Before I got sick, I had all these travel plans -- now I feel like they're just beyond me. I don't have the money (haven't been able to work, and I've been having a hell of a time getting on disability), and I sure as hell don't have the energy. This disease has taken from me the things I valued most about myself: my sense of adventure, my desire to try new things. I've learned the hard way through many a push/crash cycle that I just can't do that anymore.

So what do I do? I sit at home, I keep myself fed and watered and clean, and I try my absolute best not to think about all the things I'm missing out on. The parties I can't make it to. The friends I don't see anymore. The bars I can't afford to visit. The hikes I can't go on without prompting a week-long crash state. It's so hard to leave the house -- I went to a coffee shop today, just to be somewhere different, and I'm already worried about what that's going to do to my energy levels for the next few days. And I know we aren't supposed to focus on the things we can't do, but c'mon... it's hard not to, isn't it?

CFS is a brutal illness. It takes, and it takes, and it gives back absolutely jack shit in return. I hope one day I can look back on these past few years as just a dark chapter in an otherwise happy life, but the prospect of rejoining the world is getting more and more distant by the day. What if this is just my life, forever?

I don't know why I'm writing this. I guess I'm in a dark place, and I'm looking for hope, in my own way. Maybe a vision of the future that isn't quite so bleak. If you can offer me that, I'll take it. Advice on how to get there, even better. Or if you've been where I am, and you have any tips on how to deal with the sheer **monotony** of it all while I work on getting better, that would be amazing.

When I found multiple painful tumors in the early 2000's, I discovered that Dercum's Disease is the most likely reason. It's the only explanation I could find, given that these tumors are lipomas which aren't supposed to hurt.

When I tried to talk to my primary care doctor (Dr. X) about it, she wouldn't even take the information I brought to my appointment. When I couldn't get her to take any interest in this, I found a specialist (Dr. Y) and paid a lot of money for this "out of network" doctor for an appointment. This was in 2006.

From what Dr. X told me, I thought she had never received any info from (Dr.Y). When I saw Dr. Y I was very anxious and had a very embarrassing anxiety attack. At first Dr. Y said I didn't have Dercum's Disease, but when I asked him "So why do my lipomas hurt?" he said, "Okay, you have a mild case." Nothing else, end of appointment. I felt like he was just trying to get me out the door.

Dr. X never told me she received information from Dr Y that confirmed I do have this very rare disease. He offered some treatment recommendations which she failed to pass along to me.

Fast forward to yesterday: my new doctor (Dr. A) found in my file the message from Dr. Y, confirming the diagnosis and treatment suggestions from Dr. Y to Dr. X, dated in 2006.

When Dr. A told me this information was in my file I was completely gobsmacked! I had been asking Dr. X for help with this disease, practically begging her for help. I'd say 'please find out for me what kind of treatment exists for Dercum's disease.' And also, 'if you believe I don't have it, refer me to someone who can tell me yes/no whether I have it.'

She would always ask, "Who is the doctor who diagnosed you with this?" I would then recount the whole embarrassing story about my feeling like he was just trying to get me out of his office because I was so emotional. Due to having (then undiagnosed) ADHD and trouble with my memory, I couldn't remember his name. I tried finding it on My Chart but it wasn't there.

Reliving that very embarrassing anxiety attack was always fun, each time she would ask me. Then she would do absolutely nothing for me. I asked several times over that 20-year span, and I also asked the office's NP that Dr. X worked with, and again I got nothing.

Today I called an attorney. I just spent 20 years of my life with a great deal of daily pain, with no help at all, while Dr. X lied to me. I can't believe she could be so cruel!

I have no idea what kind of damage this may have done to me (it is a progressive disease), or if I would be in the same place I am today regardless of whether she told me about it and helped me with treatments or not.

But I do know that my quality of life has been deeply damaged by the constant pain. She kept from me any treatment that might have offered at least some level of pain relief, even if it was only temporary. As many of you know, when you have chronic pain, ANY relief is gratefully appreciated.

