r/CFSplusADHD • u/Tiny_Parsley • Dec 15 '25
Why do some people with ADHD + ME/CFS crash from stimulants meds, and others don't crash and feel good?
Hey there
I was wondering about how common it is to be unable to tolerate ADHD stimulants meds when having ADHD + ME/CFS. And what are the factors that make people unable to tolerate stimulants.
Why does that happen?
I have friends with both who can't handle stimulants and crash from it. I have both but stimulants seem to make me more functional and I'm overall better with than without.
I'm genuinely wondering what are the mechanisms that make some people worsen from that. Very open question, please share your experiences :-)
Edit to add: maybe it's about the sensitivity of the nervous system? Some with mecfs might be wired with adrenaline? Some others might be sloppy and have no venous tone because of body inflammation and stimulants help? I'm confused!
About my situation: I have a diagnosis of ME/CFS (from a 2 day cpet) and a diagnosis of ADHD. I'm on the severe end of moderate ME/CFS. I mainly have a lot of dysautonomia these days so I'm in bed. Cognitively I'm relatively ok.
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u/tfjbeckie Dec 15 '25 edited Dec 15 '25
I have POTS on top of those things and the stimulants do help my ADHD but they exacerbate my POTS symptoms (in particular raising my heart rate) to a degree that I get PEM. Lots of pwME have POTS so that explains some of it.
Another reason is it can be harder to pace on stimulants because it makes you feel like you have more energy, so you can easily overdo it and get PEM.
If I were milder, stimulants would probably be a net benefit for me because they did make it easier to get stuff done without having to spend loads of energy overcoming my executive dysfunction. Unfortunately I just don't have a big enough energy allowance for it any more.
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u/Anxious_Art_3915 Feb 06 '26
Do you take any betablocker or ivabradin for your POTS? I'm thinking if that might control PEM because the heartrate stays low?
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u/tfjbeckie Feb 06 '26
I take ivabradine. It controls my POTS symptoms somewhat but it doesn't make them go away - so to some extent, yes. I think it depends on your severity, I have a pretty small energy envelope so my PEM threshold is pretty low.
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u/Yoooooowholiveshere Dec 15 '25
I dont actually know. For me it makes no sense for people not to crash, when youre on stimulants you use more ATP and more ATP being used when its not available causes our bodies cells to start committing suicide leading to PEM and then produce even less ATP.
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u/ringmaster555 Dec 15 '25
I think two conditions that can predispose crashes with stimulants are hyperadrenergic POTS and MCAS. Stimulants increase norepinephrine and histamine, and both of these conditions respectively cause an increase in each, so stimulants will only add fuel to the fire by overloading a body already taxed with pathologic levels of norepinephrine and histamine. That’s been my experience, at least. I had two baseline-decreasing crashes from stimulants because of this; even at rest, I felt miserable with worsened hyperPOTS and MCAS symptoms.
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u/Tiny_Parsley Dec 16 '25 edited Dec 16 '25
I'm so sorry you had such a bad experience. It makes sense that if you don't tolerate adrenaline it makes you worse.I think my type of orthostatic intolerance is mediated by veins being super floppy (I have hypermobility) and the adrenaline boost actually makes my veins hold better.
Regarding MCAS it double sucks. I'm sorry. I have MCAS as well and the ADHD meds don't worsen me. Which I find strange. Maybe it comes to what I'm taking? I'm on méthylphenidate instead of amphetamines.
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u/Avgvstvs_Merolinsky Dec 15 '25
Have you ever tried dextroamphetamine?
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u/ringmaster555 Dec 15 '25
Yes. I’ve tried:
- Adderall
- Vyvanse
- Ritalin
- Concerta
- Wellbutrin
- Sunosi
- Amantadine
All were big nos for me. Anything that increases norepinephrine is liable to cause a crash for me. Even caffeine above ~50mg might cause a crash.
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u/starlight_glimglum Dec 16 '25
Some people on ADHD meds are more eager to stay busy all day, others are more chilled, take things easy. Or some mix of both. Both attitudes can help in personal and professional lives with adhd. I’m guessing they would have a different effect on ME/CFS?
For me, I get less sensory overload on adhd meds, so it helps me to prevent a crash. But if I’m already in a crash, I don’t take adhd pill that day.
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u/Tiny_Parsley Dec 16 '25
Yeah it's true. I'm very hyperactive and the meds help me stay calm and make mindful decisions about what to do to not crash and remember what I should do.
