Everyone: Do you have flulike fatigue?

Discussion in 'Fibromyalgia Main Forum' started by Lichu3, Mar 12, 2007.

  1. Lichu3

    Lichu3 New Member

    Phoenix-Rising's reports from recent IACFS conference featured a study delineating the different types of fatigue that people have since fatigue is such a vague term.

    What I'm wondering is: is the flu-like fatigue present mostly for the folks with post-infectious onset or present in folks with other types of onset as well (e.g. developed after FM, surgery, trauma, emotional stress, etc.)? I'm not talking about severity of fatigue.

    I had onset after two back-to-back flu-like episodes and feel like I am not at the worst part of the flu but rather the middle-tail end where you're recovering but not ready to go back to usual activities. Joints/ upper back ache (but not outright pain), able to think but requires more effort (like thinking with a head cold present).

    Just curious!
  2. sophiekk

    sophiekk New Member

    I definitely have it - in fact it's the way I describe my fatigue to others, because fluey fatigue is quite different to sleepiness. But then I had a viral onset with an EBV infection, and continue to have elevated antibody titres for HHV6 and EBV...
  3. cherylsue

    cherylsue Member

    It's like having a perpetual case of the flu. That's how I describe my CFS.

  4. terrilynnb

    terrilynnb New Member

    I feel the kind of fatigue, particularly post exercise, where I can not even return a phone call. Not at all a sleepiness, just a total exhaustion and I can not even think at times like that.
  5. mezombie

    mezombie Member

    I woke up with what I thought was the flu one day in August of 1990. My "fatigue" has been flu-like ever since.

    LISALOO New Member

    I say, "Imagine the worst flu you've every had, that's me everyday!"

    My CFS started with a cold/flu like illness
    [This Message was Edited on 03/12/2007]
  7. TerryS

    TerryS Member

    Yes, yes, yes!!! That's exactly what I have...not like the ACUTE stage of the flu, but maybe what you'd feel like the third day; however, I usually don't feel that way first thing in the morning (or at least it is extremely mild), but after being up 3 to 4 hours, it hits BIG TIME!!!

    I can't say how my CFS began; although, I had cytomegalovirus back in 2002 which caused a prolonged case of mononucleosis, and I never quite recovered. Had a HUGE CRASH of energy and then onset of pain this past summer from which I have not recovered.

  8. ravenpaige

    ravenpaige New Member

    I also have flu-like fatigue. Find it difficult to describe to people sometimes. I do think the word "fatigue" tends to give people the wrong impression. Since I seem to have a rather mild case (I've been able to continue to work full-time, although sometimes that's really difficult), I've had the chance to try to observe in myself the difference. When I'm not in a flare, and I have had a long day of working, maybe physically (I like to work in my garden when I can), then I may be tired at the end of the day with what I would call normal fatigue. It has an interesting mixture of tiredness and exhiliartion in it. When you're fatigued from a long day of work, your muscles might ache a bit. You definitely want to get some sleep. But it feels good too. Your body says "I got a lot done, and now it's time to sit back and contemplate on what I've accomplished." To me, that's normal fatigue.

    However, the fatigue I get when I'm flaring is really nothing like that. It feels more like a flu. Your brain suddenly shuts down. You MUST sleep, now. I've had times when I almost fell asleep in the middle of a sentence. For me, my throat is sore, I feel like I'm getting a fever, and there is no way I feel "good" about anything. It's just a feeling of "I'm done."

