Malaise in general

[Englishlady]

Hello, I’m new to the forums but have been reading this site for some years now. The reviews and blogs on here are second to none.

I have ME and Fibromyalgia as well as other conditions frequently linked with these.

I’ve read a lot about post-exertional malaise, which I do experience, but actually I get malaise a lot of the time for no reason. The definition of malaise appears to be

“a general feeling of discomfort, illness, or unease whose exact cause is difficult to identify”

I just feel ill. I feel like I have a temperature and need to lie down or not do anything to make it worse. It is frustrating that when ME is discussed the most frequently mentioned symptom is fatigue. If you are feeling unwell, you tend to feel fatigued anyway. When I tell doctors I feel ill, they just look at me blankly. I don’t know if they really take in what this means on a daily basis.

The malaise happens most days and can flare up quite suddenly. I’m assuming some kind of inflammation or infection is involved. I have found no pattern to it. I often feel like my head is getting hot and feel the need to put my hand over my forehead to cool it down. Sometimes my temperature is up slightly but below 100F. This malaise is very debilitating. I cannot plan ahead very well in case I feel ill and I’m not up to things. I need work doing in the house but put it off because: (i) I don’t feel well enough to do the sorting and moving of stuff in advance; and (ii) I don’t know if I’m going to be up to dealing with work people coming and going for several days. Consequently, I get more demoralised about the state of things.

Does anyone else have this recurring malaise? Do you think doctors understand that ME is not just about fatigue? Are researchers taking this into consideration?

 

[Creekside]

ME isn't about fatigue at all; it's about a "fatigue-like" symptom. Since there's no clear definition of fatigue, of course there's confusion. Treatments for normal fatigue are unlikely to work on ME's symptom.

As for daily general malaise, yes, I think that's common with ME. I find it hard to see any difference between ME's malaise symptom and the malaise from viral infections, so I assume it's using the same mechanism, which probably involves glial activation.

It's also common to feel feverish even though your body temperature isn't elevated. I often feel feverish but find that my oral temperature is below normal. Our ability to judge our body temperature isn't very accurate, and easily mislead.

In the first few years of my ME, I told doctors that I felt like I was suffering from a flu--continually for the last few years. Sickness behaviour (changes to brain function) is there for a reason: to keep us resting to help us recover from an illness. ME seems to be triggering sickness behaviour even though ME isn't something that we can simply rest our way out of.

 

[skandar]

ME isn't about fatigue at all; it's about a "fatigue-like" symptom. Since there's no clear definition of fatigue, of course there's confusion. Treatments for normal fatigue are unlikely to work on ME's symptom.

As for daily general malaise, yes, I think that's common with ME. I find it hard to see any difference between ME's malaise symptom and the malaise from viral infections, so I assume it's using the same mechanism, which probably involves glial activation.

It's also common to feel feverish even though your body temperature isn't elevated. I often feel feverish but find that my oral temperature is below normal. Our ability to judge our body temperature isn't very accurate, and easily mislead.

In the first few years of my ME, I told doctors that I felt like I was suffering from a flu--continually for the last few years. Sickness behaviour (changes to brain function) is there for a reason: to keep us resting to help us recover from an illness. ME seems to be triggering sickness behaviour even though ME isn't something that we can simply rest our way out of.

Exactly @Creekside. Something is activating our “sickness behavior” immune signaling.
Here is summary of recent work from the Rockefeller: https://www.rockefeller.edu/news/32954-the-brain-cells-that-slow-us-down-when-were-sick

 

[Englishlady]

Thank you for your reply, Creekside. That is just how it feels. I find it hard to understand what it must be like to feel normal and not unwell for 2/3 of my life. I am sorry for others that go through this. I def feel like it must be inflammation of the brain or some sort or infection triggering an immune reaction. I suppose I’m concerned that researchers may not understand this side of ME. I had a brief course in how to manage ME and the focus was on pacing, recognising fatigue and setting achievable goals. It was mostly behavioural but the emphasis seemed to be on battling fatigue not illness

 

[Baz493]

This article, on the huge number of toxic substances which can be used in cosmetics, might help to give you some idea of how difficult it can be to identify a particular product which could be causing the conditions you have described. https://www.healthline.com/health/toxic-makeup#to-avoid I found it difficult to even walk past nail salons because of the overwhelming chemical smell coming out of them. A toxin called trichloroethylene triggered chronic fatigue and nephrotic syndrome in me via immunoglobulin activation. Then you have infections like covid, and their possible long term effects; triggering immunoglobulin related inflammation with similar symptoms. The same occurs in allergy. Whether you are talking about hypergammaglobinemia (excess immunoglobulin) or hypogammaglobinemia (too little immunoglobulin) it seems to trigger similar patterns of symptom. https://www.healthline.com/health/hypergammaglobulinemia#causes https://www.verywellhealth.com/hypogammaglobulinemia-overview-6385699

 

[Englishlady]

Thank you for your reply, Baz. It just goes to show how complicated it is to get any kind of clarity as to what is causing CFS when everyone reacts so differently to things. The only thing I suspect that will help to narrow it down would be biological samples with unusual content (like infection of immune system activation) but unfortunately I have a feeling they will be in the brain - not exactly accessible!

