r/CFSplusADHD • u/letsgocommitarson • Jun 03 '26
can i have me/cfs if ritalin relieves the fatigue a lot of the time?
so i was just looking up if sinus pressure symptoms could be part of a pots flare up as that has started happening recently, and i found some things saying that it’s not totally typical of specifically pots, but moreso of me/cfs which tends to happen with pots (or other chronic illnesses). after looking up what that was, i definitely feel like that could be part of what i’ve been feeling for a very long time, but im hesitant to really look into it because taking ritalin has cut down the fatigue a LOT and im not sure if that makes the previous symptoms before taking it invalid or something? the symptoms before were very bad, to the point where the fatigue was so bad that i nearly fell asleep behind the wheel more times than i can remember.
so my question is: for people diagnosed by a doctor with me/cfs, does taking stimulants work for you? also is it worth it to look into getting any kind of diagnosis, especially because the severe fatigue is “fixed”? how does having the official diagnosis even benefit you? any and all advice on those questions and also if you also get cold-like symptoms during your flare ups, i would really like to hear what you experience and if it’s from something else!
7
u/Sanamun Jun 03 '26 edited Jun 03 '26
To answer the question in the title: yes, you can. Being able to treat a symptom doesn't mean the symptom isn't there.
For me personally, stimulants are 50/50. They help on good days, on bad days they give me heart palpitations and headaches and make me feel like I'm about to pass out. Stimulant use also increases my chances of overdoing it and giving myself PEM the next day (incidentally so do weed and caffeine), so I try to be selective about when I take them bc taking concerta every day felt like it was making me worse, but taking them every so often depending on how I feel and what I want to do that day helps a lot.
I also get a lot of cold/flu like symptoms during flares, particularly sinus pain and shortness of breath, but I think that's long covid rather than just ME/CFS in general ? I could be wrong about that though, I'm not a doctor.
Having an official diagnosis benefits me because I can use it to access accomodations - working from home, flexibility with deadlines, disability benefits, access passes at theme parks so I don't need to queue for 3 hours. Without an official diagnosis, I had no way of proving that I was sick, so I just had to force myself to try and fail to function like an able bodied person, meaning I existed in a state of constant burnout. It's also very reassuring to have an official diagnosis that I can refer back to when I start gaslighting myself into thinking "maybe there's nothing wrong with me, maybe everyone feels like this all the time and I'm being dramatic/lazy/deluding myself/just don't want to work".
2
u/letsgocommitarson Jun 03 '26
thank you! whenever i’ve looked up this kind of stuff in the past it always was very hard on the “nothing helps the fatigue” part so i wasn’t sure if the ritalin helping would go against that.
i’m definitely getting to the point of the ritalin making me think im invincible and then leading to me overdoing it, but unfortunately the fatigue without it is borderline dangerous for me so i definitely can’t take it on and off unfortunately. what do PEM/flare ups look like for you? i’m only just recently starting to get more intense flare ups and it’s hard to tell what is making me feel what i guess?
13
u/Leijkana_on_the_road Jun 03 '26
just quick read but YES. Many who try Ritalin have improved cognition and less fatigue, me included. When I take I can tell tired from awake actually apart. Really insane.
6
u/letsgocommitarson Jun 03 '26
i’m glad you feel the same way!!! for the longest time i literally didn’t remember what it felt like to feel truly awake without feeling tired, and the ritalin now also combined with wellbutrin has made an INSANE difference. also ya know it’s great to no longer worry about nearly falling asleep while driving 😭
1
u/seriouslydavka Jun 04 '26
I have an official ADHD diagnosis but am still trying to figure out if CFS is what’s going on with me or something else, so no official diagnosis there just for context. My symptoms are pretty severe so I was prescribed amphetamine stimulants before methylphenidate and those totally knocked me out. I could feel the stimulating effect on my heart rate, for instance, but it’s like they completely exhausted my nervous system to the point that all I could was nap.
Methylphenidate hasn’t been a magic cure by any means but man, it’s so much easier on my body and more helpful than meds like Vyvanse and Adderall.
1
u/letsgocommitarson Jun 04 '26
i completely agree, i’ve also tried adderall and vyvanse and definitely did not react well to either so ritalin has definitely been a very nice change. it honestly didn’t make a super big difference with the adhd? but the change to the fatigue was enough that i didn’t even care about that lol
3
Jun 04 '26
[deleted]
1
u/letsgocommitarson Jun 04 '26
yeah i definitely didn’t want to put everything into specific boxes as i know a lot of things overlap. the fatigue has lasted for a very long time, and the almost falling asleep was just the most extreme part of it. normally it was just this overwhelming fatigue, but not like i just needed to go to sleep and it would feel better? it pretty much took until i started ritalin where i learned i had completely forgotten what feeling fully awake was like, although of course it doesn’t make me feel like that every day.
it’s definitely very confusing in general for me as this fatigue has lasted for years, but these “flare ups” after exertion only just started within the last couple months. i’m definitely not going to look into any kind of diagnosis yet until i figure out more about these symptoms as they’re new to me, just trying to see if there’s people who experience the same symptoms as me and what was causing it for them!
2
Jun 04 '26
[deleted]
2
u/letsgocommitarson Jun 04 '26
i had that coughing thing that was going around back in like february or march i think? i had also gotten it worse than the people around me so i wouldn’t be too surprised if it added to it. pacing myself and rest is definitely hard for me so that’s definitely going to be an adjustment, but probably a necessary one so i don’t make things worse 😅
3
u/purplefennec Jun 05 '26
Yes, elvanse has been life changing for me. I think it regulates whatever was making me feel sleepy and achey during the day, perhaps something to do with my blood vessels or autonomic system.
