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QUESTION... how does it start?

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Old 12-12-2012, 08:23 AM   #1
Join Date: Dec 2012
Posts: 2
tintasjunkmail HB User
QUESTION... how does it start?

I'm definitely new here. I'm 25 and currently going through a bunch of testing and waiting for results and to follow up with Dr. I've looked at the symptoms and they look like everything I've been experiencing. I've drawn the conclusiion that it's either CFS or Mono. But again, waiting for test results. (drumming fingers impatiently - just want to get diaged and treated so I can get feeling better).

So my question is, does CFS just hit you like a truck? Or does it develop over time, grow on you? What was your experience?

I ask because my symptoms just seemed to have come out of nowhere, just WHAM, and I'm sick sick sick SICK! I suppose it is also possible that it developed over time but didn't notice. Married, mom, student, church responsibilities. Pretty busy, but have been generally healthy with a fairly healthy lifestyle and an overall happy kind of person. No smoking, drinking, some junk food maybe once or twice a week - not really in the mood for that kind of stuff.

My symproms seem to be evolving and it's kind of weirding me out a lot. It started just a couple days after Thanksgiving. The feeling of uncomfortably warm marbles slowly moving through my circulatory system starting in my lower thigh. Two days later started having bad chest pain radiating into my arm, could breath but felt like my 20lb baby was sitting on my chest - laborious to breath. Dizzy and fainting. Super fatigue and weakness, headache too. This lasted a couple days. Went to the Doc and she sent me home saying, "Come back in a week for a pregnancy test if you're not feeling better." Yah, sure. That's impossible in my circumstances. :-) The Doc refused to run even a simple blood test. Anyway, the chest pain mellowed, still get a little jab here and there. Started coughing the last couple days. Body aches SOOOO bad like someone just beat me half to death - from neck to mid thighs. Not interested in eating or drinking much unless I'm super thirsty. Force myself to eat anyway because I have hypoglycemia - however it's spelled. :-) Still exhausted, weak, headache like someone is blowing a balloon up in my head - a kind of headache I have never had before. Been pretty irritable the entire time. Occasional and very random chills especially when I'm actually comfortabley warm. Achey lymphnodes but not swollen, super difficult to wake up. Went to a different Doc yesterday and he ran an EKG - totally normal. Oxygen levels fine. Blood pressure fine. No fever. Heart rate fine. Running blood tests and waiting for results. Woke up this morning and all of a sudden the sore muscles were gone even though they were screaming last night. Normally, if I pull a muscle or overwork it, it takes a few days of gently stretching before the pain GRADUALLY fades. But these muscle pains just disappeared this morning like nothing ever happened! Super weird. Struggling to get through finals week - and only taking one class!!! Getting a bit nervous about being able to recover before next semester. :-\

Last edited by tintasjunkmail; 12-12-2012 at 08:59 AM. Reason: Adding symptoms and timeline

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Old 12-15-2012, 08:45 AM   #2
Join Date: Dec 2012
Location: USA
Posts: 6
JJ32 HB User
Re: does it start?

I'm probably a poor choice to answer this question...from the years of research on my own issues the most common answer is it hits you like a truck...generally concommitent with being a super-Type A personality which your body is trying to give you a warning sign about.

But, not always. For me it is slow, but I don't have true CFS just....fatigue, chronically.

I do hope it turns out for the best with whatever the results are. Good luck and don't let the doctors get you down

Old 01-13-2013, 03:57 PM   #3
Join Date: Jun 2006
Location: Rocky River, Ohio
Posts: 57
Michelle4 HB User
Re: QUESTION... how does it start?

I have had it since 2006 and when it came on it was like a truck, like flipping a light switch. I didnt know what hit me. I also have FM. sometimes the pain and fatigue would be less on some days. Then about a 2 years in it just went away, just like flipping a light switch again, dont really know why or how. Lasted about a year and then the fatigue gradually came back but not the pain. I havent had the pain since. I'm sure it will come back at some point.

-my CFS started after surgery. I went back to the gym about 3 weeks after the surgery and about an hour after getting home, I had extreme fatigue, like nothing I had ever felt in my life..I never was able to recover.

I do hope you fnd some relief soon.


Old 01-25-2013, 12:36 AM   #4
Junior Member
Join Date: Dec 2012
Location: New Zealand
Posts: 14
d3b5b9b12 HB User
Re: QUESTION... how does it start?

A good but difficult question.
I have had ME/CFS with FM for over 16 years and it started very gradually but after about a year I had a massive bout of diarrhea which lasted for about 6 weeks with many flu like symptoms.
My wife has had ME/CFS for 6 years and hers started in a similar way, she was stumbling a lot had difficulty eating then she has a severe attack of aphasia and ataxia. Following that she had MCS with fatigue. She was diagnosed ME/CFS.
Our daughter's MCS/CFS apparently started suddenly and she became hypersensitive to turpentine (she is an artist) but she now realizes the fatigue was creeping up on her.

The point is that on close analysis none of us had a clear beginning.

I think ME/CFS begins with a set of assaults on the immune system which includes viral infection, genetics and chronic neurological stress which has been shown to affect immune function. This immune dysfunction triggers/allows re-activation of "latent" viruses which chronically upregulate IFN-alpha and IFN-gamma. These then affect many different functions two of which are:

1. Depolarization of the mitochondrial membrane. This causes problems with ATP synthesis and energetics and glutathione depletion which causes toxin metabolism problems.
2. Vitamin D depletion due to the effect of IFN on liver function.

Both of these dysfunctions are common to many neuro-immune diseases but when you add the genetic factors you get particular diseases like ME/CFS.

How many people do you know have both MS and ME. Doesn't seem to happen.

MS is associated with latent Epstein Barr herpes virus but ME/CFS has been shown to be associated with mononucleosis ie the initial infection of Epstein Barr with later vitamin D dysfunction, ME/CFS is also more associated with HHV6b and HHV5 as well some parvovirus. although this is debatable

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