Fatigue: late night or early morning type?

[aimossy]

@A.B. I am exactly what you descibe with the fluctuations and also after meals. You explain all that very well.

 

[MeSci]

Yes, I so miss the luxury of feeling sleepy and tired! I lost that abruptly Easter 1982 when this illness suddenly hit me for six. It is tortuous feeling profoundly, bone-achingly sick-exhausted and not be able to escape into sleep. The exhaustion for me also seems to especially affect the heart as it becomes so slow as the power supply fails. It feels as though it doesn't have the energy to keep beating. The only way I find to gain some relief is to lie mostly on my front supported by my right shoulder. Horrid feeling!

A lot of differences are becoming apparent in our reported experiences. Sleepy/not sleepy. Bradycardia/tachycardia. The latter, or at least approaching the latter is common for me. I only get a slow-feeling pulse when I wake up feeling relaxed and well after a good night's sleep AFAIK.

Mostly my heart rate is quite normal-to-slightly-fast nowadays.

Confounding factors could be medication and supplements.

 

[Indigophoton]

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!

For what it's worth, and at risk of adding to your information overload, I had a blood test done that purported to look at how well ATP was being produced and managed at a cellular level. The test apparently shows exactly this kind of very slow to charge, only ever partially charging, rapidly discharging battery behaviour in the ATP profile.

It looks like this -

The annotations are by Dr McLaren Howard.

The several days delay in recharging that occurs from too much exertion was explained to me (not by Dr McL H) as being due to the time taken to make new ATP from scratch, if one had pushed the reaction from ATP through ADP to AMP.

These results are from 2008, when I was fairly severe, but able to leave the house once a week for an hour or so, still able to take regular showers, and manage basic ADL, but generally otherwise very limited. Presumably the figures would be worse now, if they accord with severity, as at least one preliminary paper suggested; I don't know that there have been any rigorous studies done though.

Since ATP is critical in terms of basic cellular energy, this model of our dodgy batteries might seem to make sense?

 

[gregh286]

hi indi,
did you follow any protocol based on your ATP scores, magnesium transdermals, etc?

 

[Gingergrrl]

@Indigophoton I have been trying to find a test like this (to measure ATP) but every test I find really seems to measure something different. Where did you have this done and was it useful as far as were any treatments recommended?

 

[jimells]

It sounds a bit like my old laptop. Even if I charge it up it runs down in no time now.

I have several old laptops around here with the same problem, and I think it exactly describes what I experience.

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

Hahahaha! If you dare to have any more questions about our symptoms, I'm sure we will be more than willing to tell you all about them. For so many of us, no doctor has ever expressed any real interest in how we experience this illness.

 

[OverTheHills]

I feel the same way. I sleep well, tell someone, who says "that's good" and if I'm up to it I'll say "not really." It's kind of a bad sign, tells me something is up, I tend to sleep more when I'm feeling more "sick", meaning flu-like.

Me too. An unusually good sleep is often my first warning sign for PEM.
OTH

 

[MeSci]

Did you ever try bending over and resting your elbows on the bathroom cabinet while holding the hair dryer?

Incidentally, right after posting about raising our arms, I stretched way up to open an window and immediately felt faint!

Sushi

The arm-raising difficulty was one of my early symptoms, and it was bad for years. Really frustrating when trying to browse a high clothing rail in a charity shop!

But it is much better recently. I still get it a bit sometimes.

 

[Indigophoton]

hi indi,
did you follow any protocol based on your ATP scores, magnesium transdermals, etc?

Hi greg, I didn't follow a protocol as such, but took up the recommendation I was given to take D-ribose, Magnesium, CoQ10 and L-Carnitine to help with ATP production.

 

[Indigophoton]

@Indigophoton I have been trying to find a test like this (to measure ATP) but every test I find really seems to measure something different. Where did you have this done and was it useful as far as were any treatments recommended?

Hi Gingergrrl, the testing was done at Acumen Lab, I will PM you some details.

