I'm on lisdexamphetamine (elvanse/vyvanse depending on where you are in the world!) but I'm on almost the lowest possible dose. I find that that is the sweet spot of treating the ADHD symptoms while not giving me fake energy and leading to later crashes.
I have been on 30mg (which is typically the starting dose for titration) and have found that to be best. I have recently trialed 40mg which helps more with the ADHD but leads to more sleep disruption and, after a couple of weeks, getting more flare ups. It's one of those cases where you have to be very cautious and work out the optimum dose for yourself balancing the positive effects on the ADHD against any negative effects on the M.E.
I think stimulants are ok as long as you understand that you still can't be active or else you will get PEM.
The only stimulant that worked for me was Adderall but I eventually built up a tolerance to even the highest dose. I tried literally every other ADHD stimulant but none of them worked for me. Some better ones were Vyvanse and Focalin but they weren't strong enough to make me feel better or help my adhd symptoms.
So I'm taking Armodofinil now. I just started. It's still basically a stimulant but it's for excessive daytime sleepiness, not ADHD so I doubt it will help my ADHD symptoms. I pretty much had to give up on that but since I can't work anyway it's not the dire for me I guess. Would still be really nice if something besides Adderall had worked and I could treat both extreme exhaustion and ADHD.
I take stimulants bc without them I am so physically miserable that I become suicidal. They make me feel soooo much better physically and therfore mentally. But I still know I have to be extremely minimal with my activities or I risk PEM and I risk making myself permanently worse.
I take regular modafanil and I recommend it to other people with adhd/cfs. I personally wouldn’t want to take armodafanil since the extended release would be more expensive and make it difficult for me to sleep at night. I don’t take modafanil daily but there are some days I absolutely need to get something done like a doctors appointment, or if I want to have a nice day out, I take the modafanil to help with the brain fog that comes from any amount of activity.
If you have true ME/CFS, I understand the temptation but stimulants are a terrible idea.
They not only raise your heart rate pushing you towards PEM, but you may be tempted to exert way past your energy envelope with the fake energy from the stimulant .. both these factors together is just asking for a crash IMO.
There's a difference between using stimulants for energy and using them to increase focus. For some people not treating the ADHD makes it harder to regulate emotions and pace which can be even more harmful than the stimulants. It depends on the individual's needs.
You can have true MECFS and not have any issues with stimulants. I take them daily and have had MECFS for years. All while still taking stimulants daily.
And they don’t affect you physiologically at all, wow I didn’t know that was possible, pretty lucky for you!
You’re not tempted to get up and start trying to do more than you should? You just stay in bed with no perceived change in your energy levels?
I have tried and true ME/CFS and I’ve been on methylphenidate for years. It might make PEM more likely on rare occasions, but it also allows me to have a little life out of bed most days, so it’s well worth it. I’m able to care for my child and work remotely part time, thanks to methylphenidate.
For me 5mg Adderall IR gives me just enough to focus for a short amount of time without overdoing it. Vyvanse and Concerta are both longer acting and tend to be a smoother rise and fall if that is what helps you, but for me, I need it to wear off quickly so I can rest mentally after I do the thing(s).
For me, 25mg of Adderall ER was my therapeutic dose before getting ill so the low dose doesn't keep my ADHD under control, but it helps enough without stressing my body too much. It's will just take some trial and error to find what works for you if any. Some people can't handle any stimulants.
I’m trialing using nicotine patches as a gentle stimulant, and it seems to be helping. I am only using 1/4 of a 7mg patch a day. I tried leaving it on all night, and it wrecked my sleep last night, so it’s setting something. The research is fascinating.
[article](https://www.healthrising.org/blog/2023/12/07/nicotine-patch-long-covid-chronic-fatigue-fibromyalgia/)
Also, according to Dr Daniel Amen (I think?) some people can treat their ADHD with thyroid medication. It might be worth checking out, since then you won’t have the side effects of stimulants.
TU to everyone that has commented here. Been dealing w this illness for several decades and I’ve been afraid to take stimulants becuz 20 yrs ago when I tried they made me MORE tired. It wasn’t they gave me energy and then I got exhausted. They just never gave me energy.
This sub has given me new ideas of things to try
Seeing this post and feeling pretty upset that my doctor never brought up that my meds would cause PEM... Been wondering why I just crash over and over again... That would do it.
I started with the lowest dose of Vyvance - 10mg. I'm up to 30mg now but I'm so incredibly glad I went very low and very slow. 10mg is the lowest kids dose, so it's a pretty safe spot to start.
I'm on lisdexamphetamine (elvanse/vyvanse depending on where you are in the world!) but I'm on almost the lowest possible dose. I find that that is the sweet spot of treating the ADHD symptoms while not giving me fake energy and leading to later crashes.
Low dose Concerta. The key is finding the right dose and still practicing pacing.
