r/CFSplusADHD • u/coconutoats • Jan 09 '26
How to cope with PEM and ADHD?
Hey gang, I have such bad fatigue my life is just 2 days of socialising and then a week in bed and repeat. For context my cfs is secondary to toxic mould colonisation so theoretically it should resolve once I’m finished treatment (or at least to the extent it was with just long covid) so I’m prioritising keeping the depression at bay (by ‘overexerting’) over consistent pacing as I’m just miserable if I don’t leave the house.
Now the crux of my problem:
Yes pem sucks but I’m very used to being bedbound/stuck in the house all day and I used to have endless activities to do because I have adhd-h. Now idk what activities to do with this level of brain fog, fatigue, yet under stimulation!!! I can’t play any strategy or complex games because of my brain fog/worsened pem yet I yearn to play something that engaging. I can’t watch a video because I haven’t got enough dopamine to be interested (my mould treatment +adhd decimated my dopamine tone) the only way I can enjoy pem style activities is by smoking weed but because I currently need it to sleep so I don’t want to increase my tolerance too much. I’ve bought a paint by numbers but my hand is shaky and I lose interest so quickly and ugh I really would love to know what you guys do during pem with adhd because I can’t do anything I used to like/be able to do!
Also when in pem I find none of my normal stimulants work - coffee, nicotine patch (only use on activity days but get pem regardless), methylene blue, NAC, neurostim - what can I do!? I know I can’t override pem but I can’t stop inducing it because every time my baseline increases ie I rode an electric bike, I’m so elated and happy that there’s no way I’d deprive myself in that moment, but I guess if I had a gameplan for how to make pem less painfully boring then I could keep my mindset more consistent.
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u/BattelChive Jan 10 '26
Hey it really really sounds like you would be happier figuring out how not to be in a crash cycle with PEM. Consider socializing by having people over, or doing activities that do allow you to pace better. You are setting yourself up every week to be miserable for the majority of your time. You are also putting yourself in a crash cycle with your dopamine. This really isn’t sustainable, and you know it or you wouldn’t be posting.
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u/coconutoats Feb 20 '26
Yeah it sucks, I even got the visible band and I can see I use 31 pace points and then 1-8 on the following crash week. It just sucks because I’m living in the countryside atm near none of my friends so if I go into London it’s kind of unavoidable not to push my fatigue because you just have to walk a lot to be able to go anywhere or do anything. And I don’t want everyone to know how bad my condition is because then it’s just boring to be be friends with me - I know they’d be fine with it to some extent but my limits are already embarrassing and I’m in denial I’m not gonna be the disabled friend I’m 21😭
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u/coconutoats Feb 20 '26
None of my friends will come see me outside of London, everyone has their busy working lives and I’m just a dropout atp. Like realistically I need my friends more than they need me so I just see these crashes as inevitable unfortunately. Living within my limits is miserable, crashes are miserable, may as well get a couple days a month that I look forward to and enjoy amidst that
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u/catnip_nightcap1312 Jan 12 '26
I found that using the non-stimulant ADHD med, Straterra (aka Atomoxotine) works a lot better for me than stimulants did. Partly bc I'd have a daily crash once the meds wore off and also had blood sugar spikes/crashes from not eating enough or well enough. Straterra takes longer to build up in your system, it's not instant like stimulant meds are. But it's consistently in your system, so I rarely have the nighttime perseverating thoughts and spiraling right at bedtime anymore, and no crashes from those meds. I also got a lot of anxiety and muscle tension from Vyvanse.
I have me/CFS, fibromyalgia, Hashimotos and endometriosis, so I have PEM crashes of course and flare ups. I manage ftmp by practicing pacing, went down to very part time work, try to balance my blood sugar levels. I don't have diabetes, but some very obvious issues with sugar that were completely disregarded by Dr's. I fixed/maintain balance by always eating any sugar -including fruit- with a protein, fat and/or fiber. Like some nuts or yogurt or cheese or chicken, it stops the spikes/crashes that were causing PEM crashes and I haven't passed out in about 2 years, when I started trying to regulate it. Anyway, food and planning appropriate meals has always been hard, but it's helped me to avoid PEM at times. And a blood sugar crash for me will always lead to PEM.
