1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

How do you describe "flu-like"

Discussion in 'Immunological' started by Andrew, May 19, 2012.

  1. Andrew

    Andrew Senior Member

    Messages:
    1,951
    Likes:
    1,206
    Los Angeles, USA
    Apparently, not everyone experiences cold or flu the same way. I have tried to explain "flu-like" to doctors, and we seem to have no common ground of understanding. When I ask them how they feel when they are sick they say they are tired or worn out. And frankly, I don't understand this. When I got a cold or flu and had to cancel a social engagement, I didn't call and say "I can't meet you, I'm feeling tired." Or, "I can't meet you, I'm feeling fatigued." Being tired or fatigued was a part of life. I was always tired after work. No big deal. It never stopped me from going out. Never kept me from shopping. Etc.

    When I got a cold or flu there was a sensation going through my body like a generalized ache, there was pressure in my face, difficulty focusing, feeling spaced out, plus something I can't describe. It's that general feeling of unwellness that's called "malaise," except mine is not vague. Sort of like having a hangover, but much worse. It is incapacitating. Just like nausea is incapacitating, without being pain or fatigue.

    Am I the only one who feels this???

    So I have a question. Before you got ME/CFS, did the cold and flu feel like being "real tired" to you, or where there other sensations going on? How would you describe it?
    L'engle likes this.
  2. caledonia

    caledonia

    Messages:
    2,738
    Likes:
    1,334
    Cincinnati, OH, USA
    I have no idea what your doctors are talking about.

    Cold - sore throat, fever, cough, runny nose progressing to stuffy nose, loss of taste and smell, lower appetite, sneezing, extra tired, need more sleep, spacy, possibly headache or body aches. This is something you could work through if you had to.

    Flu - all of the above X 10, plus body and joint aches/pains that travel around, higher fever, worse exhaustion and need for sleep. At some point you may be so weak you're totally unable to move. There is no way you can work through the flu. You'll be out of commission for at least 10 days.
    bigmama2, ggingues and Enid like this.
  3. lnester7

    lnester7 Seven

    Messages:
    1,167
    Likes:
    1,030
    USA
    I use "I am feeling mono like tired (EBV)", and people get it better (if they have had mono).
    Before I got sick the only thing that I can compare to is Mono. Any other tire did not even describe what we feel.
    7
    SickOfSickness and bigmama2 like this.
  4. SOC

    SOC Moderator and Senior Member

    Messages:
    5,185
    Likes:
    6,049
    USA
    That pretty well describes it for me... except the hangover bit. I've never had a hangover, so I do not know to what you are referring. :angel: [darn, we lost the smug smilie, just when I had a chance to use it :(]

    It's hard to imagine doctors not knowing that feeling. I've heard that the symptoms you have described are caused primarily by cytokines. Maybe we have a natural excess of those cytokines, and so notice the symptoms more than your docs.....?
    L'engle likes this.
  5. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    71
    PA, USA
    Aside from most doctors can be idiots, :D:rofl:, I always got the flu exactly how you described it. Spaced out, dizzy, feverish, achey all over. Plus drained dead of the flu fatigue. Weak. Why your doctors don't understand this is beyond me.
  6. bigmama2

    bigmama2

    Messages:
    52
    Likes:
    3
    FL, PA
    hi
    i agree w what what the other posters wrote. i dont know whats wrong w those drs who act like they dont know what being sick w a cold or flu feels like. that's absurd. everyone know what cold or flu feels like. and no, dumbass drs, it does not just feel like being tired.
    w cfs i do get the flu-like feelings on and off, but it is def more mild than an actual flu. and i also get the hungover feeling. along with many other negative abnormal feelings. everyday is like a surprise- whats it gonna be today- flulike with a side of space cadet? hungover w some depression? feeling pretty good? feeling normal? now back to fluish, and so on!
    i did have the actual flu last fall and it was the most severe i had ever had it in my life. shockingly painful and beyond incapacitating. it freaked me out. was so weak i couldnt open a bottled water. only lasted 2 days thank god!
    take care
    bigmama2
  7. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,742
    Likes:
    4,611
    Sth Australia
    I dont know what on earth your doctors are talking about... sounds like they are playing some kind of game with you as surely they know flu dont feel like just that.

    how i describe a cold is sneezy, running sometimes red nose, sometimes ear ache, slightly sore throat.. (before ME I didnt even get tired at all with a cold).

    Flu .. muscle aches, fever, pale or red in the face, malaise, possible headache.. really really feeling like crap. I can get that feel both with flu before ME and also get the same kind of feel to the same degree but even worst if I crash bad with the ME (so hence not then flu as such)
  8. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,301
    Likes:
    1,698
    London
    Some times Andrew I feel like doctors hear chronic fatigue syndrome but all that filters through is fatigue, fatigue, fatigue.

