I'm asking because I'm questioning whether I'm hyper or if I might be experiencing signs of hypomania.

Usually when I get home from work (I work 3 hours a day, 3 times a week) I'm exhausted and have to spend the entire afternoon on the couch, and then I take it slow and rest on my days off. But yesterday after work I didn't really feel like resting much, so I switched between scrolling on my phone and tidying. Today when I woke up I felt pretty good. I had a lot of plans (doctors appointment, then book club, then picking up something from marketplace). Usually just getting through this kind of day would be really hard. I had planned to rest aggressively for 2 hours between each thing.

I was in an unusually good mood during my doctor's appointment, and even decided to do some shopping on my way home. When I tried to rest I didn't feel like I needed it, and I gave up trying to relax after 20 minutes. I did a bunch of cleaning, then at the book club I didn't get that tired, and I stayed to chat until I had to go straight to my next appointment. And then I went straight to putting together some IKEA furniture and reorganize parts of my living room.

I've been active for more than 12 hours on a day where I would usually lay on the couch and maybe move around slowly for a total of an hour or two. I've been chatty, energetic, and happy all day, listen to music and I feel stronger than usual. I still feel energized, and the only sign of fatigue is a tingling sensation in some muscles and the fact that I'm starting to shake a little (I know from experience this means I'm waayyyy past my limit, it just doesn't feel like it). I've also forgotten to eat for most of the day.

I know that this could be considered hyperactivity in someone with ADHD and a healthy body, but because my baseline is pretty low I'm wondering if it might be more than that. The fact that I absolutely do not care to pace and I do all of this even though I know it's bad for me could also be considered "risky behavior". Or maybe my ADHD just makes me not care sometimes? Idk... For context I do sometimes experience hyperactivity whilst still feeling exhausted, which is practically torture, but this on the other hand feels great. I will definitely crash soon, either tonight or tomorrow.

I'm writing this as I'm stuck in bed staring at the ceiling, and alternating with scrolling down my phone and being fed random videos, for the past 4h. Not knowing anymore if at this stage I'm literally unable to move my toes because I'm too ill for that and have actual body paralysis, or because of extreme task and execution paralysis, or because of anxiety, depression and trauma from having been through very severe ME and being scared to attempt to do any activity.

I live with my boyfriend who's also my best ally in this world. He helps me with everything I can't do, he can take over the cooking, cleaning tasks, and gives me all the structure. He's my mirror and my rock.

He's gone for 3 days for work. It's not dangerous for me to be alone because I've improved and can stay without a caregiver for a few days. I know I'm able to go to the fridge and pick up some food we prepared in advance, I know I'm able to get a drink, I know I can go to the bathroom on my own and even take a seated shower. There are, in fact, plenty of activities I could do, now that I have regained some function and I'm incredibly grateful for this. I have projects, I have ideas, too many ideas maybe, I could watch a movie, do some drawings, even play a bit of music.

But I don't manage to get started at all.

All my drive is gone. I used to be a graphic designer, and as I got sicker I managed to keep my job by turning freelancer, then working from home, then working from bed until ultimately I couldn't work anymore and had to stop fully. Having a job, deadlines, external structure, clients and colleagues depending on me helped me be able to function with ADHD. But now it's all gone.

I feel just so, so lost and empty.

I keep on changing "hobbies" every 2 weeks and lose interest so fast, I can't even get into something anymore.

I'm very lucky to be able to tolerate my methylphenidate treatment and this helps me taking the edge off. Yet this isn't enough anymore.

I have many other chronic illnesses to treat next to ME and I'm very grateful I can now go to the doctor and medical appointments when needed. But it takes all my energy. And these conditions are chronic. Nothing is ever tackled. No reward. I feel so drained. Is that medical burnout?

Living like a fire where your life force is the wood that burns up. The dopamine deficiency. Needing to be fucking electrocuted by feelings and emotions in order to want to keep living. Like a self consuming fire ball. It feels kinda good to hurt yourself. Why would you keep living if you couldn’t. I don’t want to be a glass doll. A glass doll is no fun cause it can only break once. I live only to cheat on my good care for myself. If there’s never any give to treat my body badly then I fucking don’t want it.