The only suggested 'treatment' was some supplements, as mentioned in my post above. These did, and do, help, especially the D-ribose and magnesium. The D-ribose gets rid of the extraordinarily drained feeling that the flat battery type of fatigue can bring, and shortens/reduces PEM effects. For mild overshoots of activity it prevents PEM altogether (but I take huge amounts, much more than the "RDA"). (Just to note, I'm not advocating it as a way of beating one's limits, but sometimes for the very sick just surviving means overdoing it.)

At the time I found the test useful just because it provided the first objective data showing something was genuinely actually physically wrong, after many years.

 

[MeSci]

Hi Gingergrrl, the testing was done at Acumen Lab, I will PM you some details.

The only suggested 'treatment' was some supplements, as mentioned in my post above. These did, and do, help, especially the D-ribose and magnesium. The D-ribose gets rid of the extraordinarily drained feeling that the flat battery type of fatigue can bring, and shortens/reduces PEM effects. For mild overshoots of activity it prevents PEM altogether (but I take huge amounts, much more than the "RDA"). (Just to note, I'm not advocating it as a way of beating one's limits, but sometimes for the very sick just surviving means overdoing it.)

At the time I found the test useful just because it provided the first objective data showing something was genuinely actually physically wrong, after many years.

Caution - d-ribose can have very nasty effects on some people (e.g. me).

 

[Bob]

Pity we can't just ctrl alt delete!

or turn ourselves off and on again!

There is actually a way to reboot the immune system (used with success for cancers such as leukaemia and lymphoma) that I'd like to see tested on ME patients. Unfortunately it's such an invasive, complex and dangerous procedure that it will probably never be tested on ME patients unless they have leukaemia and lymphoma. I forget the exact details of the procedure, but it involves destroying the bone marrow and then re-seeding with stem cells. If my memory serves me well then this has an effect of rebooting the immune system.

 

[MeSci]

There is actually a way to reboot the immune system (used with success for cancers such as leukaemia and lymphoma) that I'd like to see tested on ME patients. Unfortunately it's such an invasive, complex and dangerous procedure that it will probably never be tested on ME patients unless they have leukaemia and lymphoma. I forget the exact details of the procedure, but it involves destroying the bone marrow and then re-seeding with stem cells. If my memory serves me well then this has an effect of rebooting the immune system.

I guess in a way Rituximab turns the immune system off and lets it turn itself on again.

 

[Marco]

There is actually a way to reboot the immune system (used with success for cancers such as leukaemia and lymphoma) that I'd like to see tested on ME patients. Unfortunately it's such an invasive, complex and dangerous procedure that it will probably never be tested on ME patients unless they have leukaemia and lymphoma. I forget the exact details of the procedure, but it involves destroying the bone marrow and then re-seeding with stem cells. If my memory serves me well then this has an effect of rebooting the immune system.

Indeed. My friend has been through it twice for NH lymphoma - hopefully successfully this time!

 

[golden]

There is actually a way to reboot the immune system (used with success for cancers such as leukaemia and lymphoma) that I'd like to see tested on ME patients. Unfortunately it's such an invasive, complex and dangerous procedure that it will probably never be tested on ME patients unless they have leukaemia and lymphoma. I forget the exact details of the procedure, but it involves destroying the bone marrow and then re-seeding with stem cells. If my memory serves me well then this has an effect of rebooting the immun
e system.

Fasting reboots the immune system:

http://www.disabled-world.com/fitness/diets/fasting.php

 

[Bob]

Another little thought. So maybe [it] is wrong to say all fatigue is the same?

