Distinguish ADHD symptoms from ME/CFS symptoms?

[rapidboson]

Hey!
As of recent, I've entertained the idea that I might have undiagnosed ADHD. Mainly the attention deficit part rather than the hyperactivity part, I suppose this would be ADHD-PI.

I've done some online self report tests based on the ASRS v1.1 and had a result of 4/6, where apparently between 4-6 there a chance you have ADHD?

What I find very difficult though, is to decide whether this attention deficit, loss of interest/motivation during tasks and avoidance of mentally straining tasks is due to long COVID/ME or an underlying undiagnosed ADHD?

I'm currently in the process of getting back to part time work (research) and it's been quite difficult to deal with what I can only describe as attention deficit and lack of motivation.

I've taken armodafinil a couple times in the past weeks and every time I took it, I've had a very productive day without getting PEM. It seems obvious to me that modafinil would have those effects, but I can't help but wonder whether it's because of undiagnosed ADHD or just because it's a stimulating substance.

Never tried actual stimulants like methylphenidate or amphetamine. I had 6 months of taking bupropion last year but that did not do much, from what I can remember.

So, mainly to those that have diagnosed ADHD and maybe even those who got diagnosed while having ME/CFS: How would you distinguish between ME/CFS-driven and ADHD-driven attention deficit?

 

[Ryan31337]

I haven't pursued a diagnosis but have a strong suspicion of ADHD too. A GP in a migraine clinic brought it up and remarked that I might want to get assessed but it didn't go any further. 5/6 on ASRS v1.1 now.

I've had a few prolonged partial remissions and relapses over the course of 30 years of ME/CFS, my ADHD score would track with those and when more healthy it was barely an issue. The overlaps make it really hard to know what's happening with any certainty.

Another example over a much shorter timeframe would be: I very strongly recognise the "hyperactive/driven by a motor" feelings when unusually tired or hungry. I think it goes a bit beyond the "wired but tired" sensation, in the sense I feel absolutely compelled to finish an endless list of tasks. I am well aware of it happening now but still struggle to make myself stop during the moment.

 

[MrMagoo]

I think I am undiagnosed adhd.
I think the fatigue and exhaustion of ME makes it harder to compensate/mask the chaos, pre-ME I was doing more that twice as much work as a regular person to produce the same outcome (I.e turning up in clean clothes, knowing what was going on and where I needed to be, do and say. Lots of evenings and weekends planning/thinking things over etc and winging it at work. Great in a crisis. Terrible at maintaining a routine).

 

[Kitty]

I have diagnosed ADD and autism. It's hard to know what you mean about separating it from ME/CFS, though? To me it sounds like separating apples and cricket bats.

For instance, the fatigue that makes it hard to finish things in ME/CFS isn't the same as the inability to focus in ADD—with the latter, I tend to struggle with finishing a thing because something else (or fifteen other things) have taken its place. It's not because I'm too knackered and brain fogged to do it.

For me it's mostly difficulty organising my thoughts and actions, being impulsive and prone to risk-taking, having no sense of time at all, being rubbish at keeping focus, and forgetting instructions. In some ways it was a bit of an asset in my job, as I had to be able to keep at least half a dozen plates spinning at once. It was keeping one spinning I could never manage; I got out of school the minute I turned 16 because lessons drove me mad.

Of course there are differences in presentation, including between men and women (I'm female). That might explain why from my experience I can't really see all that many similarities with ME/CFS.

 

[rapidboson]

Thank you all for the answers so far!

I haven't pursued a diagnosis but have a strong suspicion of ADHD too. A GP in a migraine clinic brought it up and remarked that I might want to get assessed but it didn't go any further. 5/6 on ASRS v1.1 now.

I've had a few prolonged partial remissions and relapses over the course of 30 years of ME/CFS, my ADHD score would track with those and when more healthy it was barely an issue. The overlaps make it really hard to know what's happening with any certainty.

Another example over a much shorter timeframe would be: I very strongly recognise the "hyperactive/driven by a motor" feelings when unusually tired or hungry. I think it goes a bit beyond the "wired but tired" sensation, in the sense I feel absolutely compelled to finish an endless list of tasks. I am well aware of it happening now but still struggle to make myself stop during the moment.

