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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Does anyone NOT have flu-like malaise?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Hope123, Feb 22, 2010.

  1. Hope123

    Hope123 Senior Member

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    I feel like I have the flu all the time -- i.e. this symptom is like how I felt when I was healthy in the past and caught the flu. Only then, it lasted for a few days and not the years CFS has had.

    I noticed the Fukuda criteria doesn't include this symptom at all although many people I know with CFS have it. Some who have been sick for years have a lessening of it over time or they might not have it anymore but at some point in their illness, they had a long period with this symptom. It's somewhat unusual in that many chronic illnesses, even autoimmune ones, do not have this symptom.

    So, my question is, is there anyone out here who has CFS but doesn't have and has never had flu-like malaise for an extended period of time?
     
  2. Countrygirl

    Countrygirl Senior Member

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    I have a experienced a very profound malaise and have been diagnosed with 'serious' ME. At one point, I was told by a physician that, in his view, I had a 95% chance of becoming paralysed, if I didn't stop pushing my limits.

    However, the nearest I can say I have come to a 'flu-like malaise' is low fever, swollen glands in neck and sore throat with swollen patches at the back of my throat This is not severe enough to be equated with flu. The malaise I experience is far worse than flu and different in charcter. Although I have an immune response in these times - which I put down to my second stage of illness that lasted many years, I would not say they could be called flu-like. I have always been confused by this. When I have an obvious infectious reaction, I am relieved because I feel better at that time. My much more disabling symptoms are lessened when I am having obvious immune reactions. Even when I have flu proper, my fever is rather pathetic and does not reach much above one hundred and one, while it would hover around 104 F in pre-ME days. In short the more flu-like I feel, the better I feel. I often think that if I could only mount a decent flu-like response to an infection, I would feel better.
     
  3. annunziata

    annunziata Senior Member

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    Hudson Valley
    This isn't exactly an answer...but I felt as if I had a terrible flu for about 17 years before it began to let up. It was just about unbearable. There were times (a lot of them) when I lay in bed and wanted to claw my way out of my own flesh, I felt so dreadful and it went on so unremittingly. I suppose the word 'flu' can sound innocuous, although the sensations are anything but. It was always, from the start, somewhat of a weird flu. Specifically, I constantlyfelt as if I were coming down with the flu, and it would never move towards normal resolution.

    I believe part of the reason these symptoms have eased is that I simply stopped fighting the illness so hard. I would force myself to get up off my sick bed and walk -- usually a mile -- and this would greatly exacerbate my symptoms. Well, of course. I have become somewhat more accepting of the fact that if I push myself too much, this will induce those awful flu sensations on top of the crushing exhaustion. I have gained weight, I'm sorry to say, and my legs are not as strong. But I'm not suffering as acutely. At least, that's how it's been for a while.
     
  4. Jenny

    Jenny Senior Member

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    For me severe flu-like malaise is the symptom that never lets up during a relapse. It's the very worst symptom I have - it feels like flu (but never a fever), with very severe aching all over, shivering and sweating, so exhaused that even sitting up in bed is impossible,feeling like I have a severe hangover, and feeling poisoned. Sometimes I feel so ill with this that all I can do is curl up in bed for days and can eat hardly anything. My greatest fear is that I'll get so much worse that this will be permanent - and nothing at all relieves it.

    Even when in a relative remission I suddenly have episodes of chills, sweating and aching that are milder versions of the above. I know it's always there and threatening to return.

    This is why, for me,' chronic fatigue' is such a misnomer. I would never describe any of this as fatigue.

    Hope 123 - sorry you're asking if anyone doesn't experience this!!

    Annunziata - this sounds a bit like your experience - I can't imagine how you coped with this for 17 years.
     
  5. Machair

    Machair

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    A flu like malaise is what I get from pushing too much. It will make me retire to bed and usually follows a period of overdoing it.

    It happens less now because I try to be sensible, but even so I still have episodes which feel like the flu.

    I did read that flu like symptoms can be generated by cytokines produced when there are many abnormal variations in blood pressure during the day. Nancy Klimas actually advises not to take hot showers for this reason.

    I do have orthostatic intolerance and believe that the flu like episodes coincide with the times my POTS is worse. You might want to look into this.
    xx
     
  6. creekfeet

    creekfeet Sockfeet

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    What was eventually diagnosed as ME/CFS and Fibro began for my family with the 3 of us coming down with "flu" and having "relapses." We would feel better, resume activity, and be slammed with sickness again. We were checked and tested for the fairly usual culprits: strep throat, ear infection, pneumonia? Then as we became more exhausted, for thyroid, diabetes, Lymes, celiac? Gradually the periods of illness outlasted those of seeming wellness: it became one long and violent relapse. Finally we were told ME/CFS and Fibromyalgia.