    So if we say "flu like" to them they think what does fatigue feel like when I have the flu.

    When I say flu-like I mean the glands, all over achey pain, sore throat etc. However to a doctor who has grasped on to the word fatigue that won't count as fatigue is the major symptom in their minds and all the rest isn't worth thinking about.

    They have a filter set and everything apart from the f... word isn't heard. They don't need to think about anything else then and confuse themselves.
    lastgasp and WillowJ like this.
  9. Andrew

    Andrew Senior Member

    Messages:
    1,951
    Likes:
    1,206
    Los Angeles, USA
    I think you could be right. And not just doctors. I think from now on I'm not going to tell anyone I have chronic fatigue syndrome. I'll just tell them in 2005 I was hit with Coxsackie virus, and I've felt sick ever since. Then all I have to listen too is "try garlic" and "if you believe you will get better, you will."
    SickOfSickness likes this.
  10. WillowJ

    WillowJ Senior Member

    Messages:
    2,892
    Likes:
    2,293
    WA, USA
    as has been mentioned, official symptoms of flu are: body aches, chills, fever, headache, chest discomfort/cough, and malaise (that feeling which really isn't vague--and I have no idea why the medical dictionaries say so, unless they mean the cause is vague, or the words to describe it are lacking, or it is not necessarily a localized feeling--but is sick and which we don't seem to have too many other words for besides "I feel sick / soooo sick", though "spaced out" helps).

    But, I do feel fatigued/weak when having the flu. It is a very severe fatigue, not at all like being tired from work or ice skating or staying up too late or whatever normal healthy person fatigue. It's the sort of weak fatigue where you're barely able to get out of bed and heat yourself some soup, probably have to lean on the counter to do so.

    (yes, this is a legitimate meaning for fatigue, but the problem is that there are at least half a dozen meanings for fatigue, some of them very different from each other, and some of them applicable to healthy people, and some of them applicable to people sick like us from any number of causes, and some of them applicable to people sick with various unlike things...)

    I think ukxmrv could be right, and in that case it would probably help to specify the other symptoms. Even if you have to say malaise (they should have read this in connection with enough diseases to understand it means "feels ill while being sick with a disease").
  11. Desdinova

    Desdinova Senior Member

    Messages:
    272
    Likes:
    124
    USA
    If your doc knows that you believe in CFS/ME and doesn't buy into CFS/ME being a real condition then hes not going to feed/ entertain your attempts at education. It's his way of keeping you from getting ahead and / or from his contributing to and feeding your false beliefs.
  12. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
    My ME is just like this - having flu 24/7, 365 days a year, for decades. It's aching all over, headaches, feeling shivery, sweaty, dizzy, plus extreme weakness. It IS very similar to the experience of having flu before I got ME, but without the fever, runny nose, cough or sore throat. 'Fatigue' isn't a word I would ever use to describe any symptom.

    Jenny
  13. voner

    voner Senior Member

    Messages:
    227
    Likes:
    131
    This is a good discussion. Communicating your symptoms accurately -it is so hard!

    I seem to have a good success with the flu like ache description if I can directly ask the person (and try to make them personalize the feeling),

    "when you have the flu and you start to feel little bit better and you get out of bed and you try to do something, but you are not yet healthy enough, so your body kicks back at you and you feel real achey & horrible and all you wanna do is go back to bed?"

    if they reply in the affirmative, then I reply --

    "Well, that's an idea of what the ache sometimes feels like."

    It's not perfect and its only 1 symptom, but it seems to register with people. I also think that another big misconception is that fatigue is the only symptom..... which is probably a more detrimental misconception, as people just think, "I get tired also". We all know that attitude.
  14. free at last

    free at last Senior Member

    Messages:
    479
    Likes:
    41
    Did someone mention flu like symptoms. Had to join in here.
    We all know what classic heavy A influenza feels like surely. you get the high fever, burning hot one sec, shivering cold the next. goose pimples running down your arms and the back of your head. can actually see them on your arms when you move like chicken skin, headache banging. chest infection soreness. very weak, nausea, loss of appetite. white pale face, dizzy. spaced out aching. Its those symptoms that started my illness. then over the years, all these symptoms got milder gradually, With the fevers stopping first. Then the sweating stopping. then the goose pimples, and feeling hot or cold ( hot or cold without fever now. i mean ) chest involment getting less, to hardly ever.

    Recently had a mild attack, the first for ages.started with the weird chest irratation, then slightly hot feeling. ( didnt measure my temp, no thermometer ) but felt mildly high. the weak feeling in hands when i try to clench them, the spaced out feeling. staring into space, speech affected stuttering. Dreams distubred. like dreaming with food poisoning.

    That sick crappy ill, weak feeling. Though without the extreme nausea one gets with full blown food poisoning or real flu.