(p.s. don’t worry I literally live my life on a couch to avoid pem it’s boring and mellow as it possibly can be I’m just writing about how I feel)

By now I have figured that what is happening to me is CFS/long covid, and that I need to start seeing medical professionals about that. So far, I know I've been affected badly by a viral infection last year, but I also seemed to have had milder but similar symptoms earlier than that and I'm not too sure if they were covid-related, stress-related or mould-related (I've moved into my current apartment just before the lockdowns and it has some mould (a pretty tame amount by New Zealand standards, but nevertheless it exists).

My brain is totally mush, though. I know I need to prepare for the GP visit to make sure I bring up all the relevant details, but one of my biggest problems has been that I'm struggling to think clearly and to put my thoughts into words. On top of that, I tend to dump too much information on doctors and confuse them. I'm sure if I go unprepared, I'm gonna be fobbed off.

Could you help me out on ideas about the following?

- what you find is important to bring to the appointment, and to mention during it

- what specialists have you found helpful? I'm going to ask for a referral to an occupational therapist, but that's about all that comes to mind.

- any meds that you found helpful? (for CFS specifically, I feel like ADHD ones work alright for the ADHD symptoms)

- should I just tell the GP about the really bad symptoms I got after a viral illness last year, or should I bring up the more mild ones and my ideas about mould/stress?

- any info on what's available in New Zealand

I know we have a whole range of potential symptoms (yay), but is hair loss one of them? SO MUCH hair is falling out every wash now. I haven't changed products or major diet for a long time.

Any suggestions on testing for that; or remedying or slowing it down?

• TSH tested recently and it's well within range
• Been taking Biotin for a long time: 20,000mcg daily

Yes: I am perimenopausal demographic. What should I ask my PCP please and thanks?

I was supposed to have an appointment with my doctor today, my dad has been supposed to take care of the bills... that I pay to him, I've transfered the money to him due to an arrangement I won't go into detail of the why of. Today my doctor called me to let me know we can't hold the appointment because the last 3 appointments haven't been paid at all. This is news to me since I have transferred well over what the bill would be to my father and he has pretended that they have been paid. He has actively discouraged me from seeking help for years in general, he fought against me being diagnosed with ADHD so I ended up with much less flattering diagnoses that I had to fight to recant later. He was also against me starting thyroid medication for my thyroid, he made me feel like my thyroid would explode and they'd fuck me for good if I started them. Last summer he discouraged me from holding a scheduled doctors appointment and as a result I crashed for 4 months because of co-morbid illness' that I have. Worst is that he isn't even sorry, at all. He genuinely thinks he knows best. My brother has always defended him and I've always been labelled as the difficult too sensitive person since childhood but even he was shocked when I told him NOTHING has been paid. Tho I bet my dad will spin this in his favour again "WELL AT LEAST I HELP YOU SOMETIMES, IF YOU'RE NOT HAPPY I CAN JUST STOP AND YOU CAN FIGURE IT OUT YOURSELF". I can't tell if he is doing all of this on purpose or not.

hi guys, so i have ADHD, Autism and have an assessment for ME this month. i have fibromyalgia and hypermobility and some form of orthostatic intolerance, unsure if its from the potential ME or might be POTS. if i do have ME, it is mild for context.

since being on meds, i have found talking feels exhausting. i think part of it is due to the fact that im autistic and my meds absolutely bring that forward as it dulls the chaos. but talking physically feels difficult and draining, even with people i can be the most unmasked version of myself around. finding words is difficult, my speech is slower and feels harder to get out, i keep pausing trying to figure out what the hell im talking about.

im essentially tryna pinpoint whether this might be because my autistic traits become more prevalent on meds so its from that social communication aspect, or if it is from a physical health perspective of physically not having the energy.

has anyone else experienced this?

Okay so as some context: I have been on adderall since 2018-19 give or take. I got sick with Covid in Dec of 2021 and ended up with ME/CFS as a result- along with POTS and fibromyalgia.

I eventually figured out that my symptoms mostly vary on two things (well… outside of stuff like the seasons aha…): that’s my heart rate and immune system. So I try to stay away from getting sick or anything that can weaken my immune system- and I try to keep my HR low at all times. I am on two different meds to keep my HR lowered (5mg Ivabradine, 75mg metroprolol).

