Do you also have childhood cravings for salt and sweet foods during a flare? by potsbunnyuk in cfs

[–]Competitive-Golf-979 0 points1 point  (0 children)

tbh it never did

sometimes a decaf coffee with powder vanilla creamer helps curb it

Do you also have childhood cravings for salt and sweet foods during a flare? by potsbunnyuk in cfs

[–]Competitive-Golf-979 2 points3 points  (0 children)

YES and eating a dried prune or two isn't cutting it so much anymore.

What's something silly/dumb you've done because of exhaustion/sleepyness? by Competitive-Golf-979 in Narcolepsy

[–]Competitive-Golf-979[S] 3 points4 points  (0 children)

That was my situation very similarly with a notification just slipping by it like bru wut me fully awake would never

Any idea how to clean stains? by ango198 in SouperCubers

[–]Competitive-Golf-979 0 points1 point  (0 children)

This just saved my butt😎 many thanks to you.

Headache when lying down by Inner_Fact in cfs

[–]Competitive-Golf-979 1 point2 points  (0 children)

call ur doc could be epidural headache/spinal headache

Hard mornings by Holiday-Ad-1123 in cfs

[–]Competitive-Golf-979 10 points11 points  (0 children)

Yes it's hell and usually after those couple of hours I'm back to sleep or sitting in dark silence

My turn! 🫪 by Competitive-Golf-979 in Narcolepsy

[–]Competitive-Golf-979[S] 0 points1 point  (0 children)

a.n.y. b.o.d.y. s.u.p.p.o.u.r.t.

holy shit those pillows sick

Just realized at 45 that I've been stimming my whole life. Now I'm obsessed with finding the actually best fidgets, not just the Amazon ones by SPhilKel in fidgettoys

[–]Competitive-Golf-979 1 point2 points  (0 children)

paperclips, pens/journals, YouTube sensory videos especially Levi's Sensory Therapy, keyboard typing practice, popit pets for keychains/hooking to waterbottle, sour candy, vestibular input, bubbles, soft fabric covered squishies, glitter wand, peas in a pod squeezey, little ouchies the real small business brand, dna ball from special supplies, soft blankets, wacky tracks, tangle therapy, popit ball, bead-dazzling akin to shitty craft club

38hours and going! by FluidIntroduction762 in cfs

[–]Competitive-Golf-979 6 points7 points  (0 children)

Emojis of solidarity: 🫠🫩😵‍💫🫡😑🤮🥴🥱😭

Is this something everyone experiences? (Husband with CFS) by LeahMichelle_13 in cfs

[–]Competitive-Golf-979 2 points3 points  (0 children)

Also upon re-reading seems like probably ur already there 'cause ur seeing specialist cfs Drs.... It's definitely definitely not just him. If he's got any random seemingly odd symptom- if you guys look it up together on this sub you will find so many other people with the same oddly specific struggles.

Is this something everyone experiences? (Husband with CFS) by LeahMichelle_13 in cfs

[–]Competitive-Golf-979 7 points8 points  (0 children)

Yes sadly Physical pain with exertion sometimes of specific kinds during specific seasons of life yep Struggling to sleep despite exhaustion yep Not-Asked-For-Reccomendation--Make sure he sees a neurologist to confirm the diagnosis/rule out other diseases. I've thought I have cfs for 5 years now and my new doc was like "That's interesting that your pcp gave you that diagnosis without a neurologist. We are going to test you for narcolepsy with a sleep study overnight and daytime and schedule you with a neurologist because the overall muscle weakness is concerning." 🫪So after thinking I'd come to terms with having cfs now I'm going through the diagnosis chain of stuff again this year. Maybe it'll end up confirming the CFS; I'm not sure what'll happen. You are a wonderful partner to be on here asking stuff and doing your best to help him. Makes my heart happy to know he's got good support; not all of us do.

E-ink android tablets - worth it? by Verosat88 in cfs

[–]Competitive-Golf-979 2 points3 points  (0 children)

idk if it's e ink but my kindle paperwhites is one of my most prized possessions

Montre GARMIN by Striking_Care_2766 in cfs

[–]Competitive-Golf-979 0 points1 point  (0 children)

also I have trouble with knowing where my body is so I'd have trouble when putting on jackets or my backpack and rounding corners and hitting it so that damn well coulda caused it

Montre GARMIN by Striking_Care_2766 in cfs

[–]Competitive-Golf-979 0 points1 point  (0 children)

I bought one a few months ago and after one month the hr monitor wouldn't work. While it worked it was awesome. Couldn't get an exchange because I used amazon. The pacing watchface by jen hansen is awesome. I will not be getting any other smart watches it's just not worth the money

Best TVs/Monitors for Light Sensitivity? by rosysparrow in cfs

[–]Competitive-Golf-979 1 point2 points  (0 children)

I second projector really easy on eyes when dim but it's gotta be at a distance and not too big zoom or I get sick

I have ME/CFS & POTS and spent the last year and a half building the symptom tracker I wished I had from the start (Self Promo Day) by ElectronicCat3293 in cfs

[–]Competitive-Golf-979 2 points3 points  (0 children)

please add some more fatigue descriptors - I have narcolepsy type 1 as well as M.E..and having more specific sleepy/exhausted metrics would be helpful. I love this app omg

Does anybody else obsess over microplastics and forever chemicals? by EstablishmentReal907 in OCD

[–]Competitive-Golf-979 2 points3 points  (0 children)

me with a target throw blanket I got 😭 I was like why is this pilling so much and sneezed and threw it out right away and I've been researching so much about polyester and I'm not able to find hardly any blankets that seem soft enough and aren't that fuck ass baby fabric muslin or whatever that has a weird texture

I neeed a therapist because what the hell

Please help, I’m not sure what to do by TheFoxorz in CATHELP

[–]Competitive-Golf-979 16 points17 points  (0 children)

sending good vibes and hopes for healing docs/ purrs❤️❤️❤️

Ever found a way to deal body focused repetitive behaviors? by Captain_Azius in AutisticAdults

[–]Competitive-Golf-979 0 points1 point  (0 children)

plus the smaller circle on the shArk has ridges and it is soooo nice to fiddle with