Thanks, this sounds quite similar to what I (think I) am experiencing. I'm "only" properly sick with PEM for 2 years, though. I feel like most of the answers I've given to the ASRS (down below) have been struggles my whole life, but now are much more apparent.

I think I am undiagnosed adhd.
I think the fatigue and exhaustion of ME makes it harder to compensate/mask the chaos, pre-ME I was doing more that twice as much work as a regular person to produce the same outcome (I.e turning up in clean clothes, knowing what was going on and where I needed to be, do and say. Lots of evenings and weekends planning/thinking things over etc and winging it at work. Great in a crisis. Terrible at maintaining a routine).

Thank you. I am also wondering about the "hard to mask/compensate" part of it.

I have diagnosed ADD and autism. It's hard to know what you mean about separating it from ME/CFS, though? To me it sounds like separating apples and cricket bats.

I am wondering whether that is so apparent as separating apples and cricket bats if one thinks that the potential ADHD symptoms are what everybody experiences?

For instance, the fatigue that makes it hard to finish things in ME/CFS isn't the same as the inability to focus in ADD—with the latter, I tend to struggle with finishing a thing because something else (or fifteen other things) have taken its place. It's not because I'm too knackered and brain fogged to do it.

For me it's mostly difficulty organising my thoughts and actions, being impulsive and prone to risk-taking, having no sense of time at all, being rubbish at keeping focus, and forgetting instructions. In some ways it was a bit of an asset in my job, as I had to be able to keep at least half a dozen plates spinning at once. It was keeping one spinning I could never manage; I got out of school the minute I turned 16 because lessons drove me mad.

Of course there are differences in presentation, including between men and women (I'm female). That might explain why from my experience I can't really see all that many similarities with ME/CFS.

Thank you for that explanation of your symptoms, very insightful!

Regarding the separation from ME/CFS - as I am not diagnosed with ADHD (if I have it), I find it hard to separate whether the answers I give in the ASRS 1.1 are due to ME (cognitive dysfunction/brainfog and/or my ways of dealing with it) or also due to potential ADHD. If it is some underlying extra condition, then it has been much more apparent since getting ME.

Things I find interesting - like new hobbies (recently it's getting into coffee roasting), I can deeply focus on for hours with few issues. I am known amongst my peers for going down (productive or unproductive) rabbit holes if they interest me enough. Then, I easily reach a flow state. Wondering if that's "just" flow or also a form of ADHD hyperfocus. If I am not interested, I delay, delay, and procrastinate a bit more.

The questions I reply with often or very often (from the questionnaire on ADD.org):

How often do you have trouble wrapping up the final details of a project, once the challenging parts have been done? (Always been a trait of mine, but managed to power through most of my life.)

How often do you have difficulty getting things in order when you have to do a task that requires organization? (Never been very good at this, but also managed to deal with it most of my life.)

How often do you have problems remembering appointments or obligations? (New since ME.)

When you have a task that requires a lot of thought, how often do you avoid or delay getting started? (Always been a big procrastinator, but also reach a flow state quite quickly if I overcome the procrastination and I am interested in the topic. Exponentially more procrastinating since ME.)

How often do you fidget or squirm with your hands or feet when you have to sit down for a long time? (I change position in my office chair very often, not sure this counts.)

How often do you have difficulty keeping your attention when you are doing boring or repetitive work? (Always been a big issue, but mostly managed "mentally" by powering through it.)

How often are you distracted by activity or noise around you? (Same as above.)

And sometimes:

How often do you feel overly active and compelled to do things, like you were driven by a motor? (New or much more noticeable since ME - akin to Ryan above mostly when hungry/tired)

How often do you make careless mistakes when you have to work on a boring or difficult project? (Since I made it a habit to proof-read multiple times, this is less of an issue overall.)

How often do you have difficulty concentrating on what people say to you, even when they are speaking to you directly? (Especially since ME I catch myself zoning out of conversations - sometimes to often.)

How often do you misplace or have difficulty finding things at home or at work? (Been misplacing and searching things much more often now than before.)