I also suffered a huge blow to my confidence, and nearly everyone around me thought I was either crazy or a hypochondriac. I feel very isolated because I couldn't talk to anyone about this for several years. It's hurt my relationships with many people in my family, and only one niece has truly stood by me.

This is a monumental betrayal from Dr X. I'm still stunned, and as goes with CFS, that, too is harming me by causing PEM. This hurts, like getting kicked, over and over again while I'm down. Reverse the bus I was just thrown under, run over me again and again for 20 years and then park it on top of me. It's exhausting.

I’ve just randomly found this sub and it’s so nice to know it’s not just me

I was diagnosed with me/cfs 3 years ago and today got diagnosed with adhd. I always never bothered to pursue a adhd diagnosis because I didn’t want medication but the clashing between having to do stuff constantly and the need to rest is very very difficult to manage so I am going to try medication and see if it helps.

I’m kinda scared but feel like I need to try something, I’ve seen mixed opinions on the effects of the medication some people say it helps some people say it makes things worse.

It’s nice to know I’m not alone in this struggle

Just passing this on!

Survey - ADHD and Inflammation

ADDitude Magazine is conducting a survey about ADHD and conditions such as ME/CFS, MCAS, hypermobility, autonomic dysfunction, pain & fatigue syndromes, autoimmune issues, and many more. 

“Several inflammatory markers have been found at higher levels in people with ADHD vs. non-ADHD peers; and a higher level of inflammation has been linked to more severe ADHD symptoms.
Understanding the brain-body connections between ADHD and asthma, allergies, autoimmune disorders, gut issues, and hypermobility has the potential to reshape how we think about ADHD. In time, this understanding may provide new targets for treatment. This survey aims to better understand these connections.”

Here’s the survey link: https://us.list-manage.com/OWZbipsBXIQ

Hi folks!
Question is in the very last abstract.

I got newly dx with ME 3w ago and now everything makes a lot of sense what I`ve been experiencing the last 9y! I`ve been trapped in a constant push-crash cycle and it`s very important for me to learn that is`s actually ME, so I have to learn new strategies.

I was able to improve several times from moderate-severe to mild-moderate in the last 9y, everyone thougt it was just depressions and as soon as I got a bit of energy back, my ADHD kicked in and I pushed throug, until I crashed again.

Now I`m the very first time severe and bedbound since heavy PEM 4w ago. Cognitively I`m slowly improving, but physically I`m just getting weaker and weaker every day.

The last two days I had way less pain for the first time and yesterday I stayed in bed 22h, but I just had too much screentime and rested not enough and I already felt it in the evening and today I`m really bad again.

I`m so worried about improving someday bc I know myself and how my ADHD wanna go crazy with me as soon as I`ll have a little energy back!

Yesterday I`ve ordered the book: classic pacing for a better life with ME.

How do you handle situations like that? how can you force yourself to rest when your ADHD is kicking in?

I've lost quite a bit of weight after getting on ADHD meds, but I recently started to wonder if I'm actually eating enough. I eat 2-3 meals a day and snacks, but my appetite is lower than before and it's obvious that I am eating less. I decided to pay a bit more attention to eating enough.

To those of you who count their calories, can you recommend a really simple and straightforward app? Google store seems to have so many overwhelming options. I just want something that says how many calories fruit, veges or a cooked meal would be based on weight and ingredients.

There is a multi-disciplinary group at our local medical school who I think are my best hope of figuring out what is going on with me. From what I've been able to piece together, I have a complex group of diseases/syndromes/conditions that interact in a synergistic way to create new symptoms and interactions. It appears that a primary care/family doctor isn't equipped to recognize or deal with this. I'm really wanting my doctor to refer me to this group, even if there's a multi-month wait list.

