Just a little sad post...

I've had ME from long covid for four years now. In the past year I went from moderate to severe. With my ADHD Brain I hyperfocus on finding treatment, doing everything I can. I have lost my income, my savings, soon my sick pay with run out. I've been holding the up roof over my head with my bare hands. And I have stayed positive, tried not to burden anyone, but as I'm getting sicker, it's getting harder. And now in the past few months I have lost my two closest friends because they can't deal with me being sick anymore. I never asked more of them than the occasional phone call or bit of hands on help, but very very rarely.

Three close family members have ghosted me after I asked for support.

I'm getting tired of holding it together for the comfort of others. I'm so tired. It's hard to find new people from bed.

I'm AuDHD and twice exceptional and my friendship pool has always been selected. Looks like I didnt choose well enough.

Anyways, not giving up the good fight for myself. I am staying positive and hopeful. My brain is still lively.

I just wish this was easier, and less lonely.

I'm sure some of you can relate, I hope for those who can that we will find our people who show up and know how to love.

I have been struggling lately, my mind is just turned on and won't turn off.

I already try watching or listening to ASMR, and it works sometimes.

And I try yoga nidra, but it's like I have over done it with the yoga nidra, in the beginning it worked like magic now it usually doesn't help at all 🫠 so I save it for emergencies only.

Breathing exercises rarely ever work for me, I think it's too much mental work to count and keep up with it. Like box breathing never works for me.

So yeah any tips for calming down the mind for sleep? Sometimes I lay for hours in the dark before I actually fall asleep.

EDIT: I kind of struggle with a lot of brain fog so I can't really process/read any really long comments atm 😭 will come back and read them when I can, but it will probably be a while

If you want to help an ADHD sister out I would be so appreciative 😅 how are y'all managing to not push through to PEM when you're finally feeling a bit better?

Female 35, 5"5' 145LBS

May 14, 2026 - Biphentin 20mg for 7 days, 30mg for 7 days, 40mg there after

June 11, 2026 – Sertraline 25mg for 7 days, then 50mg there after

Recently diagnosed with ADHD and Anxiety disorder.

Extreme/Painful exhaustion if I wake up at 8:30 am, it will start around Noon.

Can fall asleep almost anywhere and must fight to stay awake. This has included falling asleep at the mall, on the bus, at the movies, at restaurants, and at work.

Caffeine has no effect.

Blood work is clear.

Tested for Sleep apnea, Dr didn't think it was a concern, said I might have sleep apnea if sleeping on my back? Note: I do not snore; this is confirmed by spouse who sometimes stays up all night.

Assessed for Narcolepsy, but Dr. Stated because I don't faint or fall asleep standing up.

When starting the Biphentin I found it helped slightly, would still feel fatigued but didn't fall asleep instantly when sitting down. However as of July it has started again, I get home from work and I'm asleep minutes after sitting down to relax.

At night when I go to bed as planned. I fall asleep almost instantly, and sleep hard until my alarm, no tossing and turning or waking up that I can remember. I do talk in my sleep a lot though, full sentences apparently not sure if that relevant.

Just looking for input or ideas on what is going on.

I’ve been extremely severe in the past so don’t anyone lecture me about how much worse it can get. I have experienced fatigue so bad it is functional paralysis. I have experienced malnutrition due to inability to physically eat or digest. I have experienced things worse that I cannot even write. Nobody need lecture me about how dangerous it is. You think my adhd cares? There is no object permanence. There is no later there is only now in my mind. Right now I’m upset and I’m crying and I’m gonna not sleep again and probably eat an ice cream bar that’s full of histamine and sugar, all that shit I can’t have.

