Fatigue: late night or early morning type?

[MeSci]

i was once approached by a MS patient who asked me in which way my fatigue differed from his fatigue. In the end, what's different is that these patients with MS, cancer, lupus, RA, hep C, HIV/AIDS all have a good reason to be fatigued, and they have a diagnosis and we don't, so according to many physicians and decision makers, it makes us unworthy of having a clear reason to feeling so sick. Moreover, since there is no clear reason of feeling so sick, the tiredness that we feel is then compared to benign fatigue that everyone feels at the end of the day and minimized as 'it must not be that bad'.

That's almost the exact words my GP used when I was trying to get a letter from him to support my getting some home adaptations - notably the removal or reduction of steps, and ideally a downstairs bathroom. He snapped at me "Is it really that bad?"

(He did write the letter, but like usual doctors' letters it was all "She says she has..." So ridiculous. The council couldn't accept it when I said directly what I needed and what my problems were, but would act if a third party said that I said it!)

The money wasn't available in the end, but I have improved and can manage without the adaptations now, but I did sprain my ankle quite badly on a step in the meantime, and fell on the stairs more than once, on one occasion only barely managing not to fall all the way down by clinging to the stair-rail with one hand as I swung round by about 180 degrees!

My legs were just too weak to be any use in stopping me from falling.

They are rarely "that bad" now.

 

[ukxmrv]

Hopefully Professor Edwards is off recovering from his 4am wakeup.

It's very kind of him to ask the first question trying to understand how a person with CFS or ME would feel in comparison with that.

There are few scientists and medics to try to understand the symptoms from a personal point of view in the UK. Let alone ask questions about what "fatigue" feels like.

(and especially after a 4am start which would be hard for most well people)

 

[OverTheHills]

This one? It's closed now.

Thats it. Thanks MeSci

 

[justy]

I have been keeping a little eye on my 'fatigue' today and can certainly attest to the fact that it has many different flavours. What I have learnt in the last two hours is that when trying to push through my limits to get jobs done the fatigue actually feels very much like pain.

This is strange as I have never really thought I suffer from pain much. But what I was describing to others as tiredness (for the sake of saying something they would understand) was actually exhaustion accompanied by pain. The pain feels like it is in all my joints and also pulsing down and up arms and legs etc. It is very much like achey flu pain and joint pain combined.

Bet you wished you had never asked now eh?

 

[NK17]

I have been keeping a little eye on my 'fatigue' today and can certainly attest to the fact that it has many different flavours. What I have learnt in the last two hours is that when trying to push through my limits to get jobs done the fatigue actually feels very much like pain.

This is strange as I have never really thought I suffer from pain much. But what I was describing to others as tiredness (for the sake of saying something they would understand) was actually exhaustion accompanied by pain. The pain feels like it is in all my joints and also pulsing down and up arms and legs etc. It is very much like achey flu pain and joint pain combined.

Bet you wished you had never asked now eh?

So well described @justy, I couldn't say it better.

Maybe we should call our ME pain/aches the Quality Street assorted pain, being in the UK I'm sure you know what I'm talking about .

 

[Jonathan Edwards]

I have been keeping a little eye on my 'fatigue' today and can certainly attest to the fact that it has many different flavours. What I have learnt in the last two hours is that when trying to push through my limits to get jobs done the fatigue actually feels very much like pain.

This is strange as I have never really thought I suffer from pain much. But what I was describing to others as tiredness (for the sake of saying something they would understand) was actually exhaustion accompanied by pain. The pain feels like it is in all my joints and also pulsing down and up arms and legs etc. It is very much like achey flu pain and joint pain combined.

Bet you wished you had never asked now eh?

Absolutely not, Justy, I find this really useful. It is this detail of symptoms or signs that I think gives hidden clues to how diseases work.

I looked at the old poll. It is also very useful but there seem to have been some more details coming up this time. One thing is this low battery feeling. Another is a hint of nausea for some people. Another is this aching/pain you mention maybe with the heaviness. And another is how something seems to ring the changes, sliding from one pattern into another. I know I may be wrong but I actually think there are probably situations where normal people get at least a temporary taste of all of these types. (Post-anaestheisa was pretty bad and I was confused enough not to be able to be comforted by the idea that it might go away some time.) If not I am sort of stuck because I cannot know what you refer to, but I don't think it is in fact impossible.

 

[Cheesus]

One thing is this low battery feeling. Another is a hint of nausea for some people. Another is this aching/pain you mention maybe with the heaviness. And another is how something seems to ring the changes, sliding from one pattern into another.