    Flu-like symptoms persist at low levels despite resting, and flare with the slightest activity.

    What I consider symptoms that mock a respiratory flu include:

    body aches
    exhaustion
    headaches
    sore throats
    upset stomach

    with or without swollen lymph nodes and a feeling as if we had (though we rarely actually have) fevers.

    Really, I think that our diagnoses were based on our having what appeared to be flu but wouldn't go away and got worse with activity.
     
  7. Hope123

    Hope123 Senior Member

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    Thanks for answering this thread, everyone. Many of your experiences are like mine.

    I'm exploring this because I wonder if asking a simple question like "Do you feel like you have the flu all the time?" or some variation of it (at the beginning of your illness, during exacerbations, etc.) would go a long ways towards helping health professionals diagnose us. Sometimes, the simplest things get overlook in the process of diagnosis.

    (The analogy to this are the complicated scales used to diagnose depression in the elderly that were developed over the last 20 years or so. Someone came up with a 2-question scale that performed as well as the complicated ones; the first question was: do you feel depressed?)

    It's interesting to hear about what people define as "flu-like" malaise. I was a runner/ swimmer before CFS struck and know the aches/ fatigue that come along with training but it was a "quiet" fatigue in that I never felt like my body had some type of restlessness/ buzzing within it like the fatigue I get with the flu. It's hard to describe this feeling.
    It also includes, as some of you noted, all-over muscle aching (but not severe pain for me), headaches, feelings of hot/cold (but no actual fever except when I've actually caught the regular flu), exhaustion, and sometimes sore throat with swollen neck glands. The other odd thing about CFS is the combo of exhaustion and insomnia - with many illnesses, yes, you are exhausted but you actually sleep better and not worse (unless there is some other symptom like depression, uncontrolled pain, involved).

    Since the CDC definition doesn't include the feeling of "flu," I think this might explain to some extent why they keep missing out on people with actual CFS. I have some experience working with people with a variety of chronic illnesses and very few say they feel like they have the flu long-term. This is most definitely not a symptom of depression.
     
  8. annunziata

    annunziata Senior Member

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    Hudson Valley
    Jenny, I was trying to 'reply with quote' but had trouble with the feature...you said so many things that resonated with me! Yes, I would never -- and never did -- describe these awful sensations of extreme illness as 'fatigue'. I still remember how carefully I tried to describe it to Dr. #1, a lifetime ago. And recently I've seen the issue of low-grade or no fever at all come up -- I believe in connection with some of the new retroviral research. The only times I've had a high fever were when I got opportunistic infections -- which occurred back when I had no NK cell function (not low, none). My doctor (Susan Levine in NYC) says she thinks if there's mcuh of a fever, something other than/in addition to CFS is going on. Mine was 99 for years and years -- that doesn't impress a doctor, generally, it just doesn't gibe with everything else we're describing.

    And thanks, Jenny -- I don't know how I lived through those years, either.
     
  9. creekfeet

    creekfeet Sockfeet

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    Eastern High Sierra
    Yes, I see what you mean, Hope. It does seem like a distinctive element of the disease. And yes, that dratted irony: exhaustion plus insomnia. I had to push myself too hard for a couple of days this past week, and then lay in bed tossing and turning afterward, frustrated that a day when I'd been up and out did not mean a night when I'd sleep. It feels like flu, but if it were the flu, I'd probably oversleep.
     
  10. Scarlett

    Scarlett

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    I do get strange phases, like a few hours at a time, where I feel tingly and hot skin, sweating, feeling hot and cold and exhausted, but that's as close to flu as I could really say I get - the exhaustion is unrelenting, as is the insomnia which is crazy, but the "feverish" feeling and aches come and go, I certainly don't have them constantly.

    If I was seeing a doctor and describing my symptoms I'm not sure I would say "like flu" because in my experience of flu (quite a few years ago) it was much more severe than this kind of feverish aching malaise.
     
  11. SDD1244

    SDD1244 Guest

    I wake up every single morning with flu like symptoms. If I push myself, I pay for it.. usually the following day. And I have an ANA titer that ranges from 1:320 to 1:640 (speckled pattern). I've noticed that since my illness has taken a turn for the worse, that I no longer get fevers. But when my illness wasn't as severe, I would sometimes get low-grade fevers. Also, when my illness took a turn for the worse, I was diagnosed with POTS. I've lately noticed that severe allergy reactions can often set off my BP and tachycardia.

