What to do when in PEM

Is this normal?
What's "normal" for ME? The diversity of ME experiences is vast. Is there any other disease with such diverse effects?

My biggest fear is that this is no longer PEM, but my new baseline.
A valid, and common fear. I've had it numerous times, and happily the increase in severity passed each time. Sometimes it took years, but usually in months or weeks. The stress from that fear certainly doesn't help.

Only get up for toilet and quick bite.
My ME is quite sensitive to a large variety of foodstuffs. Certain ingredients can trigger what is indistinguishable from PEM. Food intolerances affecting ME doesn't seem to be very common, but it is a serious problem for many of us. So, no guarantees, but it's certainly possible that your present severity is due to something you consume. If you have wheat products every day, how can you know that it's causing problems? I recommend experimenting with your diet: avoiding foods (food families, ingredients, etc) that you are presently consuming frequently. My standard recommendation for PWME is to keep a food/activity/symptoms journal, as detailed as you are comfortable with. That can reveal patterns that human memory is just not adequate for.

FWIW, my present main intolerance is something in seeds. My best guess is arabinoxylans: complex sugars used in constructing plant cells. Unfortunately, AXs are common to most seeds (and some other foods), are highly varied, and there's very little data on which types are in which foods. As you can guess, it's highly limiting for my diet. I think the probability that you are intolerant of AXs approaches zero, but if you were, how would you know that your present severity is due to the seeds/grains that you might be eating daily?

The early stage of my ME involved type IV food sensitivity to most foods. A rotation diet (avoiding each food family for at least 5 days) avoided triggering the symptoms.

The other benefit of experimenting with different foods: there's always a possibility that you could stumble across something that reduces your severity. That's occurred several times in my 25 years of ME. Sometimes it's just a temporary fix, but ordinary cumin ended up as a permanent cure for my PEM. I think that for PWME, a cure for PEM is better than winning a big monetary prize in a lottery. It's a food lottery, and you can enjoy eating some of your "tickets".
 
I can't force myself to hours a day resting in the dark unless my symptoms prevent me doing anything else, such as when I am severly nauseous, feel dizzy if I try to sit up, and have a bad headache.

If I can do something to distract me when I'm resting, I do so, whether an audiobook, often a favourite novel I've read or listened to before, so it's company of known 'friends', or some gentle TV on a small low light screen. The distraction helps to calm my mind and relax me better than lying doing nothing.

For a while I found some audio guided relaxation meditation helpful, but if I'm anxious it just heightens it, and I find myself fighting the instructions. Better to escape into a familiar imaginary world with an audiobook, I find. If it's something familiar it doesn't matter if I lose track of the narrative most of the time
Me too @ Trish…
Often choose audiobooks by voice now and do my next search by the name of the reader (audiobooks or podcasts dont have to cost anything either ,you know this already ? , public Libraries have vast options…maybe family can help sort that for you ?/set you up on tgeir easy access Apps if you havent used prior)…
or low music to drift away with. It doesnt matter if you follow a story particularly… theres always the option to replay though I find I now just let it flow by and enjoy odd phrases or moments in a story .

Wanted to share here too a podcast from English actor Bill Nighy “Ill advised…” calming lovely voice and gentle humour …rambling and short responses to callers questions its easy listening.

Also find *touch* surprisingly helpful…something textural like a dimpled velvet cushion , or -yes-warm hot waterbottle,
helps distract my mind from utter misery when with bad headaches, body pain, dizzyness,when noise is too much.
Thinking of you
 
Sending solidarity. I know how hard it is to get that dreadful question in your head during a crash: ”Is this PEM or my new baseline?”.

I have had PEM that lasted months. It can get better… and I hope it will get better for you soon. Hang in there.
 
Sorry, me again. I'm 3 weeks into my first real PEM and very little progress.

I'm in bed in the dark with my eyes closed 23 out of 24 hours. Only get up for toilet and quick bite. Switched on phone to type this.

Worst is my anxiety. My brain doesn't stop! How can I rest this way? I feel like I'm my own worst enemy.

Is this normal? What to do so that I can REST?

Thanks so much again!
Did your doctor suggest anything? Could you explain the eye thing more if you are still getting it - is it like a migraine? Or light sensitivity?
 
What to do so that I can REST?

I feel for you, it's horrible!

I use the same strategies others have suggested—find something that occupies my brain enough, but not so much that it's stressful. It's a really individual thing ,so you might have to try different ideas.

Things I've done include listening to audio books, taking language lessons via an app (didn't matter that I couldn't retain any of it), watching old films on a small screen, and listening to lectures and conference presentations on things I'm genuinely interested in (most recent one was prehistoric archaeology, but I've also listened to presentations about wildlife, physics and geology).
 
Did your doctor suggest anything? Could you explain the eye thing more if you are still getting it - is it like a migraine? Or light sensitivity?
Doctor only suggested rest and melatonin. She is new to ME/CFS and reading up on it now. I have not spoken to consultant yet but don't expect much.

I have light sensitivity for sure. No idea what the light flashes are that I'm seeing. Eyes feel very strained and start burning. No migraine. Mostly a feeling as if my brain is really 'sick'. Hard to explain. Not like a normal headache or pressure headaches. More as if there's something really wrong in my brain. Eyes seem to trigger that feeling.

Looking at screen also causes slight nausea/queasiness within 10 mins.
 
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Eyes feel very strained and start burning.
Could it be that your eyes are very dry?
I have to use special eye drops against that.
Did your doc check your eyes?

Not like a normal headache or pressure headaches. More as if there's something really wrong in my brain. Eyes seem to trigger that feeling.
When I’m unwell, I can sometimes trigger PEM just by looking 90° up or down, even while lying in bed.
Also the position in bed becomes important.
Lying flat (not propped up) and on my side is working well.
Lying on the back can trigger weird episodes sometimes, especially if the back of my head scrubs around on the pillow while I’m moving my head.

