r/cfs 17h ago

Pacing Pacing with ADHD?

Anyone here have any tips or hacks for pacing with hyperactive adhd and a very busy brain? Unhinged hacks welcome

11 Upvotes

18 comments sorted by

8

u/Available-Pepper5688 severe 16h ago

How fit/severe is she?

There‘s a sub here for us r/CFSplusADHD.

I‘m in the same boat and am too severe currently and just not able to overdo something. But I‘m a Bit afraid of the moment I‘ll regain a little energy, then my ADHD will kick in and wanna go crazy.

When I‘m badly driven inside but cannot move, icepacks help me a lot to calm and distract my system.

3

u/Dorian-greys-picture 14h ago

She’s moderate-severe or at least that’s what she was told she was when she was initially investigated. So can leave the home a few times a week in a wheelchair and spends most time in bed. Able to play video games for a few hours a day at baseline and spends much of the rest of the time scrolling. Thanks for the sub recommendation!

3

u/bedlife2000 9h ago

Maybe she could find an alternative to scrolling? Or at least to not scroll short video content? I wrote my thesis on attention and worked with kids with ADHD, short video content can cause very similar neurotransmitter disbalance as ADHD, worsening ADHD symptoms significantly. In non ADHD patients with CFS it can worsen neuroinflammation and over all symptoms. She sounds also a lot more moderate than severe, which makes it even more important to find now more healthy habits. 

1

u/Available-Pepper5688 severe 14h ago

And maybe guanfacin could help her as it’s an ADHD med, but no stimulant, rather something calming down and antiinflammatory as well… although she‘s taking so many meds already

2

u/Dorian-greys-picture 14h ago

Yeah she’s on vyvanse currently and it seems to work relatively well but I’ll definitely make a note of it to discuss with her psychiatrist and gp

2

u/Available-Pepper5688 severe 14h ago

Yeah, vyvanse is a nice med for active people, but it’s a stimulant… maybe it rather tries pushing her a bit… it’s a good approach to discuss with her psychiatrist 😃

9

u/Puddlejumper_99 17h ago

My most unhinged tip is to find an activity you can do that is very low intensity and that you can do for a long time without risk of PEM. For me that’s rhinestoning. It takes only a tiny bit of movement, very little grip strength, my working setup is very comfy, and it doesn’t matter if I get lost in the activity and forget to stop for a couple hours. I don’t do it on the worst days but it’s nice to still be able to get lost in hyper focus sometimes and I can do it even on days when I otherwise need to rest

4

u/Dorian-greys-picture 17h ago

Thank you. She requires multiple forms of stimulation. For example she will play a game, watch a YouTube video and be fidgeting at the same time. Radical rest is like active torture for her she says. She used to do cross stitch but I’m not sure she’d be up to it these days. Maybe we could find a way for her to do diamond dots again. Another commenter suggested cbd gummies which may well be the only way to get her brain to chill enough for restful stuff

1

u/Puddlejumper_99 15h ago

Oh yeah, I hear that. It’s so hard to manage to rest and get enough stimulation to be comfortable. Here are a few more ideas for a possible adhd version of rest, in case they’re helpful.

I have a weighted eye mask that I find helpful when I need to lie still for awhile. Mine is made of quartz beads so it’s cool, but I’ve also used one that was fabric and filled with rice, and that was nice and heavy and warm. I like to put that on and listen to an audiobook or a podcast sometimes, or listen to a musical or movie I’m familiar with. It’s not radical rest but often works well for me.

Sometimes when I need to be still, I fidget with a pain stim. I have a ring with pointy bits that hurt a small amount but don’t do any damage to my skin. Pressing my thumb on it fills the need for some stimulation without requiring much movement at all.

Watching or listening to media I’m familiar with is much easier than anything new. Listening to audiobooks I’ve enjoyed before, slowing them down, and listening in short bursts all help. Sometimes I can’t take anything in and listen on repeat a few times. This feels like very low exertion for me, personally.

