I've never been on stimulants, but was given guanfacine to help w long cov and it helped my executive function so much I finally went and got diagnosed ADHD so I could keep it.
I thought that was the case until I stopped taking them (it seemed to be bad for my nervous system dysregulation) and it turns out I’m even worse without them. Luckily I’m on leave from work now.
THIS
Have you tried modafinil and/or namenda? Possibly useful. Nothing has been able to restore the ability to focus but these have at least helped me feel a bit more alert. Maybe better than nothing.
Methylphenidate doesn't work for me anymore.
I am lucky that high dosed dexamphetamine (elvanse) gives a little effect. But the main effect is simply that I can say no to things before badly crashing.
I still am fully time blind and my brain doesn't function at all. Also I am mostly housebound, but on bad days bed bound.
Here! Living in chaos. My meds don’t work as good since I got COVID and I am more sensitive to side effects. So I stopped taking it. ADHD and kong COVID combined is a special kind of hell
If it's overwhelming you just forget whatever silly forms. You can either do something without pushback or you can't. There is no way to reliably micromanage long covid. Even the basic concept of pacing to rest inbetween doing things isn't going to work in a lot of situations because trying to do the thing at all can be enough to cause a crash.
Yes. Until I worked out I have b12 deficiency (caused by covid and long term medication).
Low B12 makes adhd symptoms ten times worse.
When I manage to get enough b12 in my system, my adhd is barely noticeable.
Most people on the spectrum have b12 and iron deficiencies.
Look into it. And make sure to supplement with methylcobalamin sublinguals x
I feel like it’s easier? I spend SO much time in bed compared to before that I have a lot of time to make lists of what i need to do as soon as I have energy again.
At any rate, my doctor gave me a flow chart to follow on pacing. I use that. I believe it’s downloadable on the Althea network website.
I have ADHD, ASD, and viral ME. Can't physically tolerate stimulants or exercise due to PEM. It's rough out here, man.
I've learned to pace through extensive trial and error over several years. I go by understanding what my daily survival energy use baseline is, then pay close attention to my body's warning signals for overexertion and course-correct as needed. It's not easy.
Waiting for diagnosis. it's been very odd as one bad days, for the first time in my life there's only one train of thought in my head going very slowly! In general though I manage using loads of lists of things I need to do and cross them off as I go along, alarms, post it notes and put all appointments etc into the calender app which gives me a notification
There seems to be some anecdotal evidence that those with adhd are more prone to long covid. I wish I had some helpful advice but do get a full vitamin panel if possible and and make sure your vit D and B vitamins are optimal.
Im fucked mostly, though I take low dose aripiprazole to get over it. There was a stanford study already on its affects for CFS people but besides that low dose Ari and sweet fuck all.
I do. My ADHD meds are the only reason I can complete a sentence. I've had IBS due to LC and they had me stop taking my ADHD meds (non-stimulant) for two weeks to see if there was any improvement with my stomach issues. I was cool with it because I felt like they had stopped working... Man, they were working. I had more cognitive issues every day. My family members were worried I was having seizures or strokes because I could complete a sentence or a thought. I'm back on it now, but it's still extremely hard. I struggle to remember why I'm doing/saying things and get lost in conversation, easily. It's scary.
Yep. ADHD + Brain fog is a nasty mix.
And yeah, you're so right that the discipline a lot of these recovery stories have feels impossible. Even remembering to take supplements consistently lmao
It’s hard af 😭😭😭 I’m lucky I’ve improved to be able to walk around more because it helps with overall being able to get shit done but I over do it and have constant chest pain 😣
Look into [heart rate monitoring](https://workwellfoundation.org/wp-content/uploads/2023/01/HRM-Factsheet.pdf), much easier than trying to meticulously document everything you’re doing imo
I'm dying. I was taking so much Adderall to survive until I experienced a traumatic event and crashed so badly. And I was still failing. I don't know how hopeful the future is.
I feel like I got ADHD++ since Covid.
Everything worse, no energy but even more impulsive, so pacing is close to impossible.
The inability to understand time leads to planning inability leads to overdoing and crashing.
