Why do I feel worse after resting?

[Artemisia]

For the past year or two, I've had scheduled rest periods where I lie down for an hour. Sometimes I rest before working in the morning, sometimes it'll be early afternoon. While resting, I start to feel MUCH worse. It's like the PEM "catches" up to me and I feel a full-on crash.

But I force myself to get up to try and work at my computer. After a half hour or so, the PEM subsides and I can function enough to work. (The same happens even when I have multiple rest periods a day, or at different times.)

What's behind this? Am I just running on stress hormones constantly, like cortisol and adrenaline? And the rest periods allow them to subside, so I experience the full effects of PEM? And when I get up to work again, I'm once more fueled by stress hormones to "suppress" the PEM?

This is especially worrying because I have to work to support myself. I have no one to help me physically or financially, no employer or government support (I live in the US, and don't even have health insurance). I fear this cycle will eventually nudge me into severe ME to where I can no longer work at all. This is so scary but I don't know what else to do.

Background info: I'm moderate ME/CFS, toward the milder end of moderate. I work from home online. I'm about 80% homebound. I've had ME/CFS 13 years and am a 43 year old woman. I constantly have to push myself to work enough to pay bills, go to the grocery store 2-3 times a month, and prepare very simple food (meals are often milk and fruit because I have no energy for more). I'm overweight and have typical high cortisol midsection weight gain that started when I first got sick, despite eating only whole foods and experimenting with all sorts of thyroid and endocrine protocols. I do take a low dose of thyroid (NDT) and I need more, but I have trouble tolerating it.

 

[linusbert]

What's behind this? Am I just running on stress hormones constantly, like cortisol and adrenaline? And the rest periods allow them to subside, so I experience the full effects of PEM? And when I get up to work again, I'm once more fueled by stress hormones to "suppress" the PEM?

if it were the stress hormones you could take cortisol for example hydrocortisol. if you get better you might confirm your suspicion.


i dont know if PEM works the way you describe it, on and off depending on what you do. not denying the phaenomena you describe, but it could be something different.
when i am not in crashed state i have something similiar like you describe, stressful situations i sometimes can overcome when i am stressed... but if i do the same while not stressed it crashes me. surely is some kind of cortisol mechanism.

what i could imagine is that your cortisol in general might be too low and body action gets it up a little.
are you sure your weight gain is from too much cortisol? midsection gain could also be hormonal or other things like insulin resistence.. very typical for high cortisol weight gain is a moon face and steer like neck.
too high cortisol usually also comes accompanied with high blood pressure, high sodium blood and low potassium.

from your symptoms i would guess more in the direction of adrenal exhaustion, maybe due to chronic stress or some other physiological reason.
thyroid and adrenals are somewhat tight together. i read somewhere that it might be necessary to take cortisol with thyroid hormones. and sometimes its not the thyroid but the adrenals... and pushing thyroid can somewhat help by overdriving the adrenals even more which helps in short term but long term it will not.

 

[Artemisia]

when i am not in crashed state i have something similiar like you describe, stressful situations i sometimes can overcome when i am stressed... but if i do the same while not stressed it crashes me. surely is some kind of cortisol mechanism.

For example if I'm at home and I do some exertion it makes me crash. If I do the same exertion in public I don't crash right then--only when I get home. So I do have PEM, or something that certainly incapacitates me to where I need to lie down for hours, but sometimes it seems to come and go based on external stress and demands.

are you sure your weight gain is from too much cortisol? midsection gain could also be hormonal or other things like insulin resistence.. very typical for high cortisol weight gain is a moon face and steer like neck.

It's been years since I tested cortisol. But I did test it several times because I was convinced I had high cortisol in 2014, maybe even Cushing's, since I do put on weight in face, neck, upper back and especially belly and breasts. But my cortisol was always in range. I had the idea that cortisol labs were inaccurate but now I don't have the energy to test at all.

Thanks for your response.

