Spontaneous malaise vs post-exertional malaise

[Jenny]

Post-exertional malaise is supposted to me one of the hallmarks of ME, but I much more commonly experience what I would call 'spontaneous malaise', where I suddenly feel much worse for no apparent reason.

For example, I'm currently mostly bedridden, and I may be just reading or listening to the radio, feeling pretty awful with back and neck pain and slight nausea most of the time, and then suddenly the pain gets worse, becomes all over pain, severe headache, feeling chilled then sweating. Then I suddenly feel very sleepy and have to sleep for up to two hours.

This can happen at any time of the day, and it occurs about two or three times a day. There's no link with eating or anything else.

Does anyone else experience this sort of thing? What's going on?

Jenny

 

[xchocoholic]

Post-exertional malaise is supposted to me one of the hallmarks of ME, but I much more commonly experience what I would call 'spontaneous malaise', where I suddenly feel much worse for no apparent reason.

For example, I'm currently mostly bedridden, and I may be just reading or listening to the radio, feeling pretty awful with back and neck pain and slight nausea most of the time, and then suddenly the pain gets worse, becomes all over pain, severe headache, feeling chilled then sweating. Then I suddenly feel very sleepy and have to sleep for up to two hours.

This can happen at any time of the day, and it occurs about two or three times a day. There's no link with eating or anything else.

Does anyone else experience this sort of thing? What's going on?

Jenny

I was going to say to look at your diet but then I saw that you've eliminated that possibility. IMHO, you may want to look at that again. Reactions to foods can take up to 3 days ... Chicken or turkey put me to sleep in a matter of hours after eating either one of them. Other foods or toxins in my foods would cause the other symptoms ... Are you being exposed to a toxin ? Are you using teflon pans ? Eating bacon ? Eating hormone or antibiotic filled meats ? Other than that, I'm at a loss ... hope you feel better ... X

 

[HopingSince88]

Maybe this is just your own body's response to the disease process? the immune system turning up higher because a virus is replicating?

 

[Mithriel]

When you reach the stage of being bedridden, exertion takes on a different meaning. Even breathing could trigger the malaise.

We also worsen or improve to an internal rhythm which has been postulated as viral replication cycles.

Mithriel

 

[xchocoholic]

I just remembered ... this could be a severe decrease in blood glucose. Have you had a GTT (glucose tolerance test) ? Or any other glucose testing ? You need to monitor this for several hours and not count on the single finger prick many doctors try to sell you on. Honestly, I don't know why they even do that when they have no idea when or what you just ate or how your body handles food. You could just get a monitor and check your own too ...

BTW. I have 3 extremely high viral titers and have since 1990 and I'm still finding relief via diet and supplements. My doc tells me that my body needs to rebuild itself and that it simply takes time. From what I understand healthy cells can handle viruses better than weak ones ...

 

[Jenny]

Thanks for all your suggestions. I don't think it's blood glucose as eating protein doesn't help. Also, I've tried all sorts of food elimination trials - I don't think I'm intolerant to anything.

Hoping - do you have any references to viral replication cycles that might throw light on this?

Jenny

 

[alex3619]

Hi Jenny,

I have long held the view that we have many different types of fatigue in ME and CFS. Fatigue isn't one type, and the arguement could be made that we don't really have fatigue at all but other things that are called fatigue only because we lack a better name.

Many of these different fatigue types probably have diffent triggers, cycles etc. When all of them line up for a peak in fatigue, we are going to crash very badly. When they all line up for a trough in fatigue, we are going to feel very much better - the rare good day. When they don't line up, which is much of the time, we feel kind of in-between fatigue.

This is only a working hypothesis, and indicates that we may be having trouble finding causes and triggers because it is multifactorial.

bye
Alex

 

[Jenny]

That makes sense Alex.

And I would never describe any of my symptoms as 'fatigue' - my main problems are extreme weakness, severe and continuous pain, head pressure and dizziness. And that terribly ill feeling that's often described as malaise.

Jenny

 

[xchocoholic]

Jenny,

Have you had a tilt table test ? I ask because we're having similar symptoms. I'm housebound and couch bound quite a bit ... I have to lay down every few hours due to orthostatic intolerance. I can tell when I lay down that my blood isn't circulating properly because I can feel it go into my head and chest area.

If I wait too long to lay down, I'll feel shakey and can't think or speak properly. Once the shakey feeling is gone, I'll fall asleep for about 20 - 30 minutes. All this typically takes and hour and when it's done, I feel fine again ...

I just started looking at blood glucose and / or an adrenal connection to this ... Have you had your blood glucose tested at a lab ? According to my last test, my 1 hour level was over 180 so I appear to be headed for diabetes. Just another diagnosis to add to my list ... X

 

[Athene]

This is happening to me a lot lately, Jenny. I have gone through every posible trigger there is, I am sure.

My conclusion is that the infection (XMRV? Whatever it is) is in an active phase right now, and that it comes in surges. I just believe I am getting iller and iller at the moment and that there is really nothing I can do about it.

We do all we can to help our various damaged body systems but we do not have something effective to hold the fundamental cause of the damage in check. Yet.