    So in some ways, I think the flu is a good analogy. The problem is, with something like the flu, you're also typically getting the sneezing, coughing, laryngitis, whatever, type of symptoms so that others around don't question if you say you're getting sick. But with CFS, we all seem to be kindof stuck in the "I know I'm getting something even if I look fine to you" stage. I think most people, if they really observed themselves, would understand that, since most people will spend a day "feeling" sick before they start to show most symptoms. But unless they observe that, and know how bad they feel before they start to show symptoms, I don't think they can understand CFS.
  9. ptgibbs

    ptgibbs New Member

    i too feel this way, just blah and then pain. Sometimes I even feel sick at my stomach, not enough to throw up, but just yucky. do some of you go for quite awhile in between flare ups? I went to ER about 3 weeks ago, and haven't felt real well since. The weather in Texas has been up and down. Cold, then hot, and wind bothers me too.
  10. tandy

    tandy New Member

    mine started with strep throat 13 yrs ago.
    I never got better.
  11. Lichu3

    Lichu3 New Member

    Ravenpaige: Yes, the part about the day or two before you develop the full-blown flu is very accurate for my circumstance. I don't have it so bad where I'm bedridden but it feels like the either the day or two before or after a severe flu episode.

    Ptgibbs: I'm pretty careful about my activity restrictions so I don't get many crash/burn cycles but the flu-like feeling is there by itself 70-80% of the time regardless of what I do.

    This is fascinating to me because of Dr. Jason's ideas about CFS subsets and how some subsets have immune activation (hence flu-like feelings) and others do not. The CDC definition doesn't include type of onset and fatigue is so vaguely defined.
  12. terrilynnb

    terrilynnb New Member

    Boy, did you hit it onthe nose with : stuck in the "I know I'm getting something even if I look fine to you" stage. I never feel sleepy but exhausted and sick.
    Lichu3, I wish more physicians would separate out the subsets because I don't believe they are going to get any accurate findings until they do. If they are including Pain, sleepyness patients in the same study as those with flu-like symtoms, obviously lthe results are going to be confusing. I think that is why the whole "virus" thing was put on hold for so many years because there is a subset of us with strong EBV-mono type issues and if the studies include those with other types of "fatigue" they are going to discount any viral or herpes related connection. I know I am not being very clear, I have major brain fog right now.
  13. dahopper

    dahopper New Member

    I am in a terrible flare right now that is the worst I've had in sometime now. Not sure what brought it on but wish it would go away. I wake up aching all over and it takes me all morning to get going... I can not get anything done just walk in circles. I hurt all over and the fatigue is horrible and my legs feel like they have cement in them. I know most of my friends and family just don't get it, they say they do but until you feel the pain and fatigue we are talking about they will never understand and I hope they never do. But most of the time I feel guilty for feeling this way and feel like I have to explain but I think I am learning little by little to let that go. The stress of worring what others think just makes us worse. Take care.
  14. bigmama2

    bigmama2 New Member

    No, i don't get the flu like fatigue. just deep fatigue and tiredness/sleepiness. sometimes the fatigue is so bad it is painful in a way that i cannot describe. i am so tired i want to sleep all the time..sometimes i sleep for 2 or 3 days straight (getting up to eat drink and use bathroom). i feel like sleeping beauty minus the beauty. i have been sleeping my life away. and i am NOT depressed!!!!

    i have been doing substantially better lately thank god.

  15. nev

    nev New Member

    I also have flu-like fatigue. When I did get the flu this winter, I was surprised because you just add fever and stuffy cough mucous overload. It was just how I normally feel w/o the Soma to help relax the muscles.

    Not sure but I believe that my fibro was caused by a car accident. It was minor, broke the collar bone from the seatbelt. That's all I can trace it back to, except other truamatic events since then(3 child births etc). But that's what I'm thinking. I remember telling the docs at check ups or sick visits that yes I'm VERY fatigued. And they each have down played it cause I was caring for small children. Each dr visit I would tell what was bothering me at the time, but never put it all together, with no answers of course. I do remember being so exhausted, breathing was a chore, all from about the car accident on. I didn't figure it out until I read some fibro books that speak of a traumatic event.

    It was a major blessing from the Lord to find out what I have and that I'm not just lazy like my husband says. He still thinks so and told me tonight that he refuses to read about a bunch of symptoms ( I asked him to). Maybe some day he will see that I need his full support.