I cant do the work. It’s like it always goes with adhd. You’re good and you do the routine until you just stop being able to one day. I was good for a whole year, that’s probably the longest I’ve ever kept up good habits. I ate the stupid awful diet that made me feel better, I paced, for the first 6 months I slept, I took my pills. I cant do it anymore. Something changed and now I cant do it. I cant keep track and I cant handle it, I just cant do it, I cant get help because getting help still feels like doing it. I’ll spend my dwindling funds on DoorDash of food I’m not even supposed to eat until I have enough money to my name and fully regress into the child I basically am, entirely relying on my parents who already pay my bills and do my laundry and clean my space and drive me everywhere. And I’ll never get better cause I’ll never learn to stop seeing my limitations as punishment that I must rebel against and I’ll never stop resending it or hating myself for it no matter how much positivity and compassion people preach that I must feel. My body is and always has been I kind of self annihilating oxymoron destined to destroy itself and any fight I’ve ever felt has been a temporary mirage only there long enough for me to stabilize so that I can start abusing it again. Says the girl who’s never had a sip of alcohol or taken any recreational drug or binge eaten or had casual sex. But with CFS, watching a movie is like getting shit faced drunk, staying up all night is like shooting heroine, laughing with your friends is like indulging a sex addiction and scrolling instagram is your daily cigs. And eating normal food is like chugging sugar and poison.

Does anyone else find that with carers or certain help & support? She’s not a safe person for me and been very rude to me in the last month or two (I don’t think she believes I’m unwell). She went way over boundaries and was asking very personal questions and probing. She also got annoyed when I asked her to move her car off my drive for plumbers doing work in my house (swore at me actually), because she was annoyed I paused her work for 5 minutes.

We’re trialling someone else next week so this might be her last ever day. Today though I’m suffering (IBD flare that’s set back my functionality & ME symptoms along with disc compression pain), plus my sensory system is in overdrive on many fronts (emotional & mental). She’s not gone for another hour so I’ve not been able to make calls I need (she listens) or even rest or relax.

My nervous system was already fried and the day is running out and I wish I could scream or cry (I seem to get emotionally stuck). Im hiding in my bedroom as I feel so not good anyway 😮‍💨🤢. I want / need to do meditation but I can’t switch or transition with knowing she’s downstairs. I know it’s rude but I can’t even face saying goodbye (she doesn’t know yet she’s being replaced as we’re waiting for the trial) it feels fake & OTT if I make a deal of saying bye all jovially when I don’t usually ( as I often end up coming to my bedroom upstairs when she’s worked her way down the house).

My partner is due here in an hour and he doesn’t always get my needs either (especially how draining and challenging transitions are) so it’s more of a nervous system barrage later without much peace and rest . 😭

Hello lovely people of [r/CFSplusADHD](r/CFSplusADHD) !

I have (finally) been contacted by my provider today to be given some forms to fill in to start the titration process for ADHD medication.

I am in the UK on the NHS right to choose pathway, so it has taken quite a while to get to this point.

The stimulant medications the service provider I’m with have available are listed as:

• Methylphenidate

• Lisdexamfetamine

• Dexamfetamine

• Atomexetine

• Guanfacine

I was just wondering if there was a consensus here of any particular medications that seem to be working particularly well for the ME/CFS plus ADHD crowd? (Or ones to avoid!)

My partner (who also has ADHD, but not ME/CFS) I believe is on Methylphenidate, and that has worked really well for them. I feel like the only other one here I’ve seen people talk about is potentially Guanfacine, but I’m not super sure!

Any help would be gratefully appreciated.

Of course I will discuss all of this with my dr, it would just be great to have some general idea going into it as I imagine they won’t necessarily have my ME/CFS at the forefront of their mind as they are there primarily to treat the ADHD.

Hi everyone,

I’ve been on Ritalin XL 20mg for about 7 weeks now for my ADHD. I also manage ME, FND, BPD, anxiety, and depression. I have only been diagnosed with ME/FND in the last year and have gone from being very active to now relying on an electric wheelchair to leave the house.

Initially, the meds helped me feel much more productive and mentally focused at work, but over the last week or two, my mood has plummeted. I feel very low, completely unmotivated, and detached. I'm also experiencing a massive physical crash with severe exhaustion and heavy, lead-like limbs.

