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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. lululowry

    lululowry Senior Member

    Athens, Georgia
    I am feeling this frequently and it is hard to describe. I feel like I am poisoned - like I have a migraine throughout my entire body, "internal flu". The aches from the flu felt like I had been hit with a board. This is a totally different feeling - not what I would call flu-like at all. However, I feel terrible throughout my entire system, face to feet. Stuff is tingling, going numb, headaches with nausea. No fever, plenty of chills and temperature disregulation - I am always so, so, so cold! Then sweating. My husband asks me what feels bad and it's everything - just everything.
  2. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA

    So sorry. Our symptoms are hard to describe, but there are plenty of us here who understand what you're saying. Temperature dysregulation is really tough to deal with chills, being cold, and sweating, too. "Flu-like" fails to capture it all.

    And welcome.
  3. jewel

    jewel Senior Member

    When I was younger, prior to actually coming down with a flu, I would usually get about a day of overwhelming fatigue (including sleepiness) and aches and pains. If I managed to sleep at that point, sometimes I would wake up with a fever, but the illness itself would be short-lived. Or, I sometimes would just sleep for hours, and wake up well. Now, I feel as if I am in that pre-flu phase (swollen glands, sore throat, everything achey--- but not the high fever, severe pain of the flu). There's no sleeping it off, and sometimes no (real) sleeping. Or, I'll feel like an earlier poster stated a few pages back, a sensation of getting over the flu, weak, trying to regain my stamina... and there I stay. Even though these two sound alike (prior to fully getting sick and after being sick), to me they feel different. Ok, I just reread this, and I don't think I am making any sense here. Yes, something akin to the flu, just not as acutely bad, but in some ways worse in that it never ends.
  4. lululowry

    lululowry Senior Member

    Athens, Georgia
    Thank you!
  5. Adam


    Sheffield UK
    I have a very similar experience to Strawberry. My PEM/flu like symptoms often kick off up to 48 hours after 'exercise'. No Knackered I don't mean weights - I mean a walk in excess of fifty yards.
  6. floydguy

    floydguy Senior Member

    Interesting Thread

    First of all, a disclosure: I have not been diagnosed with CFIDS. I think mostly because I don't have a clear PEM problem. I sometimes joke that I have CIDS (chronic immune dysfunction). I am fatigued but I can walk, hike, even play tennis and golf when I am up for it.

    I love to see people putting it this way of the flu without fever because this is usually how I start off trying to explain my symptoms. This is my biggest complaint and one that never goes away. For me the muscles along my lower spine are extremely tight and hard - to the point that it has affected my posture. Other muscles in my arms and legs are also very tight and "knotted". My eyelids have been constantly twitching for 5 years now. I also get other parts of my body twitching and throbbing. My throat/neck is sore and tender. I get inflammation in my head and the related brain fog. My body temperature is about 96.5 and I am always cold.

    I've been a patient of Dr. Shoemaker and he believes it is part of the chronic inflammatory response that occurs in biotoxin illness. This idea of a chronic inflammatory response seems right to me. I've read on this site about studies suggesting that c4a spikes after exercise. In my case, it's permanently high ranging between 10,000 and 32,000+ (despite mold avoidance and folllowing Shoemaker's protocols). I also have a permanently high TGF Beta, another marker I've read is high in many who have CFIDS. In fact, Shoemaker has suggested that I consider getting tested for XMRV.
  7. Andrew

    Andrew Senior Member

    Los Angeles, USA
    This is an interesting thread, in part, because people have different ideas of what "flu-like" means. To me it means it's similar to the flu. It doesn't mean identical to the flu. And in my case, the first doctor I saw after getting sick I described it as "feeling like a horrible case of the flu, except I'm not coughing or sneezing. Plus, I fell like someone drugged me and my body feels partially dissociated and I feel like I might pass out at any moment, except I don't pass out."
  8. bee33


    I'm often slightly confused by the symptoms that others describe. I just feel utterly exhausted all the time (sometimes a little better, sometimes a little worse, but it never goes away.) It's so bad I have given up almost any normal activities. I also have constant aches and pains, but compared to the fatigue they are not bad at all. I have a lot of trouble sleeping, and after sleeping poorly I feel much worse, usually for a week or more. I do get dizzy after standing up, but it's pretty mild.

    But other than that, I don't really have any other symptoms. Sometimes I wonder if I have CFS or something else, since I don't have many of the symptoms that people describe.

