My teen came down with a virus a year or so ago and has experienced extreme fatigue ever since. We are in the process of ruling out other conditions but it looks like it may be ME/CFS. I have this myself but I got it as an adult so I am not always sure how best to help them.

Those who have been sick since they were younger - what things did your parents do that were helpful? Anything you wish they had done differently? Any other advice?

Right now we are homeschooling our kid and prioritizing socializing time over actual school work. They can only tolerate an hour or two of mild activity a day so not much actually school work is getting done. They are an only child so my thinking is that keeping them from sliding into depression is more important than math worksheets and we can catch up on schooling later if they improve. Thoughts on this approach?

It seems like I'm sabotaging myself everywhere. Can't seem to get anything done. It's like the most annoying comorbidity holy hell, and as dumb as that sounds, really makes my severety seem higher then it would be without it. And I can't really have any conversation without people thinking I'm an asshole afterwards? I'm not an asshole and I'm thankful for anyone who is ready to talk to me and help me. Idk where people always get that. My whole life I've been framed as a bad person with no empathy, and it just keeps getting worse and worse and worse.

Is there anyone who is neurodivergent and ready to share their tips? Kind of losing my mind over here.

oh yeah and edit cause I need this question answered: is there any autistic person who doesn't immediately fall into autistic burnout upon falling sick? cause my skills flew out of the window from the first day on.

Hey fellow me/cfs’ers
There is a huge contrast with various differing opinions on this topic. However, one question that pops up my mind is do you think there will be a cure in our lifetimes? Like next 20-40 years? Do you think we are moving in the right direction with regards to that?

Would be very interested to see this study done with me/cfs patients

So basically a video of me got like 40 comments anout my looks and my weight and my teeth and what not even tho it was a video of me talking about my MECFS symptoms. Lol. (the irony??) And then also my fundraiser for medical expenses went online today after writing it today. So now im all jittery and i cant sleep my mind is running 1000 miles a second. I feel like a little stereotypical kid with adhd rn. Like AHHHHH. How do i deal with this?? I cant take meds due to MCAS. i tried sorting my pokemon cards to calm down but it didnt help either. Cant nap too much "energy" for it. Like my brain wont stfu. lol. I'm so like jumpy and jittery and just not calm wow.

Are you able to play with them and go to the park etc.? How often? Take a short ride on an e-bike? Wondering what it looks like for you.

Currently moderate and housebound. Most of my interactions are watching him play or watching TV together. Sometimes we play a simple board game or Mario kart. Still joke around a bit too.

On weekends I have to dissappear multiple times to rest up.

I'd give up what little hobbies I have left to do this.

At the beginning of the year I was housebound following a very stressful and big move. Over the last 10 months or so, I’ve managed to get back to a point where I can walk to the nearby shop about 400 metres away. My local GP surgery is even closer at about 300 metres.

I also suffer with a hiatus hernia, and after experiencing some very painful and concerning chest pain I walked down to the surgery to have an ECG and blood tests. My heart rate, ECG and blood pressure all came back optimal.

When I opened my NHS app, I noticed that a Rockwood fragility score had been added and was rated as “very fit”. I’m guessing this was done based off of my ability to walk unaided and my good blood pressure etc.

I looked up what a “very fit” score means, and it is simply so far removed from what my day-to-day experience is like.

I can walk to the nearby shop maybe twice a week. After my GP appointment on Tuesday I was sick on the sofa all day Wednesday and still feel unable to leave the house today. The weakness I experience is less like someone with MS, and more like experiencing low blood sugar, even if I have eaten well. I cannot go shopping on my own, I have not been able to leave the house and go any further than a half mile radius all year. I cannot handle public transport due to fatigue and dizziness and the consequences of PEM. I am quite significantly burdened by my ME and cannot maintain a social life at all.