    Best,

    ~SDD1244
     
  12. Jenny

    Jenny Senior Member

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    What's an ANA titre (speckled pattern), SDD? And what is the normal range?

    Jenny
     
  13. George

    George Guest

    I'm one of the flu people too. Soooo, so far only one answer of not flu like. Maybe it should go in the questioner. Hey does anybody know how that questioner for XMRV positives is coming along????
     
  14. Advocate

    Advocate Senior Member

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    Hi George,

    I've incorporated all of the final suggestions--taken from the practice survey--into a final Word document, with the changes and additions marked in red. That will make it easy to transfer that information to the survey, and make the actual changes in the survey. The technical aspect of that scares me. (I'm not a techie like Kim; I'm quite the opposite.) But maybe today? If the electricity doesn't go out from the big snowstorm we are having in the Northeast...
     
  15. HopingSince88

    HopingSince88 Senior Member

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    I meet the Fukuda definition of CFS, have been ill since 1988, and have never had flu-like symptoms.

    My daughter, also meets the Fukuda definition, has been ill since 1989, and has had flu-like symptoms since the beginning.

    It will be interesting once XMRV testing becomes widely available and it can be determined which symptoms belong to XMRV, and which do not.
     
  16. dannybex

    dannybex Senior Member

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    Flu and 'real' fevers?


    You can pretty much put me down in the 'no' category, but with an explanation:

    When I think of the "flu", I think of the typical body-wide aches and pains, and perhaps some sinus or congestion problems, but mainly an eventual HIGH FEVER that shows the body's immune system is functioning 'normally'.

    I've had a high fever maybe three times in the last 12-14 years along with the other fluish symptoms. I have all the other symptoms, especially the malaise, the crashes, etc., almost every single day...but no 'normal' fevers. Before I developed CFS I probably got the actual flu probably once a year.

    Perhaps another question to ask is how often do people with CFS/ME get high fevers? :)

    d.
     
  17. George

    George Guest

    Hey Advocate, rockin'!!! That was one major undertaking. So are you or Kim handling the 'techie' side of things??? Stay warm and I'll send good vibes your way about the electricity!

    Hey HopingSince88 - wow, it seems everytime I turn around there are more people with family members with CFS but for decades they kept saying that just wasn't happening. Course it could be that the numbers are really low????

    Danny I understand what you are saying about fever = flu. I will clarify that like you I've had like 2 fevers since I got sick. But I do often use the description that it's like waking up every morning with the flu. I have the swollen neck lymph nodes and sore throat and muscle aches and feel like I should have a fever but don't. Course I'm a newbie at this illness, only 3 years with the real deal. (grins)
     
  18. Countrygirl

    Countrygirl Senior Member

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    Dan makes a very good point here. I am one of the four of us who would not refer to the continuous malaise as 'flu-like' because that means to me that you are running a very high temperature. Since I have had ME I never experienced a high fever, even with the now rare attack of proper flu. Also with flu I would sleep...something I haven't been able to do since this beastly lurgy began. My symptoms fulfill the Canadian criteria easily, but I don't have the fevers associated with flu.

    Would any of the XMRV+ people be prepared to share whether they would describe the malaise as flu-like? For me, the infection-type symptoms - low fever, swollen glands and swollen, painless, but inflamed throat are too mild to be compared with flu. For me, the other symptoms are far worse and disabling.
     
  19. gracenote

    gracenote All shall be well . . .

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    I don't usually feel as bad as having a full-on flu. I have often run low-grade fevers, usually that come on in the afternoons. With anti-viral treatments, I'm not having them now. A temp of 98.8 feels feverish to me.

    The way I can best describe how I'm feeling, when I'm not in a crash, is like I'm GETTING OVER the flu. That the worst days of flu symptoms are past, and now with a few more days or maybe a week of being very gentle with myself, I'll be back to my healthy self. Only I never get back to normal. I feel caught in the getting-over-the-flu phase. I feel like I'm almost there sometimes, just a couple more days of rest, and . . . I never turn that corner.
     
  20. kerrilyn

    kerrilyn Senior Member

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    I fulfill the Canadian criteria too but I don't think I get fevers, even when I feel really flu-like. I have body aches and feel cold most of the time, but I'm not sure I feel truly flu-like everyday. Maybe more like Gracenote mentioned, like getting over the flu. But in a crash, when I've over done it or not had enough sleep or gotten stressed or whatever under the sun brings on a crash, it is a full blown awful flu-like feeling. It's hard to tell what everyday feels like (if it is flu-like to a lesser extent or not) because it is my 'normal' - what I am used to - but when symptoms flare up everything is so much worse than it's easier to distinguish the two.
     

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