    So I'm not sure if I would call it flu-like. It's like the flu in that when one has the flu, one is too exhausted to move.
  9. Clairesmith

    Clairesmith Guest

    I don't have flu-like symptoms. Occasionally used to feel as if I were about to come down with something, but rarely developed full-blown symptoms (fever, runny nose, etc.) Have lots of body aches though, mainly shoulders, neck and back.
  10. maryb

    maryb iherb code TAK122

    I don't have flu like symptoms either, have a lot of pain in my spine, neck and other joints, feeling of heaviness in my legs and terrible brain fog, dizziness and MCS plus food, light and sound sensitivities. We are very different in some ways I think with this illness, is it going to turn out to be all the same thing?
  11. Esther12

    Esther12 Senior Member

    I got a bonus virus for a bit in December, and found that it brought about a contented fatigue: a fatigue that really strips me of my desire to do stuff, as well as leaves me unable to actually do it. It can almost be nice. With CFS fatigue I still get a real burning hunger to do stuff, it's just that I'm too tired to do so.

    I'm not sure if that's a real difference in types of fatigue, or just a psychological difference brought about by the long-term nature of CFS. Maybe if I had the 'contented fatigue' for a long time, I'd move towrds a hunger to do more again as my frustration grew.
  12. dean


    I seem to have an on off switch. In between attacks I am ok.....then the switch and it is exactly like the flu except perhaps the pain is a bit worse and I have something like shortness of breath on slight or even no exertion. I have been worked up for everything.....and nothing found...except for some non specific killer cell abnormaties. This has been going on for 20 years althought the switch was sometime off for years at a time.
  13. sela

    sela Senior Member

    marin co, ca
    no flu symptoms really. exhausted, wiped out, enervated, difficulty standing, poor sleep, brain fog, short term memory problems, irritability, sensitivity to noise, stimulation, cold.
  14. Dufresne

    Dufresne almost there...

    My first post

    I suffered recurrent strep throats through my teens before this disease really got a hold of me, but I seem to be quite impervious to the flu. I think I had a flu or two in childhood, which may have been my onset, who knows, way too long ago. Also, I've never suffered pain or orthostatic intolerance. It'll be very interesting to see that subtype project (or whatever it'll be called) going, Cort's idea, the one where you'll be able to find a symptomatic twin.
  15. jeffrez

    jeffrez Senior Member


    The short answer is that I had a definite flu-like immune activation syndrome to start the CFS, but the fever only occurred on days 1 and 2, with the other major flu-like symptoms gradually tapering off to lower levels over a couple of months, except for the fatigue, which is always there. And aside from the Lyme, I was only sick one other time in the entire 12 years, with some stomach thing also with a fever. But that didn't produce immune CFS, go figure.
  16. free at last

    free at last Senior Member

    Flu like attacks are certainly what precipitated this illness for me. at first just like catching a normal flu, body achs, headache, burning hot one min, shivering cold the next and a burning irratation in my chest that was awful. then full recovery, then bang got it again, then full recovery, then got it again.

    The time between attacks at first, were about 8 to 12 weeks, so the first 4 or five times i actually thought it was the flu, must have been a lot of strains that year lol. Whats interesting in understanding a potential CFS ME onset was, that when the fevers stopped after quite a few full blown deeply ill attacks. many of the symptoms i had when this chronic onset seemed to develop, also seemed to drift into the feverless episodes suggesting a connection ?

    the burning irratation ( more irratation than burning, hard to describe ) the poisened feeling, sweating, nausea aching. visual and sound disturbance ( even smell ) vision very bright glowing colours, noise would upset me like it was making it harder to fight the symptoms or something. pulling me down mentally, and producing panic ( my kids shouting for example ) feeling faint ect ect, i suscept this is ringing a bell with a lot here.

    Im convinced after many years of confusion about this, that a virus started my ME ( the symptoms overlapping when fevers stopped for example ) i have no idea what virus this was ( or if it was 1 virus or many ? ) but it certainly felt the same each and everytime.

    One has to be careful though, because different viruses can produce the same or similar symptoms, So im still uncertain about that, But infection of some sort is a fact, if it was the same virus each time the early onset attacks started, then one wonders why i didnt build immunity to it, and how it could re develop, seems unlikely i kept catching different viruses when i had so many attacks, each feeling almost identical.

    I think i still have this virus and that it is lifelong, even after lengthy periods of better health i still get ill, ( started up a bit more recently again CHEERS ) but almost always with no fever now, and symptoms much much less sever than those early attacks that felt like i was going to die.

