Paradox: pacing is making me worse, not pacing gives me PEM...

[borko2100]

I've mentioned before that pacing doesn't help me, nevertheless I decided to try it again. Basically I tried to limit my activities and not leave the house for a few weeks. And like before it didn't help. On the contrary it made me worse. Every day I spent more and more time in bed (up to a point half the day) symptoms didn't improve, even new ones popped up.

Then I stopped the experiment and forced myself to go out for a long walk, got some adrenaline flowing, came back, didn't need to lay down. Then the next day still felt more energetic than usual and didn't spend much time in bed.

Now here comes the paradox. On the one hand, those walks give me energy during and for some time after. On the other hand when I come back I get PEM from them -
headache, muscle twitches, burning eyes, sore throat, inflammation, etc. The funny thing is, despite feeling pretty horrible due those symptoms, I feel much more energetic compared to when I was pacing.

So I am stuck in a very strange situation. Either I pace and have to spend half the day in bed or I am active, spend little time in bed, but suffer from PEM. Unfortunately both options are bad.

It's really strange, I thought before maybe it's mold, but this happened in my old house too. Another possibility, maybe it's not CFS, yet I get all the typical CFS symptoms and classical PEM (from cognitive or physical tasks). So at this point I really have no clue. What a perplexing illness.

 

[hapl808]

I get some of these results, and I've also wondered about mold. No idea if there's a connection, but the more strictly I pace, the lower my threshold seems to become. But the less strictly I pace, the worse my daily crashes become.

 

[wabi-sabi]

Is there some middle ground between staying home for weeks and long walks? Maybe avoiding these extremes would work better for you.

 

[BrightCandle]

I am definitely improved if I do some activity and the more I can withstand the better and it seems to be a virtuous loop. However if I crash I am properly in trouble for months afterwards (still suffering!). I don't think getting benefits from exercise are uncommon in ME patients, if I am still all the time my body really hurts after a while, but we also have to avoid crashing and it feels sometimes like the activity we need is 130% of the 100% of energy we have before we PEM.

 

[Gijs]

I think by staying active you live on adrenaline. When the adrenalin energy is depleted, you collapse. It's some kind of fake energy. By being active you suppress your immune system and when you stop you activate your immune system again with all the associated complaints.

 

[borko2100]

Is there some middle ground between staying home for weeks and long walks? Maybe avoiding these extremes would work better for you.

That's what I usually do. It's not perfect but it's my only option.

I think by staying active you live on adrenaline. When the adrenalin energy is depleted, you collapse. It's some kind of fake energy. By being active you suppress your immune system and when you stop you activate your immune system again with all the associated complaints.

Good that you mentioned the immune system, I wanted to touch on it in my post, but forgot.

Namely, what I am experiencing could be indicative of autoimmune disease, here's why:

Firstly, the hormones released during outdoor activities, such as adrenaline and cortisol suppress the immune system, thus possibility reducing the amount of damage the immune system does to whatever it is targeting. Secondly, I've read some papers that say that physical activity could decrease autoimmunity on its own, by shifting the th1/th2 balance and other means. There's also papers that show that people with autoimmune diseases like RA or MS do better if they are active rather than sedentary.

So maybe, at least in my case, it is autoimmune after all? There's several current researchers who believe autoimmunity is indeed to blame, so who knows.

 

[bensmith]

I’ e suspected i’m the same, which is why its so good i’m not bed bound now. Have to try and live in the middle.

 

[Hufsamor]

I’m the same.

 

[CSMLSM]

I've mentioned before that pacing doesn't help me, nevertheless I decided to try it again. Basically I tried to limit my activities and not leave the house for a few weeks. And like before it didn't help. On the contrary it made me worse. Every day I spent more and more time in bed (up to a point half the day) symptoms didn't improve, even new ones popped up.

Then I stopped the experiment and forced myself to go out for a long walk, got some adrenaline flowing, came back, didn't need to lay down. Then the next day still felt more energetic than usual and didn't spend much time in bed.