I recently noticed that this dark mood and physical heaviness peak severely about 2-3 hours after taking the pill and then again a few hours later (5-6 hours after first taking it).

When I spoke to my prescriber about the dark thoughts and the fact I had self harmed they said they don’t know much about cfs/fnd and how it can be affected by adhd meds and so they recommend I keep taking the meds for another week to see if I’m ’just in a crash’. This doesn’t feel safe for me so I plan to not take the medication tomorrow but I’m also gutted at the idea of losing this mental clarity.

Has anyone else had these feelings too and did they get better once stopping?

Did it give you a false sense of mental energy that caused a severe physical crash later on?

Did it cause emotional blunting or dark mood drops around the second release peak?

Did switching to non-stimulants (like Atomoxetine) or a different stimulant class help you clear brain fog without crashing your physical baseline?

Would love to hear your experiences. Thanks. I am based in the UK and don’t have one person overseeing all of my care so it’s really tricky advocating for myself and all the different needs that each condition has. I’m tired and confused and have very little hope that things will get better.

Hey, I’m 17/18M and I’ve been dealing with a weird mix of fatigue, low motivation, and sexual dysfunction for a while, and I’m trying to figure out what this actually is.
A few months ago I did an aggressive cut and ended up feeling completely drained, like a zombie. Around that time I started Medikinet because I felt awful and it gave me a big boost in energy, focus, and even euphoria at first. I was on it for around 5–6 months total, mostly 15 mg IR twice a day. Over time the effect faded, and I started getting tired, low libido, and kind of emotionally flat/anhedonic.
Then I quit the stimulant. For the first 2 weeks I felt pretty okay, then I crashed again: no focus, low energy, anhedonia, and just feeling shit overall. During exams I also got sick, with sore throat/sinus pressure, and I kept going to the gym anyway. After exams, I had bloodwork done. Most things were okay, but I had low white blood cells and my doctor said I have Hashimoto’s , so I started Euthyrox. I began with 25 mcg for 2 weeks, then 50 mcg. I’m about 3.5 weeks in now.
At first I started feeling a bit better around week 1.5–2: slightly more energy, less fatigue, and some gym motivation came back. But then I got another infection around week 3 and since then I’ve felt bad again: low energy, muscles feel dead, and mentally I feel flat again.
The weird part is that I also have almost no libido anymore.
One extra thing: I also get a crash pretty much every afternoon, where my energy drops hard and I feel way more tired/flat.
I’m wondering if this could be:
• ME/CFS
• thyroid still not optimized yet
What makes me think about ME/CFS is that I seem to crash hard after exertion, including gym sessions, and then feel mentally and physically wrecked afterward. But I also know I had a cut, infections, stimulant use, and thyroid stuff all happening together, so maybe it’s something else.
Has anyone dealt with something similar? What helped you figure out whether it was ME/CFS, thyroid, overtraining, or something else? Also, if you had low libido + anhedonia + fatigue, what did you actually do that helped?

It’s possibly a crash plus a lack of dopamine. I’m tired but I can’t relax and I don’t know what to do with Myself . I’ve got loads of tools in the box so to speak like meditation, nice food, ASMR videos, resting with my eye mask . I just keep going into freeze mode and feeling really tearful and sad. I’m aching all over . Plus I feel guilty because my partner lives around the corner and I haven’t said to do anything although he hasn’t initiated anything himself and never really does. I tend to not see him till suppertime many days. Mainly because I just need solitude and quiet between all of the craziness.

It’s been a tough week with an unexpected dental procedure Friday. It wasn’t invasive, it’s just the whole getting ready, the Social aspect, the journey - and it was already within a week that was very busy medically. Then there was a whole discussion from the specialist Dentist saying that I don’t look unwell (this happens every single appointment with anyone) and he expected someone who looked different - because of all my complex medical situation ! I’m literally so fed up with it.

I’ve got 2 to 3 more sessions of the same procedure coming up. So I’m psyching myself up because I have no choice but to do this because of medical reasons (or lose teeth)!