    The words of Dr peterson will not stop ringing in my brain about the bodys abillity to stop reacting to a virus, producing less sever symptoms even though a virus could still be present. I had a mild tempature recently with a crash, 99 f 100 f, with headach body achs light headed poisened feeling. but no cough or sore throat, i havent had a ME tempature for years ? so not sure what that was, but didnt seem like a cold or food poisoning.

    Then recently a couple of milder crashes no fever, just a little trembily weak, and the poisened ill feeling. What ever it is, its still there. though my body seems stronger at either fighting it now. Or isnt reacting as much or as violently as the earlier days, all of 15 years ago.

    I guess a immune dysfuntion could make me pick up more germs in the enviroment, and may not be just a reaction to one lifelong virus that caused all this. but then in some way maybe a little of the two things might be happening.

    One thinks of xmrv, but i dont know yet if im positive or not. and will be ages untill the wpi uk study sheds light on that question. But damm i want to know this little bugger ( virus ) its name, i want it exposed to me. Hidden and destroying of the body and mind.

    I will never fully mentally recover from these experiances, which now still leave me with fear and phobias, and a deep sadness that might be called self pity. But you know it was like so tormenting, how does one come out of this unscard ?

    Some people are so brave, and i applaud those brave souls who complain little and just accept what deal we are given. But me no way, it was just terror. You can tell from my words this merry go round of uncertainty looking for a cause and a reason is almost obssesive. Buit i have to do it, i can not stop. I did for years then xmrv came along and now i want badly to figure this damm puzzle out again rather than accept the symptoms with a oh well ill never know approach.

    To know my tormenter. Just let me have five mins in a boxing ring with it. Ill beat the living daylights out of it for scaring me , and scareing me so badly for years. and on and on and on. you all know the score apologies, once started and all that ahhhhhhhhhhhhhhhh, And i am one of those that hopes xmrv is our truth, and yes i will be dissapointed if it is not. But i had nothing for years, at least theres hope of a reason and cure. even if it turns out not to be the case and i have nothing again. at least i had something for a bit.
  17. free at last

    free at last Senior Member

    Would like to add clearly this flu like onset certainly seems to link a lot of us together ( though again clearly not all ) in those cases maybe the symptoms might appear similar but has different cause. The strong connection of fighting a virus or infection of some sort, really needs to be a clue thats explored intently, as i really feel its at the heart of what has made so many really ill for a long time. There is reason here im sure of it, and that reason is defiantely a virus, or viruses, or bacterial infection, but my money is defiantely on a viral cause, either a virus that is lifelong, or a virus that has damaged the immune system that is lifelong. Never wanted to turn into a obssesive sherlock holmes. But there you go, so be it. the mind needs a reason and a cure. So be it. Once again i just find myself explaining a history that was destructive. So many are in a worse position than i am now ( was there in the past though ) Feel like a cheap skate sometimes, when i see how bad some presently are. Please dont give up, its so hard to live like this i know. But you might in time get better to a point where life isnt just a constant panic, and research is now starting to happen more than ive seen in the last 15 years, theres hope. little consolation for those on the brink now though. I feel for each and everyone of you thats living that hell. If i believed in god i would pray for you all. But all i see is some get the breaks some do not. a beutiful and torturouse life.
  18. PhoenixDown

    PhoenixDown Senior Member

    No I don't see my self as having an on going flu, in fact I almost never get the flu, I always got it less often that normal healthy people. I'd describe a lot of my symptoms as a severe lack of sleep. The fatigue doesn't effect me anywhere near as much as the accumulating pain phenomenon I experience (I don't know my fatigue limits because the pain stops me first), although more recently the fatigue has been catching up a bit with the pain.

    The few times I felt a had a flu, it was like I was wiped out completely and mostly bed bound, I call it as having a flu on top of my usual symptoms ...There's one big problem, how are we objectively defining a flu here?

    By the way I don't get PEM.
  19. SOC

    SOC Senior Member

    Have you had a sleep study and/or gotten any sleep treatment? My symptoms are vastly worse when I'm not getting the later stages of sleep (as happened recently with a generic med fiasco). Maybe (wishful thinking) many of your symptoms are from a sleep disorder and would improve with treatment.
  20. Mya Symons

    Mya Symons Mya Symons

    I had bouts of swollen glands (all over) and flu like symptoms off and on for several years (with low grade fever of around 99.5 to 101). They would usually last anywhere from a few weeks to three months and then go away. The weird thing is that when I developed fibromyalgia several years after that, for the most part, I stopped getting the swollen glands. However, I now feel like I have the flu plus got hit by a truck pretty much every day. Some days, however, are better than others.

    I wonder why the swollen glands went away when the FMS came? It is strange.

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