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Help - can't switch off until PEM hits

keepswimming

Senior Member
Messages
327
Location
UK
Hi all 😊 I'm finding one big problem in particular when it comes to managing my symptoms. I wondered if anyone can relate, and if anyone can give me any advice.

I find often, before I have a big PEM crash, I get on a high where I just can't switch off. I think it's triggered by me doing too much, or having too much stress, perhaps on one day or over a few days. And then, after that, I lose the ability to relax. I still try to pace, but when I try to rest I can't switch off. I feel fidgety and buzzing, my mind races. I start going too fast, talking too fast, feeling tense and stressed. This lasts for a few days, perhaps even up to a week. And then I crash! And only once the PEM hits can I relax again, start going slow again, and rest and relax properly.

What's so frustrating is I can see what's happening but I don't know how to change it. I know I'm not resting properly. I know I'm heading for a crash. But I just can't seem to switch off, rest and relax, until its too late and PEM has hit...

I know, of course, the best solution would be never to do too much or get stressed! I try not to, but sometimes things do go wrong and that's hard to control. So I want to find a way to cope better once they do.

Does anyone else experience anything similar? And any advice on how I can wind down and rest so I can reduce the PEM that's coming?

Thank you.
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
Have you tried something like DMG? It has a calming effect on my body and brain and I can feel it working within just a few minutes if I put just a little bit under my tongue. (However TMG doesn't --it makes me hyper and angry. I'm not sure why though.)

Hopeful others will have better suggestions.
 
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xebex

Senior Member
Messages
840
I have this too and I have it in the PEM so it makes its very hard to rest. My body aches and hurts I feel like I’ve got the flu my head is hurting I’m sleepy and dizzy but my legs want to run a marathon! But If I try to do anything it just makes all symptoms worse. Eventually I will collapse in a semi comatose state but I usually try to not let it get that bad. I find ritalin very helpful for it, but it is likely I actually have adhd anyway which could be why it’s so helpful. I actually think untreated adhd could be one of my many triggers.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@keepswimming lot of us have found that overdoing it or trying to "push through it" is extremely counterproductive and even damaging. Repeatedly doing that has been a recipe for people going into a downhill spiral.

Overtime, as I've gotten better, I've been able to greatly reduce PEM, the only time I got it in the past 6 months was when I walked 10.9 mi in a day. I knew right over done it, and I paid for it. So, I can relate.

There are a couple of problems here. One is the one you're discussing or you just keep pushing even though you know there will be a problem later. Is that something physically you feel driven to do? Or is it just that you're mentally pushing and trying to do as much as you can before you crash?

For this, they're obviously behavioral modifications, where before you feel the bad part of the PEM, Where you're in the giddy face of doing everything, you start to recognize that and simply clue to slow down. It takes mental discipline to do it, but you won't have as bad a crash and it won't be as costly to your body. If it's truly something you're physically feeling, it might be worth investigating your biochemistry a little bit, and trying things that are calming, like GABA, taurine, magnesium glycinate, or even melatonin, which will act just the brakes, and force you to relax and prevent a costly crash.

The second is the PEM itself. From what I've learned, it seems to be a result of too much oxidative and nitrosative stress, generated as a result of too much activity without replenishing resources. So, to head it off, I found that supplementing with glutathione and branch chain amino acids seem to work well. And, these work best if on top of a balanced set of hormones, including adequate cortisol and thyroid and testosterone, as well as methylation working and adequate tetrahydrobiotrin. And, many of us are short of amino acids, which feed the muscles, as well as having adequate glycogen stores. If infections, heavy metals, and toxins are dealt with, and All of these factors are in place, I found that PEM is less likely to occur at all, and if so, it can be easily resolved by taking glutathione and BCAAs.

I know a lot of other people will go on and on and on about PEM and how awful it is, but I've also found by questioning them, that they are doing none of these things to avoid it.

A last factor, which it sounds like you're doing, is maintaining a decent status of conditioning. Doing what you can, when you can, and gently increasing conditioning by activities you can manage, is very helpful. (While I still have challenges with aerobic exercise, all the way along I found that weight lifting at first, and then slow walks helped me to recover some level of fitness.)
 

keepswimming

Senior Member
Messages
327
Location
UK
Thanks @Judee i will do some research into that!

@xebex isn't it a horrible feeling? Adhd combined with CFS must be a difficult combination 😔 I want to work out how to prevent myself reaching the collapse stage too but I'm not sure how at the moment!

@Learner1 thank you for taking the time to write a long answer 😊

One is the one you're discussing or you just keep pushing even though you know there will be a problem later. Is that something physically you feel driven to do? Or is it just that you're mentally pushing and trying to do as much as you can before you crash?