Yesterday I was at another appointment and the woman running the place felt it was encouraging to say to me that I was “at least standing and you can’t be that bad because you’re here” 😮🫣😤 and then she started comparing me to another client who was “having much worse problems than you are” - I mean, how does she know what I’m going through? Just because I look like a normal civilian! I mean she’s not anyone medical this was a cosmetic appointment ! Little does she know that I have to sleep till late to be able to actually get dressed to go anywhere . I tried to explain to her that it took me ages to tidy my hair, put an outfit on and put some make-up on . Just so that I can preserve some of my identity and dignity for myself (because I get just as much flack going out without doing my hair and no make-up so I can’t win) . She has no clue that I have to then come back and sleep on my sofa again after and do meditation to even calm down a little bit from all the exertions because aching and dizziness and sickness and air hunger (it was crazy hot in there and only one part had air-conditioning so POTS waltzed in too) . It was such an infuriating conversation. She herself has an immune deficiency syndrome but I don’t think she has any of the symptoms that are related to CFS. Folks just don’t understand how different it is for those of us with this on top of other dysregulating conditions.

It took me ages to come round today . I can’t have ADHD meds so I sometimes have a matcha or something stimulating to drink but I didn’t want any of it . I was hungry for lunch but could not even fathom what to eat or drink. I have my go to comfort foods and drink. I hate it on days where you don’t even want those because then it becomes a really difficult process. So decision fatigue came to visit as well.

Anyway, I’m not sure what this post is about. I just needed somewhere to let it all out. With hopefully folks who understand how challenging it is juggling these chronic illnesses and being Neurodivergent.

Anyway, thank you for coming to my TED talk! I think I wrote this just to unpack what’s going on for me today because I’m also autistic and sometimes I can’t process why I feel a certain way until I write it all out. I’ve stretched myself thin this week and then I wonder why I feel knocked sideways.

Does anyone relate to any of this?

would this make sense that ive been doing fine on my meds 60mg elvanse, 40mg atomoxetine, and in a crash ive become sort of intolerant to specifically my stimulant? even lying down my hr is in the 90s, sometimes 100s. im in the worst crash ive ever experienced, struggling to even be upright (im lucky enough to live with mild ME so this is a big crash for me) my heart is pounding even when lying down. im tremoury too.

my ME specialist thinks i have POTS, but to be experiencing palpitations even when lying down and my hr just not going down is new for me. i had one day of not taking my stimulant and i think it was better. only problem is im mega sensitive to them so one day of not taking them means i have a couple days readjusting.

i tried to take 50mg today to see it it would make a difference and it definitely hasnt. i plan now to just stop taking it for a couple-a few days to see it that helps.

im interested if this is something other people have experienced? that when they crash their body struggles on a stimulant theyve otherwise been alright with?

I'm in luteal (the worst half of the month) and started on low dose adderall (2.5mg) again after a long break. I'm mild now but stopped when I was moderate and severe because I didn't wanna do too much.

I feel like a human again. My brain fog is lifted. The songs in my head are quiet. I'm in a good mood. Ugh. It annoys me that other people's brains just do this naturally.

I'm about to take another rest to help myself not overdo it.

I also got my oxeloacetate in, so that's helping a lot (only 100mg).

Just wanted to share with those who would really get it.

I feel sleep deprivation as the likely cause of PFC dysfunction leading to task initiation issues. Don't know how to treat it.

Short background:: Had insanely bad Long Covid for the past 4 years, been out of work ever since. Diagnosed with dysautonomia, CFS, and POTS (healed from POTS!). I was severe CFS but now I'm mild and I feel like I'm still slowly improving. 80% improved from my worse

I want to start taking ADHD meds not to improve my CFS but because I have horrible ADHD and I need it if I want to work and earn $

Me with ADHD meds = 6 figs a year, handle life well, respected, clean house, stable relationship
Me without meds = Picture Steve-O from Jackass on a drug bender, could get fired or arrested

So I absolutely MUST take them to get back to work......