Now here comes the paradox. On the one hand, those walks give me energy during and for some time after. On the other hand when I come back I get PEM from them -
headache, muscle twitches, burning eyes, sore throat, inflammation, etc. The funny thing is, despite feeling pretty horrible due those symptoms, I feel much more energetic compared to when I was pacing.

So I am stuck in a very strange situation. Either I pace and have to spend half the day in bed or I am active, spend little time in bed, but suffer from PEM. Unfortunately both options are bad.

It's really strange, I thought before maybe it's mold, but this happened in my old house too. Another possibility, maybe it's not CFS, yet I get all the typical CFS symptoms and classical PEM (from cognitive or physical tasks). So at this point I really have no clue. What a perplexing illness.

Maybe you are at a crossroads of adrenal sufficiency and adrenal fatigue.
Your adrenals when not actively stimulated by activity (pacing) has a lower output than normal of cortisol and other hormones produced than it should. This would make your glucocorticoid receptors more sensitive to cortisol.
Then when your actively stimulating your HPA axis with activity your adrenals output a more appropriate level of hormones and you feel better because of the more sensitive receptors. This also lowers there sensitivity through this extra activation. Then as the sensitivity of the glucocorticoid receptors lowers you begin to also produce less cortisol and hormones of the adrenals because you have been taxing them and thus a PEM crash.
I would suggest taking a look at the posts on this thread that I made for more information
Confusion about therapy related to norepinephrine | Phoenix Rising ME/CFS Forums

From my experience I would say you are at the beginning of Adrenal Fatigue and if you push yourself too much will only make this situation worse.

 

[CSMLSM]

I think by staying active you live on adrenaline. When the adrenalin energy is depleted, you collapse. It's some kind of fake energy. By being active you suppress your immune system and when you stop you activate your immune system again with all the associated complaints.

I agree! Spot on!

 

[CSMLSM]

That's what I usually do. It's not perfect but it's my only option.



Good that you mentioned the immune system, I wanted to touch on it in my post, but forgot.

Namely, what I am experiencing could be indicative of autoimmune disease, here's why:

Firstly, the hormones released during outdoor activities, such as adrenaline and cortisol suppress the immune system, thus possibility reducing the amount of damage the immune system does to whatever it is targeting. Secondly, I've read some papers that say that physical activity could decrease autoimmunity on its own, by shifting the th1/th2 balance and other means. There's also papers that show that people with autoimmune diseases like RA or MS do better if they are active rather than sedentary.

So maybe, at least in my case, it is autoimmune after all? There's several current researchers who believe autoimmunity is indeed to blame, so who knows.

The same immune issues for autoimmune are involved in ME/CFS, B cell dysfunction. It also is a cause of cancer. EBV is thought to cause all three.
ME/CFS patients are at higher risk of autoimmune diseases and cancer I believe.

Yes the immune system is suppressed. I believe that is why most of us kind of have the same personality type before getting ill. We never stop and are super involved in things living off of adrenalin and cortisol. The immune issues from an initial infection of some kind (such as EBV) causes it and we become that personality type because it feels better. But we cannot live on stress forever as this is a damaging metabolic state. We keep pushing and pushing trying to stay feeling alive and full of energy and we suppress our immune system so much and tax our adrenals so much we just snap one day biologically and we develope ME/CFS. This may simply have been started by a simple infection many years or decades ago.

I talk from the perspective of having ME/CFS to some degree for nearly approx 40 years (all my life) and have after going through all stages of what I speak recovered to almost completely normal now and now do not have the personality type I spoke of originally. I am less stressed overall by light years and do not obsess or focus on tasks like I once did. I do not need to pace and do not get PEM anymore. I believe I have even had the arophy stage of adrenal fatigue which took many years to overcome and recover from before I could fully recover now from ME/CFS.
If you want to know more on how, here is a thread I recently added some information to to help share this treatment with the wider ME/CFS community and research community maybe you will find it useful
Epstein-Barr virus behind the development of autoimmune diseases, cancer, ME/CFS and Long COVID | Phoenix Rising ME/CFS Forums

 

[CSMLSM]

I am definitely improved if I do some activity and the more I can withstand the better and it seems to be a virtuous loop. However if I crash I am properly in trouble for months afterwards (still suffering!). I don't think getting benefits from exercise are uncommon in ME patients, if I am still all the time my body really hurts after a while, but we also have to avoid crashing and it feels sometimes like the activity we need is 130% of the 100% of energy we have before we PEM.

