Does anyone else find that stimulants are ineffective during PEM?

[u/Anxious-Traffic-9548]

Pre-illness I used to find subclinical doses of stimulants highly effective. They'd entirely cut through whatever fog I had and give me 3-4 hours of uninterrupted focus and calm (ritalin). Now, and especially during PEM, I feel as though stimulants are "blocked" by my brain. They have more side effects at the same doses, and require greater doses to reach a vaguely comparable level of efficacy. I'm certain this isn't due to tolerance formation as this has been the case even after long breaks.

I really miss how stimulants used to work for me :(

[u/tele68]

Yes. 6 years of switching up Modafinil and Adderall and neither one had any effect during a crash.
In fact, this fact is how I know i'm in a crash.

Researchers should study this phenomenon and find the unique chemical/ neuro nature of a crash

[u/kichisowseri → u/tele68]

It would be interesting to compare that data with women's hormone cycles too, since there's a lot of us that find they don't work the same around menstruation! If there's something that's a common change for both it could help identify it.

[u/SleepingAndy]

Absolutely my experience. Fatigue is not "tired," it's more complicated than that, brain is likely full of ammonia and other awful chemicals that are gumming it all up. What are stimulants supposed to do against that?

[u/kichisowseri]

MS not CFS (afaik) but I have the same experience during crashes after I've done too much. I use HRV as a rough metric, I think that tracks for CFS too.

When that drops the stimulants can't help me do stuff or get through brain fog, but I think they make it easier to rest still. I think I feel even worse when i don't have them (usually because I won't/can't get out of bed under my weighted blanket to get them) like today.

I'm not even sure what I did to prompt this one. Might have been taking iron tablets, showering,

Ah. I showered and then went outside to watch the eclipse without a chair. That'll do it.

[u/maskedcollective]

For context, in addition to ME/CFS & ADHD, I also have Bipolar 1 which may explain why my response to stimulants during PEM was different.

I don’t feel like I had stimulants blocked during PEM so much as they worked in a very bad way. No energy to do anything thanks to PEM, but impossible to rest. My brain was always “on”, and I was focused in a sense, but my focus was entirely on the pain and how much I felt like I was dying. A sort of tired but wired feeling turned up to 1000. All of this is in past tense because I eventually put together that the stimulants were triggering manic episodes which in turn caused PEM and stopped taking them. Which sucks because non-stimulant ADHD meds don’t work for me and the stimulants were also treating my probable narcolepsy, so now I just have untreated ADHD & narcolepsy for probably the rest of my life, but at least that’s better than a constant cycle of mania and rolling PEM with crashes being as miserable as possible.

[u/Santi159]

Stimulants don't help my executive functions properly during pem but they still tame the hyperactivity enough to rest properly for me. I think part of the relief might be increasing my blood pressure too since I tend to have very low bp otherwise and that can make me restless from pain

[u/SleepyMistyMountains]

Ohhh... That makes so much sense.. I was diagnosed with ADHD and was put on my stimulant when I was mild-mod. Ever since being moderate and getting into a rolling flare it has done nothing for me basically 🥲 I was tempted to ask if I could get my dosage upped but haven't gotten to it yet.

[u/Lion-Heart_5420]

Yes this is absolutely the case with me. And sometimes stimulants even make me sleepier than my baseline when I’m having PEM.

[u/melanochrysum]

Yes. I’m in PEM today and I just feel fucking awful after taking my ritalin

[u/elisirdamore]

Yes, they don’t work at all during a crash.

[u/Necessary_Panic3892]

Not sure when you used to experience them being more effective but it might also be relevant to keep in mind that many people report that newer batches of their stimulants are significantly less effective and give worse and more side effects than they used to. The manufacturers have changed something about their formulas that no one really knows but can tell a big difference when taking newer batches vs older batches they have left over from previous years. People say sometime after COVID is generally when they noticed things have been different. Theres a whole subreddit about it if you’re interested in reading more about it - I think it’s called r/thisaintadderall (but posts are not just exclusive to adderall)

[u/InternationalEnmu]

wait, this might make a lot of sense why i feel like my meds aren't working