I was thinking about the 'low battery' idea, and to me it isn't that the battery is low, but more that it is absolutely tiny. If I am lying in bed doing absolutely nothing all day then I can feel relatively normal, but if I then have to go to an appointment or something it uses everything up. I have no where to store energy. Either that or it simply drains at an astonishing rate.

Perhaps that is a somewhat pernickety distinction but it would more closely echo my experience.

 

[Sasha]

I was thinking about the 'low battery' idea, and to me it isn't that the battery is low, but more that it is absolutely tiny. If I am lying in bed doing absolutely nothing all day then I can feel relatively normal, but if I then have to go to an appointment or something it uses everything up. I have no where to store energy. Either that or it simply drains at an astonishing rate.

Perhaps that is a somewhat pernickety distinction but it would more closely echo my experience.

It's not just that it's tiny - it's that it takes ages to recharge.

 

[Kati]

That's almost the exact words my GP used when I was trying to get a letter from him to support my getting some home adaptations - notably the removal or reduction of steps, and ideally a downstairs bathroom. He snapped at me "Is it really that bad?"

(He did write the letter, but like usual doctors' letters it was all "She says she has..." So ridiculous. The council couldn't accept it when I said directly what I needed and what my problems were, but would act if a third party said that I said it!)

The money wasn't available in the end, but I have improved and can manage without the adaptations now, but I did sprain my ankle quite badly on a step in the meantime, and fell on the stairs more than once, on one occasion only barely managing not to fall all the way down by clinging to the stair-rail with one hand as I swung round by about 180 degrees!

My legs were just too weak to be any use in stopping me from falling.

They are rarely "that bad" now.

Most drs don't get it. They think they do, but like you found out, they don't.

 

[Cheesus]

It's not just that it's tiny - it's that it takes ages to recharge.

It is like the battery on my iPhone then.

 

[golden]

I was thinking about the 'low battery' idea, and to me it isn't that the battery is low, but more that it is absolutely tiny. If I am lying in bed doing absolutely nothing all day then I can feel relatively normal, but if I then have to go to an appointment or something it uses everything up. I have no where to store energy. Either that or it simply drains at an astonishing rate.

Perhaps that is a somewhat pernickety distinction but it would more closely echo my experience.

One type is it drains fast and then trickle charges at a ridiculous slow pace.

Edit: I see others have posted this.

 

[Jonathan Edwards]

I was thinking about the 'low battery' idea, and to me it isn't that the battery is low, but more that it is absolutely tiny. If I am lying in bed doing absolutely nothing all day then I can feel relatively normal, but if I then have to go to an appointment or something it uses everything up. I have no where to store energy. Either that or it simply drains at an astonishing rate.

Perhaps that is a somewhat pernickety distinction but it would more closely echo my experience.

It makes sense to me. It sounds a bit like my old laptop. Even if I charge it up it runs down in no time now. Maybe these are two different aspects though? Running on low AND small capacity even when 'recharged'. And this time lag thing where you pay the price a bit later, or not until you have done a certain amount, does seem interesting. I guess there are several possible explanations but I suspect there is one that fits better than the others. I do have to admit to a certain amount of information overload here!

 

[Marco]

@MeSci, the problem with the term 'PENE' is that unfortunately it doesn't translate too well into Spanish .

A bit like the Vauxhall/Opel Nova and the Mitsubishi Pajero (you really would think they would check)

 

[Cheesus]

I do have to admit to a certain amount of information overload here!

That's what you get for being a doctor who asks questions of those starved of medical attention

 

[MeSci]

Maybe we should call our ME pain/aches the Quality Street assorted pain, being in the UK I'm sure you know what I'm talking about .

Quality Street-associated pain in some cases, Quality Street being chocolates stuffed with sugar and dairy!

 

[Marco]

It makes sense to me. It sounds a bit like my old laptop. Even if I charge it up it runs down in no time now. Maybe these are two different aspects though? Running on low AND small capacity even when 'recharged'. And this time lag thing where you pay the price a bit later, or not until you have done a certain amount, does seem interesting. I guess there are several possible explanations but I suspect there is one that fits better than the others. I do have to admit to a certain amount of information overload here!

I get the battery analogy but a computer analogy also rings true.

Mental fatigue/fatiguability can be as or even more of a problem than the physical aspect and many if not most of us have real problems with muti-tasking. It reminds me of back when the first machines started running multi-tasking operating systems like Windows and the CPU often couldn't keep up. Run a few applications simultaneously and the CPU would slow down to a crawl and would often just 'lock up'.

We had a similar conversation on another forum and one PWME stated that her husband's nickname for her was 'Windows 95'.