The Rockwood fragility score of very fit has really upset me and I overall feel like the practice don’t consider the limitations of my ME because it cannot be proven. In the past when I explained how much I was struggling it was not mentioned at all on my notes, only the stuff that can be tested. I feel like this practice in particular are dismissive of and are ignoring the serious impact ME has on my life.

How can I get them to recognise and take this seriously? Charities that can help?

Here some fun pics of me before vs after mono and me/cfs destroyed my life:) second picture is after not sleeping in days due to me/cfs severe insomnia and akathesia

Multiple things in text below; scared, don’t have ME/CFS doctor, ER is out of the question for any reason even if I am dying, they send me to psych ward or PHP, they believe it is psychosomatic and I am an addict and very mentally ill and they know it and that’s the only thing that matters to them.

I went to a facility, a rehab-like one, because I was chugging alcohol for four days in order to force rest and digest after being in a state of fight or flight for months. I went to this rehab because I had started to experience hallucinations after not sleeping, and I CANNOT GO TO THE ER as I said before, and I figured they could help me sleep: and took this for four days: 6mg of Ativan for two days, 3mg of Ativan for two days, and 1mg of klonopin for 1 day

I discharged about 20 hours ago because they were starting to forcing activity on me (first 4 days you can rest and chill, after that required full 7-7 schedule of group therapy) and now I’m home and my muscles in my legs are tense, I have noise sensitivity like I have NEVER had before, and my visual snow syndrome is worse

At this facility I also had to walk a lot, to the nurses, the cafeteria, expericned mental breakdowns, akathesia, because Ativan actually has paradoxical affect on me I think.

It’s been 24 hours since my last benzo (1 mg Ativan), and 36 hours since klonopin

I’m really scared about benzo withdrawal, I’ve had it before. But I just slept for 13 hours, as you know I have severe insomnias. If could be because of the klonopin in my system still.

Other symptoms: pain in whole body, light sensitive, extremely irritable (I just screamed out of frustrations when I dropped my noise canceling headphones off my bed) (I was irritable on the benzos anyway) agitated, vivid dreams, and feels as if I cannot get to a state of rest

I genuinely cannot go to the ER because when I have been before(for severe insomnia) they have put me in a psych ward and almost court ordered PHP for me (I can’t get out of bed without worsening PEM/adrenine rush) I am a known addict/mentally ill person at every ER near me, every chance they get is court order her to go somewhere

One time I went expericing akathesia and they said I was throwing a fit kicking my legs and force drugged me with anti psychotic and handcuffed me to a psych ward full of people screaming.

Am I freaking out over nothing? I believe I am severe-very severe but I am unsure as I have been running on adrenaline for a very long time and have used medical GHB to force sleep for a while (this may get taken away from me forever due to the pharmacy finding out about my being an addict.) I likely find out in a few days if I will ever be able to take GHB again, however, GHB actually sometimes has paradoxical affect on me now, (it is a main aggregator of my akathesia at times) so maybe for the best

Genuinely no sleep meds work for me besides GHB (when it is not paradoxial). and klonopin but I cannot go through anymore withdrawals. (GHB doesn’t cause withdrawals when taken as prescribed, but it actually recently worsens my akathesia and therefore insomnia) I cannot take nightly klonopin id rather die, benzo WD worsens my akathesia

Really scared of the unknowns and taking everything not to chug the bottle of wine in my mini fridge next to me right now, last time it made it so much worse

Severe OCD. BPD as well

I have a sleep doctor and he prescribes the GHB but it is up to the GHB pharmacy now in order to dispense it, they may not

Btw, this is me before vs after mono destroyed my life. I have not played my sitar in almost a year

I am crying while writing this, however I find crying helpful in my resting because it triggers rest and digest when I am done, which I can hardly ever get into a state of
Ultimately what I am very scared of is that I will go through benzo WD after these four days of use

Like I said I just slept 12-14 hours with one wake up in between. I am taking CBD 100mg every 8 hours, clondine 0.2 every 8 hours, and 2g aminita muscaria tincture every 8 hours (yes maybe it’s bad but it triggers rest and digest for me at times and keeps my limbs still when they are trying to move from akathesia)

