The Onset Poll

[Mij]

Well I checked off the first choice but I did not have "flu-like" symptoms at the intial onset. I had intense vertigo- I thought I was having a stroke. The sore throat, ear ache and gut issues started around 6 months later and the intense vertigo came back once again.

 

[u&iraok]

Mon ame, my husband has a co-worker that has been off work for months with intense vertigo. The doctors keep telling him it's just vertigo but he went for a cat scan yesterday, we'll see if they find anything. I asked if he had any MS symptoms, never thought of ME/CFS.

My ME/CFS started with a regular case of the flu--the headaches, sore throat, sore lymph nodes, achy muscles, but when I look back, I really had some symptoms or maybe you could say pre-symptoms before then.

 

[Mij]

Mon ame, my husband has a co-worker that has been off work for months with intense vertigo. The doctors keep telling him it's just vertigo but he went for a cat scan yesterday, we'll see if they find anything. I asked if he had any MS symptoms, never thought of ME/CFS.

My ME/CFS started with a regular case of the flu--the headaches, sore throat, sore lymph nodes, achy muscles, but when I look back, I really had some symptoms or maybe you could say pre-symptoms before then.

It's not uncommon for people to experience vertigo for months due to a viral infection so the co-worker doesn't need to be too worried at the present because it can take months to go away. Hopefully it's not the onset of ME. I also had highly elevated anti-thyroid antibodies at the time of the vertigo, I went for a thyroid scan and my thyroid function was normal, I was told it was viral and eventually I would feel better again. That was 20 yrs ago . . .
I saw something on t.v the other day about a physio therapist who specializes in vestibular vertigo, she was treating a women who had a terrible inner ear infection that affected her gait, she literally had to learn to walk again. There was permanent damage from the infection and she is on permanent disability, she walked as though she had brain damage. Very sad.

 

[jonnyboy]

I has acute onset, combined with flu like symptoms. But I'm convinced it wasnt viral in my case. In my case I think it was a perfect storm type scenario all occurring with the months of getting CFS:- too many hours working (80+ per week), some relationship problems, some finance problems, some domestic problems with flat mates, some work problems, another unrelated health scare, lots of antibiotics, a poor diet, and big shift in training to long runs which i wasnt used to. At the time i thought I had flu, but I had no fever or raised temperature. In hindsight my gut feeling is my body had simply had enough and caved in. I think in isolation I would have coped with most of these fine, the emotional problems didnt even make me unhappy, just very angry, and for perhaps a 2-3 month period everything was just ramped up in my life, and couldnt escape it. Funny thing is I didnt even think I was stressed at the time. My response to any problem has just been to bull through it. With CFS that hasnt worked.

 

[Tristen]

I has acute onset, combined with flu like symptoms. But I'm convinced it wasnt viral in my case. In my case I think it was a perfect storm type scenario all occurring with the months of getting CFS:- too many hours working (80+ per week), some relationship problems, some finance problems, some domestic problems with flat mates, some work problems, another unrelated health scare, lots of antibiotics, a poor diet, and big shift in training to long runs which i wasnt used to. At the time i thought I had flu, but I had no fever or raised temperature. In hindsight my gut feeling is my body had simply had enough and caved in. I think in isolation I would have coped with most of these fine, the emotional problems didnt even make me unhappy, just very angry, and for perhaps a 2-3 month period everything was just ramped up in my life, and couldnt escape it. Funny thing is I didnt even think I was stressed at the time. My response to any problem has just been to bull through it. With CFS that hasnt worked.

Absolutely agree with the "perfect storm of circumstances" idea. That's how it happened for me too. But I still believe there has to be a common core etiology, otherwise, everyone ever in combat would have me/cfs.

 

[Calathea]

I had a combination of gradual and acute, though the acute was more noticeable so I've ticked that. I had a "glandular fever type virus" when I was fifteen. Not that big a deal by my current standards, but I missed more school than most people did from then onwards. Then I developed ME with a bang at the age of 19 following the classic trigger of burn-out combined with flu.

 

[Fredricktoo]

I had dizziness and began falling frequently, immediately following general anesthesia, after a knee operation. This was the late 80's.10 years later I had all the symptoms of Multiple Sclerosis and I visited a neurologist. Extensive tests ruled out MS but I was told that I had suffered several TIA's (mini strokes) probably following the general anesthesia. I had unexplained pain and fatigue and was diagnosed with fibromyalgia. I'm not too sure where the line between fibro and CFS is. I might have both. At least since my diagnoses I have been helped by rheumatologists.

 

[MeSci]

I ticked the last option although it doesn't reflect the whole story which is more like:

• Chronic stress in childhood
• Further chronic stress in 40s due to hated job, overwork and inability to find better job
• Acute grief-related stress
• Over-exertion, malnutrition and depression arising from loss of job, continuing trauma over life event and loss of car and house due to poverty
• (possibly related) Heavy use of, and exposure to, an organophosphorus-containing flea treatment plus others containing synthetic pyrethroids plus severe infestation of house with fleas
• Attack by farm dog, followed by tetanus booster (not sure if before or after symptoms began)

There may well have been other earlier events that created predisposition, e.g. bad attack of chickenpox followed by facial paralysis, possible tick bite.

Initial symptoms included

• Vertigo
• Miosis (contracted pupils so that I could see nothing for a few minutes after coming indoors from bright sunshine)
• worsening of IBS including diarrhoea
• Nausea, retching and vomiting
• Weakness in legs (which of course I ignored and pushed through)
• Weight loss

 

[Tristen]

I had sudden onset. It was mild-moderate, but sudden. I became severe over the next decade as a result of my persistence to "push through it", and knocked down hundreds of times until I finally got the message that I was waking a monster.