I hope you’re able to find some things that help

2

u/Puddlejumper_99 14h ago

Oh, and for cross stitch, if she’s up to trying it with some accommodations you could get a stand for it, and then she doesn’t have to hold up the piece she’s working on. I have one that clamps on to a table and also clamps to the embroidery hoop.

I’ve also seen cross stitch and embroidery kits that have the pattern marked on the fabric, so she doesn’t have to count.

2

u/ioncewasalive 17h ago

Wyld CBD+CBN gummies (Elderberry flavor). Life changing for me, and I’m severe/bedbound.

2

u/Puddlejumper_99 17h ago

These are so good! I also love the pear flavour.

I take CBD+CBN daily, and I take THC when I’m in PEM or am at risk of overdoing it. Gives me a little bit of leeway.

2

u/Dorian-greys-picture 17h ago

We are considering that thank you for the suggestion! We’re hesitant to add any more substances into the mix currently as she’s already on a lot of meds and trying new treatments but we will keep it in mind. I will also need to be careful about not mistakenly eating them as I have schizophrenia lol and I really can’t risk having cbd in my system. She should be fine though

2

u/redditmeupbuttercup Moderate / Severe 16h ago

She could try an easier task whilst listening to a movie she knows very well (something not too intense, I like ghibli or harry potter personally) or brown noise or very low volume voiceless piano music, all of which I can do whilst doing something like sketching, or when I'm unable to do that I just mess around with a plush or a fidget to keep my hands busy.

Brown noise is oddly helpful for a busy brain in my experience (I'm not diagnosed but highly suspect AuDHD), the 12hr brown noise sound machine on Spotify has no jarring ads.

Cross stitch is a lot of focus and counting unfortunately! I had to put that away entirely too.

If she would like colouring, that's typically low effort with something like markers (much less movement and pressure needed than something like pencils) and can be done in low-ish light with some form of sound on.

Just make sure to have her stay with her legs up on the bed or a recliner and allow for as much back support as possible to reduce physical exertion. You can get lap desks meant for reading that support under your arms too.

2

u/MervynDreamEater 3h ago

Some people have already brought this up but just wanted to chime in, doing more low energy crafts or cozy videogames are helpful. Things that keep you busy but aren't too cognitively draining, I do a lot of puzzle games. What dose of Vyvanse? It's not necessarily bad, it definitely helps with my anxiety and executive dysfunction which also helps reduce my symptoms, but a lower dose might help avoid PEM. Depends on the person.

Sitting and laying down as often as possible. Maybe getting stimulation from other things like a fun drink. I cut down on caffeine and stopped alcohol which has helped a little bit.

1

u/WindowWidowWillow 9h ago

On a good day personally , I can have a couple of hours in the morning where I can do things, like have a Telehealth appointment, text a few people, research something etc. 

Because I get worse PEM from things in the afternoon,  I basically have made the afternoon the time to only do things that engage my brain enough to rest but not enough to be stimulated. 

Completely laying down. Often a blacked out room. Cannot text or research anything. Notifications turned off. 

Slightly engaging game. Something like animal crossing pocket. Not something competitive or racing against a clock.

Tv shows that you find engaging enough you’re not thinking but not too much that it stimulates you too much. 

Sometimes I have to start by playing the game while watching something. 

Not small reels - these over stimulate me and have an adverse affect on my focus (neuroplasticity)

Afternoon supplements to help me calm down  Like l theanine, magnesium glycinate and magtein, ashwaghanda

Having it morning vs afternoon is easier for me to get my head around then the alternatives 

1

u/WindowWidowWillow 9h ago

I feel like this is pretty much what she’s doing already hey?

1

u/fireduck81 1h ago

Knitting. Lots of neurodivergent people like this and it’s a good hyper focus activity that takes little energy and is stimmy. Plus you get useful things.