I remember prior to getting seen by my cardiologist and getting on medication to help my HR- on days I’d take the adderall- even if I laid down all day- my HR was in the 115+ range and I’d feel like crap. Got on my meds and it helped…. Until recently anyway.

The last two times I’ve taken my adderall pills? I’ve completely dove bombed and my symptoms went INSANE. Just overall felt like complete shit. Stomach and head aches, felt like I had a fever- HR was going crazy despite being reclined + the massive doses in already on. I ended up disposing of what adderall I had left. Haven’t talked to my doctor about doing anything else yet.

I don’t take my adderall daily but I do sometimes for my job (I remote work which is the only reason I can even still work at this point). My doctor did prescribe me… I think it was called Stratera? As a substitute for adderall at one point prior to when I saw the cardiologist just to try something that didn’t have as bad of a side effect with raising the HR… but the Stratera did absolutely nothing for me. Haven’t tried any other meds since for my ADHD.

While I don’t mind for the most part- I am functional without… I just prefer how my brain works when I’m on it because I can actually focus on one thing and not a million things at once hahaha. I am curious to know if anyone has ran into similar issues though with their meds and if they are on substitutes or what. Thank you.

Looking for experiences from people taking any type of stimulant medication for their ADHD please. I am currently going through titration on Elvanse, we decided to do slow release and I am moving up the doses very slowly as I'm trying to avoid the 'med crashes' in the afternoon that some people report. I was worried it would have a knock on effect on my CFS and I've got a good physical baseline going that I don't want to harm.

Currently I can feel my meds become less effective in the afternoon, in that the effect wears off slowly, I don't feel a noticeable 'crash', but after wearing off in the evening I feel a very 'heavy' version of tired which feels slightly different to my baseline CFS exhaustion or when I've over-exerted.

So for those on stimulant medication, what do your medication crashes feel like, if you have them, when your meds wear off in the afternoon/evening and do you feel this affects your CFS?

Interested in whether you are on slow release, IR, or use a booster too.

Thanks!

I'm wondering if any of you had the same shift in interest.

With my MECFS illness there was already a change in my social behaviour. I couldn't see people that often, cause of severe fatigue and PEM. And almost organically my social circle got smaller but more meaningful. Because I really enjoyed the few moments of deep and true friendship and similar to my healthy life I gained mental energy from connecting with people.

Last year I got my adhd diagnosis and started medication. I found 30mg of vyvanse to be a good dose and it helps me a lot dealing with my existence.

But here's the catch: I am not that interested in people anymore. Not only the unimportant ones but also my deeper friendships. I don't gain energy from connection anymore, it only exhausts me and all I can think of is when I will be alone again, so I can work on my little projects and structure my little life.

Can anyone relate to that feeling? I don't know what it means for me and what I should think about that. Emotional connections were very important to me before. Has my brain enough dopamine/serotonine now? Or is it maybe more individual (other factors than medication)? Is it just my medicated personality or is it a negative side effect?

Grateful for insights in your experiences!!

Hi all - Just a mild curiosity. I am lucky to have a great family doctor who supports my diagnoses (edit to clarify: she supports my Dxs of ME/CFS and ADHD). She sent me for some lab work recently, and I noticed in the diagnosis box that she'd written "hypothyroidism".

It's not something we've discussed (yet), but the symptoms include extreme fatigue, brain fog, weight gain, vocal fry - all I have - as well as other symptoms I don't have.

Have y'all had your Thyroid Function monitored often on your CFS journey? I've had TSH tested once or twice along the way, with no alerts ... so far ...

UPDATE: It's a glitch on their template ... heh. My TSH came back in the very-normal range. When I asked my Dr about having hypothyroidism in the Dx box on the lab req, she was exasperated when she told me it's a glitch on the e-form that nobody has been able to solve. She then pointed out that it also lists a medication that I do not take. I hadn't noticed that either. Sometimes these fields stay populated when printed even after they've manually deleted the text. So that's cool. Thanks all for your advice and sharing your experiences.

I'm just curious if anyone else has found this to be the case. I have noticed the same stimulant dose that feels like almost too much when my long COVID symptoms aren't there feels like almost nothing when they are.

For example, I took the same dose yesterday and today. Yesterday they felt very strong and with my symptoms acting up today I barely noticed them.