 

[HopingSince88]

Jenny,

When I wrote my above post I was thinking about influenza and how our bodies initially react to infection. When we are first infected the body sends out the IgM antibodies. My understanding is that during this period we experience symptoms (fever/chills/achiness etc). As time progresses the body never really rids itself of the virus but keeps it under control. The immune response switches the antibody from IgM to IgG. I think we typically dont experience symptoms from IgG, or at least not the malaise-type symptoms. Otherwise everyone would never feel better after a viral infection. It is the IgG that allows us to keep the viruses in our system at bay without feeling poorly.

So my theory is that with XMRV or whatever chronic viral infection is at work, our bodys immune system reverts back to IgM to fight the infection (because the virus is still replicating and not under complete control of our immune system) and we experience the type of symptoms associated with IgM antibodies. Anything that causes the virus to replicate could trigger the IgM response along with its full complement of symptoms (malaise).

So it is my belief that the wide range of malaise that can be experienced, as well as some folks 'recovering' or some never getting ill although carrying infectious agents has to do with the ability of the immune system to control the virus (or rv) with IgG.

I know it is much more complex than this, and that there is damage that is being done by the viruses we have, but I think that the level of malaise we experience may be related to the antibody response.

I am not a science person, so someone else should comment on my understanding here. So please do comment on this...as I may be completely off base!

 

[dean]

Post-exertional malaise is supposted to me one of the hallmarks of ME, but I much more commonly experience what I would call 'spontaneous malaise', where I suddenly feel much worse for no apparent reason. .......Does anyone else experience this sort of thing? What's going on?
Jenny

Jenny, I totally agree with you. My thing is the same. For over 20 year I have examined my surges, attacks, episodes etc. I have not been able to find any consistent trigger, including exertion. (lack of a good nights sleep can mimic the process but I am not sure if this is the chicken or the egg)


Between episodes, hen I am feeling good, I can be extremely active without consequence. In fact I have heard people say that if you dont have post exertional symptoms you dont have our thing. I assure you this is not true in my case and yours it seems......

I would dearly love to have found some trigger so as to avoid my attacks. In a extemely self examined life I have not been able to. It seems to have a life of its own...

And if I knew what was going on, I think I might be in the running for a Nobel prize.....

 

[alex3619]

types of fatigue

Hi Jenny

I don't disagree with you. I focussed on fatigue because that is where I developed the arguement (something I came up with years ago), and to highlight how problematic the use of the word "fatigue" actually is. Similar arguements to my fatigue arguement could also apply to energy production, but not to the full range of symptoms in ME and CFS. For that we have to look elsewhere, although I don't doubt that many are multifactorial as well.

Fatigue is particularly relevant because we don't distinguish between different causes very well. So we call them all the same, and when twenty different things combine to form "fatigue" then we don't know what else to call it, nor how to distinguish between the causes.

Usually I include muscle weakness and malaise as "fatigue", because while many patients learn to distinguish between them, there are probably many who don't, particularly since many doctors confuse the issue by calling all of these symptoms fatigue. The biopsychobabble people certainly don't seem to understand there are many things going on and they are erroneously lumping them all together. They of course go further in dismissing all non-fatigue-like symptoms altogether.

I usually don't combine pain, pressure (not just in the head) or dizziness with fatigue. It is much more clear that they are different in this case. I am very concerned that there are many different types of fatigue symptoms around eating (intolerances to almost everything including sugar, plus hormone triggers, detox issues, genuine allergies), and from coinfections, cytokines, poor energy production, poor elastin content of tissues, decreased heart function, poor hormone regulation and supply (particularly cortisol), orthostatic intolerance and other neurological symptoms such as circadian dysregulation. Many of these are routinely called fatigue, with no attempt to separate causation - and they aren't always easy to identify from a patient perspective either.

So "Chronic Fatigue Syndrome" really means a whole bunch of things wrong with a patient that have never been properly characterized, and under the Oxford definition we can add: while ignoring everything else that doesn't sound like fatigue.

Bye
Alex

That makes sense Alex.

And I would never describe any of my symptoms as 'fatigue' - my main problems are extreme weakness, severe and continuous pain, head pressure and dizziness. And that terribly ill feeling that's often described as malaise.

Jenny

 

[xchocoholic]

I used the word fatigue to describe my muscles weakness for 16 years. It may have to do with brain fog. I can clearly tell what symptoms are happening now. I even thought my ataxia was from fatigue ... and my ataxia was clearly a nuerological problem. I failed the Rhomberg ... I'd never have figured it out though if those feeling hadn't just disappeared one day.

 

[dannybex]

VITAMIN D Deficiency...?

Hi Jenny,

Just wondering if you've had your vitamin D levels checked? Migratory pain (pain that moves around) can be one of the signs of vitamin D deficiency. And if you're bedridden (which I am so sorry to hear) then perhaps your vitamin D levels might be especially low? Other "d" deficiency symptoms include poor immune function, bone and muscle weakness, heart disease, etc., etc.

While the 'normal' range is something like 35 - 100ng/mL, I believe most experts now suggest that one should aim for a blood level of 50-70ng/mL, esp if one is ill.

 

[Jenny]

Hi dannybex - Thanks for this. I've never been able to get a test for vit D levels, but I do take 2,500 units of D3 a day.

Jenny