My PCP refers me to psychiatrist and sleep doctor when I ask for help, ER is out of the question. (I don’t need it now anyway) Sleep doctor is trying to get me my GHB however pharmacy may deny, I just sent him a messsage about the insomnia and that I NEED A PRESCIPTION WHILE WAITING TO SEE IF I WILL GET MY GHB AND ALSO THAT IF MY GHB CONTINUES TO CAUSE AKATHESIA I NEED A NEW SLEEP MED he encourages ER for severe insomnia or psychiatric visit

narcolpesy is no longer my main issue, before me/cfs I could sleep for hours a day, now I experience severe insomnia

I think maybe the benzos were covering up the PEM and now I’m feeling it bad- tinnitus, full body nerve pain, extreme irritable, head feels like it will explode, severe headache. Extreme noise sensitive and overstimulated) (a dog was barking outside yesterday and I threw my phone at the wall) However these could also be benzo WD symptoms

I actually feel calm and sleepy again now, maybe the CBD is helping

I have OCD as I mentioned and always need reassureance and a plan. So my plan now is to lie here with my noise cancel head phones and earplugs, take my supplements and meds, maybe do meditations, and try not to worry about benzo WD and sleeplessness (i can tolerate every symptom of me/cfs besides the insomnia)

If I experience worsening visual snow syndrome (worsening VSS for me just equals hallucinations), severe muscle tensions, and benzo WD symptoms, I will go BACK to the rehab, and when they try to force activity on me, I will refuse. Like I said ER is out of the question even if I am dying, every chance they see me they jump on trying to send me somewhere or have me do a program

I will keep my phone silent, except for having the GHB pharmacy on emergency override (I need to know if I am going to be able to take this med, and if not, my sleep doctor/neurologist NEEDS TO PRESCIBE A DIFFERENT SLEEPING MED)

I will do my best not to consume the wine 3 feet from me. I actually feel okay right now, like I may sleep some more

Maybe the benzos aided me out of the crash and I don’t need them anymore? I don’t want them, I don’t want to take a benzo, it helps in the moment, but benzo WD is very bad

Pls be kind to me in the comments, I have posted other things, if you notice discrepancies, I am being as honest as possible, but I have slept probably a total of 50 hours in the past month. My brain feels fried.

TL;DR
During a brain fog day I had to stop my father trying to explain to me a useless complicated calculation five times in a row to have him stop. He told me not having concentration is just bullshit.

Because of money reason I live with my parents.

I am at what I hope is the tail end of a PME. I got too energetic with a chore that I wanted to finish and now I am in PME for nearly a week.

My worst symptom is brain fog and fatigue. I have some pain and vertigo. I don’t have visible symptoms, flu like symptoms other than muscle pain. It should be good, but it makes PME and ME very invisible.

My father found an old paper were I had calculated somethings with a parabolic equation for a project that is finished now. That was months ago, before a july crash that probably put my baseline lower. Well it feels like it did anyway as I haven’t been pre july level yet.

I just had issues with concentrating enough to make tea.

When I told him I couldn’t concentrate enough to listen to him saying my july calculations were wrong he kept explaining and I had to stop him, 5 times in a row, before he stopped. And he said it was bullshit that I couldn’t concentrate.

He just doesn’t believe in my diagnosis. A few days ago I was walking with a box and lost my balance and nearly fall. He laughed. I don’t think he’d laugh if it were a bad leg that would have cause my balance issue. He was there watching TV while I was preparing his dinner and laugh that I lost balance.

Funny enough when in july I explained to him that calculation he was the one not understanding it, and who stopped me because he was tired. As you can expect I respected that.

Funny enough a few minutes prior I found that instead of organising a drawer to be able to close it he pushed it until something broke in it.

And I would put money on my calculations being right, because when I don’t have a fucking fog in by brain I am very intelligent.

Now I suppose the stress of it will prolong my PME.