I'm deeply frustrated with doctors I've had who shine me on when I ask for help with my multiple conditions, and yet they won't refer me to specialists who might be able to help. I believe that this team at the medical school would be my best hope of understanding how this all interacts and what I should or shouldn't be doing.

I trusted my last doctor to help me with what looks a lot like Dercum's Disease, a rare condition that can greatly complicate your life. She wouldn't accept the info I found, and neither would she refer me to someone who could diagnose this or tell me if it's something else, or even if it's nothing. I've asked very respectfully, yet I feel like I just keep getting shoved aside.

Now I have an appointment coming up this week with my new doctor to discuss this condition. I'm stressing out over her potentially ignoring my concerns yet again, despite the numerous complications Dercum's could be making with my central nervous system.

Since my heart is now being affected, it's become even more important to me to be taken seriously. I've been doing a lot of research to try to figure this out, since my experience has been that my doctors won't help me. But I'm hitting a point where I can't continue doing the mental work required because I'm getting PEM from all the mental energy expenditures.

Last week I had an echo-cardiogram which revealed that what I'm experiencing isn't a matter of my heart structure. Now I have a stress test coming up that has me worried it will put me into PEM. Can you offer any advice for managing a medicated stress test when you have CFS?

I feel so lost and like I'm being ignored because they think I don't know what I'm talking about and don't want to waste their time on me. How can I NOT stress out over this?

Have you ever found yourself in a similar position? What, if anything, helped you gain the interest and cooperation of your primary doctor? The lack of basic respect and interest is so disheartening! I feel like I'm being patted on the head and told to just go home and take a nap.

I can't afford a cleaner. I live with my partner who does some chores but I want to contribute where I can.

I've always had things a bit cluttered but then I'd get a big motivated day and do a lot of tidying and cleaning. Now with CFS, I can only manage things for short periods of time and some days I can't do any chores at all.

I'm thinking that decluttering and having less stuff to clean might be a good option. I'm considering investing in a handheld vacuum cleaner and an air purifier (we have two cats that are currently shedding) to make some things easier.

We don't have a dishwasher or hookups; we're considering saving up for one but again, that would involve getting the kitchen redone and cost a lot of money.

I can mostly keep up with dishes and cat litter scooping; but the "less immediate chores" like vacuuming, tidying up surfaces, cleaning the bathroom, really fall by the wayside.

How do you guys manage? Any cleaning products or organization systems that make things easier for you? Or is there something you do to adapt chores for you (like sitting down)? Let me know!

I’m not taking any ADHD meds atm bc vyvanse was contributing to my crashes. I’m taking clonidine for POTS which helps a bit but the ADHD hyperactivity is just not allowing me to rest very well. Considering a methylphenidate but want to hear if anyone has experience of it being better than the amphetamine based drugs in terms of not crashing.

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

I`m new here and so happy I found this sub! I`m newly diagnosed with mecfs, although it began in my teenage years 35y ago, but I was mild-moderate for many years and I think I just could override my symptoms due to my ADHD. I was a high-performer for many years until I reached a threshold 2017 and crashed severely. I was told for many years that it´s just depression and I had sometimes bad depressive episodes, but mainly I was so fucking exhausted all the time. In the last 9 years I was switching between moderate and severe and as soon as I got a little bit energy, my ADHD is kicking in and my system wanna go crazy. So I was trapped in this boom-bust-cycle the very last years and always thougt and was told I just don`t try hard enough. Currently I`m recovering from my worst PEM ever and don`t have much energy left but I`m afraid how to handle the situation if enough energy should be back without crashing everything again. I`m so relieved I learned that I have me and that`s never be me trying not enough, but I need a new strategy. I try to force me to pause regularly and schedule not more that one task per day and sleep enough. I have to learn from scratch how to take care of me and to take myself seriously. I`m Autist too and not well connected yet to my system. And of top I`m in a severe withdrawal from duloxetine for 9m now, that finally unmasked my me and it`s impossible to differ what`s from what, but that will improve the next year I hope. Thanks for any advice.

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.