    I have added a b-12 supplement recently, and i think it is helping me with energy. My father actually has a monthly injection of pure b-12 for pernicious anemia. We'll see down the road after it's in my system for a while if it is working.

    No one understands the fatigue, my mother sort of does. She knows that pacing is what keeps me rolling.

    So yes to your answer, I have had fatigue at onset from a trauma and have had extreme stress on and off dealing with 'stuff'.

  16. Katchina

    Katchina New Member


    I have ME or CFIDS but I have come to this site from a recommendation and I joined in spite of the 'chronic fatigue' name here rather than because of it.

    I personally wouldnt ever describe unusual levels of 'fatigue' as a symptom for me at all, I dont think I feel much more 'tired' than anyone else does- although of course I have been pacing myself for years now and I really dont ever overdo things if I can help it.

    I dont identify at all with 'feeling tired all the time', I dont suffer from excessive sleepiness, drowsiness, lethargy, apathy or negative thinking; although I do get very fed up with the constant pain and being ill all the time and sometimes I cry about my lost life which used to be good.

    I do have severe exercise intolerance and this means if I dont manage my activities carefully and if I try to do too much (ie 'activity' means anything from toothbrushing on bad days to cooking an easy meal on better days)
    I will inevitably get 'payback' as my reward, usually starting around a day afterwards, in other words I dont feel too much different at the time I am overdoing it, sometimes dizzy and weak but the next day I get 'the flu' and can become bedridden for days at a time. sometimes after some prolonged activity I cant avoid (such as a hospital visit) I get a setback and feel much worse, this setback can last for weeks before I get back to my usual levels of activity.

    what do I mean by 'the flu'?
    feeling like hell with a high temperature, chills and sweating, nausea, dizziness, extreme muscle weakness (not hardly being able to sit up and unable to get out of bed to get to the loo without hanging on to something all the way), and increased muscle pain, increase in joint pain, numbness of hands and feet, headache, blurry eyes, tinnitus, light and sound hypersensitivity.
    I do get hypersomnia sometimes when I am in payback, when I cant stop myself from sleeping for hours on end and cant wake myself up to answer the telephone etc., but normally I have chronic insomnia.

    I think that activity management is the only way to keep things on a more even keel for me, although pacing so carefully makes for a very boring life, then I hate being bedridden with a vengeance -after the first two years of this illness that I spent being unable to get out of bed most days, so I feel I have no choice.

    I get very fed up with doctors always assuming I have 'chronic fatigue' and peoples general perception that having ME means you are 'tired'.

    That is not my experience at all although I have seen a specialist who confirmed I definitely do have 'classic' ME/CFS with eight out of ten CDC diagnostic symptoms (excluding both depression and 'fatigue') .
  17. sixtyslady

    sixtyslady Member

    I don"t have it all the time,but when I get it ,it even wakes me up at night,just feel like I"m to weak to get up out of bed and have muscle spams.
    woke up like that this morning,took the heating pad and put it on my neck,and I have a heated mattress pad my hubby got me for my birthday ,I turned it on high and let it get real warm then turned it down to low .went back to sleep and when I woke up I was able to get up and go get my Grandson from work.sometimes I feel so weak and achey I can"t do anything but just sit and cry.
    I"ve worked so hard this past year trying to eat right and take care of myself.its just kind of getting me down now that I don't feel good again. blessing sixtyslady
  18. Aelf

    Aelf New Member

    A very wierd flu like fatigue, yes. I feel very 'out of it' all the time.

    Then again, I came down with CFS from mono, so I just feel like I have mono everyday..
  19. YES! But please have your b 12 checked, I just found out I am VERY low in it and starting injections. Usually drs. don't ck b12 routinely. But Yes plus I have the horrid pain of this dd.
  20. cczub

    cczub New Member

    I explain to people that I feel like I have the flu EVERY day, some days being not so bad and others being terrible. I actually had the flu last week and it made me want to die. Yesterday was my first good day in close to 2 weeks and today is not so good.

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