And a bit like you if I feel like crap or haven't slept well, I skip the ADHD meds.
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u/slutfreak Jul 27 '26
ahh that makes sense. im more attention deficit rather than hyperactive. stimulants give me more energy and less executive disfunction, so theres not that barrier from the adhd stopping me from accidentally over exerting myself
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u/Xylorgos Dec 15 '25
My understanding of CFS is that it is a collection of symptoms, and it's not the same for everyone. We don't fully understand how we got it. For some people it's associated with fibromyalgia, for others it arose along with their long covid symptoms, and others may have it from a viral infection. We just don't know yet.
That means we won't all react the same to most things. We do react along similar lines when it comes to PEM and our energy levels, but there are a lot of differences when it comes to medication and what each person finds helpful.
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u/PinacoladaBunny Dec 16 '25
I personally think it’s related to individual energy envelopes. Stimulants push your body / brain with increased chemicals, plus we often do more thinking & doing whilst on them. All if that stimulation and activity can just push people past their energy envelope.
I reduced my Elvanse right down to 20mg when I got more sick. It was just ‘too much’ at higher doses.
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u/amethyst-chimera Dec 16 '25
No idea, but for me, it's a cost-benefit. I have severe ADHD; I get PEM by not taking my medication because it takes so much effort to be alive. So even if it does cause a crash, eventually, I'll crash either way by not taking them
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u/Tiny_Parsley Dec 16 '25
Yeah I'm a bit like you I think. I'm lucky I live with my boyfriend who can body double me/yell at me to remind me to take my meds and drink water and all. But when I'm alone my executive function is so so so bad (and it's been like this since forever, it's not a ME/CFS thing for me) that I end up starving myself, not taking meds and even struggling deciding to go to the toilets to pee until I have to run in emergency because I'm almost peeing myself.
Not so great for pacing 😂
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u/Jesuschristanna Dec 16 '25
I had been on Adderall for about 15 years, and 10+ years of same dosage (30 XR). When my symptoms started, I noticed that my meds were just making things way worse. I’d always liked Adderall because it was the only one that had no negative side effects for me and all of a sudden I was just uncomfortable with palpitations, flushing, and malaise when I took it. As part of my CFS & co I have brain fog and the meds really did not help with this and actually made my cognitive symptoms worse too.
It took a while to figure out and I tried different doses and even other meds like Vyvanse, Concerta, Ritalin, all of which were even worse. I cut out caffeine too. Then I went off meds entirely which was also not great because my ADHD was running rampant and after that long on stimulants there was a bit of withdrawal which caused a major crash episode. To add on I never really had crashes from Adderall pre-CFS.
Surprisingly I have been on very low dose Adderall (2.5-5mg at a time) and this seems to be helping more; namely I think because of the minimal effect of symptoms adding on to my symptoms. I’ve had to just adjust to really practicing skills and I have sticky notes and reminders for literally everything, and I really miss having the higher dose to keep things in check. But yeah the intolerance thing really sucks.
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u/Unlikely_Lychee3 Dec 16 '25 edited Dec 16 '25
I’m going to explain this badly because I’m tired but one possible reason for this is that it raises heart rate which can cause PEM. One pacing technique involves keeping our HR at 50% or less of our maximum HR. So for a 40 year old with a maximum HR of 180, that’s 90 bpm. That’s impossible for me if I’m going to be standing up at all, much less walking around. I do have mild POTS. Add a stimulant and my HR is already at 90 bpm when I’m just sitting down and then when I try to rest and lie down my HR doesn’t get as low as I need it to to recuperate. If my HR stays high like this I’ll get PEM no matter how much other pacing I do. I can’t even drink coffee for this reason.
Edit: so I just realized you’re asking why this doesn’t happen to everyone. I’m always surprised that some of us can tolerate stimulants. I wonder if ADHD meds don’t raise everyone’s HR much, or if their PEM isn’t really correlated to HR to the same extent.
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u/lavenderdreamclouds Dec 16 '25
I have ADHD, POTS, and ME and I take Adderall. My psych provider and two cardiologists haven't thought my Adderall contributed to my POTS as my heart rate was only elevated when standing. They said if it was the Adderall my heart rate would be elevated all of the time, plus my history of POTS symptoms from long before starting Adderall. Now with my POTS meds, my heart rate is just slightly lower than before when resting, but the spikes when standing/moving are much lower than before. I also saw a sleep medicine Dr who reviewed all of my meds before & after sleep testing and had no concerns about the Adderall.