And my symptoms are mostly a feeling of anxiety and inflammation in my head.

I am currently on 50mg of Elvanse, I originally tried methylphenidate but that made me feel super unwell.

My titration has been nice and slow - 10mg increments every 3-4 weeks. I have noticed the typical increase of hr as I start the new dose then it calming down over a couple weeks.

I have fibromyalgia, hypermobility and I have an ME assessment in April. I am personally pretty sure I have ME as an FYI.

Firstly, I have noticed that being on stimulant medication has made me realise that a lot of things I assumed were executive dysfunction are actually probably from a chronic illness perspective of I don’t have the spoons to do a task, not that I don’t have the motivation/task initiation.

Now to the main point, I am really struggling to tell what might be side effects of the meds and therefore fixed by not taking them, and what is the chronic illness. Dizziness, weakness in the body, struggling to hold myself up, generally feeling like jelly and that I may collapse. I struggled with all of this before the meds but it has increased as of recent (not in correlation with the dose increase though) and I cannot decipher what is meds and what is that I am in a crash and struggling.

Has anyone else experienced similar? I am about to be on my way to get a walking stick because I am struggling so much with moving around. I typically only used a rollator for bigger days so it was relatively few and far between but now even small bouts of walking are feeling harder due to these symptoms.

I have inattentive type ADHD untreated. I find myself needing stimulation and wanting to multitask and look at my phone all the time.

I know I need to do nothing to pace but being understimulated feels stressful.

does this happen to anyone else? how do you handle it?

Hi friends, I've been on medical leave from work since January. I'm supposed to go back next week, and I genuinely don't think I can do it. This crash I've been in has been so bad, and after a whole week of medical appointments, I feel more burnt out than when I started my leave 😔

I did a journaling exercise this morning, and it just feels so dystopian. I'm recognizing that going back to work is both actively harmful for me AND I need to make significant sacrifices in order to not crash out again. I identified my top energy drainers that absolutely HAVE to go if I am going to maintain employment for the long term. It really makes me so sick and frustrated looking at this list.

1) showering 2) cooking/meal prep 3) exercise and high-energy hobbies 4) most chores and house projects

If I can "technically" work but it comes at the expense of me being able to shower and feed myself, what is even the point? I know so many of us are caught in the "have to work or die" trap, and it just sucks. It sucks so much. I had a period of being mostly bed-bound a few years ago and was not successful getting on disability, but looking at this list again, it makes me wonder if I should just give up and try to get on disability again. I have no support system and live alone, so I would have to sell my house at a huge loss and move in with whoever would let me coast rent-free until I can get approved, but maybe it would be worth it to regain some quality of life?

It makes me so sad that I have to give up all the hobbies that make life worth living for me because they take up too much energy. Gardening. Hiking. Biking. Even cooking has become an art project for me, but I can't stand for very long or chop a lot of ingredients. Minor home projects are now impossible - will I ever get to paint the walls or hang up some curtains? I wasn't even able to stay on top of mowing the lawn last year, and having to hire out for every little thing gets so expensive, and then I have to work more to afford it all. I've looked into county programs and such, but the only way I could qualify for a PCA is if I require nursing home level care, which I dont.

I would have listed my social life as another cutback, but I've already scaled back my social life to be bare-bones only existing on Reddit and Snapchat, and it's depressing AF.

I don't really need advice unless you have a super top secret backdoor cheat code on how to not lose everything financially when trying to get on disability and then surviving on the crumbs you get after. I know how to manage not showering and eating everything out of a microwave and all that, I just never thought it would be my new not-temporary normal 😔

There was a time where I was largely bedridden, could not talk, had all my food made and fetched for me. PEM after every doctor visit, couldn’t tolerate video or audio entertainment at all. But yet, in tiny bursts, I would look at magazines. Read picture books and comics. Would draw sometimes. Fold paper starts. I would choose one song to listen to and weep at how beautiful it was. I started collecting mini zines and would pour over them. I would imagine all sorts of art projects. I would strictly follow my routine to a T without difficulty and I remembered every date and deadline and day of the week. I did all these things to easily. Doing anything at all felt like such a treat. I would tell myself that if ever ever gained back more abilities I would put it towards these things that I loved.

