I really got sick.

I can easily make any of the three interpretations, depending on how I look at things.

 

"Acute infectious onset (flu-like symptoms) out of the blue - no significant stress otherwise"

It looks like you guys are way in the lead.

I wasn't aware of the major significance of this particular pattern before joining this forum, but even before this poll, based on what I've been reading, this symptom pattern had begun to look like a clear infectious epidemic, and I've recently begun to worry that this epidemic is the phenomenon that Peterson + WPI have been investigating for 20 years. Hmm...I've begun to worry that I don't have an infectious retrovirus after all, crazy times eh? Wouldn't surprise me at all if this group is the people who are testing XMRV+ - the people who WPI have been investigating - and the rest of us are going to get left behind.

 

that sounds like a great poll for the future Mark.

Spit maybe you should decide based on when you demonstrated a really significant decline in your health such that you felt you had some sort of illness that repeated your ability to function rather than you just weren't as strong as before?

If you did the poll before I added another category then the poll category that shows up in italics when you view it may have changed - mine did. The poll is still accurate - it just doesn't know who you are anymore.

 

Ok. Went ahead and called it acute infectious onset. There was certainly a clear moment in time when I could not function, where before I could (and was actually feeling pretty decent at the time).

I certainly wasn't stressed, either. I remember starting my new semester just before getting sick, and I even remember thinking, hey, I'm finally doing really well with school! I like these classes, and I'll graduate soon! Yep, feeling pretty content. And then -- WHAM -- sick, sick, sick. Couldn't get off the sofa for weeks.

 

can't remember that far

Cort,

Can't remember that far back, for me it has been since around 1985.

But I can say that after an increased period of stress in 2006, I went down another notch from like a 7 to a 3, then went to hosptal for testing and lumbar puncture and came out a 1. crawed my way back to a 4 now.

 

Gradual onset sometimes hard to describe

In my case, I went through a period in the early 90's where I would kept thinking that I had something like AIDS, because I caught one bug after another for a period of almost a year.

Before that, possibly related, I had gone through a round of prednisone. I was an actor then and had lost my voice due to overuse and swelling of the vocal chords. I needed to finish the run of a play, so the doctor loaded me up with the steroids, which I found extremely unpleasant. So I quit taking them early. Soon thereafter came a bacterial infection and dose of flagyl. My digestive track was totally destroyed -- food passed right through and I became a skeleton and could barely stand.

All this I recovered from eventually but not long after developed what some would call fibromyalgia -- insomnia, pain, the usual. But I could still exercise. And when I did manage to get sleep, I could think better and seemed more like my old self. This went on for 8 years. Occasionally I would get bad pain attacks, was evaluated for rheumatoid arthritis and told I did not have it.

Then I caught a particularly nasty flu that kept me in bed 3 weeks. Things intensified after that. Soon I felt poisoned, constantly dizzy, could not think and speak at the same time, the usual cognitive nightmares, heart problems, etc. Got diagnosed, went on a TCA for sleep -- worst of the "poisoned " feeling went. Gradually have declined -- with a few good spells now and then which I ruined by doing too much. Am now about a 4. Was a 2 for a couple of months recently but began isoprinosine and am a little better.

Kind of a round-about gradual onset I guess.

 

I guess my onset was gradual, but it's unclear because I also had untreated hypothyroidism for several years, and I also have Postural Orthostatic Tachycardia Syndrome. I became significantly worse after a bout of mycoplasma pneumonia that presented with a meningitis-type illness with liver involvement. From that point on, I had flares more often, about every 2-3 months. (Flares meaning flu-like symptoms brought on by overexertion.) Now I've been acutely ill since August after having shingles and the flu. Also questionable strep throat that spread to my joints. (I say questionable because by the time they thought to do throat cultures, I was already on antibiotics for 8 days; the cultures were negative by that point.) I'm just now beginning to show improvement with doxycycline 100mg twice a day. I hope this is the key to remission because I REALLY need to go back to work.

 

There was a recent online poll of more than a 1,000 people conducted by the CFIDS Association. The most common onset there was sudden onset infectious-like (25% or so) but another large percentage cited both infection and another factor. Sorry, can't find the link now.

 

I was perfectly fine when we left New Mexico on vacation one morning, and by the time we pulled into Colorado Springs, I was really sick with the worst flu-like illness of my life. My husband took me to an Air Force doctor who immediately ran tests because we were traveling. Several hours later, the results were back, suggesting a viral infection. I slept almost constantly for three days. Barely well enough, I flew back to the UK and just didn't get better. More symptoms added themselves over the following few weeks.

 

I experienced sudden onset with infection but it wasn't flu/cold.
It was a stomach flu/infection that I never totally recovered from.
Where do I check off?

 

I don't know, because Dr. Bell seemed to loosely imply that I may have had CFS as a child. However, I was always quite active except for certain periods on and off starting in 1994 there-abouts. In late 90's I had the Hep B series, before the MMR series. That's when things changed. But, I wasn't disabled. You can see my blog "Segment 1 etc."

 

I've selected: '' Acute non-infectious onset (no colds, no flu-like symptoms) following a stressful event (eg accident, death in family, etc) or a period of prolonged stress''

I am not entirely sure which event caused mine but I swear its one or the other:
1) Traumatic delivery of my first child (resulted in PTSD, non-bonding, the works!)
2) Diagnosis of my child having a life-threatening condition and watching her go through major surgery in which they had to stop her heart and watching her literally, fight for her life.

I am pretty sure it's one of these.

 

Hi Cort,

I had a mild version of the symptoms all my life, but after an Epstein-Barr infection (and then two years of working flat-out, so no chance to rest at all, so the infection never stopped), my whole body just stopped working. I checked the second option in the poll, but it doesn't really reflect what happened, which to my mind is an underlying metabolic/systemic failure which turned into metabolic/systemic collapse when sufficient stressors (by which I mean physical stressors: lack of sleep, acute infection etc), were piled on.