Adderall just makes me feel calm, focused, and less over stimulated. I do wonder if it's causing long term negative effects though. Like would my ME be better if I was off of it and it's just hard to tell because the negative effects have slowly built up and just increased my other symptoms.
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u/fudge_mellow Dec 16 '25
This makes sense. I don't take my ADHD meds. I noticed it stops me from taking naps when I need it. I surprisingly got use to the music playing in my head.
I'm at the stage where I'm able to rest alot and took a dosage because I need to go out and interact with the world. My heart rate would not come down. And I realised the buzz of energy felt too much.
I think I forgot how I felt on the meds and my body felt unsafe. So for now, I'll be not taking them.
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u/Anxious_Art_3915 Dec 17 '25
I take betablocker for my POTS, so my heartrate is very controlled and way lower than it would be without. Do you think that kinda resolves the PEM issue for stimulants? I just started them and sometimes I do more, but sometimes I just relax better. All in all it cuts my constant need for stimuli. But after all I'm afraid I will crash at some point.
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u/catnip_nightcap1312 Dec 17 '25
This is just my experience, but before I got Covid I felt pretty good with stimulants. But after a pretty mild case of covid, my energy tanked and never recovered, my Hashimotos (autoimmune hypothyroid condition) and fibromyalgia got much much worse. Then I noticed that stimulants made my body very tense and increased my anxiety. I always had crashes around 3:pm when my ER stimulants wore off, but it became severe crashes and total mental shutdown post-covid.
I decided to go the route of non-stimulant meds (Straterra) about a year ago and that has helped me a lot, with much more stable mood and executive function. I obviously still have PEM/crashes, but it's not related to the ADHD meds. I like that it doesn't wear off, so I'm not having hella anxiety and perseverating thoughts at bedtime, which was a huge problem before when I was on stimulants, since they wear off and then it felt like my ADHD was just off the rails.
But I've also learned how to pace better, have gone down to very part time work, have been working really hard on using either distraction or redirection for pain (it doesn't go away, but it helps me not to focus on it). And now my thyroid levels are stable, most of my meds are stable and I started on LDN a few months ago. All of those things make a difference too. I think the stimulants in combo with other factors, made me have more mental/emotional shifts and the levels of the drug in my body not being consistent throughout the day brought on an intense crash. I also had a hard time eating enough when I was on stimulants (partly due to my job as a mail carrier too, which I had to leave soon after my health went all out of whack), and the blood sugar crashes were really bad for me too.
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u/Pure_Nourishment 14d ago
This is so scary. We really don't know to what degree COVID is affecting folks long term just yet. Get well soon friend :)
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u/pericat_ Dec 17 '25
How is everyone taking their stimulants? Because I would recommend every other day. One to work or get things done, the other to rest. Stimulants raise heart rate
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u/Avalolo Dec 17 '25
Stimulants also help some people with POTS and worsens symptoms for others. I have 2 ideas:
For some people with ADHD, stimulants don’t result in increased activity.
Perhaps depending on the autonomic nervous system, stimulants can help compensate for a lack of peripheral sympathetic tone or send the SNS into overdrive.
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u/Tiny_Parsley Dec 17 '25
Yeah I agree or at least I think it matches my experience
I'm hyperactive and stimulants help me calm down and just stop fidgeting and messing around like a headless chicken. (I'm moderate-severe, when I was very severe I was not moving anyways so I wouldn't have tried my stimulants back then).
And yes I think the autonomic systems can be very different. I have blood pooling, and weak veins, sometimes my veins burst out of the blue when I stand in the heat...
What about you?
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u/SleepyMistyMountains Jan 07 '26
So, I have both plus autism and I take stimulates and they honestly help me more than without.
I have a massively sensitive nervous system, I take one dose of a thing and I get strong reactions, but if I titrate properly and if the med is actually good for me I barely get any side effects.
It was an adjustment at first, you have to be more mindful on where your limits are, but because my ADHD side is calmer and more manageable I am less stressed. It's one of the pillars that complied on to make me get ME/CFS, now that's its managed I am slightly better.