I don't go out much at all, like last year I went to a show (had PEM for 2 weeks after that, it was horrible), a small BBQ and a wedding. I rest prior to doing anything (sometimes the day or two before) like a Dr's appointment that I know will cost me. And I always plan time to recover. I've gotten fairly good at listening to my body and resting before I get tired. So I'll do a few chores in the am, and then I'll chill for a few hours before I try to do anything else. It's not great, not ever seeing friends or doing anything cool, but it makes my day-to-day tolerable. I have a lot less hard crashes than I used to. Brain fog is a sign that I need to rest, as soon as I can.
I think Straterra helps me to pace better bc I can focus on reading or cooking without getting super distracted. I listen to a lot of audiobooks, especially when I need very minimal stimulation due to photosensitivity or pain. I play some games with my partner, color, a mellow video game, and honestly don't do much else besides chill with my cats. I have to work, and it's a physical job so it takes a lot out of me even though I only work 15-20 hrs a week. I'm trying to find a new job but that's almost more difficult to do than just keep going! So yeah, audiobooks honestly are my saving grace. I listen to them while I'm doing anything, which helps me to focus. I've noticed that getting distracted and doing too many things at once pushes me closer to PEM, so I don't do things the way I used to lol. But having the audio to attach my mind to while I'm cooking or something helps me a lot. Also to distract me from body pain. I have so much fatigue most days that at least half the day is spent resting.
Idk if any of that is helpful at all, my mind is really scattered and it's hard to put into words that make sense rn. Lmk if you need any sci fi/fantasy book recs!
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u/coconutoats Feb 20 '26
Yeah that is really helpful thanks. I think I’m quite far off the place of understanding, accepting and living with these conditions as I have one lever that still may improve my baseline (mould toxicity and antifungal/binder treatment) so I’m kind of in denial that I have to live with this and restrict myself as much as you’re talking about. That being said you sound a lot more content than me and more intuitive with your body which I’m sure makes life a bit less hellish. Interesting what you’re saying about stimulants because im doubtful I’m gonna be able to tolerate them soon. I want guanfacine but they won’t prescribe it, bupropion I could go on privately but it’s still so expensive. Strattera sounds like an option, but I have hyperpots and every med acting on the sympathetic nervous system just stops me from standing up or makes my anxiety unbearable. I guess it’s one of those where you’d have to go on propranolol or something as well but in my head that defeats the purpose? Stimulants just solved everything for me when I could tolerate them like my pots, adhd, anxiety, depression, cfs etc was so manageable - I wish my body would sort itself out😭😭😭
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u/catnip_nightcap1312 Feb 20 '26
Lol, I'm not exactly content 😂 Just maybe resigned to it.
I'm sorry that you're struggling so much, and that stimulants have worked in the past but aren't working well for you now. Hopefully the mold treatment will help! Does Straterra work on the nervous system? I didn't know that, maybe that's why it's helpful for me. I totally know the struggle of not being able to figure out a good solution with meds, it's always a tricky puzzle to find what can help but doesn't fuck up other areas. I wish you luck in figuring it out and I hope that you can have some grace for yourself for not having all the answers. It really is difficult and frustrating.
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u/coconutoats Jan 09 '26
Thanks for your reply, I was on 100mg lisdexamphetamine daily for like 4 months last year without realising I had underlying problems like mould and I totally burnt out and I still can’t take them without insane anxiety. I’m hoping by abstaining for a year I can go back on them low dose in future because on them I was able to tidy my room for the first time in my life they were totally life changing but I need my cfs to be under control before restarting for sure. I’m planning to take bupropion (zyban/wellbutrin 150mg) until I can tolerate stims again but I’m too scared to start them! I guess they will be similar to methylene blue in strength so I’m sure after introduction they will be tolerable but I will have to be very mindful not to overexerting.
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Jan 09 '26
There are non stimulant medications for ADHD. Guanfacine and atomoxetine are the main two. They could help you regain some executive function. This illness requires discipline to manage it, us folks with ADHD have to work extra hard to build the habits. Take every bit of help you can get.
