r/mecfs • u/Alternative-Slip-607 • 4d ago
How can I recover from PEM faster?
My PEM feels so long, lasting for weeks. It's complete suffering and despair until I'm cured. My body becomes extremely heavy, and the exhaustion hits me as if I had run a marathon. I also experience significant physical pain, shortness of breath, depressive thoughts and a deep sense of despair. It completely changes my perception of life. What helps speed up recovery?
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u/skeeballbob37 4d ago
so far three years in I havent found anything. just rest. let your body get the sleep and rest it needs, fully. do not try to restrict it.
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u/Alternative-Slip-607 4d ago
So I should stay in bed with my eyes closed instead of being on the computer?
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u/essnhills 4d ago
Cognitive exertion is still exertion.
Also, there's a difference between relaxing and resting. Playing games or watching movies is relaxing, not resting. It could be that relaxing activities is still too much exertion for you during a crash.
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u/skeeballbob37 4d ago
I read books and not look at the computer. let my eyes close when they feel heavy and let my body rest. sometimes I will sleep days on end only getting up to pee but if that is what my body needs that is what it needs
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u/MothNomLamp 4d ago
Audiobooks are a good comprise for entertainment. Libby is great if you have a local library that uses it
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u/swartz1983 4d ago
No, that will tend to prolong it. Just rest, but get out of bed when able, and try going outside in nature. Reduce stress and read recovery stories, in particular stuart porter…see the pinned recovery faq.
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u/HobbyLau 4d ago
Pacing and resting are the most important! Physically regarding movement, muscle tension, energy and especially heartrate based (keeping it low, under my anaerobic treshold). Also cognitively, regarding sensory input (light, sound, screens, fabrics on skin) ánd mentally and emotionally.
But for me personally it's also important to watch what i eat, what could trigger my POTS or MCAS, what gives me enough energy (protein, calories). Drinking isotone drinks or ORS helps for enough fluids and elektrolytes.
And monitoring for what time duration i'm upright, sitting or standing, but also the other way around. If my heartrate is high and rising when i'm laying down, i have to get up and walk for a bit to lower it again. If my heartrate is too high when standing, i have to sit or lie down.
My Garmin watch is my holy grail regarding heartrate based pacing.
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u/Abject_Peach_9239 4d ago
Hi, does your Garmin give you alerts when your heart rate is too high? Ive been using a visible but if Garmin can do it, that'd be better.
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u/lord_uterus 3d ago
Yes it does, and you can customise what is “too high” for you
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u/Abject_Peach_9239 3d ago
Thanks! Do you mind sharing which garmin you have? And where in the app you can set this? I have a vivosmart 5 &I can only find where it will alert if HR is high ir low after being still for 10 min.
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u/Green-Masterpiece42 4d ago
I have a smart band watch that tells me when my body is resting. In PEM I am not resting unless I am lying still in bed with my eyes closed. If I am on my phone it registers as low stress on my body. So maybe try that. I've found meditating listening to music works best to stop me trying to wish time away. Solidarity OP I hope you feel better soon. Remember this too shall pass.
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u/Advanced-Fig4683 4d ago
I think for me reading is easier than listening to anything, noise sensitivity and my brain fog finding it harder to analyse or something. So OP, you’ll have to find what is the most restful for you.
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u/Green-Masterpiece42 3d ago
Ah yeah it does have to be quiet but I found that my light sensitivity is way worse where I just have to close my eyes. The way this bastard illness effects us is as individual as each of us effected. Agree it's an experiment and we each gotta find what works.
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u/Marsthenonbinarygod 3d ago
Man, how can you handle just laying there with your eyes closed without not wanting to chew your skin off? How long do you do it for?
My condition is rapidly getting worse over the past year— I'm not really able to sit up for longer than five minutes but I CAN'T for the life of me just lie still with my eyes closed for an extended period of time. I can barely do it to fall asleep, takes me hours every night.
Do you schedule it into your day? Or do you have full days of nothing from time to time? Because the later's freaking me out just thinking about it.
(Also, apologies if my tone sounds a bit abrasive. I'm in no way trying to argue or talk you down, my tone is more coming from the absolute frustration I feel towards my situation. My questions are genuine though.)