It's more of a physical thing. The best way I can describe it is that it's like I've got an adrenaline rush. My whole body is "buzzing". It gives me a false sense of energy, but worse than that it means I can't rest. I don't want to keep pushing. I try to pace and take rest breaks as normal, but when I try to rest, instead of being able to relax, I'm tense and stressed and can't switch off. And I can feel my body is going too fast, and working too hard, and my mind is whirring. It's not a choice, it feels out of my control.

Where you're in the giddy face of doing everything, you start to recognize that and simply clue to slow down. It takes mental discipline to do it, but you won't have as bad a crash and it won't be as costly to your body. If it's truly something you're physically feeling, it might be worth investigating your biochemistry a little bit, and trying things that are calming, like GABA, taurine, magnesium glycinate, or even melatonin, which will act just the brakes, and force you to relax and prevent a costly crash.

This is all good advice thank you. I find it really hard to slow down when I hit this point, and when I do I feel so stressed I just want to be on the go again. But perhaps even with those feelings by slowing down I could still limit how bad the PEM is when it hits.
I will look into all the supplements thank you. As I said it's more of a physical thing. So if I could find something to calm me on those days, so I can rest properly, hopefully I could ward off the worst of the PEM. I will also look into what you suggested about PEM, thank you!

I think I do keep reasonably active all things considered. My CFS is mild compared to many, so on the days when I'm managing my fatigue well, I have a good balance between activity and rest. I just wish I could keep it up on the 'adrenaline-rush" days!
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
It does sound like a biochemical thing. Yes, see if any of the supplements help. You might also consult a functional medicine doctor who can help with the supplements and even do comprehensive nutrient testing which may diagnose the answer more specifically, like the one here (scroll to the bottom of the page under Additional Resources to see a sample test):

https://www.gdx.net/product/nutreval-fmv-nutritional-test-blood-urine
 

xebex

Senior Member
Messages
840
@keepswimming unfortunately the only way not to collapse is by cutting your activity load significantly down. My suggestion would be to get a pedometer, figure out how many steps you do a week, cut that down by half and see how you feel after that. Keep cutting your steps down till you stop having crashes. Then addressing triggers and removing them. Triggers can be anything from viruses and bacteria to mold, chemical sensitivities, emotional stress, structural issues thyroid etc etc but please don’t forget this entire situation is undoubtedly emotionally stressful so learning stress reduction WILL help regardless of whether CFS is caused by emotional stress it is certainly exacerbated by it and in my experience even if you don’t feel stressed the mind and body knows you are. These changes MIGHT help you build back up a little but it’s a very painstaking process and full of set backs. I have however improved from 30% functional to around 60% sometimes 70% over the last two years.
 
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Abrin

Senior Member
Messages
329
Have you tried something like DMG? It has a calming effect on my body and brain and I can feel it working within just a few minutes if I put just a little bit under my tongue. (However TMG doesn't --it makes me hyper and angry. I'm not sure why though.)

Please excuse me if this is a stupid question, but what is DMG?
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
...but what is DMG?

Not a stupid question at all. :) I should have been more clear.

I'll give you the webmd definition because I'm not too good at explaining biological type things:
Dimethylglycine is an amino acid, a building block for protein. It is found in the body in very small amounts and for only seconds at a time.
Dimethylglycine is used for attention deficit-hyperactivity disorder (ADHD), epilepsy, chronic fatigue syndrome (CFS), allergies, respiratory disorders, pain and swelling (inflammation), cancer, alcoholism, and drug addiction. It is also used to improve speech and behavior in autism, nervous system function, liver function, the body's use of oxygen, and athletic performance. Some people use it to reduce stress and the effects of aging, as well as boost the immune system's defenses against infection. Dimethylglycine is also used to lower bloodcholesterol and triglycerides, and to help bring blood pressure and blood sugar into normal range.

How does it work?
Dimethylglycine might help improve the way the body's immune system works.

Wikipedia also has some information on it: https://en.wikipedia.org/wiki/Dimethylglycine
 
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keepswimming

Senior Member
Messages
327
Location
UK
Yes, i have the same thing.
And I don't have ADHD, not the slightest bit.
And I don't know what to do about it, except form never get the adrenaline rush in the first place, but that is impossible.

Interesting to hear you get something similar... But sorry to hear you've not found anything that helps 😕 if I find anything that helps me I will let you know!!
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
I lose the ability to relax. I still try to pace, but when I try to rest I can't switch off. I feel fidgety and buzzing, my mind races. I start going too fast, talking too fast, feeling tense and stressed.