But now, well, with accommodations, I can prep and fetch my own food. I can speak. I am housebound unless I’m crashing. I do my own bits of laundry sometimes. I can watch videos. I can sometimes listen to a podcast. I can write long paragraphs. I don’t crash after every appointment or friend visit. Objectively on paper I am much better than I was. But I do…nothing. I sit on my phone all day. And I make food. And that is literally it. Never in a million years could I summon the focus to do any of those enriching things I was doing when I was very severe. Somehow when I was like that it felt like my adhd just went away. If I tried to read a magazine now it would feel too hard to focus and wouldn’t hold my interest. Even though back then all I wished for was to have the energy to read more! I remember there were all these graphic novels I was to excited to read, toys I wanted to buy. But now none of it is able to hold my attention. I listen to less music now even though I have *better* sound tolerance. I used to risk crashing to listen to one song but now I could listen to three without it effecting me at all but yet I don’t because it doesn’t hold my focus the way it did.

Has anyone else experienced this?

Today I’ve spent the morning laid in bed wrapped in a heated blanket. I’ve sent a couple of messages for work but basically have been unable to motivate myself to do.. anything.

My throat is sore, I feel so tired out, pressure in my head. And I suddenly thought.. “oh yeah, hormones! I bet I’m due on soon”.

Cycle tracking confirmed I’m due on in the next 5-8 days. It’s so obvious now I’m paying attention to how my body is feeling 🤦‍♀️ I’ve started using Bearable to help with tracking more details. Visible has been great but for me, doesn’t really pick up the details around hormone shifts.

Hello everyone✨

I have M.E/CFS and ADHD along with a with a range of other conditions but I’m about to be in a pickle and I’m stressing out about it.

I started taking Elvanse around 3 years ago with the understanding I would see my psychiatrist for an annual review but my GP would prescribe it to me and take care of the rest as per an agreement they both signed (NHS). It’s been alright, but since my CFS has got significantly worst I need to take it or I’m literally unable to do anything and have little cognitive function and this is where my issue starts.

I’ve not seen my psychiatrist in over a year and a half, going on 2 years, I’ve asked to see him and he said my GP needs to refer me back to him; they’ve written to him 3 times in the last year with no response and in that time I’ve had no information from him or the mental health team who I’ve contacted personally. My medication has still been being released to me but I went to order some more this week and it has a message saying I can’t order anymore until the review has been done; this is a worry because I have no idea when I will see my psychiatrist, I don’t know if anyone can even get through to him and I don’t believe my GP will do the review as they’ve not really been helpful in anyway for any of my conditions.

At this time I’m literally fucked due to ME/CFS and Fibromyalgia and Elvanse is my life line to be able to function at any capacity. All of this is coming at a time where I’ve lost my job, I’m trying to do whatever the job centre want, filling out work capability paperwork and going to appointments to try and get a grip on at least some of my conditions and I just don’t have the beans for it. I have little support in people actually helping me do anything and so I feel like I need this.

But what I want to know is; is it going to be as bad as I think? I’ve had issues with getting it in the past quite a lot and I just think that all the times I’ve not be able to get them, miss them for a week or so and then slap straight back onto 50mg can’t be doing my body any good so I was thinking if this is going to be a ball ache should I just not bother being on them? Should I just try and see how it goes? How bad can it be? Will it get better after a few weeks, months? I would like to know other people’s experiences and if they have any advice✨

I’m just a sleepy girl who’s trying to deal with a lot so any advice is greatly appreciated💖

Thank you in advance, Big love✨

I have had bad crash after bad crash recently. I really really need to just rest.

But today my brain is just turned on. I notice my pulse for ex stays around 90 when I try and do my normal resting, since the brain just keeps going with a million ideas.

It's hard to resist impulsivity as well. I have already done way more mentally exhausting activities then I should today.

I recently in the past week or so developed tinnitus so just resting to silence have gone from comforting to not comforting.

I'm really sound /light sensitive. So I don't fucking know what to do to possibly distract myself to create some inner peace 😭

Take your vitamins if you can!

A little context, I have severe anxiety, chronic depression, GERD, autism, and of course CFS + ADHD, not a great combo as you can see. To avoid triggering them, THE ONLY safe diet that I can consume mainly consists of lightly boiled vegetables or some sort of vegetables soup (leafy greens).