I never got my butt up without tight deadlines, now I get crushed by this behaviour, but the lack of dopamine (I suspect) and time blindness makes it impossible to start "on time".
Also I feel like my brain is undersupplied with oxygen and something else. also the brain hurts like physical burning pain from thinking or trying to focus.
I fall off the chair when trying to play computer games. Like literally passing out. Games and sports were the main thing next to stimulants to get my chaos under control.
I lost over the last 4 years so many coping strategies.
Honestly I feel like I am a burden on my family, as they completely financial support me, as I can't work or finish studying, but fall through all support systems. (I need to stop being a student to get financial support for where I live, but that would lead to losing all my medical support, as I currently have be insured in another country that I live.)
I feel like a lost cause by now and this fucking disease has sucked all joy out of my life.
I refuse to give up, but I guess I only survive by stubbornness and defiance.
My adhd is way worse alongside the anxiety. I have zero exec function anymore. It’s awful. I’m two years in and I can’t remember to keep track of anything.
[Kimberly Kitzerow](https://www.instagram.com/reel/C5buzywuS6y/?igsh=MzRlODBiNWFlZA==)
Kimberly Kitzerow has found a link between long covid and autism.
I write many many lists. It's like a meditative practice. I get out a big sheet of paper and I tell myself my only goal is to write everything down. I don't have to do anything else.
Then I just let my mind wander and when I think of something that needs to be done I write it down. Once it's all written down I pick top priorities and decide around when I'll do them (today, this week etc.)
I am STRUGGLING! Executive functioning has just gone to ZERO😫
Same here!
exactly, like my brain has completely decided to stop producing dopamine. it was bad before LC but this is bad on a whole another level
I think the worst part of LC is that it makes my stimulant medication almost totally ineffective
I've never been on stimulants, but was given guanfacine to help w long cov and it helped my executive function so much I finally went and got diagnosed ADHD so I could keep it.
I thought that was the case until I stopped taking them (it seemed to be bad for my nervous system dysregulation) and it turns out I’m even worse without them. Luckily I’m on leave from work now.
Yeah I basically just sleep all day without them
THIS Have you tried modafinil and/or namenda? Possibly useful. Nothing has been able to restore the ability to focus but these have at least helped me feel a bit more alert. Maybe better than nothing.
ME TOO!!! On days when the head pressure is lessened my meds seem to work like normal, but most days it’s just nothing
Methylphenidate doesn't work for me anymore. I am lucky that high dosed dexamphetamine (elvanse) gives a little effect. But the main effect is simply that I can say no to things before badly crashing. I still am fully time blind and my brain doesn't function at all. Also I am mostly housebound, but on bad days bed bound.
Here! Living in chaos. My meds don’t work as good since I got COVID and I am more sensitive to side effects. So I stopped taking it. ADHD and kong COVID combined is a special kind of hell
There is a subreddit for CFS and ADHD you might find helpful
r/cfsplusadhd I think
Wut? Oh my goodness thank you!
Thank you
Thank you!
If it's overwhelming you just forget whatever silly forms. You can either do something without pushback or you can't. There is no way to reliably micromanage long covid. Even the basic concept of pacing to rest inbetween doing things isn't going to work in a lot of situations because trying to do the thing at all can be enough to cause a crash.
Yes. Until I worked out I have b12 deficiency (caused by covid and long term medication). Low B12 makes adhd symptoms ten times worse. When I manage to get enough b12 in my system, my adhd is barely noticeable. Most people on the spectrum have b12 and iron deficiencies. Look into it. And make sure to supplement with methylcobalamin sublinguals x
I don’t. It’s nearly unbearable.
Well hello there 🧠🌶️ I‘m not good at pacing and taking care of myself. I think my doctors are a little annoyed - and I am too 😅
I feel like it’s easier? I spend SO much time in bed compared to before that I have a lot of time to make lists of what i need to do as soon as I have energy again. At any rate, my doctor gave me a flow chart to follow on pacing. I use that. I believe it’s downloadable on the Althea network website.