How often do you feel restless or fidgety? (Inner restlessness is something I experience sometimes to often, not so much external signs of it.)

As I say, a lot of these I recognize from all my life, but I have mostly been able to manage them by myself. Much less so nowadays. Hence, I am wondering whether I've always had some underlying ADHD that has been unmasked since COVID hit me.

 

[Hoopoe]

ADHD and autism tend to go together.

ME/CFS is acquired, while a diagnosis of ADHD and autism need to be supported by a life history consistent with these diagnoses (permitting for significant fluctuations in severity).

 

[rapidboson]

ADHD and autism tend to go together.

ME/CFS is acquired, while a diagnosis of ADHD and autism need to be supported by a life history consistent with these diagnoses (permitting for significant fluctuations in severity).

What if the acquired disease makes it more difficult to mask/deal with ADHD-like symptoms that have been around forever (but mainly managed by oneself)? I guess this is my point - if I even have one.

 

[Hoopoe]

What if the acquired disease makes it more difficult to mask/deal with ADHD-like symptoms that have been around forever (but mainly managed by oneself)? I guess this is my point - if I even have one.

I have the same question.

How do these two diagnoses interact? Is it possible to confuse ME/CFS for autism/ADHD or vice versa in some specific conditions? Is there some shared underlying biology that makes it more likely to develop the other diagnosis if one already has one these two diagnoses?

I'm sure having autism made having ME/CFS much harder and devastating than it would otherwise have been.

If energy and willpower needed to mask/manage ME/CFS, then less energy and willpower is available to mask/manage the autism/ADHD.

 

[Kitty]

I am wondering whether that is so apparent as separating apples and cricket bats if one thinks that the potential ADHD symptoms are what everybody experiences?

Yes, I did always think that. I wasn't diagnosed till my 50s.

I never thought everyone else had ME/CFS though. I knew that wasn't normal even when I was trying to kid myself otherwise when I was young.

They seem very separate to me, but then I've had both for most of my life. It's an awful long time to unpick the experience, even though both diagnoses came decades late—it's hard to imagine being in my 20s again when I was trying to work stuff out, so I'm probably not being especially helpful.

 

[MrMagoo]

Thank you all for the answers so far!


Thanks, this sounds quite similar to what I (think I) am experiencing. I'm "only" properly sick with PEM for 2 years, though. I feel like most of the answers I've given to the ASRS (down below) have been struggles my whole life, but now are much more apparent.



Thank you. I am also wondering about the "hard to mask/compensate" part of it.


I am wondering whether that is so apparent as separating apples and cricket bats if one thinks that the potential ADHD symptoms are what everybody experiences?

Thank you for that explanation on your symptoms, very insightful!

Regarding the separation from ME/CFS - as I am not diagnosed with ADHD (if I have it), I find it hard to separate whether the answers I give in the ASRS 1.1 are due to ME (cognitive dysfunction/brainfog and/or my ways of dealing with it) or also due to potential ADHD. If it is some underlying extra condition, then it has been much more apparent since getting ME.

Things I find interesting - like new hobbies (recently it's getting into coffee roasting), I can deeply focus on for hours with few issues. I am known amongst my peers for going down (productive or unproductive) rabbit holes if they interest me enough. Then, I easily reach a flow state. Wondering if that's "just" flow or also a form of ADHD hyperfocus. If I am not interested, I delay, delay, and procrastinate a bit more.

The questions I reply with often or very often (from the questionnaire on ADD.org):


And sometimes:

As I say, a lot of these I recognize from all my life, but I have mostly been able to manage them by myself. Much less so nowadays. Hence, I am wondering whether I've always had some underlying ADHD that has been unmasked since COVID hit me.

Your answers align with what I was thinking…the ADHD usually in Women is the Attention Deficit part, or Hyperactive Attention. It’s much more related to executive functioning issues.
If you are fairly intelligent you will have learned what is expected of you, and found ways to “make it happen” the difference is, other people just get up on time, go to work, do their job then go home and cook something and tidy up. It’s that simple. They don’t really have to think about it, they just do it with ease.

