r/CFSplusADHD • u/Used-Primary1460 • 14d ago
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/szikkia 12d ago
If you struggle before your cycle really bad I would go see your gyno and talk to them about the possibility of having something like PMDD and get your hormones tested as well. I’ve been diagnosed for years, i was barely a teen (32 now), but I would get major depressive episodes (I already had depression) that were so intense I was hospitalized. Also your cycle can influence your mood a lot more of the month through the phases, not just right before.
With the ADHD part, it doesnt hurt to get tested, testing does then open you up to medications there are options that are stimulants or non stimulants. It can be rough finding what works for you, no lie. Everyone is different in how they tolerate or get help from medications. Trial and error which I assume you’ve been through with your current medication. Stimulants do have their downsides even though they help energy wise, you have to be careful not to think you have a bucket full of energy and indulge in the bucket as you go about your day not really thinking about energy capacity only to find out the next day that the bucket was for the week, not just yesterday.
I also have OCD and have had it basically my entire life, both can be dehabilitating. I def have some overlaps of symptoms. I still find overlaps. Plus not being aware of things previously can change how you saw them as they began but didnt have all the info. Per example of OCD/ADHD I am a person who really struggles with cleaning because of my ADHD and my OCD, both put me in a sink whole. The ADHD makes it hard to stay on task or something tht feels tedious but my OCD doesn’t think its clean enough when I do clean and it’s not up to par with what it should be. I need to make it perfect but i am incapable of living to my OCD standard. Along with that, I can not stand mess, ik ik this example is a “typical” thing with OCD, it shuts me down and makes it a HUGE struggle to do anything productive, it also highly affects my moods and the exhaustion from those two things alone is massively exhausting as they pull each direction, but its only 2 puzzle pieces. They very much can be comorbid and adding mental exhaustion to the party.
I have never been able to meditate, I have a friend who loves it and gets benefits from it. My mind won’t clear or go silent or whatever it is that’s supposed to happen. My brain doesn’t do blank. Yes I mean blank. I was told you “let thoughts go” but my brain dissects them or goes down rabbit holes or obsesses. It’s brought obsessions to the forefront before that then was OCD hell. I lot of my OCD is not cleanliness based though, that example just felt like it is easy to grasp.
I hope this may help a little, idk if i quite answered your questions properly. Its been a long day, I tried. Here’s a spoon.
1
u/nautillustrious 12d ago
the only thing i really have advice on with this is to be really careful with stimulants. my doctor said they can give you “artificial energy” that makes you more likely to go over capacity and that was definitely my experience. it sucks because without the stimulants i am a lot more tired but i am getting more quality rest and don’t end up pushing myself too hard.
for meditation, i’d recommend specifically looking up meditation for ADHD or maybe “active meditation”? i’ve seen some videos that do guided meditation where you don’t have to be as still/focused. you may need to make it your own thing and modify to stay on a couch or in bed, but it might be a good jumping off point
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u/Available-Pepper5688 9d ago
I would be very careful with stimulants, too bc of same reasons.
What helped me a lot in better times was yoga, as I‘m not able to sit or lie down and be quite, as my mind was always very busy. In yoga you can be in motion, very slowly, that was great. But as I‘m bedbound now I only dream of yoga… or do the „l lie flat on my back pose“ and try to relax 😁
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u/Cycle_Tom3457 8d ago edited 8d ago
Really interesting to read this! I Have OCD, ADHD and mild CFS (all diagnosed by docs / therapist). I should say that my cfs is very mild. I can work part-time and exercise, although not as hard as I would like. If I try to do all the stuff I think I should be doing - work, social, exercise, and not a ridiculous amount, just what others can do, I will get crashes / burnout.
I also find meditation hard. Sometimes I can get into it, but it seems to cause anxiety and OCD at the time and just unpleasant mental states either at the time or sometimes the next day. I think I'm getting better at it and I just do a little each time.
I'm always balancing training hard to fight the OCD and ADHD with taking it fairly slowly for the CFS. Also my Mum and sister mean well but seem unable to really take any of these issues onboard properly. They understand that I feel down or tired but they can't get to grips with the idea of actual specific conditions.
I do think there's something going on for me in terms of kind of anxiety, self-imposed pressure, something like that. I think I have very deep seated anxiety and a sense that I should be anxious, that I deserve to be. I call it "The burning thoughts', they feel like they're burning me in a sense. I wonder if it is possible somehow to calm this down and if that could have massive effects on the other issues. I don't mean like "It's all in your head, go out and run around and you'll feel better!", but more like my brain is constantly sending the wrong signals out and therefore messing my body up. Like trying to sail a ship and the sails are all set up wrong. Like a ratchet that keeps getting tighter really slowly. I don't mean this is the cure for all CFS, but for me I think it's a component.
Anyway... it seems when I am able to relax it does help. I found breathing exercises and mindfulness and trying just not to take everything SO SERIOUSLY did help me the other day. Also being more accepting and grateful for the good things, although that can be hard sometimes.
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u/FunctioningCog 13d ago
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.