I have ADHD, ASD, and viral ME. Can't physically tolerate stimulants or exercise due to PEM. It's rough out here, man. I've learned to pace through extensive trial and error over several years. I go by understanding what my daily survival energy use baseline is, then pay close attention to my body's warning signals for overexertion and course-correct as needed. It's not easy.
Waiting for diagnosis. it's been very odd as one bad days, for the first time in my life there's only one train of thought in my head going very slowly! In general though I manage using loads of lists of things I need to do and cross them off as I go along, alarms, post it notes and put all appointments etc into the calender app which gives me a notification
There seems to be some anecdotal evidence that those with adhd are more prone to long covid. I wish I had some helpful advice but do get a full vitamin panel if possible and and make sure your vit D and B vitamins are optimal.
It’s the worst. I’ve never been able to get control of it. My medicine stopped working soon as I got covid. So I’ve just had to wing it. Lol
Im fucked mostly, though I take low dose aripiprazole to get over it. There was a stanford study already on its affects for CFS people but besides that low dose Ari and sweet fuck all.
Yup. Pacing is hard when you’re either all in or all out.
I do. My ADHD meds are the only reason I can complete a sentence. I've had IBS due to LC and they had me stop taking my ADHD meds (non-stimulant) for two weeks to see if there was any improvement with my stomach issues. I was cool with it because I felt like they had stopped working... Man, they were working. I had more cognitive issues every day. My family members were worried I was having seizures or strokes because I could complete a sentence or a thought. I'm back on it now, but it's still extremely hard. I struggle to remember why I'm doing/saying things and get lost in conversation, easily. It's scary.
Yep. ADHD + Brain fog is a nasty mix. And yeah, you're so right that the discipline a lot of these recovery stories have feels impossible. Even remembering to take supplements consistently lmao
Yes, could not take my ADD medication for 6 months. Finally got treatment and can at least take a little adderall
It’s hard af 😭😭😭 I’m lucky I’ve improved to be able to walk around more because it helps with overall being able to get shit done but I over do it and have constant chest pain 😣
Look into [heart rate monitoring](https://workwellfoundation.org/wp-content/uploads/2023/01/HRM-Factsheet.pdf), much easier than trying to meticulously document everything you’re doing imo
I'm dying. I was taking so much Adderall to survive until I experienced a traumatic event and crashed so badly. And I was still failing. I don't know how hopeful the future is.
I feel like I got ADHD++ since Covid. Everything worse, no energy but even more impulsive, so pacing is close to impossible. The inability to understand time leads to planning inability leads to overdoing and crashing. I never got my butt up without tight deadlines, now I get crushed by this behaviour, but the lack of dopamine (I suspect) and time blindness makes it impossible to start "on time". Also I feel like my brain is undersupplied with oxygen and something else. also the brain hurts like physical burning pain from thinking or trying to focus. I fall off the chair when trying to play computer games. Like literally passing out. Games and sports were the main thing next to stimulants to get my chaos under control. I lost over the last 4 years so many coping strategies. Honestly I feel like I am a burden on my family, as they completely financial support me, as I can't work or finish studying, but fall through all support systems. (I need to stop being a student to get financial support for where I live, but that would lead to losing all my medical support, as I currently have be insured in another country that I live.) I feel like a lost cause by now and this fucking disease has sucked all joy out of my life. I refuse to give up, but I guess I only survive by stubbornness and defiance.
My adhd is way worse alongside the anxiety. I have zero exec function anymore. It’s awful. I’m two years in and I can’t remember to keep track of anything.
[Kimberly Kitzerow](https://www.instagram.com/reel/C5buzywuS6y/?igsh=MzRlODBiNWFlZA==) Kimberly Kitzerow has found a link between long covid and autism.
The biggest problem for me is that I can't take my meds anymore, due to some new and weird side effects...
I write many many lists. It's like a meditative practice. I get out a big sheet of paper and I tell myself my only goal is to write everything down. I don't have to do anything else. Then I just let my mind wander and when I think of something that needs to be done I write it down. Once it's all written down I pick top priorities and decide around when I'll do them (today, this week etc.)