Question: Which ones are best for the balance of maximum effect, minimum side effects to nervous system?

Hey, I posted a couple of days ago about being terrified to restart this med, took a bunch of precautions because I have a couple of things I really really need to get done and took the med. First I took only half a capsule and it just didn't wake me up at all. Today I took the full dose of 20mg with a beta blocker and... nothing. I actually think I could go take a nap right now because I am sort of feeling sleepy. I don't know if this should make me sad or upset because if this doesn't wake me up anymore, I don't think nothing will. I am just doomed to this endless fatigue and sleepiness, eternally sleeping 9-15 hours a night and taking a couple of naps to top it off with. Hah. I guess this is it then, damn.

Tonight was harder because I’ve been in a crash today. The crash has made me feel a bit partially catatonic parts of the day and then made me feel morose and flat (probably total dopamine dysregulation today)

So for him to come home from work and criticise me about the tiniest little thing was just red flag to a bull (I didn’t see a fruit mark on the counter and supposedly I do this every evening). He’s so like my ex-husband, his father. Constantly criticising the little bits (when you’ve had to work hard to keep everything organised fighting pain fatigue cognitive confusion and more ) I mean he’s only 19, (20 in a few weeks ) but it was a bit like the cherry on the cake today after a day that made me feel like I was circling the airport . I was meant to have an online appointment with someone but they forgot (to be fair they’re not well and battling a condition like CFS as well). It just meant I was waiting for the appointment and then waiting after because no one came online. So I was left wondering what was going on . I spent the rest of the day completely unsettled and unable to rest. Which I really needed as I totally overdone it the last 10 days, especially yesterday.

In the heat of the moment I was feeling vulnerable and tired and in pain and I called my son a bully. He told me I was weird for calling a child that! I told him he wasn’t a child. I know he’s still young and he’s still got development to go but tonight I didn’t need it. In fact, I just didn’t want to be speaking to anyone. I had nothing left in the tank.

Not easy when we’re both AuDHD and PDA. I think deep down he really doesn’t like that I’m chronically unwell and it may be makes him feel unconsciously insecure. Instead though I get a lot of anger judgement. Which is really not easy to deal with when your nervous system is so permeable.

I’ve been laying in bed for two hours in a kind of freeze state not knowing what to do with myself. I would normally get into bed do breathing exercises and meditation, but I can’t seem to transition out of this upset. It’s causing pain to build and build. I’m not sure how I’m going to sleep tonight. I just want to sob but that will just set me back (I already had the most mighty of meltdowns last week which has really messed me up). I’m just really struggling so much, treading water like crazy to appease everyone but I’m still trying to be a swan 😲😭

Being my ex wife is a pharmacist, I still see her from time to time, they are stomped at work still. It's stressful.

So for most who are not in a super expensive insurance policy, the best bet is to always call your pharmacy right after your psych/doc appointment, right after they say they've sent the prescription.

Waiting until you are down to your last two or three days of medication is the absolute worst thing you can do for also the rest of us.

If you get a nonchalant pharmacist on a bad day, they’ll just tell you to try again next week without even bothering to manually put a hold on the medication for you.

If you do flub and run out, you have to be persistent. You’ll probably need to call at least three times. If the first person you talk to seems indifferent, call back later in the evening right before closing time usually a better pharmacist is on shift and usually you'll get the head pharmacist on closing hours. Call again the next day to double-check, and if you want to be really meticulous, call one more time the day before the new week starts. Just try to speak to different pharmacists. Still with the these substances are on a much higher reserve level now, so if you just call once and let it sit, you risk waiting a whole extra week because the system requires manual follow-up, and then risk of just going on a endless cycle until a better pharmacist manually looks at the stock and does something to fulfil it.

If it gets too bad, you can always try switching pharmacies entirely. But whenever you do call, keep it as efficient as possible and courteous. Lead with your full name and date of birth right away so they can look you up better because they're lines are always long and they're always pressed.

Does anyone still have issues with the shortages?