 

[Baz493]

Yes, the deeper I have gotten into trying to understand my own condition the more complicated it keeps getting. I was convinced that research connecting silica nanoparticle inhalation and Parkinson's was the answer to my questions but it led to a dead end. Now I'm back at a possible respiratory solution involving two separate respiratory conditions blurring the lines to getting a diagnosis. The inhalational exposures inhibiting pulmonary surfactant formation, and inducing pulmonary hypertension, while extreme exertion at work may have induced a condition called costochondritis. I had never been able to explain why I couldn't raise my arms in front of my body, or do pressing motions in front of my body, before learning about this condition. It's rare for it to last for years so no one would think to look for it and pulmonary hypertension would have created too many symptoms. Since doctors usually misdiagnose it they likely never even thought to consider it.

Unfortunately for yourself immune system activation doesn't necessarily indicate an infection. Invasive microorganisms generally try to camouflage themselves as natural cells from our bodies. So, in order to identify invasive microorganisms, our immune system looks for specific molecules which it has already identified as being pathogenic. In the case of covid these are certain proteins but in toxic exposures they can be minerals or chemicals or even the damage which has been caused by things our body can't identify.

 

[jaminhealth]

A moderator friend on PR advised me she takes Extra Potassium capsules 3-4 times daily, 200mg or so each time.....now and then she will talke a high dose of potassium for a Bump in the Mineral.

Know your labs and know that you are mostly likely deficient. Adequate Potassium helps REDUCE fatigue.

I even throw in several tabs of Potassium into soup I'm making.

Check your labs...you could be Low End of Potassium range....

I don't deal with CFS but have other issues and FM and arthritis and FATIGUE....and older AGE.

 

[jaminhealth]

Hi and sorry to see you here. I don't deal with ME, maybe Fibro but I never accepted the FM dx...My issue mostly is Osteoarthritis and body damage from hip replacement, that was in 2010....so 13 yrs soon.

A long time friend deals with long time ME and she has tried so many supplements over the years and no drugs that I know of, and her most recent find is Extra Potassium daily. Finds foods that have potassium glucconate and supplement as she does 2 tabs or capsules, 200mg 3-4 times daily. I do this too and always keep a stock of avocados as they are high in potassium. And too pricey now since covid mess.

 

[Baz493]

Hello, I’m new to the forums but have been reading this site for some years now. The reviews and blogs on here are second to none.

I have ME and Fibromyalgia as well as other conditions frequently linked with these.

I’ve read a lot about post-exertional malaise, which I do experience, but actually I get malaise a lot of the time for no reason. The definition of malaise appears to be

“a general feeling of discomfort, illness, or unease whose exact cause is difficult to identify”

I just feel ill. I feel like I have a temperature and need to lie down or not do anything to make it worse. It is frustrating that when ME is discussed the most frequently mentioned symptom is fatigue. If you are feeling unwell, you tend to feel fatigued anyway. When I tell doctors I feel ill, they just look at me blankly. I don’t know if they really take in what this means on a daily basis.

The malaise happens most days and can flare up quite suddenly. I’m assuming some kind of inflammation or infection is involved. I have found no pattern to it. I often feel like my head is getting hot and feel the need to put my hand over my forehead to cool it down. Sometimes my temperature is up slightly but below 100F. This malaise is very debilitating. I cannot plan ahead very well in case I feel ill and I’m not up to things. I need work doing in the house but put it off because: (i) I don’t feel well enough to do the sorting and moving of stuff in advance; and (ii) I don’t know if I’m going to be up to dealing with work people coming and going for several days. Consequently, I get more demoralised about the state of things.

Does anyone else have this recurring malaise? Do you think doctors understand that ME is not just about fatigue? Are researchers taking this into consideration?

I recently proved to my GP that a lot, if not most, of my own issues stem from a short bout of liver failure with ongoing liver issues as a consequence. Looking at the possible connection to your fibromyalgia I would suggest that it may be something which you could investigate regarding your malaise. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4688457/