 

[MrMagoo]

You may not be a fan but I like the little cartoon slides people make on Instagram, see examples below. They are good for prompting areas to think about. It was the “finishing people’s sentences” for me! I can’t help it. I hate doing it but I still do it!

Also I read ADDitude magazine online which was very helpful.

Interesting that “perfectionism” comes up a lot. I saw a good thing once which explained “it’s not perfectionism, it’s trying to do a good job so I don’t get criticised, I need to make sure I’ve done enough for it to be acceptable” which sounds very ADHD-like to me! Because there was always an error somewhere I’d missed.

 

[Holinger]

I've taken armodafinil a couple times in the past weeks and every time I took it, I've had a very productive day without getting PEM. It seems obvious to me that modafinil would have those effects, but I can't help but wonder whether it's because of undiagnosed ADHD

I have never heard of Modafinil or Amordafinil being used for ADHD but it was used for Me/cfs when prescribed off label and it was basically cast aside as not helpful. There was an Andrew Lloyd study planned about 10 years ago that never got off the ground. Not sure why.

 

[JellyBabyKid]

I am a 49 year old woman and have finally been diagnosed with ADHD and awaiting an autism assessment and I have had to fight like hell to get here.

My ADHD means that my brain is going 110mph pretty much ALL THE TIME and is almost impossible to switch off, I cannot compartmentalise so can't do the "just don't think about things" thing and what even is time? So time blind, it is a joke.

Can't organise my thoughts, or prioritise I make endless lists, but don't get started because there are too many possible options,or get started, can't stop for days and exhaust myself..or get so hyperfocused on one detail I miss the whole picture. I have never been able to pace because of it, and my health is just going off a cliff

Interesting that “perfectionism” comes up a lot

It's not perfectionism; it's that the neurotypical definition of "do your best" does not mean that, they mean "try" where the rest of us do it thoroughly , to the best of our abilities and get told we are weird and, new one this week "too thorough". You asked me to fill in a form; I gave you complete and detailed answers - how is that wrong?!

If you are fairly intelligent you will have learned what is expected of you, and found ways to “make it happen”

This..I never understood how other people just..
got on with things like it was easy and didn't need a list, a plan, mental rehearsal and a tonne of coffee?

It's an awful long time to unpick the experience

Yes. i keep running into things that would have been really helpful to know 40 years ago and leave me in tears that I did not know, and did the best I could to deal with, but in not the best way for my mental and physical health and now I am left with picking up the pieces - as "only boys have it", so I had no idea until I got ME and things start to become impossible.

There are folks in the LC community who say that they were living life at maximum and "getting away with it" until covid hit them and now they are dealing with having been redlining for decades and that really resonated as I worked and studied part time for 15 years and then got pneumonia and it all unravelled - and kept unravelling.

If you look into it there is a really high crossover between pwME and pwADHD - people like Dr James Kustow who wrote the book How to Thrive With Adult ADHD says there is evidence of a link between ADHD and autoimmune conditions

This subject might be my current special interest...

 

[ukxmrv]

Something I noticed with my own undiagnosed but suspected ADHD is that the constant chatter in my mind switches off if I enter a physically exhausting post exertional period. I then enter what I call 'brain death' where i simply cannot think and the fog is dampening all my thoughts. It is calm though.

I have nieces and nephews with ADHD and Autism and POTS.

It may be that the exertion if trying to get back to work has put you into a PEM state and that is causing the perceived attention deficit state?

I've not tried Modifinial in my PEM post crash brain dead state that i remember but previously it always caused a high then PEM for me.

Probably not applicable but just mentioning in case it is useful in any way,

 

[MrMagoo]

Sometimes if I have the time and energy, I like to let my brain run riot and bounce around, half-thinking about 5 unrelated things at once. Writing half a note, thinking of something, writing another note, reading the notes back and not even remembering them.

Other times having a “crash”is useful because the brain is forced to let go of whatever it’s percolating and planning, and accept that nothing is going to happen at all for a while

 

[darrellpf]

There is a strong link between autism and autoimmunity. See Naviaux, Dr Chris Armstrong, cell danger response.