We may be talking mostly about physical fatigue here (to the extent that you can discriminate between the two) but I don't see why the same can't apply to sensory information.

Pity we can't just ctrl alt delete!

 

[PennyIA]

I have been keeping a little eye on my 'fatigue' today and can certainly attest to the fact that it has many different flavours. What I have learnt in the last two hours is that when trying to push through my limits to get jobs done the fatigue actually feels very much like pain.

This is strange as I have never really thought I suffer from pain much. But what I was describing to others as tiredness (for the sake of saying something they would understand) was actually exhaustion accompanied by pain. The pain feels like it is in all my joints and also pulsing down and up arms and legs etc. It is very much like achey flu pain and joint pain combined.

To be honest, is it any wonder why doctors ask us about fatigue and how it relates to things in our minds what the responses were. For you, it excluded the pain you felt. For me, it included the pain I felt... BUT I did NOT include 'other' symptoms that in my mind were not tied to the fatigue. EVEN when they occur at the same time...

For example, when I'm at the end of my rope... I have a sore throat, nausea, mild fever, foggy head and fatigue (and I don't think to add pain -because the pain is so tightly connected to fatigue in my mind, it doesn't occur to me).

As I read other replies... folks listed all of their symptoms - not just the fatigue-based, which never occurred to me. If you ask me what my fatigue feels like - it doesn't include the 'malaise' (for lack of a better word) that goes with it.

Odd, but it doesn't help us when talking with doctors to leave those things out because as this conversation has made clear - 'fatigue' is being used quite broadly to explain a whole series of physical experiences.

Another thing that I never even thought about explaining - is that my description of fatigue in this thread is when I'm at my best. Not during crashes. That's a WHOLE OTHER type of thing. And honestly, because the crashes usually involve POTS and OI symptoms... as well as other functional impairment... AND BECAUSE I go to bed and rest through the crashes... I often feel less of what I would call 'fatigue' at that point. I think my fatigue is very much tied to the fact that I'm still trying to function when I'm at my best and forcing my body to do things that it would rather I didn't do. But if I can't get disability and if I can still function (outside of the crash) at work - even if it means almost no function outside of work... I'm not sure what other options I have than to keep pushing myself until things change.

 

[Gingergrrl]

I'm not sure about PENE, as I'm not sure that the exhaustion is based in the nervous system. It might be, but maybe it's an assumption too far at present while so little is understood.

@MeSci I also have no idea if the exhaustion is based in the nervous system and for me it *always* feels cardiac and autonomic. But when I said I liked the term PENE better than PEM, it is b/c I hate the word "Malaise" which feels like a very dramatic word for someone who has just been out in the heat too long or slightly tired. I didn't make up "PENE" and I think it is from the CCC or ICC criteria?

@MeSci, the problem with the term 'PENE' is that unfortunately it doesn't translate too well into Spanish .

EEK, I didn't even think about that! I just thought of it as an abbreviation (not the word itself) and I took six years of Spanish throughout school.

We need a whole new set of terminology but that is for another thread...

 

[Sidereal]

Malaise sounds like something out of the 19th century fainting couches era, like a lady wearing a corset that's laced a bit too tightly. For me "crash" is the only word I feel adequately captures my PEM experience.

 

[Gingergrrl]

I guess there are several possible explanations but I suspect there is one that fits better than the others. I do have to admit to a certain amount of information overload here!

I realized from this thread that I don't think it is possible for someone who has not experienced ME/CFS to understand what the "Fatigue" feels like even though I am so appreciative of Prof Edwards for asking the questions and I know his searching will lead to better research and treatment. God bless you for asking.

It made me think of two analogies.

The first is my best friend who has epilepsy and has had two brain surgeries to try to stop her seizures. In the beginning (pre-surgeries) she would always get an "aura" before a seizure in which she felt a sense of both panic and deja-vu and would see and hear these two girls in her mind always having the exact same conversation. It warned her that a seizure was coming. She explained it to me in intricate detail but since I have never had an aura or a seizure, I could not truly imagine what it felt like on a personal level.

The second is a patient that I used to work with (as a social worker) who lost his leg in the war. No matter how much he explained to me what it felt like to no longer have his leg, I could not imagine what it felt like on a personal level b/c I have my legs. I could imagine on an intellectual level and provide empathy and support but there are certain things, unless you experience them, that I don't think you can truly feel.

I think the other part of the "fatigue" that causes me so much distress is when I want to do something or participate in an event so badly but my body literally cannot create the energy to stand up, walk across the room, and take a shower. Even if I have rested for days in preparation, I cannot control what my body will do. There is no amount of positive self-talk or willing your body to create energy when it can't do it.