Does anyone NOT have flu-like malaise?

[fingers2022]

Interesting thread Hope123.

My own main symptom I describe as "malaise", further expanded as "feeling crap". I can't relate it directly to any pre-ME experiences, so common terms like "flu-like" are inadequate. It's all around my head - severe, prolonged headache, dizziness (even that's not exactly right!), light-headedness (relates to low blood-sugar which I suffer as a reaction to sugar). The more I do the worse it gets and is accompanied by fatigue - also inadequate, as it's a kind of feeling-ill fatigue. That's why I hate the term CFS.

Incidentally similar to you Hope123, I was a triathlete pre-ME. I think this has a connection - overtraining coupled with a stressful job possibly made me susceptible (to XMRV or whatever else).

Maybe we (or researchers/clinicians) can learn something from all the input here. Is there a set of symptoms which chracterises XMRV-ME for example? Gather symptom data/knowledge on all XMRV-positives. Is it possible to identify subsets of the ME/CFS population and relate this to different causal factors. Somebody also made a good point that multiple incidence in families occurs but is not recognised, pointing to infectious cause.

I think there's a whole heap of knowledge out there which could be a rich source of answers, but I'm not sure the labs are the right/only place to find them quickly.

I'm sure these thoughts have been expressed before, so apologies. It's cathartic to post though.

 

[Countrygirl]

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.[/

QUOTE]

I was so concerned about Kerrilyn,Gracenote and others describing what I think of as post-viral syndrome, which is quite different to how I experience this illness, that I began to wonder whether I have been misdiagnosed these last 30 years. To me, I would describe the post-flu malaise as a post-viral syndrome. This is totally different to my experience, so I checked the Canadian Criteria again. I can tick off nearly every symptom, but not the flu-like malaise, the headaches or general achy muscles, apart from very painful intercostals around my rib cage. So, do we have different illnesses, or just different expressions of the same one? Curious - and a little unnerving. :worried: I want post-viral malaise too! :tear: I'd be happy to trade in the insomnia for something new!

 

[Countrygirl]

Interesting thread Hope123.

My own main symptom I describe as "malaise", further expanded as "feeling crap".

Exactly! :Retro smile:

I can't relate it directly to any pre-ME experiences,

No, neither can I. I know of no word in the English language that expresses how I feel. No illness I had pre-whatever-this-is, prepared me for this. It is like nothing else.

 

[fingers2022]

maybe it's because we both live in SW Endland - a language all of our own.

 

[fingers2022]

darn, never get those quotes right

 

[Countrygirl]

Countrygirl;50395]

maybe it's because we both live in SW Endland - a language all of our own.

Hi neighbour

I did try to change it, but couldn't budge the 'd'. At least I've mostly mastered the quotes. :

 

[creekfeet]

I'm not up for counting it out right now even on all four paws, but it looks like what's pretty common is yes to flu-like sensations but no or rarely to fevers. That would be my answer.

Are both "flu-like symptoms" and "fevers" going to be asked on the questionnaire?

 

[kerrilyn]

QUOTE]

I was so concerned about Kerrilyn,Gracenote and others describing what I think of as post-viral syndrome, which is quite different to how I experience this illness, that I began to wonder whether I have been misdiagnosed these last 30 years. To me, I would describe the post-flu malaise as a post-viral syndrome. This is totally different to my experience, so I checked the Canadian Criteria again. I can tick off nearly every symptom, but not the flu-like malaise, the headaches or general achy muscles, apart from very painful intercostals around my rib cage. So, do we have different illnesses, or just different expressions of the same one? Curious - and a little unnerving. :worried: I want post-viral malaise too! :tear: I'd be happy to trade in the insomnia for something new!

Hi Countrygirl, I question stuff like this all the time. Do I have CFS or a wide variety of overlapping illnesses (like FM, MCS, endo, OI etc) that bring on all the symptoms of CFS. Wish I knew :Retro smile:

I had to look up Post-viral Syndrome because I didn't know what the symptoms are. Most sites were UK based and said it's often also called CFS/ME. OK, so what is it exactly (like chronic Epstein Barr Virus maybe)? I'm from Canada, not heard PVS mentioned here.

A couple sites listed vague PVS symptoms as fatigue, musculoskeletal pain, neurocognitive disfunction - I have all those (that's same as FM), and mood disturbances - that I don't have. The Canadian CFS info is more detailed and lists PEM, MCS, neuroendocrine, autonomic and immune manifestations are required for diagnosis, I also have those.