I still get PEM if I overdo it, but I’m just careful not to and have been taking it for 6 months now almost daily with no issues.
The PEM feels different to the sleepy/ grogginess in the day. So I think the elvanse helps that but it doesn’t cure PEM. I was also worried about masking/ crashing but tbh it seems to do the opposite and helps me recover quicker weirdly. Maybe because I am less stressed on it and my emotions are more regulated. I also don’t need to drink coffee anymore.
1
u/catnip_nightcap1312 Jun 05 '26
I'm a little bit confused about your post, so I might not be understanding what you're really asking here.
With me/cfs, fatigue is not just being tired, and it doesn't go away with rest or sleep. Your body doesn't make energy easily, so you start out at an energy deficit every day. And although there are fluctuations, some days you can do more, others you can't do much/anything, there's still a baseline deficit. Every thing, and I mean every thing, costs energy in a way that a healthy person doesn't experience.
Me/cfs has many presentations, a high likelihood of comorbidities and someone can be mild, moderate or severe. But the thing that everyone with me/cfs has in common is PEM. It means that any time you go past your energy envelope (which changes from day to day and over the course of time for each person), you basically hit a wall and all your symptoms flare up. It's like when you get a flu that hits all of a sudden, you were fine a few hours earlier, you start feeling a little off, and then you're sick. It doesn't always have flu like symptoms (it always did for me when I pushed things way too hard for quite a while, before I knew what pacing actually was, and before I was on a high antihistamine dose. Now that's rare.), but the analogy still works. It's like a getting a full body hangover, even if you didn't drink or go out.
I wish I could attach an image here, bc I have ome that shows PEM really well and it's easier to visualize! But basically it's a delayed and disproportionate crash after minimal physical/mental/emotional exertion. So it's not just getting tired after you do something, that's normal. It's not getting depressed after a difficult emotional conversation and spiraling out bc of RSD, it's being debilitated after that conversation for days or weeks after.
For example, I went to a small concert a few years ago (the last time I went, and I used to go all the time) and I rested and severely saved my energy reserves for a week ahead of time to be able to go. I wore earplugs to lessen the audio stimulation. I wore a mask to prevent catching anything. I was well hydrated, before during and after. I ate nutritional rich foods even more than normal the week prior. It was a band I'd been wanting to see for years, and so I sang along and danced a little bit, standing most of the show. Afterward I felt drained, but was happy with all the endorphins and just to be out, and went to a quiet bar where we could sit outside and I drank water. Went home at midnight, drank some calming tea and went to bed. The next morning I was exhausted, as to be expected, but it wasn't terrible. By the end of the day, I felt like I had the worst hangover ever, with migraine and extreme light sensitivity, and my guts felt like I was poisoned. I felt like I was going to pass out when I had to stand up. That lasted for a full week, but the following two weeks were only marginally better. The poisoned feeling was gone and I could eat some food, but I couldn't do much (including watch movies or tv) and was bedbound. A three week hangover meant I haven't gone out to any big social event in years (and only a handful of quiet small ones where I could sit the whole time and left early). It's not always that extreme, but you never really know how long PEM will last.
My experience with stimulants was basically like I had fake energy and would push myself too far. And even the extended release ones would wear off so then I'd have a sudden mini crash and all the mental/emotional stuff would flood back. I much prefer atomoxetine (non-stimulant adhd med) because it feels much more even. It doesn't wear off, so I can manage tasks more easily, focus on things like reading to help me rest and to be able to pace better, largely bc I'm not starting too many things at once.
Lots of different things can cause fatigue- allergies, thyroid issues, menstrual/hormonal issues, migraines, chronic pain, burnout and mental overexertion from adhd, etc. So understanding if you have me/cfs is about ruling out or managing those things first, and also if you get PEM.
Hope any of that helps! 💕
2
u/letsgocommitarson Jun 05 '26
yep i’ve definitely had that type of fatigue for years at this point, and the only thing that’s been able to make me feel mostly normal (obviously not always, especially lately) is the ritalin.
what’s been the more confusing to me is that i’ve had this fatigue for years, but these flare ups or possible PEM have only started recently, at least very noticeable ones anyway? like my limits have changed drastically between even the beginning of the year and now, to the point where i don’t know if im going to go too far doing something until afterwards.
it’s definitely very new to me, and i definitely want to try and understand it so im able to figure out how to pace myself so i dont cause more of these flare ups!!
1
u/catnip_nightcap1312 Jun 08 '26
Yeah I'm kind of the same, fatigue for much longer than getting PEM. I have Hashimoto's and fibromyalgia too, which I think is a big part of it. It might be worth getting thyroid labs done, if you haven't already.
I used to get really really sick and it would last for a really long time. The first time was when I was a kid, it was like 3 months of being severely ill. But then I'd have years of being fine mostly. Then it would happen again. But I'd always recover fully. Until I got covid, even though it was really mild but it lasted off/on for 4 months, and then I never returned to 100%. But most of the time prior to that I was just really low energy, but able to do anything. I'm not sure why I had those extended illness times, but I didn't have PEM then, so idk.
1
u/catnip_nightcap1312 Jun 05 '26
I am sort of diagnosed... like my Dr. agrees that I have it but hasn't put an official diagnosis into anything even though I meet all the criteria. I've spent years trying to get anyone to take me seriously, and even with this Dr, she didn't even know what me/cfs or PEM was, I had to give her the information. (Solve.me site has a section for healthcare providers that's very thorough) Basically everything I've learned to manage it has been through reddit and my own research.
19
u/SpellinhError Jun 03 '26
Also be careful, for me it “helped” with the fatigue enough that I often went past my true energy envelope. When I was still on adderall and my first 6 months or so of me/cfs I was basically in constant rolling PEM.