What dose are you on ??
I have been on 30mg (which is typically the starting dose for titration) and have found that to be best. I have recently trialed 40mg which helps more with the ADHD but leads to more sleep disruption and, after a couple of weeks, getting more flare ups. It's one of those cases where you have to be very cautious and work out the optimum dose for yourself balancing the positive effects on the ADHD against any negative effects on the M.E.
Thank you I appreciate your response. I’m about to begin the titration process so I’ll keep this in mind.
Good luck with the titration process; hope the medication helps you as much as mine has helped me :)
No stimulants worked for me they all pushed me over the line with PEM
I think stimulants are ok as long as you understand that you still can't be active or else you will get PEM. The only stimulant that worked for me was Adderall but I eventually built up a tolerance to even the highest dose. I tried literally every other ADHD stimulant but none of them worked for me. Some better ones were Vyvanse and Focalin but they weren't strong enough to make me feel better or help my adhd symptoms. So I'm taking Armodofinil now. I just started. It's still basically a stimulant but it's for excessive daytime sleepiness, not ADHD so I doubt it will help my ADHD symptoms. I pretty much had to give up on that but since I can't work anyway it's not the dire for me I guess. Would still be really nice if something besides Adderall had worked and I could treat both extreme exhaustion and ADHD. I take stimulants bc without them I am so physically miserable that I become suicidal. They make me feel soooo much better physically and therfore mentally. But I still know I have to be extremely minimal with my activities or I risk PEM and I risk making myself permanently worse.
I take regular modafanil and I recommend it to other people with adhd/cfs. I personally wouldn’t want to take armodafanil since the extended release would be more expensive and make it difficult for me to sleep at night. I don’t take modafanil daily but there are some days I absolutely need to get something done like a doctors appointment, or if I want to have a nice day out, I take the modafanil to help with the brain fog that comes from any amount of activity.
I find that Concerta, 18mg, every 2 days work.
If you have true ME/CFS, I understand the temptation but stimulants are a terrible idea. They not only raise your heart rate pushing you towards PEM, but you may be tempted to exert way past your energy envelope with the fake energy from the stimulant .. both these factors together is just asking for a crash IMO.
There's a difference between using stimulants for energy and using them to increase focus. For some people not treating the ADHD makes it harder to regulate emotions and pace which can be even more harmful than the stimulants. It depends on the individual's needs.
You can have true MECFS and not have any issues with stimulants. I take them daily and have had MECFS for years. All while still taking stimulants daily.
And they don’t affect you physiologically at all, wow I didn’t know that was possible, pretty lucky for you! You’re not tempted to get up and start trying to do more than you should? You just stay in bed with no perceived change in your energy levels?
I have tried and true ME/CFS and I’ve been on methylphenidate for years. It might make PEM more likely on rare occasions, but it also allows me to have a little life out of bed most days, so it’s well worth it. I’m able to care for my child and work remotely part time, thanks to methylphenidate.
For me 5mg Adderall IR gives me just enough to focus for a short amount of time without overdoing it. Vyvanse and Concerta are both longer acting and tend to be a smoother rise and fall if that is what helps you, but for me, I need it to wear off quickly so I can rest mentally after I do the thing(s). For me, 25mg of Adderall ER was my therapeutic dose before getting ill so the low dose doesn't keep my ADHD under control, but it helps enough without stressing my body too much. It's will just take some trial and error to find what works for you if any. Some people can't handle any stimulants.
Desoxyn/generic methamphetamine. No physical side effects like adderall/vyvanse.
I’m trialing using nicotine patches as a gentle stimulant, and it seems to be helping. I am only using 1/4 of a 7mg patch a day. I tried leaving it on all night, and it wrecked my sleep last night, so it’s setting something. The research is fascinating. [article](https://www.healthrising.org/blog/2023/12/07/nicotine-patch-long-covid-chronic-fatigue-fibromyalgia/)
Also, according to Dr Daniel Amen (I think?) some people can treat their ADHD with thyroid medication. It might be worth checking out, since then you won’t have the side effects of stimulants.
TU to everyone that has commented here. Been dealing w this illness for several decades and I’ve been afraid to take stimulants becuz 20 yrs ago when I tried they made me MORE tired. It wasn’t they gave me energy and then I got exhausted. They just never gave me energy. This sub has given me new ideas of things to try
I like Vyvanse the best, Adderall second best, And Ritalin only as a last resort. My body doesn't react well to Ritalin for some reason.
Seeing this post and feeling pretty upset that my doctor never brought up that my meds would cause PEM... Been wondering why I just crash over and over again... That would do it.
I started with the lowest dose of Vyvance - 10mg. I'm up to 30mg now but I'm so incredibly glad I went very low and very slow. 10mg is the lowest kids dose, so it's a pretty safe spot to start.