Have you tried any of the wired-but-tired remedies in this post by Hip?

And if these other symptoms listed below sound familiar then your reaction might be from excess glutamate, which Hip's post addresses:
*Symptoms of high glutamate*
Summarized here, expanded in article with refs:
https://area1255.blogspot.com/2016/04/symptoms-of-high-glutamate-levels-in.html

Insomnia, Social Anxiety, Emotional Lability (being over-emotional, crying at movies, music, smells etc), Agitation, racing thoughts, hedonic attachment (clinging to whatever leads to good feelings), stress (overthinking, lasting anger or sadness), attraction to novelty, shopping sprees (feeding desire, not need), addictions, manic behavior.
 

Davsey27

Senior Member
Messages
514
I think this is where mindfulness and body awareness can help. While you are walking or sitting perhaps paying attention to the internal tension.
 

Hip

Senior Member
Messages
17,824

keepswimming

Senior Member
Messages
327
Location
UK
Thanks @Hip - I would like to thank you for your thread someone else pointed out to me about feeling "tired but wired". I'd never even heard of glutamate before but what I read made a lot of sense, I've ordered a couple of things you suggested to try, thank you.

I wonder if doing too much/pushing too hard could trigger excess glutamate, as that tends to be the trigger for me?

Thank you for the link to the thread about GAD too 🙂 I don't think this is what I'm experiencing as the tension feels more physical than mental... I don't feel worried, more a feeling that I'm "buzzing" and not able to slow down! However my husband suffers with generalised anxiety disorder so it may be helpful for him, thank you.
 

Hip

Senior Member
Messages
17,824
Thank you for the link to the thread about GAD too 🙂 I don't think this is what I'm experiencing as the tension feels more physical than mental... I don't feel worried, more a feeling that I'm "buzzing" and not able to slow down!

I think there might be some crossover between the mental tension of GAD, and the overstimulated "wired" feeling of ME/CFS. I get both, and a find the supplements which work for my GAD also have some effect against the "wired" overstimulation.


When I experience GAD, there is no worry, but my mind feels tense and overstimulated. If my GAD is just mild, then this tension and stimulation often translates to a furiously fast productive work, or talking to foo fast. The mind is hyped up, so everything occurs at a frenetic pace, rather than being calm and relaxed.

In fact it is well known that mild GAD does boost productivity, because of the mental overstimulation. But once GAD gets worse, and enters the moderate or severe category, then the stimulation becomes too much, and you can no longer function effectively. Moderate or severe GAD is a hellish state.


My normal anti-anxiety protocol is N-acetyl glucosamine (the most important), turmeric and flaxseed oil.

I also use a arginine pyroglutamate nasal spray, as this has calming effects which kick in very fast, within 20 minutes of spraying. (I just dissolve 5 grams of arginine pyroglutamate in a 50 ml nasal spray bottle, with 500 mg of salt added make it more comfortable in the nose).

If I get a bad day when anxiety / overstimulation flairs up, I usually take 4 grams of taurine powder orally, as this works on GABA receptions, and has quite a strong calming effect. The only problem with taurine is that its GABA effects develop a tolerance after a time, so its benefits start to diminish. But if you only take taurine for say 3 days or less, then you don't get the tolerance issue. So taurine is great for short-term anti-anxiety treatment.


You might also like to look into the herb kava. This has quite potent relaxing effects, but works in a sort of different mental dimension to the above anti-anxiety supplements. A post about kava here.
 

keepswimming

Senior Member
Messages
327
Location
UK
The mind is hyped up, so everything occurs at a frenetic pace, rather than being calm and relaxed.

Thank you for explaining @Hip I wasn't aware of GAD symptoms coming out in this way. I guess because I'm not having anxious thoughts I didn't see it as anxiety - but the way you describe it above definitely sounds similar to what I'm experiencing. I will do some research into all your recommendations, thank you.

If I get a bad day when anxiety / overstimulation flairs up, I usually take 4 grams of taurine powder orally, as this works on GABA receptions, and has quite a strong calming effect. The only problem with taurine is that its GABA effects develop a tolerance after a time, so its benefits start to diminish. But if you only take taurine for say 3 days or less, then you don't get the tolerance issue. So taurine is great for short-term anti-anxiety treatment.

Taurine is actually one of the things I've ordered since reading your other post, thank you for explaining about the tolerance issue. Short term use is probably OK for me, as I don't feel like this all the time - but when I do, I feel I need something to help me shut it down. So perhaps taurine would be good to help me do that!

I really appreciate your informative and well explained posts, I feel like I've got some things to try now 🙂