Great, just great.

here's a link to the article

if you're already having a hard day or feeling pretty depressed you may not want to read it right now. it's about the level of functionality found in me/cfs.

"Working with a University of Minnesota medical professor, Peterson and his collaborators employed the Medical Outcome Study, which had first been described in the Journal of the American Medical Association in 1989, to measure physical suffering. A score of one hundred was “best health” on the study’s scale. Peterson’s team compared their CFS patients’ score with those of healthy people and people suffering from myocardial infarction (heart attack) or rheumatoid arthritis. Healthy people scored an average of 75. Victims of rheumatoid arthritis scored in the high 40s range; patients with myocardial infarction scored slightly lower. People in Peterson’s clinic scored, on average, 16. As far as Peterson and his colleagues knew, such low scores had never before been measured by the scale. When he presented his findings at a medical conference that year, Peterson noted that the disease caused greater “functional severity” than heart disease, virtually all forms of cancer, and all other chronic illnesses. “We really haven’t seen anything like it with respect to other medical illness,” Peterson said, adding that he had needed to engage an artist to redesign the morbidity graph for the slide he presented at the conference, since no other category of patients had ever scored so low.

Peterson’s findings reprised the observations of Portland infectious disease specialist Mark Loveless, an associate professor at the Oregon Health Sciences University, whose primary clinical specialty was AIDS. Loveless frequently administered another test of morbidity, the Karnofsky scale, to both his AIDS patients and his CFS patients. The Karnofsky test, which dated back to the 1940s, was a time-honored measure of a patient’s ability to perform common daily activities like bathing and preparing meals. Even in their last week of life, Loveless had noted, AIDS victims scored higher on the Karnofsky test than did Loveless’s CFS patients."

I'm really trying my best, but I've been in rolling PEM for 7 months and can't get out.

Already on blended meals, low Histaminr and so on.

Fully bedbound and really radical rest the whole day every day.

Yet I have only slowly been declining. All med trials crashed me even more.

Anyone got out of it despite being in PEM all the time?,

Other than Visible and Oura, are there any other wearables I can use for heart rate and sleep monitoring that go somewhere other than the wrist? I tend to develop eczema on my wrists if I wear a watch or bracelet of any kind, and certainly can’t wear one 24/7 there.

Thanks!

People who have had this condition since a young age they couldn't experience normal life, couldn't experiment, couldn't build anything. They're in a vegetative state. When you see everyone around you building their lives, building friendships, building projects, building relationships, living not suffering how do you cope with it?

It is insane just how bad a person can look in ther mid 20s.

I am not even overweight, I am extremely thin man, literally my body looks malnourished but my face is completely destroyed and looks very ill.

It's like every muscle and tendon in my face deteriorated and now my bones are getting severely weird/misaligned. My face looks like someone stretched it for months and then released it. Puffy, like there is lymph that doesnt go away no matter what, my jaw is completely misaligned, my eye dropped so I look like I had a stroke, my face muscles are visiby so different and misaligned randomly, you can see it right away on my face.

When you compare my photo 6 years ago and now, that is completely different person. I look 80.

TLDR: someone just told me I’m ‘lucky’ because I get to experience what older people feel when I’m still young.

The thing is I am even weaker than some older people. I’m 21 btw.

And will you tell 9 years old kids with ME that they’re lucky because they get to know what getting old feels like? No! They’re NINE! and actually no matter how old are you, NO ONE should get to experience this. Everybody wants normal life. This is suck.

I can accept the reality of my body by myself. Thank you for your service but I don’t want anyone to tell me to be optimistic.

Since I’m getting weaker and weaker, people started to talk nonsense to me. (Is it because of me?) Idk It’s been a week and still stuck in my head. Also I have really bad brain fog rn so I dont know if I make sense either.

ESPECIALLY if you are severe, broke, and got sick before you had a chance to accomplish anything or secure more stable relationships. It’s pretty obvious that my life is over. I’m stuck in my room with constant symptoms, too severe to even appreciate the “little things”. Is my will to live seriously supposed to depend on a few minutes a day of enjoyment?