 

[Mimicry]

My guess is that the adrenaline and focusing on something else prevents you from noticing the symptoms. At least that's what happens with me, at least when the PEM is not too bad. I get terrible neuropathic pain in my hands and feet and a lactic acid burning all over my body during PEM and unfortunately doing something alleviates it and I can distract myself from the pain - until I lie down again. That's why I have a habit of doing too much and aggravating the symptoms until the PEM gets so bad I simply can't function. That's when my legs give out and I get terrible dyspnea and lightheadedness and can't see properly. I've been trying to avoid PEM better for the last year but it's difficult. 😓

 

[Lovalab]

Mimicry can you explain to me what the lactic acid burning over your body feels like? Whenever I’m sweating or in an anxious moment I get an internal electrical shock feeling with burning at the same time. It’s only on my back and chest area and is not from the sweat itself it’s much more internal and I don’t have to actual sweat to get the feeling.

 

[Artemisia]

My guess is that the adrenaline and focusing on something else prevents you from noticing the symptoms

Yes this is what it feels like. My body seems to be able to push through and suppress the PEM when I'm busy, especially in public. I have a strong fear of appearing strange or making a scene in public so I guess the adrenaline comes in to postpone the PEM till I can collapse in private. Which doesn't help the whole "but you look fine" conundrum of people not taking my illness seriously.

 

[MonkeyMan]

Not sure about after resting, but I definitely feel worse if I sleep well. Like my body is producing some chemical during my sleep which incapacitates me in the daytime, and the more sleep I get, the worse I feel.

 

[hapl808]

My body seems to be able to push through and suppress the PEM when I'm busy, especially in public. I have a strong fear of appearing strange or making a scene in public so I guess the adrenaline comes in to postpone the PEM till I can collapse in private. Which doesn't help the whole "but you look fine" conundrum of people not taking my illness seriously.

Yep, I had this for years and still to a small degree. When I was more 'mild', I could run on adrenaline for a full day. Didn't matter if I were tired or jet lagged or whatever. Then about two hours after the day ended, the nausea and PEM would hit and I'd be in bed for a couple days.

Now I can push through a short phone call with the same results - but I can sound okay if I really push. Unfortunately the more I 'push', the worse the crash.

 

[Mimicry]

Mimicry can you explain to me what the lactic acid burning over your body feels like? Whenever I’m sweating or in an anxious moment I get an internal electrical shock feeling with burning at the same time. It’s only on my back and chest area and is not from the sweat itself it’s much more internal and I don’t have to actual sweat to get the feeling.

It's difficult to explain, but for me it's a piercing, burning ache that feels very different from the usual DOMS you get a day after exercise. It's like my muscles can't get oxygen and I feel like I need to cut them open to give them air. The pain can be very intense and it makes me very restless. It's absolutely miserable

 

[Artemisia]

Update. The past week I've been pacing and resting more. And PEM is worse with more rest. Just in a constant state of PEM... except for sometimes when I get up and start doing stuff, the PEM subsides. Especially being online. It really feels like adrenaline and/or cortisol spike and suppress PEM for a while. Until it doesn't, at which point I crash and absolutely must rest.

 

[Artemisia]

Example - yesterday I had to leave home for the first time in 2 weeks. Take cat to vet. The PEM was bad all morning and as I got ready. Had to get dressed, rest, eat a few bites, rest. Etc. I think, how will I manage driving to the vet and carrying my cat and talking to people?

Then once I'm in the car and driving, the PEM subsides. I go to vet and drive home, get food. When I lie down to rest that evening, PEM hits hard.

 

[Artemisia]

It's almost like this is non-exertional malaise -- malaise from resting. But then when I DO exert myself suddenly, I get the same sensation of PEM.

A typical pattern for me:

Exert self at home -- PEM comes on.
Exert self in public -- no PEM until home and safe.

 

[Tammy]

It's almost like this is non-exertional malaise -- malaise from resting. But then when I DO exert myself suddenly, I get the same sensation of PEM.

A typical pattern for me:

Exert self at home -- PEM comes on.
Exert self in public -- no PEM until home and safe.

It's a hell of a puzzle to solve isn't it..........this CFS/ME. It's bizarre in so many ways.

 

[JES]

It's almost like this is non-exertional malaise -- malaise from resting. But then when I DO exert myself suddenly, I get the same sensation of PEM.

A typical pattern for me:

Exert self at home -- PEM comes on.
Exert self in public -- no PEM until home and safe.

Probably the adrenaline yeah damping the immune response or something. I remember feeling horrible with POTS many years ago when I was supposed to have a presentation. I felt like I could barely stand before the presentation and was worried I wouldn't get through it, but when I started the adrenaline kicked in and I was able to get through it without a problem.