This is to overcome the adrenal fatigue, having to drive the production of cortisol ect through over exertion.

 

[CSMLSM]

That's what I usually do. It's not perfect but it's my only option.



Good that you mentioned the immune system, I wanted to touch on it in my post, but forgot.

Namely, what I am experiencing could be indicative of autoimmune disease, here's why:

Firstly, the hormones released during outdoor activities, such as adrenaline and cortisol suppress the immune system, thus possibility reducing the amount of damage the immune system does to whatever it is targeting. Secondly, I've read some papers that say that physical activity could decrease autoimmunity on its own, by shifting the th1/th2 balance and other means. There's also papers that show that people with autoimmune diseases like RA or MS do better if they are active rather than sedentary.

So maybe, at least in my case, it is autoimmune after all? There's several current researchers who believe autoimmunity is indeed to blame, so who knows.

Cortisol is immune suppressive like glucocorticoids medicines used for immune suppression for autoimmune diseases. This suppresses vital immune responses too much when constantly exposed to these substances. It should not be happening other than in a flight or fight response which is what is neccessary in an acute situation and is extremely damaging to almost constantly be in. This only gets worse as you keep pushing and pushing.
I use immune modulation not suppression with HPA axis dampening to recover.

 

[borko2100]

I talk from the perspective of having ME/CFS to some degree for nearly approx 40 years (all my life) and have after going through all stages of what I speak recovered to almost completely normal now and now do not have the personality type I spoke of originally. I am less stressed overall by light years and do not obsess or focus on tasks like I once did. I do not need to pace and do not get PEM anymore. I believe I have even had the arophy stage of adrenal fatigue which took many years to overcome and recover from before I could fully recover now from ME/CFS.
If you want to know more on how, here is a thread I recently added some information to to help share this treatment with the wider ME/CFS community and research community maybe you will find it useful
Epstein-Barr virus behind the development of autoimmune diseases, cancer, ME/CFS and Long COVID | Phoenix Rising ME/CFS Forums

So you've recovered after 40 years of illness, that's quite extraordinary! So are you saying that EBV was the cause of your illness? I haven't done much research on EBV, but I agree it could well be the at the root of the illness, at least for some people if not everyone.

 

[Wishful]

Every day I spent more and more time in bed (up to a point half the day)

I find that laying in bed when it's not time for sleep will generally make me feel worse. Does sitting or light activity around the house make you feel as bad as laying in bed? As others have said, it's probably better to find the optimum point between no activity and too much activity.

 

[borko2100]

I find that laying in bed when it's not time for sleep will generally make me feel worse. Does sitting or light activity around the house make you feel as bad as laying in bed? As others have said, it's probably better to find the optimum point between no activity and too much activity.

I wish I could do that, unfortunately when my CFS is bad the urge to lay down is overwhelming.

How it usually goes is like this: afternoon - sudden worsening and sleepiness, then i take a nap for 1 to 2h, wake up feeling horrible, sit on the pc or do some minor activities in the house for a few hours, then I get an overwhelming urge to lay down (but not sleep). Then I lay down and sporadically I'd get up for 15-30 mins, then I'd be forced to lay down again and this repeats several times until bedtime. If I do the math sometimes half of my waking time is spent in bed (~ 7h).

When my CFS was better (> 5y) ago, I didn't need to lay down or nap during the day at all, I just felt this constant state of low energy. Then after a sudden worsening I started getting that dreadful afternoon crash, needing to nap 1-2h every day. Then another sudden worsening (~ 2y ago) and the nap was no longer enough, thus the current situation.

