So Cruel When It happens

[belize44]

Two days ago, I woke feeling fantastic. I got up and broke the cardinal rule of energy conservation, by doing lots of stuff. I marinated a chicken, dust mopped the bedroom, did two loads of wash, etc. Now I feel crashed and weepy. Why does this happen? I got a tantalizing glimpse of how it felt to be normal again, then it is rudely snatched away again.

I entertain all kinds of theories but it just doesn't add up how I can have such a good day then have it vanish.

 

[LINE]

Energy increases oxidative stress, oxidative stress changes cell metabolism negatively. Antioxidants reduce oxidative stress. (oxidative stress is also known as inflammation which comes from negative immune reactions which the most likely cause is infections, toxins etc.)

https://pubmed.ncbi.nlm.nih.gov/30150620/

 

[Mary]

Why does this happen? I got a tantalizing glimpse of how it felt to be normal again, then it is rudely snatched away again.

If we knew how and why this happens, I think it could be treated! I know exactly how you feel. That's how my life goes. The good days are almost the worst because they pretty much guarantee a crash - it's so hard when you feel well and have some energy to force yourself to just do a little bit and then just sit. So you can do a little bit the next day and so on.

I am constantly amazed by people who describe their day(s) - how much they're able to do and they don't think twice about it. And I really can't remember how it felt when I was able to do whatever I wanted - it's been 26 years.

@LINE - I don't think oxidative stress is the sole answer. Why do people w/ME/CFS have so much oxidative stress? Lots of people have infections and toxins but they don't have ME/CFS - exertion intolerance. We do have abnormalities, but the big question is why?

 

[ruben]

Two days ago, I woke feeling fantastic. I got and broke the cardinal rule of energy conservation, by doing lots of stuff. I marinated a chicken, dust mopped the bedroom, did two loads of wash, etc. Now I feel crashed and weepy. Why does this happen? I got a tantalizing glimpse of how it felt to be normal again, then it is rudely snatched away again.

I entertain all kinds of theories but it just doesn't add up how I can have such a good day then have it vanish.

I just don't get this as in all my years with this condition I've NEVER remotely felt normal

 

[belize44]

I just don't get this as in all my years with this condition I've NEVER remotely felt normal

I know what you mean. I have always felt sort of a 'shadow' of this illness, even when I was considered to be in good health. It always took me longer than my siblings to recover from all of the childhood illnesses, like chicken pox, measles and mumps. My most normal function was in my twenties and thirties, and I was thoroughly disabled by age 43.

 

[tyson oberle]

I just don't get this as in all my years with this condition I've NEVER remotely felt normal

same here

 

[Wayne]

I entertain all kinds of theories but it just doesn't add up how I can have such a good day then have it vanish.

I recently re-purchased an mHBOT chamber after not using one for about 4 years. I've noticed more than in the past that it helps me recover much quicker from a PEM episode. I can go into the chamber feeling utterly exhausted, and come out 2 hours later feeling pretty much back to baseline.

For me, the PEM "may" be some kind of oxygen deprivation thing. It may be different for others with PEM. Most people however, whether health or facing health challenges, generally say they feel better after a mHBOT session. -- You can rent mHBOT chambers in some areas for about $500-$600/month.

 

[cfs since 1998]

I recently re-purchased an mHBOT chamber after not using one for about 4 years. I've noticed more than in the past that it helps me recover much quicker from a PEM episode. I can go into the chamber feeling utterly exhausted, and come out 2 hours later feeling pretty much back to baseline.

For me, the PEM "may" be some kind of oxygen deprivation thing. It may be different for others with PEM. Most people however, whether health or facing health challenges, generally say they feel better after a mHBOT session. -- You can rent mHBOT chambers in some areas for about $500-$600/month.

I bet PEM is oxygen deprivation...a leading theory is tissue hypoxia on exertion due to issues with autonomic control of blood flow, probably both in large and small blood vessels.

My PEM went from minimal (I used to be able to powerwalk for 15-20 minutes) to severe when my orthostatic hypotension got much worse. I also feel like I'm not getting enough air and feel PEM-like after I eat (not lung related).

 

[linusbert]

Two days ago, I woke feeling fantastic. I got and broke the cardinal rule of energy conservation, by doing lots of stuff. I marinated a chicken, dust mopped the bedroom, did two loads of wash, etc. Now I feel crashed and weepy. Why does this happen? I got a tantalizing glimpse of how it felt to be normal again, then it is rudely snatched away again.