 

[peggy-sue]

I had a fairly rubbishy and stressful life altogether, I had been under an (extra) ongoing stressful situation, I got exposed to a 'flu virus, but only had a sniffle, then wallop.

I was crossing a road. I was well on one side, completely sick on the other. It happened within seconds.

As other folk also developed illnesses after exposure to that virus (another got ME, one got PVFA, one got IBS), I am assuming that was the trigger.

But I didn't have 'flu, or 'flu-like symptoms. I was just plunged into a world where gravity had been turned up and I was in a lot of pain. I marked the second option, despite not really having the infection.

 

[Mij]

My onset was sudden vertigo. I was vaccinated with a series of Hep B, rubella, tetanus vaccines and TB tests one month after the initial onset. I'm thinking this was not good because my immune system was already in a vulnerable state.

 

[Tristen]

I was in a state of x-tra stress during that time too, but had no pre-onset infection.......Hep B vaccine was the only other possible precipitating factor. Right after innoc #2 (out of 3), I was down.

 

[rosie26]

I had a gradual onset of 7 years, looking back I can remember all the mild symptoms that used to quietly bother me. I just didn't know then that I was on my way down with ME.

I was getting mild off/on symptoms of ME. I was able to work full time.
But during those 7 years life sped up for me and I think because of that, it set me on track for a high speed crash into Severe ME.

6 months before my collapse my sleep packed up, I was waking at 3am high wired with an awful agitated poisoned feeling in my body, vertigo and nausea started to increase, feverishness, headaches, sinusitis and unusual exhaustion.
I deteriorated rapidly from this 6 month point when my sleep became affected. I caught a nasty flu at this point which I think finally took me down completely and was thrown into the nightmare of bedridden unbearable ME

 

[Tristen]

I had a gradual onset of 7 years, looking back I can remember all the mild symptoms that used to quietly bother me. I just didn't know then that I was on my way down with ME.

I was getting mild off/on symptoms of ME. I was able to work full time.
But during those 7 years life sped up for me and I think because of that, it set me on track for a high speed crash into Severe ME.

6 months before my collapse my sleep packed up, I was waking at 3am high wired with an awful agitated poisoned feeling in my body, vertigo and nausea started to increase, feverishness, headaches and unusual exhaustion.
I deteriorated rapidly from this 6 month point when my sleep became affected. I caught a nasty flu at this point which I think finally took me down completely and was thrown into the nightmare of bedridden unbearable ME

"Poisoned" is the word that I find best describes what this disease feels like. PEM?.......Just more poison.

 

[Xandoff]

On reflection your onset sounds just like mine. Oddly enough it was "metabolic pain" and inflammation that finally brought me down. In 2005 I had a spinal fusion/ cervical discectomy that replaced to discs in my next with a titanium cage and screws. This is what launched my severe and undiagnosed M.E. CFS into orbit. It was a point in my life where I had put everything into my career (major stress & bad diet) and crashed and burned.

 

[heapsreal]

31y/o cmv mono followed by my second bout of chickenpox a few months later while probably in a post viral state from cmv. WHile still feeling very fatigue by chicken pox a few months later i got ebv mono. 2002 was a crap year for me.

 

[Xandoff]

I did have a tetanus booster before I really got ill....... but who knows if it had anything to do with anything!

 

[rosie26]

Would like to know what chemical or whatever was causing that "toxic poisonous" feeling in throughout the body. It was wicked, I had it full intensity for two years, ill at ease every moment. Then it slowly eased over the next 4 years.

Interestingly though, when my sinuses started to improve, so did that "hypertoxic feeling" start to slowly dissipate. My sinuses were pretty much non- functioning in the first years of my ME. I had to lean over a bowl of hot water twice a day to try and open my blocked sinuses, and the foul stuff that came out of them, when they did open it was like diarrheora (can't spell) of the sinuses.

It was a terrible time, I could hardly sit in a chair to do this, so weak, and swallowing all the stuff, the exhaustion. I am sure there will be others who have gone through this extreme as well with this illness. I still get the poisoned feeling but not as unbearably now. Don't think I could go through that again, it was so hard to get through the severe years. You have to be so brave with this illness, it likes to frighten and scare with it's nasty symptoms. You never know what's coming next. What it is going to throw at you next.

 

[manna]

Often when I hear of the sudden viral/flu onset I wonder if they took anti-biotics to combat this flu? Anti-biotics being high point scorers on candida questionairres are definitely triggers to full blown M.E. Was it the flu or the treatment taken to combat it that triggered illness? I'd bet that if you asked many who think they had viral onset, whether they took anti-biotics for the intial problem, they'd say yes.

I got ill following a visit to the dentist and having a mercury filling. That said I hadn't felt right for a few years.

 

[MeSci]

Often when I hear of the sudden viral/flu onset I wonder if they took anti-biotics to combat this flu? Anti-biotics being high point scorers on candida questionairres are definitely triggers to full blown M.E. Was it the flu or the treatment taken to combat it that triggered illness? I'd bet that if you asked many who think they had viral onset, whether they took anti-biotics for the intial problem, they'd say yes.

I got ill following a visit to the dentist and having a mercury filling. That said I hadn't felt right for a few years.

I would hope that doctors wouldn't prescribe antibiotics for a viral infection, as antibiotics do not work against viruses. They are sometimes prescribed for bacterial complications - in fact they are over-prescribed for a range of things.

It's worth thinking about anyway. Antibiotics have adverse effects on the gut flora, which many of us consider to be an underlying cause of our illness.