I like your description of feeling like crap, for me, it's just varying degrees of crap depending on the day.

 

[fingers2022]

Oh $h*t, quotes again, here goes......

I had to look up Post-viral Syndrome because I didn't know what the symptoms are. Most sites were UK based and said it's often also called CFS/ME. OK, so what is it exactly (like chronic Epstein Barr Virus maybe)? I'm from Canada, not heard PVS mentioned here.

Post viral fatigue is used in UK to describe the period after a viral infection, when it's no longer active, but you haven't fully recovered - often used by athletes. Post viral (fatigue) syndrome has been used as an alternative to ME, but now both seem to be superseeded by CFS (which is an inferior name to the previous two).

I vote for Countrygirls name of "like-nothing-I've-had-before-syndrome".

 

[Countrygirl]

Hi Kerrilyn,

I was told by my diagnosing doctor that I had severe ME also known as Post Viral Syndrome. However, I had had PVS post-glandular fever, and the two are totally different in my experience. PVS to me is just being too tired (tiredness is not a luxury that ME affords me) to function and sleeping round the clock. That is so not what I experience as ME. All I can say is that 'something hit my brain' and totally knocked every system out of kelter. Then came the MCS, POTS, inability to even sit up right for years without collapsing, mild fevers, feeling poisoned, drenching cold sweats, not being able to digest food, memory loss, massive drop in IQ, dyscalculia, dyslexia, non-stop insomnia, that horrible wired feeling, confusion, breathlessness, cardiac problems, ataxia, strange skin sensations, etc..........how is that PVS or flu-like malaise?

I have never felt like that after flu. Just wiped out and....oh the memory of it...very sleepy. Something that never happens now.

 

[kerrilyn]

Countrygirl and Fingers, thanks for that info. The PVS you are describing sounds like a thread I just read on PH site about Dr. Oz having a Chronic Epstein Barr patient on his show and the difference between that and CFS. Someone described it the same way.....you feel very fatigued all the time but can sleep a lot vs CFS where you want to sleep but really can't plus your whole body no longer functions properly.

I would say I felt like that for years after I had mono (with some mild CFS symptoms) but there was a change at some point - exactly as you say 'something hit my brain' (for me I had whiplash so an actual blow to the head) and I felt completely different at that (symptoms worsened and new ones came). Everything you mentioned - today in particular I'm feeling poisoned on a cellular level.

When I said most days I felt like getting out of the flu rather than having the flu, I didn't mean just fatigued. I meant less dreadful than when I have a crash and I'm a 10/10 (feeling as bad as I can). .....all the things you mentioned just to a lesser degree depending on the day. It's hard to put everything you listed into just one word - flu-like malaise just doesn't cut it. ....But I know I don't have fevers. If I get a real bout of the flu where I caught a bug from someone rather than fighting my own every day 'sickness', then I will get a fever (that's the only real difference). But I very rarely get the actual flu.

 

[dannybex]

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.

Thanks Countrygirl. I really think that's the key difference...that's the 'immune dysfunction' aspect that is part of this illness...we generally never get a REAL fever, one high enough, that heats up the body long enough so it would help kill off the buggers, no matter what type they may be. I guess I would also wonder if people with chronic lyme ever get 'real' fevers, but that's probably a topic for a completely different thread.

Although it seems like there are so many and too many 'syndromes' these days, and we all hate the term CFS (or most of us do), while CFIDS was an improvement, I always thought CIDS (Chronic Immune Dysfunction Syndrome) would be the best of all three. Just my two cents.

d.

 

[Countrygirl]

=dannybex;50454]Thanks Countrygirl. I really think that's the key difference...that's the 'immune dysfunction' aspect that is part of this illness...we generally never get a REAL fever, one high enough, that heats up the body long enough so it would help kill off the buggers, no matter what type they may be.

And perhaps not just with fevers.......

I've recently had a curious experience. With one other person, I helped take care of a relative who had the Norvovirus - lots of projectile vomiting and other things I will leave to your imagination. Lots of it. :Retro mad: Everywhere. :tear: Very nasty indeed. It is very infectious....if you are in contact with it you get it. Both of us went down with it within 48 hours. But, the other carer was very ill with it, but I 'just' experienced a worsening of the ME, stomach cramps and nausea....but that was it. I wondered if this was like getting the flu ....the immune system can't quite respond. Normally, I wish I could run a good fever because I instinctively feel I would be better, but with Norvo, well, uck! I was so relieved that I didn't experience all the juicy bits. It just seemed strange that I was the only one who did not get the full works. I wonder if it is true of any infection. I have found that one never develops colds and has only a low-key reaction to flu..now even Norvo falls at the first fence.

