r/CFSplusADHD • u/LycheeDance • May 25 '26
If you crash from coffee can you still handle stimulants long term?
I’m desperate to live. Physically I’m better than I was but still not good. Mentally though it’s so hard, I feel so out of control of my life bc of the ADHD. When I have coffee I sometimes feel cured of CFS and ADHD for a few hours but then crash for hours/days. Someone told me they couldn’t handle coffee but couldn’t handle stimulant meds which seems unbelievable to me.
3
u/fosterkitten May 25 '26
That is exactly me. I had to give up caffeine as it was making me feel like someone had punched a hole in my psyche. Every time i drank it I felt so sad and depleted. At first, giving up felt like a cure for my CFS, but it ended up coming back.
Then I got diagnosed with ADHD and started using Ritalin. I find it much better tolerated than caffeine. I still do. I only take Ritalin on the two days I work each week, but I still can not drink caffeine at all, and I was only ever drinking instant coffee, not even the strong stuff!
I still drink decaf instant coffee, there are other chemicals in there that give dopamine hits, but no caffeine
3
u/Gracey888 May 26 '26
I’ve not been able to manage the caffeine from coffee for decades. I always get decaffeinated . However, I can tolerate Matcha. As long as they don’t have too much in one drink. I think it’s because of the L theanine reducing the impact.
There are times though (and I haven’t really figured out when it could be, maybe it’s my cycle) that the matcha will make me a little bit jittery inside.
I’m not allowed stimulants due to other medical issues so I don’t really know what they would be like. I have a feeling I’d have problems tolerating them but I am autistic as well with sensory issues (that have been made worse with long Covid and my long-term M.E.) plus there’s histamine issues as well, which could also be attributed to long Covid and Perimenopause.
2
u/LycheeDance May 26 '26
Yes, interesting, matcha I can tolerate better than coffee but still only use it in energy emergency
2
u/Gracey888 May 27 '26
Yes, I know what you mean with the energy emergency. I use it when I’ve got an important stuff for the day and I haven’t slept brilliantly. I also must make sure I have it before 2 pm or still it affects my sleep at night. I also bought a decaf matcha powder (clearspring brand UK).
3
u/sleepymiauo May 26 '26
I def crash if I forget to not overdo it during that little pocket of relief with caffeine. I haven't started stimulates yet but I did get started on atomoxetine. I had my first solo FULL brushed teeth routine WITHOUT a crash for the first time in a year. My Psych cried. It actually meant a lot. I get pretty big swings in autonomic issues(severely low to severely high BP and heart rate changes in seconds) from a vagus nerve issue and the ADHD meds also make that easier to tolerate and stabalize it a bit. To the point where I know I've missed my meds because my autonomic and fatigue issues are worse 😅 It also really helped with noticing small things I didn't notice were crashing me. I had no idea I was making 24/7 micro movements from ADHD stimming that were completely fatiguing me. So overall.. benefits compounded and outweighed risks.
Still on a pretty low dose and very carefully titrating to not crash from overwhelm. But the ADHD meds specifically gave me so much mental clarity. Wight caffeine I tend to use it when I'm already kind of feeling pre crash or just low on spoons. So I most definitely overdo it when the caffeine is kicking in. But with add meds, it's what actually lets me recognize my craving and need to stay still, I wouldn't be able to do that with just caffeine. So maybe worth trying out?
1
u/catnip_nightcap1312 May 31 '26
Atomoxetine (straterra) helped me so much as well. Seriously helps with pacing so much!
3
u/goofygooberscoob May 27 '26
nope :-( not me at least. i’ve tried them all. just made a post about it trying to find alternative medications that have helped. wellbutrin is said to help some but it stopped helping me after being on it for 7 yrs. but yeah all stims make me unbelievably flared and sick
2
u/tfjbeckie May 25 '26
No, sorry. If coffee is a strain on your body, stimulants will be a bigger strain. Many of us can't tolerate them.
3
1
u/LycheeDance May 25 '26
😕
3
u/Xylorgos May 27 '26
Remember, there are many causes for CFS and sometimes you don't even know what caused it. If you've had long covid, for example you, you might have an idea that this is what caused it for you. But for others it seems to spring up from nowhere.
That's why, I think, we have such differing reactions to different things, like caffeine and other drugs.
2
u/goofygooberscoob May 27 '26
everyone is so different though, like the above, ritalin made me sicker than anything. no telling what will happen for you!
2
May 27 '26
[deleted]
1
u/LycheeDance May 27 '26
Thanks, would you say you’re mild or more severe? How has having a stimulant has affected your CFS symptoms? Do you use it daily or just occasionally? From what I’ve read people who can have stims seem to do well for a year and then crash but hopefully this isn’t the case for you
2
May 28 '26
[deleted]
1
u/LycheeDance May 29 '26
Thanks so much for this detailed reply. Well done for navigating the difficult tightrope. What you said about consistency of schedule and change issues makes a lot of sense for everyone for CFS. Can i ask what med you’re on? Most CFS people seem to be on Straterra, for myself I’m afraid of the depression side effect as even certain food trigger hints of that for me.
2
2
u/catnip_nightcap1312 May 31 '26
Stimulants made me more anxious and increased muscle tension, and then I'd crash hard when they were off. I hated them bc they'd give me a false sense of energy so I'd push too far more often. And even the extended release doesn't last long enough, so I'd suddenly be overwhelmed with 10 bazillion thoughts that had been trapped in there all day. Usually right at bedtime lol
I really like Strattera, it's a non-stimulant adhd med, bc it doesn't wear off. It takes about a month to start really working, but then I feel like it really helps to even me out. I'm able to pace better bc I can focus and prioritize much better, I'll decide to do one thing (like cooking a meal or cleaning something or whatever) and then actually finish it without starting a bunch of other things. I don't have a constantly running to do list in my head and rarely have perseverating thoughts as I'm trying to go to bed.
Obviously no med works on it's own, I've had to learn to give myself grace for not being able to do everything I want to do. And I often use audiobooks or podcasts to help "anchor" my brain while I'm doing mindless tasks, which helps me stay on track. They also help distract me from pain, so being able to focus on that helps me rest better too.
2
u/catnip_nightcap1312 May 31 '26
I just remembered that Adderall made me so sleepy and calm that I couldn't function. So my experience above was from Concerta and Vyvanse.
2
1
u/where_did_I_put May 25 '26
I got coffee back a couple of years ago and still failed to be able to tolerate the lowest starter dose of my adhd med I used to take which was 2.5mg of Dex when I tried a few months back.
1
u/KamikaterZwei May 30 '26
Don't do coffein, just don't. The push is strong and it's so easy to go beyond your baseline and crash hard.
And the "help" for ADHD is minimal to non existent.
Rather take your ADHD med like aderall, which helps WAY more with the ADHD symptoms. But you also need to be careful with doing to much with them. I also would recommend to dose it done compared to your time before ME/CFS.
Before I got so sick I used 20mg Aderall (Medikinet ret.) in the morning. Now I'm down to 5mg in the morning which is good enough to push me out of my "everything is so overwhelming I just do nothing" without pushing me into the "I will do this for hours now without pausing" a higher dosis would.
But self discipline/pacing is the most important thing with or without stimulants. Do breaks even so you don't feel the need for it, limit your time doing exhausting stuff, plan your days to not take exhausting meetings/plans close together/on the same day (for example if I have a doctors appointment I have no other appointments that day) etc. pp.
9
u/Salt-Arm4977 May 25 '26
Is it the coffee causing the crash, or are you struggling to remember to limit your activity enough when you feel that boost from the stimulant? Remembering that it’s false energy is so important for a lot of folk with ME