I entertain all kinds of theories but it just doesn't add up how I can have such a good day then have it vanish.

actually its not just bad news but i know this and this is really really depressing. feeling good for a short time, get a sniff of how live could be and then to be thrown back into hell.
but i would recommend you shift your focus away from why you did crash (you know the answer, you overdid it compared to your usual activity level) to the important question, why did you feel good that day before.
i would do mega analysing of everything you did do (or not do) the days prior, even weather and temperature changes and things you do not know yet that they are of any importance. just go through everything. and maybe you find something to have a good or even more good days!
did you eat something special or did you eat something not?
you might be onto something.

one very important thing, if you feel good, do not act out on it. stay in the same activity level you had before even if it sounds annoying, and then graaadually ramp it slowly up.

i had a good phase last year, i felt so good i thought i could try doing some stairs again. i tried, and it felt easy... i tried again a few days later, was still easy.. tried again a few days later, and then it wasnt easy anymore... and the weaker leg got weaker than it was before and i had almost 2 month until this got better.
so be careful.

 

[Wishful]

I don't think oxidative stress is the sole answer.

I agree. How much oxidative stress does a minute or so of chatting with someone cause? I could do a strenuous 40 km bike ride without PEM, but washing one window (uncommon arm usage above shoulders) would trigger full PEM. Oxidative stress, or cytokines, or some other molecules released by such activities? The easy, obvious answers--ones that fit into one or two words--have been checked and failed to be the cause.

I bet PEM is oxygen deprivation...

Again, that doesn't fit a brief chat triggering PEM while other cognitive tasks didn't. Also, that hypothesis means that various techniques for increasing blood flow or oxygenation should be effective treatments for most PWME, yet it fails that test. Also, for me, activities that result in deep breathing and major heart pumping don't seem to affect my ME symptoms.

this is really really depressing. feeling good for a short time, get a sniff of how live could be and then to be thrown back into hell.

That's the wrong perspective. Instead, we should appreciate those times as proving that ME isn't irreversible damage. It proves that we can feel better (and switch to that state quickly, rather than slow recovery); we just have to find the right chemical or technique to do it reliably, and hopefully permanently. I still believe that it's possible that with the right molecule, we can take one pill and switch back to full non-ME state within an hour. Okay, maybe it will take some supplemental cofactors and avoidance of certain foods to make that special molecule do its job, but those temporary remissions prove that it is possible to switch ME off.

Slightly better days are easier to achieve--and maintain. I've had periods where I've felt significantly worse for weeks or longer, but then figured out what food was responsible, and avoiding that returned me to baseline again. I do think that many PWME are suffering more than necessary because they continue to consume bread or coffee or some other food that they don't realize is worsening their symptoms. These foods change over time, so what was safe at one time may not remain safe, so if you start feeling worse, it may be time to retest the foods you believe are safe for you.

Does anyone have ideas for better ways of handling those days when we do feel a bit better? Instead of overdoing something, maybe accept that it's a temporary "good day" and have a little celebration for yourself? Keep some guilty pleasures on hand for that special occasion? Have some non-PEM-triggering activities planned for, the kind that you can't enjoy properly when suffering your baseline symptoms?

 

[cfs since 1998]

Again, that doesn't fit a brief chat triggering PEM while other cognitive tasks didn't. Also, that hypothesis means that various techniques for increasing blood flow or oxygenation should be effective treatments for most PWME, yet it fails that test. Also, for me, activities that result in deep breathing and major heart pumping don't seem to affect my ME symptoms.

You are misinterpreting what I wrote. PEM is not the only ME symptom. Therefore, increased blood flow and oxygenation would only reduce PEM, not all symptoms.

 

[belize44]

same here

Did you feel normal before you became ill, or was that never possible?

 

[belize44]

@LINE - I don't think oxidative stress is the sole answer. Why do people w/ME/CFS have so much oxidative stress? Lots of people have infections and toxins but they don't have ME/CFS - exertion intolerance. We do have abnormalities, but the big question is why?

Yes. That is the big question.

 

[belize44]

but i would recommend you shift your focus away from why you did crash (you know the answer, you overdid it compared to your usual activity level) to the important question, why did you feel good that day before.
i would do mega analysing of everything you did do (or not do) the days prior, even weather and temperature changes and things you do not know yet that they are of any importance. just go through everything. and maybe you find something to have a good or even more good days!
did you eat something special or did you eat something not?
you might be onto something.

