If you have other diagnoses besides #MECFS is there one that’s particularly bad in combo with ME? There’s some stiff competition with dysautonomia, MCAS, PsA, but for me I think it’s the autism+adhd They make it so hard to lie still and do nothing. My brain does not turn off.
Yep, ADHD and autism with ME is a particularly cruel combination. My PTSD and anxiety do also cause issues but by no means as bad.
For a while I had almost daily tension headaches, which I think really lowered my baseline. These were resolved by getting braces. Although getting braces also lowered my baseline.
ADHD and Autism do seem like a brutal combination with ME/CFS. Seems like it would be like getting pulled in opposite directions.
Which is why I’m on here. Choosing my least worst activity. When I can’t choose the best activity (lying in the dark, staring at the wall) I try to choose the least worst. #MECFS
ADHD + me/cfs w/a dash of random PTSD triggers thrown in for flavor can make for one hell of an uncomfortable soup to stew in. Especially now that I can’t take ADHD meds b/c they don’t play nicely w/the meds that help me stay awake during the day. I’m living in the land of least bad choices 🫠
Ugh, I’m sorry. It’s such a hard balance.
i have similar ME/CFS + autism + CPTSD - i think the ME/CFS wouldn't have taken me down so hard if i didn't have a lifetime of abuse and related stress to try to handle. now homebound and struggling with trying to balance meds for pain that don't exacerbate brain fog and PEM.
I think in a weird way I was lucky, by the time ME made me housebound I’d had many years of good therapy for CPTSD w/EMDR for a couple of things & had been off of daily meds for a few years. I’d also had 18yrs of mild/mod ME & FM so I’d been through the grief before & knew what to do It still sucked
Same here. Lisdex and dex both help my brain pipe down a bit.
Got IIH ,too. It's really hard.
My suspicion is that outcomes are likely worse for ME + EDS as opposed to ME alone.
Agreed. So many paths to worsen ME or its co-illnesses. The CCI only compounds things if it’s not the instigating cause to begin with. I’m finding I get more dislocations as I get more severe. Suspect because of losing muscle mass, but it’s not like I can exercise 🤦🏻♀️
ME/CFS, among the bundle of joys birthed by Long Covid, does not at all play well with my Inattentive ADD (and I'm consciously leaving out the "H" mainly b/c right now I could really use some H with my ME). Similar to your experience, my I-ADD wasn't diagnosed until I was 48.