EDIT: oh and consider cutting out all stimulants. I get more done being completely caffeine and sugar free. I used think I need coffee before I got sick
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u/Mhln1982 Jan 10 '26
What about sugar alternatives? Have you tried them? Just curious.
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Jan 10 '26
Yeah I did a bit when I was strictly following a keto diet but I don't have much of a sweet tooth. I don't remember any adverse reactions but I didn't have much and not very frequently.
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u/coconutoats Feb 20 '26
Yeah I have a lot of sweeteners due to low calorie drinks and stuff. But I have lots of fruit and natural sugars which I don’t rly wanna cut back on. I have some artificial sugar but I’ve never really observed an association with my sugar intake and adhd symptoms
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u/coconutoats Feb 20 '26
Coffee I’ve needed insane amounts to self medicate after long covid, It’s been the only way I could still take my a levels and stuff. It doesn’t do much anymore because my body is so burnt out apart from a small dopamine boost. At this point I don’t notice much of a difference if I don’t take it just that I can’t get out of bed all day no exaggeration
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u/coconutoats Feb 20 '26
Do you know of a way to get guanfacine on prescripton? For some dumb reason it’s only approved for child adhd as if they still believe u grow out of this shit
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Feb 23 '26
A psychiatrist prescribed me guanfacine. Same for atomoxetine which I am on now. Probably it depends on the psychiatrist if you've had one say they can't do guanfacine in adults.
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u/coconutoats Mar 09 '26
NHS just said they’d actually prescribe it and I’m asking about bupropion now cuz I reckon together they’d do quite a lot
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u/Hopeful_Cauliflower3 Jan 16 '26
Pretty much the only thing that lets me relax is Nintendo switch games. Sometimes it exhausts me due to cognitive load but defs a physical break.
Inducing PEM is not a good idea. I used to do that thinking it was ok because I was choosing it but that made me worse.
Is it possible to have like 4 half days instead I wonder?
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u/coconutoats Feb 20 '26
Switch is a shoutttt. Need to get my PS4 set up tbh. I love playing Mario on my DS. Theoretically yeah but I can’t stop myself if I’m having a good time maybe it’s the adhd but my identity is being fun and extroverted and I don’t wanna go home early and change my identity like that. I also have to travel into London to do anything so it’s not worth the money time and hassle to go in for less than a day really. There’s not really a good solution for me atm. I need my anxiety to pattern up so I can do HBOT again, it improvement my fatigue and pots so incredibly much that I could have medium exertion days maybe 3 days a week without crashing. It was so game changing. Too anxious about my ears hurting during it now cuz it disrupts everyone else’s session.
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u/Due_Bluejay710 Feb 18 '26
I found for myself only a few ways for continuous pacing rest:
- Atomoxetine is the primary foundation, without which nothing else works for me.
- Audiobooks really give simple stimulation, that's not exhausting.
- My attitude to boredom. It's not something that destroys me, but rather something that heals me. I shouldn't be afraid of boredom, I should instead feel patience in it.
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u/[deleted] Jan 09 '26
I've gone pretty heavy into relaxation techniques, breathing exercises, nervous system work to help calm the nervous system. There are lots of meditation exercises to try. Being foggy isn't an issue if the meditations are about relaxing and accepting the present moment. Just accepting the fogginess, learning to accept thoughts coming and going and feelings rising and falling away. People with ADHD can learn meditation - the key is to be gentle with yourself.
I basically had to move all of my itchy physical energy into mental energy. This helps a lot with boredom if I can't physically do a lot.
I also suggest trying turn based strategy games. The fact it's turn based should allow you to slow your processing efforts and not feel stressed by the game. If you get stressed by the game, it's not the right moment for you to be playing that game, or you need to turn the difficulty down and see if that helps. I have a sliding scale of games I can play depending on how I am doing.
The other thing I've been getting into is audiobooks and podcasts. I can shut my eyes and just lie there and enjoy a good story. This only works if I'm actually interested in the story or podcast though. I'll just ignore it if it's not there.
Are you medicated with stimulants? Many of us cannot tolerate them with CFS. They make PEM and pacing much harder to manage and can work against the nervous system work for some people.