Your description remotely reminds me of my worst OI episodes.
It was difficult for me to associate my symptoms with that kind of OI dizziness at first.
 
I know it probably doesn't feel like it, @MinIreland, but you're doing really well. You're doing what you need to do and you're finding it hard like we all do (and probably harder because of your anxiety). It's scary to feel so bad and see no progress, but keep doing what you're doing. For what it is worth, even when I have ended up with a new, lower baseline, it has not been as bad as the early weeks/months of the drop.

Just adding a few ideas for when audiobooks etc aren’t an option (I spent many years not able for things like that). All done lying in bed in the dark in silence.

Most of these are variations of guided meditations I have done. You may have done them all already too!

Bodyscan with or without breathing into bits of body: Bring your attention to your left toes. Become aware of how they feel. Then imagine your next in-breath going all the way down to them, and your next out-breath letting go of anything they need to let go of. Work your way around your whole body. You can leave out the imagining-the-breath part if that’s too much. Just bring your attention to each bit of your body in turn and see how it feels.

Bring your attention to your legs, and imagine them becoming heavy and sinking into the bed. Then work up through the rest of your body, letting each part become heavy and sink into the bed. Don’t forget your head! This helps me let go of muscle tension that I didn’t realise I had.

Same thing but imagine something nice coming in to your body instead. Like warm honey, or clear water, or fresh air, or whatever feels soothing.

If a part of you feels really horrible, like your head, try imagining something like cold water gently lapping in, cooling it down and taking away some of the yuck. Really imagine/feel it. Then imagine gentleness or kindness or love in it, or gentle kind people looking after you.

Imagine yourself lying somewhere really lovely, like a beach or a hillside. Imagine how it smells, how the air feels on your skin, how it feels if you reach out and touch the sand/grass, what sounds there are (you can turn the volume down and have the place to yourself!)

Imagine your breath coming in one nostril (right) and out the other (left). On the next breath, reverse it, so your breath is coming in the left and out the right. Then reverse again, and reverse again, and then on the next breath, imagine your breath coming in both nostrils and out of both nostrils. And then start again. You don’t have to change your breath at all. You’re just imagining these things. If you like, you can count alongside it. So the first breath in and out is ONE. The second breath in and out is TWO. The third breath in and out is THREE. The fourth breath in and out is FOUR. And then the breath you take in and out through both nostrils is FIVE. You can keep counting up, with the 5th, 10th, 15th etc breath being through both nostrils. I do this in MRI machines!

Wish people well. Think of someone you really love. And in your head, think of things you’d really like them to have. Like “May you be well. May you have nurses who are kind and gentle.” Just keep going, wishing them all kinds of things. “May someone make you laugh today.” This is particularly good if you’re genuinely worried about someone. And you can do it for yourself too. “May this ease soon.”

If my mind is all over the place, concocting one thought after another, I try to feel the physical sensations underneath them (e.g. for me, often a kind of tightening in my throat/neck) and just see what they do when I bring my attention to them. Then after watching for a while, I try adding things to them, one after the other – softness, see how that feels, gentleness, see how that feels, kindness, love. Sounds daft. Helps me.

You've probably come across all of this already, but in case not...mindfulness/Buddhism often talks about unruly thoughts in terms of waterways, e.g. a rushing river, choppy waves. The idea is that rather than being in the rushing river, being tossed around, you get out of the river and watch it. So you're observing the rushing river, seeing how churned up it all is, but you've got a little bit of distance from it. You're not identifying yourself with the thoughts. You're going "Huh, look at that, my mind is scared that this is going to last forever. And now it's thinking that..." And you have enough distance to be able to go, "That's anxiety." And then when the water flow in the river slows down, you observe that. And if it never slows down, then you go, "Right, I live beside a turbulent river."

Sending hugs. :hug:
 
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Eyes feel very strained and start burning. No migraine. Mostly a feeling as if my brain is really 'sick'. Hard to explain. Not like a normal headache or pressure headaches. More as if there's something really wrong in my brain. Eyes seem to trigger that feeling.

Looking at screen also causes slight nausea/queasiness within 10 mins.
This is exactly what I suffer with. Much worse in PEM. It's like just looking is an instant trigger — the brain can't cope with processing vision, especially from a screen. And I get the burning eyes too.
 
I don't know if you have tried box breathing @MinIreland but I have just seen this article and thought you might like to try it. It is supposed to trigger the parasympathetic nervous system which would help anxiety.

https://www.bbc.co.uk/news/articles/c5y5jqly153o. It's very simple. I have been trying it. Sometimes the rhythm is a bit hard to capture but it is so simple.

"Dr Helen Garr, a GP who treats doctors and nurses suffering mental health difficulties, says: "I recommend box breathing to lots of my patients because it is one of the most powerful evidence-based hacks that we have to take control of our stress response and our nervous system.""
 
I haven't been able to read everything, but the box breathing helps, @Binkie4. Thank you.

I have also discovered that part of my horrendous anxiety and emotional dysregulation has been likely caused by Zopiclone. My GP had recommended to take one every 3 nights or so, and every time the day after I was a complete mess. Stopped using it and feel calmer now.
 
Well done on figuring out the Zopiclone wasn't agreeing with you.

Re burning eyes, in case it's helpful, I used Celluvisc 1% single dose unit eyedrops for many years before changing to what I am currently on. They help me with the part of the burning that is dryness.

They are available on prescription and are covered on the Drug Payment Scheme. The script needs to state how many single dose units you need per day, otherwise you won't be given enough.
 
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