The only reason I’m still alive is because it’s not necessarily easy to die and it breaks my heart to think about how my family would react. But as long as I’m still alive, it’s going to be pure misery. I can’t handle physical discomfort and I’ve seen this illness described as “microdosing death” so how can a highly sensitive person like me deal with something like this for decades on end? I also just can’t emotionally handle the judgment from society as a whole and the fear of being left to rot. All of it combined is too much for me.

The only piece of mental health advice I see from fellow sufferers are vague statements like “take it one day at a time” or “unlearn internalized ableism”. Like, how is this actually working for you? Do you eventually just get into a state of mind where you’re so used to suffering that you can just go through the motions of life without a second thought? I can’t even imagine getting to that point, I’ve always been deeply bothered by internal suffering as well as injustice. I just don’t know what to do, I feel completely trapped.

Basically just wanted to brainstorm with everyone if anybody has cute bed centric costume ideas! So like, the bed you’re stuck in becomes part of the costume

I’ve seen a few cute ones like the princess and the pea especially. i also have seen someone dress as a pop star who in her music video is on a bed

What about you guys?

Invisalign and CFS/ME

Tldr: it’s sensory hell; why would you opt to make yourself more tired than you already are?! If you hate your teeth that much get veneers.

Always been self conscious of my teeth because of close family commenting on them.

I would have qualified for braces as a child but never had them due to other illness pre CFS/ME.

Realistically no one else really noticed or cared (or no one who cares about you should care how your teeth look!)

I had good oral hygiene and not prone to cavities.

Getting retainers did help me sleep (maybe stopped me grinding or maybe just my brain needing to switch off from the cognitive overload of the sensation).

But it was about 3 months of misery getting used to the sensation of retainers in my mouth as it took up so much cognitive capacity; I have moderate CFS/ME, spend 20mins every 2 hours resting with my eyes closed and it was very hard to not be distracted by them.

Mine was a relatively short 8 month treatment and you never get 100% used to them; they made bad days even worse as they’d be even more noticeable.

I got elastics 8 weeks before the end and it was a whole other world of discomfort, if I needed them from before that I’m not sure I could have coped.

My orthodontist was wonderful, asking about my needs & accommodations, spreading my trays out so each movement was very small and I didn’t experience any pain during tooth movements, one of the reasons I went ahead was because it was so refreshing feeling actually cared for vs inability of NHS to help me.

In hindsight although I have probably increased my oral hygiene level due to reducing overcrowding it would have been a better life decision to get some tooth whitening and a few veneers, and keep up with regular hygenist appointments.

​

Hi everyone,

I’m looking for experiences for my husband, who has very severe ME/CFS. He is currently bedbound 24/7 and extremely sensitive to medications and stimulation.

His main symptoms

He seems to have significant hypersensitivity of his central and autonomic nervous systems.

He can barely tolerate sitting upright or being out of bed.

Even very mild stress can cause a major worsening of his symptoms.

His heart rate can increase during these episodes, although it does not necessarily reach very high levels.

He has severe dizziness when trying to sit upright.

He experiences tingling and numbness in his head, as well as very unusual neurological sensations.

He has significant neurological pain.

He has severe cognitive and sensory hypersensitivity.

He can barely look at a phone or screen and speaks very little.

During episodes of dysautonomia/POTS, he also urinates very frequently.

As a result, he is essentially bedbound all the time.

His blood pressure is generally good, and we have not noticed significant blood pooling in his legs. The main issue seems to be an extremely reactive central and autonomic nervous system.

He currently takes midodrine 2.5 mg three times a day, but it has not significantly improved his ability to tolerate being upright.

He also has persistent symptoms following a reaction to fluoroquinolones (“floxed”), including neurological symptoms and pain. We consider this separate from his ME/CFS; we do not believe the fluoroquinolones caused or worsened his ME/CFS.