This first paragraph relates to my experience of hypothyroidism, not ME...
I experienced a simple (i.e. an uncomplicated and straightforward) fatigue when my thyroid levels were slightly low, and it felt like fatigue as a healthy person would understand the term. i.e. a physical tiredness that caused underperformance, such as you would experience after a long day or a heavy exercise session. It consisted of a persistent low level of energy that was mildly incapacitating, and slightly frustrating. It was a bit bewildering at times, as I hadn't been diagnosed, but it was mild and not complicated by other symptoms so it was not too distressing. (Although, I'm sure that it would have become much more complex had my thyroid levels worsened.) When I pushed against the thyroid-related fatigue (i.e. when walking uphill) the severity of the fatigue worsened immediately, and was unpleasant but, unlike with ME, I swiftly returned to my baseline level of mild fatigue after resting, and the symptom that I experienced was clearly a case of straightforward fatigue.

Now to my experience of ME...
The thing about my own experience of ME, is that 'fatigue' has never been a word that I've used to describe my symptoms, and is not my main complaint. I've always felt as if I primarily have generalized symptoms of an infection, with exhaustion being an incapacitating component of the illness. When I first got ill I complained of feeling like I had flu. It really is difficult to describe the symptoms exactly, and it's more complex than simple fatigue. It feels as if all the cells in my body and brain are grinding to a halt in a hard-to-define discomfort and disharmony. My whole body feels a deep uneasy pervasive discomfort. So, I suppose this is somewhat like being forced out of bed in the middle of the night, but it's not an adequate comparison.

I think that many of us feel that 'fatigue' is unhelpful for researchers to focus on because it's a description that has limited relevance to our illness. 'Cellular exhaustion' seems like a better description: and this applies to both physical and mental function. But also the immune-related symptoms, cognitive symptoms, and/or autonomic dysfunction can be just as prominent or troublesome for many of us.

Another way I would describe it is to say that all the individual cells in my body feel nauseated.

This comment is lost at the end of your post, willow, so I'm just highlighting it.
'Nausea' isn't quite the right word to describe ME, but I like the description of every cell in your body feeling wrong.

 

[jimells]

So one hypothesis I have is that the brainstem may be infected and thus inflamed as a result of the vagus nerve constantly carrying viruses into the brainstem. Certainly I can myself feel a dull inflammatory sensation behind the nape of my neck, which is where the brainstem is located

Wow, this is really interesting. For me, the most striking symptom of PEM is a migraine attack. This includes extreme sensitivity to light and sound. I definitely think of this as the "sensitivity knob" is turned up way too high. And one more thing: neck pain in the nape of the neck that tapers off when the migraine pain tapers off.

 

[Bob]

This has been a fascinating thread to read. It's amazing how one short and simple question gets such an interesting, complex and multi-faceted response. And it's notable how that very simple, but medically essential, question (i.e. to describe your subjective experience of illness) is so rarely asked of us. It's interesting that many of us have very similar experiences, but often with subtle or distinct differences in symptoms. I agree with many of the opinions that have been expressed in this thread.

 

[CFS_for_19_years]

My illness began with a very bad flu and hypersomnia. I would sleep 10 to 12 hours a night, then get up around 9 a.m. for breakfast, then go back to sleep for several hours. That post-breakfast nap was 3 hours at first, then as time progressed, the nap went down to 2 hours, then 1 hour. That was the only clue that I was getting better. It took me months to return to part-time work, but I never fully recovered.

Now I've got the tired and wired feeling in the evening where I can't fall asleep unless I take a lot of stuff like meds and melatonin. A nap would be impossible - there's no way I could fall asleep during the day.

After being sick for about 15 years, a specialist suggested I do a sleep study and found that I had severe sleep apnea, so I got the CPAP machine, and later got Bi-PAP. Treating the sleep apnea doesn't make a dent in my fatigue or energy levels, not one bit. It's not that I'm fatigued by anything, it's just that my body won't make the energy for me to function like a normal healthy person. I persist in using the Bi-PAP to keep blood pressure under control and lower the risk for stroke.

 

[Sasha]

@Jonathan Edwards - are you going to this day-conference at Newcastle (well, Gosforth)?:

http://www.meassociation.org.uk/2014/10/21359/

There's a session or two on fatigue in ME - wondered if you might have some interesting discussions there!