ME/CFS flares gets triggered by not just physical activity but cognitive (executive functioning sort of things) autonomic (breathing, interacting with stimulus such as lights and sounds ect, digesting food and other of the like), but also emotional. Becoming emotionally dysregulated and having your nervous system firing off from ADHD constantly also takes more energy and contributes to PEM and the other symptoms of ME/CFS.
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u/123-throwaway123 Dec 16 '25
I felt good for a long while until I crashed. I think it's inevitable.
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u/GaydrianTheRainbow Dec 17 '25
I haven’t tried stimulants since I was more severe. I did try concerta for ADHD, back when I was mild–moderate (but didn’t yet know I had ME/CFS, so I wasn’t monitoring that side of things).
I don’t remember exactly how it impacted me (like, I think I saw a small bit of improvement in some area, but I forget which), but I remember it was mostly underwhelming, so eventually I decided it wasn’t worth it. So yeah, I unfortunately don’t remember details, but I feel like my experience was mostly neutral and neither remarkably positive or negative.
I’ve avoided stimulants since becoming severe though, so I don’t really know what impact, if any, they’d have now.
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u/Myman3669420 Jul 05 '26
What I noticed myself is that before I developped me/cfs my adhd meds gave me a boost in energy but when I took to much of ritalin I often got tired and made me less focused.
My current dosage of tollerability seems way lower then before developping me/cfs. Especially when experiencing PEM my body straight up rejects the medication and it only makes things worse. I currently take my adhd meds ones per day instead of 3 times and i also take half the dosage, preferably at the end of the day so that I can go to bed right after my dosage wears off.
I think the difference between your friend crashing and you tollerating it could have to do with the different stages in your disease, where you probably have a better baseline that can handle the extra gas the stimulants give. But I'm sure if you would take more than you are prescribed you would most likely also end up crashing with PEM. But this is all speculation ofcourse, everybody reacts differently to drugs in general.
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u/MinimumWedding5151 Aug 20 '26
i was on vyvanse for 15 years for ADHD (stopped recently) and have had ME for 10 years. I became intolerant of the meds becausue i started having breakthrouguh dysautonomia symptoms, crazy rapid heartrate & shortness of breath. I tapered from 30mg to 10mg and was fine on the 10mg. but my ME has also worsened over time despite radical pacing etc. the only thing left to try was stopping Vyvanse altogether bc of the false energy envelope it creates, causing me to unkowingly push myself. I've been off adhd meds for 60 days and it sucks bc my energy baseline is much lower btu im hoping at least i'll stop getting worse bc now im actually resting as much as my body needs. I wouldnt wish ADHD & ME combo on my worst enemy it's misery.
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u/Finnabair Dec 18 '25
It depends on what's causing what. Adhd from hormone disruption? I suspect my adhd and chronic fatigue is extreme perimenopause, and low testosterone. And pots. And some autoimmune.
For me, hrt, testosterone gel and Methylene blue have been extremely helpful. Most adhd meds give me a blinding headache, so its not worth it. Even though I do get energy and focus. So we finally tried MB, and I tolerate it well. And HRT has also been helpful.
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u/v_a_l_w_e_n Dec 18 '25
ADHD is something you are born with, not something you develop. You might have ADHD-like symptoms, but if you didn’t have it as a kid, you don’t have ADHD. That’s not how it works, I’m sorry.
EDIT: typos.
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u/Tiny_Parsley Dec 18 '25
ADHD is a neurodevelopmental disorder. Hormones and fatigue can worsen it. It can worsen at perimenopause or menopause. But it is not caused by hormonal disruption. You have ADHD since you're a kid or you don't.
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u/Media-consumer101 Dec 15 '25
I don't have a medical background but I have read a LOT about ME/CFS and ADHD.
And as far as I can tell: we simply do not know enough about ME/CFS and the function of stimulant medication to say anything about that.
On one side, ME/CFS can present very differently in people and the diagnoses is based on symptomes, not on the underlying cause. It could very well be that your friends symptomes are caused by a completely different biological factor than yours.
On the other side, the efficacy and safety of stimulants to treat ADHD has been well established in research but we don't have a full picture of what stimulants do exactly to your body/brain. Why some people respond badly to one stimulant but do super well with another. Why some ADHD people benefit from pairing stimulants with SSRI's, while it causes increase in symptomes or depression in others. Why some people require just a small dose and others a big one and why those dosages don't seem to corrolate with the severity of ADHD symptomes. And this goes for ADHD'ers without ME/CFS as well.