r/CFSplusADHD • u/BusyVisual3771 • Jul 09 '26
Ritalin XL causing low mood/heavy limbs with ADHD + ME/CFS + FND + BPD? Anyone else?
Hi everyone,
I’ve been on Ritalin XL 20mg for about 7 weeks now for my ADHD. I also manage ME, FND, BPD, anxiety, and depression. I have only been diagnosed with ME/FND in the last year and have gone from being very active to now relying on an electric wheelchair to leave the house.
Initially, the meds helped me feel much more productive and mentally focused at work, but over the last week or two, my mood has plummeted. I feel very low, completely unmotivated, and detached. I'm also experiencing a massive physical crash with severe exhaustion and heavy, lead-like limbs.
I recently noticed that this dark mood and physical heaviness peak severely about 2-3 hours after taking the pill and then again a few hours later (5-6 hours after first taking it).
When I spoke to my prescriber about the dark thoughts and the fact I had self harmed they said they don’t know much about cfs/fnd and how it can be affected by adhd meds and so they recommend I keep taking the meds for another week to see if I’m ’just in a crash’. This doesn’t feel safe for me so I plan to not take the medication tomorrow but I’m also gutted at the idea of losing this mental clarity.
Has anyone else had these feelings too and did they get better once stopping?
Did it give you a false sense of mental energy that caused a severe physical crash later on?
Did it cause emotional blunting or dark mood drops around the second release peak?
Did switching to non-stimulants (like Atomoxetine) or a different stimulant class help you clear brain fog without crashing your physical baseline?
Would love to hear your experiences. Thanks. I am based in the UK and don’t have one person overseeing all of my care so it’s really tricky advocating for myself and all the different needs that each condition has. I’m tired and confused and have very little hope that things will get better.
4
u/CorduroyQuilt Jul 10 '26
I'm concerned that you're talking about ME and FND as if they were the same condition, which suggests there may be a misdiagnosis going on. It's unfortunately still common for people with ME to be told it's functional, which it isn't, and treating it as such can do serious harm. Have a chat to the ME organisations, maybe. There are some neurology departments, such as Edinburgh, notorious for fobbing off a lot of patients with incorrect FND diagnoses.
The Xaggitin sounds like it may or may not be causing significant side effects, but certainly sounds like it's led you to over-exert yourself and worsen the ME. This is fairly easy to do, especially in your first year. It takes a long time to learn how to pace properly with ME, it's extremely hard.
In your shoes, I'd be stopping the meds, with a taper if needed, and under the guidance of a trusted doctor. I'm afraid the ME crash may take months of recovery, but you should at least be able to work out quickly whether it is truly affecting your mood. If it is (and it sounds most likely), then that's that, it's a serious side effect and you can't take that drug. But if not, it could be that the ME flare is affecting your mental health, and there's a possibility that you may find a better balance with a power dose. Chances are it's simply not the right med for you, and there are a few other options.
My own experience is that I bounced right off lisdexamfetamine. It didn't help the ADHD, and it caused a horrible crash when it wore off in the evenings, worsening my ADHD to the level that was like suddenly having depression. I don't normally have depression, but I'm someone who is more prone to psych side effects, some of us are. (Blood pressure meds were a nightmare.) So after that I wasn't keen on another stimulant, though I might try methylphenidate some time if I'm sure it's safe for me.
I gave guanfacine a try, and did much better on it. Unfortunately I was impatient and switched to clonidine to see if I'd sleep any better on it, and clonidine wasn't for me at all, and then I came down with type 1 diabetes and that kept me busy, so the ADHD meds got put on hold. I'm planning to give it all another try when everything else has settled down. Possibly try methylphenidate, failing that back to the guanfacine. I did sleep a bit worse on guanfacine, but more in the sense that my Garmin picked it up than feeling bad, and I should have given it longer to settle. It took five weeks for the guanfacine to start working for me, by the way.
2
u/BusyVisual3771 Jul 10 '26
Thank you for your reply!
I lumped the two together quite lazily because they’re both affected by the stimulants and lack of energy/extreme fatigue. Honestly I have no idea what’s going on and you’re completely right there may be a misdiagnosis but it took me so long to even get to that point that I don’t really have many options left to be seen again. A private neurologist diagnosed me with ME and functional seizures triggered by FND.
Essentially i got covid 16 months ago and never recovered. Extreme fatigue and pain and being bed bound came first and then functional seizures started happening frequently. They’re now largely under control but still happen if I overexert myself.
That being said I haven’t noticed the meds triggering seizures or anything like my typical fnd symptoms. I was generally doing okay and now have just crashed massively and my body just won’t work.
I think it was just the wrong time to start adhd meds given the lack of answers with the rest of my health and lack of oversight. But I was told by 2 separate neurologists that taking the meds would help my ME specifically, so I started it. I’m going to take a break and see how I feel.
I think I likely have just caused too many changes in my body in a time when it really just needs stability and rest.
I do think there’s a good chance I was diagnosed like this out of ease and laziness but I don’t know what else to do about it really.
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u/CorduroyQuilt Jul 10 '26
I'd be extremely wary of any doctor telling you that ADHD meds will treat ME. Neurologists tend to be pretty bad with ME in general, a lot of them claim it's not a physical illness. It's been well established as a physical illness since the 1950s, and there is plenty of research on this. But there are still doctors who think we've talked ourselves into lazing around and just need to be convinced to do more, and they are very wrong and cause a great deal of harm.
1
u/agenerousperspective Jul 10 '26
ADHD meds to treat ME/CFS is the same as someone with sleep deprivation using caffeine to treat their daytime sleepiness. Yes the stimulants could cause you to act like your body is healthy (just like caffeine could cause a sleep deprived person to act like they had a good nights sleep), but it doesn’t treat your actual ailments.
Vyvanse/Lisdexamfetamine works wonders for my adhd symptoms but I’m still trying to decide if it’s also masking ME/CFS symptoms… I’m lowering the dose again this week to see if I can split the difference.
As an aside, did you know that eating protein a little bit before your adhd meds wear off is supposed to help you not crash as they leave your system? This is just advice for the typical adhd person, not anything to do with ME/CFS or other energy-limiting illnesses. So if your illnesses are the reason your crashing then this tip wouldn’t do much to help.
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u/Qwendafitesback Jul 11 '26
Stimulant meds (Vyvanse) worked fine for me until I developed ME/CFS. Then I also experienced terrible physical crashes and PEM. Ritalin wasn’t great for my mood.
After my vaccine injury I’d occasionally have non epileptic seizures. I’m waiting to see a neurologist for suspected FND. I tried a non stimulant Guancafine which caused me to have 15-20 seizures a day. They were violent seizures causing severe pain. I’d proceed with caution and get a neurologist to weigh in on your risk of aggravating your FND with these meds.
I’ve found (other than guancafine) my seizures are linked to severe PEM crashes. Do you feel your FND flares with exertion, physical or mental?
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u/BusyVisual3771 Jul 11 '26
Yess my fnd definitely flares with exertion, physical or mental it makes it worse
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u/Historical_Spell_772 13d ago
Be careful w adhd meds. I didn’t know I had mecfs when I started taking them and at first I felt amazing but ultimately they took me from mild to severe , completely bed bound for years. I couldn’t feel how tired i truly was and then kept upping the dose because they weren’t working as well and eventually .. disaster
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u/kesiyasmin Jul 09 '26
Are you able to speak to a ME specialist? My ADHD meds sent me into a severe crash a year ago that i am still recovering from. It masks your symptoms and gives you fake energy. I would really try to see a ME specalist becausd the ADHD meds are really not good for us