    Infact how it can feel when flu first starts, before it really gets into its stride, before the fever kicks in with the shivering ect.

    But the main symptom, that weakness one gets with a viral illness. that crappy ill feeling. like poison running through your blood. that follows you in even deep sleep.

    It only lasted two days. it wasnt a virus i caught im sure, I know those symptoms like a old friend i hate so much. The chest disapeared in a few hours ( weird i know ) Flu or colds take longer to get rid of the chest stuff, and leave you with a cough, often with green phlem. nope none nadda.

    Other symptoms the weak crappy ill feeling. going by day 3. Oh and more blurry vision than normal. vision affected quite a lot, bright blurry vision found it hard to read anything. i can normally read without my glasses reasonably. But now forget it, like i was 10 years older, like it was damaging my vision ? its since recovered. since recovering

    Basically all the same symptoms i got much worse. when i was more heavily ill with this years ago.

    Like the immune system has somehow figured how to react less severly to what ever causes this immune type of reaction. cytokines maybe ? mild cytokin reaction. rather than extreme cytokin release.
    Hope im making sense. ? like a mild case of what i would expect a HIV person to experiance. Im HIV neg btw. Long periods of good health sometimes seem to make a crash more intense. its a pattern i noticed over the years, in other words when i had milder crashes more often they was often less strong. but when i had long periods of better health the crashes seemed stronger. Like a virus had recovered its strength to attack again, and the immune system had to react more violently. Does this make sense to anyone. ive not mentioned this before
  15. svetoslav80

    svetoslav80 Senior Member

    Messages:
    484
    Likes:
    149
    Bulgaria
    Thanks for posting this. "Hangover" is exactly the word which describes my condition. Flu-like is very similar feeling but not exactly the same (I have experience with both). It's hard to explain the difference though.
  16. SOC

    SOC Moderator and Senior Member

    Messages:
    5,185
    Likes:
    6,049
    USA
    That's what I do these days -- run off a list of documented infections, tell them there's something wrong with my immune system based on tests, and that the doctors aren't sure what it's all about. How ridiculous is it that the illness has such a moronic name that we can't even use it without making people go deaf to everything except "fatigue"?
    bigmama2 likes this.
  17. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,806
    Likes:
    906
    US
    One of my experiences FWIW. I had a doc that I (and my close friend) considered very good, and I knew docs who considered him very good. When I go to docs I often have brain fog and I was trying to tell this doc about allergy symptoms including flu like feeling. I was not able to be specific and he just kept asking me what it feels like. In this case I could tell he didn't want to lead me and suggest symptoms and have me just agree. In this case, I am sure he could have listed 20 symptoms but he wanted to know what I came up with, so he gave me this blank look and acted like he didn't know.

    I also have had a doc who truly didn't know that allergies were a big deal sometimes, to the point of feeling flu-like.

    Some people don't get sick much, and after a year or two they forget quite how bad the flu can be. I know someone who might not even get a flu or cold once in 5 years! Or if so, it would be mild and go away fast.
  18. Andrew

    Andrew Senior Member

    Messages:
    1,951
    Likes:
    1,206
    Los Angeles, USA
    It's just interesting that a doctor (with all the training) isn't aware that some colds or flu might cause body aches, sinus pressure, body aches, dizziness, difficulty focusing, sore throat, a general feeling of malaise.... and fatigue. I saw a doctor who was trying to treat my CFS, I explained what flu-like means, and despite this, he kept referring my symptoms as "fatigue." And once when I corrected him, he said that flu does cause fatigue. Well, great. I know it does. But what's the point of having me sit answering all his questions during intake, if he's just going to ignore it all.
  19. bigmama2

    bigmama2

    Messages:
    52
    Likes:
    3
    FL, PA
    speaking of the flu-like feeling- i have been having alot of it in the last 6 weeks. and lungs ache. saw dr- got antibiotics, took em. didnt help. still flu ish and lungs ache. saw dr again today- upping the amout of asthma med and he ordered a pulmonary funtion test. this fluish feeling sucks! how to make it go away?
    bigmama2
  20. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,301
    Likes:
    1,698
    London
    Bigmama,

    these are the things that have helped me with flu like symptoms (but no where near a cure)

    1. Valtrex
    2. Imunovir
    3. Humira
    4. Exercise avoidence (as I get flu like symptoms as part of PEM)

    My biggest failures have been diet, antibiotics and vitamins / supplements.

    We are all different and patients have found over time many different things that help them but some symptoms remain incurable. Really sorry to hear how you are suffering. I'd love to know what causes the aching lungs as I has them for years. It wasn't the muscles around them (had that as well at times) but a deep soreness as if they were inflamed or something.

    Good luck with the test
    bigmama2 likes this.

See more popular forum discussions.

Share This Page