About finding balance, yes I agree. I know if I overdo it I run the risk of worsening. I remember a period not long ago when I was forced to be active daily. During that time, like now, I had more energy, but more PEM also, and after some time I started to develop all kinds of new symptoms. To name a few, I developed neck and eye twitches, strange burning pain on my leg, overactive bladder, etc. All those I was suffering from every day. Eventually after 6 months or so they went away.

This brings me to something a bit off topic, namely those fluctuating symptoms I get. Besides those I mentioned above, I've had many others that have come, stayed for months and then went away on their own. Which sounds a lot like temporary neuronal damage, possibly MS? I've had a few MRI's that ruled it out but that was some time ago, I need to get more recent ones. Then again, I've heard of others with CFS experiencing fluctuating symptoms like this too, so who knows.

 

[vision blue]

I think by staying active you live on adrenaline. When the adrenalin energy is depleted, you collapse. It's some kind of fake energy. By being active you suppress your immune system and when you stop you activate your immune system again with all the associated complaints.

Agree with this completely. Was saying in another tread i seem to have two states- not enough norepinephrine or too much , the latter being fake energy since i cwn no longer generate it in the right way and then the former is when the stores are depleted

@borko2100 what you say on autoimmunity is something has been said on cancer. With cancer, alot of body resources are diverted to feeding cancer cells andcpeople feel tired and rest. But the restingb makes ot easy fir the cancer cells to use those resources whereas with activity ykyre forcing some bqck to your own maintenance. I dont know if ots true or mot or if there have been any studies on it.

I try to push aroubd t2 and t1 dependingbon symptoms im having and otger times with particularly bad cluster of symptoms try to divert my immune system to work on something less annoying

Sometimes if i accidentally get a butn or a cut i will get q gush of adreniline and almost feel normal- again that fake energy that eventually will deplete and give a bad crash. It has tho made me wonder about peoppe who intentionally cut because of mental health issues. One wonders if they've discovered that a rush of adrenaline can perhaps overshadow whatever crap suffering they are in and make them feel temporarily normal.

I also get the fluctuating symptoms as you describe. When i used to more vigilant about going to specialists before realizing it dod no good i woukd comically be out pf synch. By time i madecappt, got appt, did testing , i was already ontona different catastrophic failure. At times really was comical- gut imagingg but by then during test heart going berserk (-tech not caring...) and during heart trsting, liver decided to give pain.

I also get the have to lie doen thing tho when im really bad i still feel like i need to lie down even after doing so. In earliest days of illness Id be at work and suddenly know had to lie down NOW. Id shut door and lie on the bare floor. Had no idea what was happening.

 

[borko2100]

Agree with this completely. Was saying in another tread i seem to have two states- not enough norepinephrine or too much , the latter being fake energy since i cwn no longer generate it in the right way and then the former is when the stores are depleted

Yes, in a way it is basically fake energy from adrenaline, cortisol, etc. But I do feel that there is more to it, in my case at least. I say that because, like I said if I don't get this fake energy for a long time (by pacing) I get worse. Furthermore I've noticed a moderate increase in energy on the following day(s) after an activity, despite the PEM that comes after it.

And I agree on your other point about too much or not enough norepinephrine. When I get that fake energy, falling asleep that same day is extremely difficult, sometimes I'd go to bed 5 or 6 hours after my usual bed time. This being another reason why being active every day is not sustainable for me.

 

[borko2100]

I also get the have to lie doen thing tho when im really bad i still feel like i need to lie down even after doing so. In earliest days of illness Id be at work and suddenly know had to lie down NOW. Id shut door and lie on the bare floor. Had no idea what was happening.

I can also report nearly the same thing. Namely, i'd be on the computer in the library, then I'd get that sudden urge to lay down and obviously there not being anywhere to do that, I'd just rest my head on the desk for 15 minutes or so and then force myself to keep working again. If I was in a private space, I'd probably do the same thing that you did.

Seems like there's a lot of similarities in our illness.

 

[wabi-sabi]

The MASS ME/CFS association has a class on pacing. That might be helpful.

Info here: http://www.cfsselfhelp.org/pacing-tutorial