Anyone tried typhoid? Volunteers anywhere....in the name of science?

 

[Hope123]

Wow, this thread really blossomed! Thanks for replying everyone. It is interesting to see how people interpret "flu."

I would not expect everyone to have the "flu-like" malaise as there are very few symptoms in illnesses where 100% of the person having the disease will have it (not even heart attacks - some people don't get chest pain) but if a large proportion have it, then it still might be useful as a screen in conjunction with other things. The Canadian criteria are useful but might be difficult for your run-of-the-mill general physician to remember and go through thorougly.

I say "flu-like" because it's the closest phenomenon I can imagine to how I feel like compared to when I was healthy. My body actually feels inflamed much of the time, worse with exacerbations. And the "close to getting over the flu" feeling are as good as it gets for me. Some researchers have found that cytokines (immune system chemicals) are elevated in people with CFS, others have not and I wonder if it comes down to people with and without the "flu-like" feelings as cytokines go way up with the flu. Of course, the Fukuda definition doesn't include this as I posted earlier although it contains other correlates of the flu like sore throat, headache, etc. I also wonder if it will help separate some people with CFS from others with depression.

The other piece not in Fukuda is onset. Although there are folks with CFS who don't have an virus-like onset, 30-70% do in various surveys and I think it's worth physicians asking.

 

[hensue]

I think this is going to be one of the big differences in xmrv + or not. Of course I am not as smart and technical as most of you are. I am positive with xmrv and when I have a flare or overdo. It is def flu like symptoms. headache, drainage aching all over sore throat and much worse fatigue. Actually can barely use my voice most people on the phone know I am having a flare. I def would like to know who has this and if they are positive for xmrv. No fever I am usuall cold with chills.

That is how I explain flu-like. I like a lot of you do not get colds or flu.

 

[SDD1244]

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

Hi Jenny,

Here is a good article on autoimmune antibodies. From what I understand one out of every four people who have CFS, have a positive ANA.

http://arthritis.webmd.com/antinuclear-antibodies-ana

 

[Jenny]

Thanks very much SDD. Do you know if these are related to other neurologic antibodies?

I have abnormal levels of BBB protein, myelin basic protein and neurofilament antibodies.

Jenny

 

[Countrygirl]

=Countrygirl;

. I can tick off nearly every symptom, but not the flu-like malaise, So, do we have different illnesses, or just different expressions of the same one?

I lied!

I'm sitting here with difficulty, feeling for all the world as though I have flu! ....red swollen throat, swollen lymph glands, and my brain feels fried, as though its inflammed and things look....well..sort of scrambled.......and the rest It feels as though I should be running an impressive fever, but nothing's happening. I'll be lucky if it struggles up to anywhere near normal.

Well, it's not so much that I lied :Retro redface: just haven't had this particular problem for a while.

So, count me in with the rest. I have flu-like malaise too..... it's just that my memory's shot. :tear:

I tried a little light gardening yesterday. Flu-like malaise is the payback.

 

[Cort]

I really feel for people who have this alot because when I had it it was my most hated symptom. I've had to sleep outside for years because of my MCS and every when I would get cold I would get this. Sometimes the slightest movement would send this fluey feelings pulsing my body; it was very connected to movement interestingly enough. I imagined it was due to reduced body temperature allowing some sort of bug to flourish; I would get it and it would sometimes last for months - really hard to shake. I was not sniffy or headachy but very fatigued, muscles would ache - kind of an internal flue. Its been a couple years now since it happened to me. Miserable stuff...The only other time I would get it was when I really overdid it physically. I would go from feeling like my muscles were burning up to a fluey state. That didn't happen often because I would stop very quickly!

 

[strawberry]

I have chronic flu-like malaise. It waxes and wanes on its own, minute to minute, hour to hour, day to day, etc. It also flares up when I go to bed and start to fall asleep (I use the term sleep loosely - grogginess with fragments of REM really). It feels like my body is fighting a virus. Sweating, sore throat and headache also intensify. The effect of the sleep flare-up lasts for several hours after getting out of bed. And 24 hours after physical activity it flares up for several days due to post-exertional malaise.

The flu-like experience is different from an ordinary viral infection in that it feels like a virus or an immune reaction to one has penetrated my CNS/peripheral nervous system and is causing a lot of other symptoms relating to cognition, pain and general bodily functions.