After that I realized the adrenaline rush can be very helpful in getting you through certain things, although it also serves to hide the symptoms, which isn't always a good thing when it makes people wonder how you can do X but not Y task.

 

[hapl808]

I get the same thing, and did even when I was more mild 15+ years ago.

For instance, I noticed that whether I slept or not the night before a long day of work made zero difference. I felt that I could turn my adrenaline on and it would last most of the day. But the crashes were awful once I got home - nausea, fatigue, migraines, etc. Often would last for days.

If I didn't 'turn on' the adrenaline, then I just felt 'normal' exhausted all day.

So for me, there's a difference between slightly exerting myself too much (phone call, too many trips to the kitchen) which make me feel exhausted and awful, but don't trigger PEM the same way.

Versus really pushing my adrenaline, whereupon I feel great and think, "Maybe I don't have MECFS after all!" Then 12-48 hours later the diarrhea and migraines and bedbound phase starts. Every time.

My muscular issues are a separate thing, but just the cognitive challenges really feel like we should be able to fix them, but I have no idea how to do it after 25 years of trying.

 

[Artemisia]

really pushing my adrenaline, whereupon I feel great and think, "Maybe I don't have MECFS after all!" Then 12-48 hours later the diarrhea and migraines and bedbound phase starts. Every time.

Yes. I find myself thinking maybe I'm not sick with ME when the PEM suppression happens. Even though a few hours earlier I was bedbound and feeling awful. It's very confusing.

 

[Artemisia]

I felt like I could barely stand before the presentation and was worried I wouldn't get through it, but when I started the adrenaline kicked in and I was able to get through it without a problem.

Exactly what happens to me often. Then after a while, the adrenaline/cortisol catches up to me and wipes me totally out.

I also wonder if chronically elevated cortisol has caused my massive weight gain since I've been sick. Cortisol is the body's anti-pain and anti-inflammation hormone, so maybe my body's just pumping it out to deal with the demands I place on it to work and survive , and that leads to my weight gain.

 

[linusbert]

Same, i also noticed when i was in my old flat i had more steps to go to my places.
i somehow managed, but when i run the exact amount of steps when i dont have to go, somehow its more likely causing PEM.
its like the brain knows when something needs to be done and something is unnecessary, its not pushing the energy reserves.

i also think its a adrenaline thing.

but for me when i am on adrenaline and dont push it too much i actually do not crash. sometimes i even feel slightly better for days. though i have higher resting heart rate then for 1-2 days.

there is this thread where many folks said that cortisol supplements before stressor makes them spared from PEM. so its a PEM shield.
sadly hydrocortisol never worked the same as this adrenaline rush. so no pem shield for me.
btw, many also said that BCAAs does prevent PEM.

 

[hapl808]

but for me when i am on adrenaline and dont push it too much i actually do not crash. sometimes i even feel slightly better for days. though i have higher resting heart rate then for 1-2 days.

I think I might've been like this before, but I didn't know enough not to often push it too much.

Now I always feel worse - and my normally high relaxed HR gets even higher. It's 80-90 at best, but after any exertion the next couple days it'll be 100-110.

 

[Azayliah]

Could it have something to do with your position or the resting environment? I noticed for myself that:

• Having my head or feet raised/flat, lifting my arms toward the ceiling or flat to my sides, etc., can be better or worse. Laying on my stomach is usually easier on me than sitting up, but it's occasionally better for me to incline to a half-sitting half-laying position than to lay down fully.
• Holding still can make me feel worse. This is mainly true when it comes to being upright (standing is worse than walking), but I've sometimes seen it happen with moving vs. stilling my hands/arms.
• A poor mattress causes aches, even ones that can't be felt, which creates exhaustion.
• If you tend to wear noise-cancelling headphones when you're up but not when laying down, noise could be a factor. There's also lighting, skin being in greater or lesser contact with things, odors, etc.
• Chemicals and allergens. The detergent in the blanket, the amount of dust or harsh cleaners in an area, how well ventilated things are, and so on. Being in an apartment that had mold made it so that I felt better when I was outside it than I did while resting inside it.
• Eating patterns. I usually don't eat while out and about, but I often eat around the times I stop to rest... and that can be tiring.