Looking back, the things that I did differently don't quite add up. I am sure many of us have done a course of Prednisone, with either good results in terms of energy and mood, or its opposite. At this point, I was on the last week and had tapered down to just 10 mg per day. Normally the upsurge in feeling better, happens on about the second or third day of treatment. I had also consumed gluten, which should have caused an increase in inflammation ( but darn, those apple fritters were good!) And finally, I had a Reiki session which I was highly skeptical of, but was helping a friend who hopes to set up a business doing these sessions. Each thing by itself is unremarkable, and yet all of these things were in place when I had my good day. I will be analyzing this more, but I think that this is a good approach.

 

[Wishful]

Therefore, increased blood flow and oxygenation would only reduce PEM, not all symptoms.

I've done strenuous activities while having PEM, and it didn't noticeably affect the PEM symptoms, so I remain unconvinced by that hypothesis.

As far as some people benefiting from various oxygen of blood flow enhancers, it's not necessarily due to increasing oxygen delivery to muscle cells. It could, for example, affect microbiome activity, maybe in the gut or maybe in the mouth or nose. It could alter some organ in the body. I'm just not seeing strong evidence of oxygen deprivation being involved in ME, and too much evidence of oxygen deprivation treatments not having the effect expected by that hypothesis.

 

[Wishful]

Normally the upsurge in feeling better, happens on about the second or third day of treatment.

Just an upsurge, rather than a switch to full non-ME? For me, I was on the fifth day of prednisone, convinced that it was another failure. Then the next morning I awoke fully non-ME. I forget which day it switched on again. The second prescription switched my ME off on the third morning. A third prescription had no effect, as did a fourth trial a year or so later at double the dosage. Prednisone obviously doesn't work the same way for everyone. It might not even work by the same mechanism in everyone. My guess is that it's an indirect effect, working on some part of the ME configuration that applies in only a subset of PWME.

 

[cfs since 1998]

I've done strenuous activities while having PEM, and it didn't noticeably affect the PEM symptoms, so I remain unconvinced by that hypothesis.

I'm just not seeing strong evidence of oxygen deprivation being involved in ME, and too much evidence of oxygen deprivation treatments not having the effect expected by that hypothesis.

The hypothesis has not been properly tested, so absence of evidence is not evidence that it is incorrect. There is also no established treatment for the type of tissue hypoxia seen in ME/CFS, so I don't know what treatments you're talking about.

 

[cfs since 1998]

Just an upsurge, rather than a switch to full non-ME? For me, I was on the fifth day of prednisone, convinced that it was another failure. Then the next morning I awoke fully non-ME. I forget which day it switched on again. The second prescription switched my ME off on the third morning. A third prescription had no effect, as did a fourth trial a year or so later at double the dosage. Prednisone obviously doesn't work the same way for everyone. It might not even work by the same mechanism in everyone. My guess is that it's an indirect effect, working on some part of the ME configuration that applies in only a subset of PWME.

Symptom relief is not equivalent to a disease reversal. You can't turn a chronic illness on and off like a switch. Your hypothesis has no scientific basis.

 

[Wishful]

The hypothesis has not been properly tested, so absence of evidence is not evidence that it is incorrect.

I didn't state that it was incorrect, just that I remain unconvinced by the available evidence. Decisions are made on plenty of hypotheses without 100.000% evidence.

There is also no established treatment for the type of tissue hypoxia seen in ME/CFS,

Formally established, no. Theoretically strongly supported, probably. I'm no expert in the subject, but surely there are plenty of techniques for increasing oxygenation or the blood or tissue in general.

You can't turn a chronic illness on and off like a switch.

I don't see why not. If a chronic disease is due to a certain biological pathway not working properly, and adding a chemical can correct that, I see no reason why the results can't be dramatic and immediate. My ME certainly appears to switch on and off rapidly. I had a neighbour who switched overnight from a long period of abnormal anger back to mild-mannered overnight after one selenium supplement tablet. Some chronic diseases may involve structural or cellular damage that take significant time to reverse, but that doesn't mean that all chronic disease must be of that form.

 

[belize44]

Just an upsurge, rather than a switch to full non-ME? For me, I was on the fifth day of prednisone, convinced that it was another failure. Then the next morning I awoke fully non-ME. I forget which day it switched on again. The second prescription switched my ME off on the third morning. A third prescription had no effect, as did a fourth trial a year or so later at double the dosage. Prednisone obviously doesn't work the same way for everyone. It might not even work by the same mechanism in everyone. My guess is that it's an indirect effect, working on some part of the ME configuration that applies in only a subset of PWME.

Interesting! What I found different this time was that as I tapered off I began to feel as if the ME had switched off, too. But now, down to the last week at 5 mg, I am fully back in PEM with increasing pain levels.