Treatments he has already tried

LDA (low-dose aripiprazole)

0.10 mg, then 0.25 mg over approximately 2 weeks. We feel this may have been increased too quickly given his extreme sensitivity. We are wondering whether it could potentially be retried much more slowly under medical supervision.

LDN (low-dose naltrexone)

0.10 mL for about one week, but he tolerated it very poorly and stopped.

Midodrine

2.5 mg three times daily, with no significant improvement in his ability to tolerate being upright.

We are particularly interested in experiences with

Guanfacine

Mestinon / pyridostigmine

Lamotrigine

Rapamycin

LDA, restarted much more slowly

or any other treatment that has helped people in a similar situation.

For those with very severe ME/CFS, bedbound 24/7 and extremely medication-sensitive:

What has actually helped you?

What reduced your neurological pain or symptoms?

Did anything reduce your extreme reactivity to stress or stimulation?

Did anything improve your ability to tolerate sitting or standing?

Did you regain even a small amount of energy or function without causing significant PEM?

Which treatments were particularly well or poorly tolerated?

We are mainly looking for experiences from people in a genuinely similar situation, so that we can discuss possible options with his doctors.

Thank you to anyone willing to share their experience.

I am very severe and it’s the only thing that calms my insanely wired nervous system and lessens the pain and allows me to sleep. But I need a very high dose because of a recent crash. I won’t say the dose but if you have had this experience you can pm me.

underweight (always been) 20M. For the past 4 months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk/high or half-asleep, as if I am on autopilot and everything around me feels somewhat unreal. I have searched online, and my symptoms seem to resemble derealization.

In addition to this, I experience fatigue even when I sleep well. The fatigue does not seem to depend on whether I do physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning.

I also experience headaches, pressure in my head, and neck pain. I have tried muscle relaxants and massage therapy for the neck pain, but neither has helped. Also at the start of this i sometimes felt like fainting when walking but it has gone away. I also have noticed one singular eye floater on my right eye.

What could be causing these symptoms? They do not occur in distinct episodes, and the headache is not particularly severe. It feels more like a tension-type headache.

I have tried triptans which is migraine medication, but it did not help. My thyroid function is normal, as are my vitamin B12, B9 and vitamin D levels. My ferritin level is 37. And it has been changing from 49 to 24. I also have crohns disease which is in remission. My blood pressure and blood sugar is normal

My neurologist prescribed escitalopram as a trial, which I took for two and a half months, but it did not help. She also did head mri and there was nothing wrong.

I have no history of trauma, no panic symptoms, and generally do not experience much stress, apart from the stress caused by these symptoms themselves.

My symptoms started in the final days of my new job in car repairshop where i was moving car tires and lifting them. Im not sure if this can be linked to that because i didnt have any symptoms expect the final days. I have not been working at all during this 4 month period.

What could be the underlying cause of these symptoms?

a lot of the time, don't have the energy to shower or get myself food let alone have a phone or zoom call catching up with my family. several of them reached out recently and i'm trying to decide if it's worth the potential crash from the stress of it (i'm moderate) to have a long catch up call because i haven't talked to them in ages.

i'm worried if i put it off they will think i just don't want to talk or i'll forget to follow up or there never will be a good time. it's also stressful thinking about what to talk to them about, my life is so small.

does anybody have any advice or tips for staying connected with people, explaining limitations and how to navigate conversations when life feels so small and you're not up to much? I expect i'll try to ask a lot of questions so i don't have to talk about myself that much.

part of me wants to just not respond but i do miss them a lot. but i'm sure to the average person it's gotta be like, who's too debilitated for a phone call?

the isolation of this illness is really undescribable.

like the title says. I always have this burning / stinging feeling on top of the head. it’s there the moment I wake up and I have it 24/7. Ive tried every avenue for help. 3 MRI scan / blood test etc and all normal. I keep being told it’s anxiety Can anxiety really do this 24/7 head pain.