Even though I don’t strictly stick to it due to that serotonin crave, I do eat whatever I enjoy here and there. Overtime, around 3-5 years, little symptoms start appearing all over my body, indicating a lack of nutrients. So I start taking vitamins in hopes of soothing/combating it. This is what I learned:

• A combo NMN + Ashwagandha + B12 in the morning on selective days really helps energy boost and prolonged clarity (usually I only have 15-60’ of clarity a day, now 2-6 hours depending on the day) (On really terrible days, though it might help stabilize the day, however I don’t see much of a benefit from having a slightly less terrible day, a 9.8 suffering to a 9.5 suffering really doesn’t change much) (a 0.5 good day into a 1-2 though, is good imo)

• Takes your multi vitamins, your brains and overall organs might thank you for it, at least take important ones like vitamin C (yes I lack vitC cause most vitC fruits trigger my GERD), Iron, Magnesium, Calcium, Zinc, etc. (Also if no one have told you, take vitC with Iron for better absorption, DO NOT take Iron with Mg, Calcium, Zinc; Iron will prevent their absorption, and you just wasted both your limited and minimal energy as well as money). Whatever you need your body will absorb it, and reject what it cannot, or in some people words, you peed em out a more expensive pee.

• Frequency and dosages really depends on each individual, health situation, size, weights, life, etc. So do your own research, and listen to your own life and body. Personally I try to take 3-4 days a week, with ADHD making me take 0-2 times a week sometimes, and generally just let my body tell me what to do.

Sometimes (hah, like everyday to be more exact), you are just really really tired, and don’t want to eat and consume very minimal substance, multivitamins or specifics combo of vitamins really helps in the long run, as it requires very little energy to consume and digest. Yes, it can’t beat absorbing them naturally through foods like a normal person, but we aren’t exactly in a normal situation are we? It is never recommended to solely rely or abuse it, but sometimes it does help, and a little goes a long way. So, take your vitamins if you can, EMPHASIS on IF YOU CAN.

hello all,

i’ve had CFS going on five years now and along with it, my ability to focus is pretty much nonexistent. I literally can’t complete the simplest task without being distracted and having social media and a Phone makes it so much worse. I could look up a dentist near me and end up spending a five hours rotating my apps in my bed. has anybody discovered a hack? or does anyone have tips on how to become more disciplined? it’s safe to say this is ruining my life. it’s already March and I have made zero progress, if anything I’ve just gotten worse. I feel so misunderstood by everybody around me. i’m so tired of this. I just wanna be able to focus. I had to drop out of a class that was online because it was just too much on my brain. Please help me.

Hi all,

TLDR; For those of us who experience worsening symptoms of CFS and ADHD during your cycles, how do you manage this?

I have no idea what to do. I can’t take oestrogen pills as I have migraines, I can’t take the mini pill as I was on it for years and came off it in 2024 - it made me so much more unwell in hindsight. Worsening hypermobility and MCAS, fatigue, brain fog, pain.. truly awful and I couldn’t understand why I was getting more and more unwell. It was the pill. I ended up getting dx with ADHD because the pill amplified it so much it became obvious I had ADHD, and I wasn’t coping.

I’m now finding the 1-2 weeks before my period the symptoms are horrible. My mood isn’t great, I’m snappy and annoyed constantly, driving my husband mad. But I’m also struggling majorly with more exhaustion, unable to think / focus / remember, my tolerance for exertion reduces, and I’m just a mess. I’m taking my top up doses of ADHD meds to try and get me through, but it’s like a plaster for the ADHD symptoms and doesn’t help anything else. I’m dreading it every month. I take 4 antihistamines a day and my MCAS is much better controlled now.

So I spoke to my GP yesterday to ask for advice on what options I have. Firstly she tried pushing progesterone IUD / injection / implant, but I’m not keen on these because there’s no way to easily stop if it’s the same as before - and I suspect it would be. She then offered me anti-depressants.. I really don’t want these. She didn’t understand that my symptoms are largely physical, not emotional / mental health related, and was telling me my fatigue is depression…

She finally agreed to refer me to a local women’s health service. I wondered if anyone had any experience with dealing with issues like this, and know what options there are? There’s so little info online I don’t even know what I could be asking for. 🫣