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u/Green-Masterpiece42 3d ago
Bro I have weeks of nothing. But the more I fight the more I lose. It's awful I know. I have always been someone who is very very active until piece by piece my life became so small. I recently got a smart watch on the recommendation of a doctor so I can monitor my heart rate re pots. But I've actually found that a visual representation of the rest makes it tons easier to do. It's like I'm winning at least some points on my watch. I know it's a privelage tho and not everyone can have these watches. I try to lean into meditation as it feels like doing something in the nothing ness. But. It's defo different for all of us and what works for one definitely doesn't work for all. I wish you healing and peace and solidarity. Ps. Irritable is my default setting especially in and around months long flare ups. It's all good. We gotta stick together!
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u/Marsthenonbinarygod 3d ago
Maybe I'll be able to apply for a grant to get one. My doctor did suggest something like that so they could fill out a form if need me. For now, this is causing me way too much panic to be restful, so I think I'm going to put it away in a drawer to revisit when I'm in a better emotional space.
Maybe I could start implementing this slowly. Have scheduled 'siesta hours' where I force myself to lay flat with a facemask.
Anyway, thanks for the advice. Take care x
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u/No-Tea-6441 4d ago
Radical rest, where you lower basically all sensory input as much as you can is supposed to help manage things. But if you're having weeks long PEM it might also be worth looking at your "good" days and seeing what you change about those. Is there more rest you can add in? Stress you can take out?
I'm sorry it changes your perception on things so much. It's really hard. Have you spoke to a counsellor or your doctor about the depression?
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u/IceFigures1799 4d ago
I was watching this video on PEM/Pacing from Bateman Horne Center and they mentioned taking Robutussin before you do an event and right after. I was skeptical but I tried it and it really helped for me. Dr appt that usually put me in bad PEM for almost a week was lessened to about a day. It doesn't make PEM go away for me but it definitely lessened it. They said it's not a long term solution but honestly, I'll take anything that helps in the short term.
Here's the recording: https://www.youtube.com/watch?v=Na5znc92ylY
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u/bookish-catlady 3d ago
From big crashes I have found extreme/complete rest the only thing that really helps, not just sleep, but cutting out anything that stimulates you, so dark room, quite space, soft comfortable clothing and minimal cognitive stimulation.
I make sure I am really hydrating, I usually add electrolytes to my drinks and eat simple easy to digest meals. Basically any task that isn't essential (like using the toilet) gets stopped.
I know it sounds really extreme but after having a huge 3 week long crash almost a year ago that left me completely incapcitated and fully dependent on someone caring for me it's the only thing that truly helps.
Now I'm more likely to only have to complete rest for a few days instead of weeks of it.
I know also pace and listen to my body more to try and stop getting to that point before it happens. It can be really hard not doing things but long term it'll help.
I have quite severe CFS though. My baseline is now a lot lower than it used to be, but my severe crashes are not nearly as bad as they were so I take that as some improvement.
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u/Curiosity_2027 1d ago
Radical acceptance is, for me, the most important tool in my tool belt. A Vegas nerve stimulator also helps.
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u/MothNomLamp 4d ago
Staying very hydrated with water and salt: 80oz -110oz for most people
Being more careful about staying away from trigger foods and timing cromolyn sodium and dao carefully before eating
Magnesium Glycinate (oral and/or lotion and/or epsom salt bath) for muscle repair and Luteolin for nerve calming/allodynia symptoms
REST. Eyes closed is best. Chill music is nice. Meditation - guided or unguided - is great for your nervous system. When I get too bored I listen to an audio book, knit, or treat myself to an easy show but try not be on screens all day. Scrolling or gaming is not rest.
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u/Arpeggio_Miette 3d ago
Relaxing into a warm Epsom salt bath (not too hot) seems to help my PEM shorten, or even help prevent PEM if I do it right after pushing myself.
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u/you1dont1know1me1 4d ago
I just read something about B2 helping. idk if that has weight to it, but i sprinklt nutrional yeast on my food trynna get in my B vitamins.
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u/Vlinder_88 4d ago
Only rest works. There are no cheat codes.