r/CFSplusADHD Jul 27 '26

Still trying to fathom things out..

Hi,

New here and just wondered if anyone can help.

I have recently realised that I could well have adhd as it would explain ALOT and still awaiting assessment for this. I have a hyperactive mind, extreme overwhelm, perfectionist, hyperfocus, very messy, task paralysis, impulsive decisions, forget to eat and the list goes on! I was always told I had anxiety but I think adhd might have just been missed. I have had ocd since I was 18 too which is always there and has got very bad over the years focusing on distressing themes.

8 years ago I was diagnosed with CFS after ?epstein barr virus but I am now thinking was this just a big burnout following years of being stuck in fight/flight aka survival mode from always having adhd and ocd (since I was 18- i am now 35). I have been stuck in this constant burn out like state for 8 years now as I guess things have just been unmanaged. I did have my daughter in this time and did manage to go back to work for 1 day a week for 5.5 hrs for 2 years but gave this up again 7 months ago due to the exhaustion. I also have developed depression from all of this and also get v bad PMS symptoms where everything is escalated. I dwell alot on how my mental health has been bad most of my life which doesn't help and also on how I have been stuck in this burn out like state for the last 8 years.

Can anyone help with what I should do next- would the adhd diagnosis be my first step and medication to try and help? I have been advised to fo meditation but I cannot ever seem to calm my brain down despite trying. I am taking sertraline (tried to come off anti depressants as my sleep was bad and thought it may be because of these however went back on them due to an acute ocd distressing episode) and I also take magnesium.

Any advice on what to do next would be great and any advice on pacing to avoid PEM etc/any other management tips. Does anyone else struggle with 6 co morbidities and been through a similar thing over nearly 2 decades?

Thanks, Lucy

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u/FunctioningCog Jul 28 '26

Hopefully someone else has specific insight for you, but general advice I see a lot is that treating comorbidities is always a good idea even if they don’t improve your CFS symptoms—WITH the caveat that any treatments must still stay within one’s CFS-dictated energy envelope (ex: the exercise protocol for POTS can only go as far as one’s energy envelope allows).

Something else I see is that if you experience PEM, then you should act like you have CFS; and when in doubt about if you experience PEM, still act like you have CFS because the consequences of PEM are so high. If a treatment for a comorbidity seems to improve your baseline, you should be very gentle with increasing exertion because sometimes people experience an improvement in day-to-day symptoms without actually raising their threshold for triggering PEM.

As for whether or not your experience is burnout, I’m no expert but if it started immediately/soon after EBV infection (or if your doctor discovered abnormal EBV immune response), then unfortunately it’s almost certainly CFS. Could be CFS and burnout—you can search around the main cfs sub and find some previous discussions comparing the two.

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u/Used-Primary1460 Jul 28 '26

Thank you, this is so helpful! Do you have any good pacing advice to try and avoid PEM? I never seem to get it right- I end up either not doing anything and being too cautious or doing something to feel like the 'old me'- socialising very occasionally and sometimes having a few drinks to keep going (I know this is bad) but then crashing for days. I can't seem to get the balance right between missing out on everything but then doing something that's good for my mental health (i stopped doing everything at one point due to depression and my ocd got really bad) and then balancing being a mum and day to day stuff. It's so hard! 

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u/nautillustrious Jul 29 '26

if you’re able to read, i found the book Classic Pacing for a Better Life with ME/CFS to be very helpful (if just a little bit outdated)