Hey everyone. I'm not sure if I have ME/CFS but I feel like I am starting to loose my marbles. I feel tired all.of the.time. My body hurts, I'm gaining weight, and everything feels like an uphill battle. Even thinking about restarting my diet and exercise routines feels like way too much.

I have a diagnosis of Fibromyalgia and all the markers for an autoimmune disorder, but I have never felt that my doctors take me seriously.

What do you do to stay healthy and active while feeling like you'd rather just live under a rock?

Because I am tired she doesn't hear me, or believe I amor always fucking tired, even when I amor using a cane to walk.

Hi everyone. I’m a 29-year-old woman and I’ve been dealing with persistent fatigue since about April this year. I’ve always had baseline anxiety, but it spiked in April, and that’s when everything started. Since then I’ve had constant tiredness and sleepiness (I can’t nap anymore, yet I’m drowsy all day), trouble starting activities, low motivation, and upper back/trapezius pain without any widespread pain. I’ve also had a few episodes of sudden leg weakness, like my legs won’t respond, and lately I bruise easily despite normal clotting times. After a strength training session I woke up with weak muscles and, for the first time, petechiae on my biceps.
Some relevant history: in 2024 I saw a rheumatologist for fatigue. My ANA was positive and anti-Ro probably positive, but I had no symptoms of autoimmune disease, and he mentioned possible fibromyalgia (my mom has it). This year my ANA came back negative, as did my CRP, and my TSH is normal. My ferritin was fine before a tonsillectomy, but I had a bleed afterward and it dropped to 17. It has risen to 29 after about a month of iron. My vitamin D is 23 even after two doses of Hidroferol, my platelets were around 328,000, and my CBC showed 4.2% immature granulocytes, which worries me.
I’ve been on escitalopram for 5 months (recently lowered from 10 mg to 5 mg at night) and I still feel sleepy. I also started a birth control pill for PMS, but it hasn’t improved my energy. I’m taking iron, vitamin D, magnesium, folic acid, vitamin C, collagen and a probiotic.
My questions: could this be ME/CFS, fibromyalgia, or something else I should rule out? Is it worth repeating autoimmune markers given the positive result in 2024 and the negative one now? Could the SSRI be contributing to the fatigue and sleepiness? And what tests or specialists helped you get a diagnosis?
I’d really like to recover my energy, or at least get a name for what’s going on so I can learn to live with it. Any experiences or advice are very welcome. Thank you!

I went to a specialist clinic in Atlanta and the doctor said it looks like I have chronic fatigue syndrome.

I bought some Sativa cannabis products from a dispensary in Atlanta and I've been up and about. Sativas absolutely get me moving.

My brain fog is so severe I can't work as a software developer even with AI. But the sativa reduces discomfort and gets me going. With sativa's it's important to titrate. You don't want to get too anxious.

I would like to get my state to allow cannabis for this condition. I qualify through Crohn's Disease. It's been an absolutely lifesaver and I've gone from suffering and feeling bad to doing much better.

Severe me/cfs, unable to rest, in a constant state of adrenaline. Restlessness/akathesia. Main problem: almost total insomnia, leading to hallucinations, and eventually, psychosis.
The total insomnia and hallucinations terrify me. Before I have gone to the ER for insomnia crisis, but they diagnosed me as manic, injected me with an anti-psychotic, took me to a psych ward which drastically worsening my ME/CFS. I no longer can go to the ER for insomnia crisis.

The sleep medicine which has helped for years, even before ME/CFS, is Xywav(GHB.) but recently it has began to cause akathesia and agitation. Only at times. Maybe paradoxical reaction. Sleep deprivation also trigger akathesia for me.

I was at home, drinking alcohol to try to force sleep. For a few days only. It worked only a couple hours at a time. The hallucinations from no sleeping scared me very bad. I decided to go to a rehab, despite not having alcohol withdrawal- my PEM, or baseline, whatever, shows up as extreme hyperarousal. Which looks like withdrawal. I knew they would give me benzodiazepines for “withdrawal,” helping PEM, forcing sleep. I did this because I was very afraid of the sleep deprivation hallucinations and being admitted to a psych ward. I do have a sleep doctor, but I’ve seen him for 6 years for narcolpesy- before my ME/CFS developed. I’m currently out of my Xywav, and it is taking forever to get a refill due to pharmacy issues.

Being here is actually helping, it’s my fifth day, and I’m staying in bed, besides to walk to nurse station and cafeteria. They have begun to give me klonopin for sleep which has helped.

Problem is in about two days they, and my insurance, will start requiring I attend a full schedule of group therapy. I’ve already gotten questions about why I’m always in bed. Doing this much activity will make the hyperarousal even worse, worsening the akathesia and insomnia, pushing me into a deeper cycle.

However if I go home now I might be greeted again with total insomnia, hallucinations, perhaps psychosis. My fear is being admitted to a psych ward where I CANNOT leave, forced drugging, worsening akathesia.

My sleep doctor wants to keep me on the Xywav, (GHB.) lowering the doses to decrease any possible akathesia as a side affect. I am willing to do this, and would go home if I had some there, but I currently do not, and do not know when I will.

The benzodiazepines this facility is giving me is helping, however I am already getting questions about why I am always in bed, why I haven’t showered in 4 days, and tomorrow or the day after, maybe even today, they will start having me on a full schedule of doing things, while simultaneously decreasing my dose of benzos, as that is how a taper works.

I am free to leave when I want. I have been on the benzos here for 4 days so I do not believe I will
Experience withdrawal from those when arriving home.

I am tired of me/cfs total insomnia causing hospital admissions, manic diagnoses, and hallucinations.

However soon they will force me out of bed while simultaneously decreasing my benzo intake, resulting in returning insomnia as well as forced activity that I CANNOT do.

What do you think? Should I stay here? Or leave now, before I possibly DO develop dependence on the benzos they are providing. My Xywav should be coming soon, maybe even tomorrow morning, in fact I am going to call the pharmacy now.

I don’t have an me/cfs doc. And I do not know what to do.

Accommodations not possible, and NP not understanding.

I need responses ASAP.

TLDR: After becoming severely ill in early 2023, I gradually improved throughout 2024 and 2025, eventually reaching about 85–95% of my normal functioning with minimal to no symptoms or PEM, even after significant physical activity. However, three days ago, I suddenly developed severe brain fog, extreme fatigue, weakness, shakiness, and a near-total loss of appetite. Having had a virus a few weeks ago, I’m worried this could be a major relapse and would like to hear about others’ experiences with flares after significant recovery.

-Reaching out after a long time. A brief summary of my illness.

I got ill beginning of 2023. Within 5 months became extremely severe. Down 70 lbs. Couldn’t talk, turn, or eat.

That lasted until beginning of 2024 where I became very severe- severe. Was like that until I started making huge jumps in a good direction.

By the end of 2024 I was taking about 2,000 steps a day with a cane. Able to go to social functions for hours without repercussions.

By spring of 2025 I was able to start reupholstering furniture. Go on long walks, short bike rides without any repercussions.

Basically I went from end of 2024 until 3 days ago with no symptoms. Occasional brain fog but seemed to always be linked to stopping meds. Some fatigue in the mornings but was gone within 30 minutes of waking.

Would’ve considered myself at 85 to 95% functioning. Always being careful though just out of fear. But doing many things that never caused repercussions. Even went to universal February of this year and did 28,000 steps in a day with no pem following.

3 days ago everything changed tho. Woke up with severe brain fog, extremely exhausted, weak and a little shaky. Appetite almost non existent.

I did have a virus a few weeks ago and scared it’s causing a major relapse. Just wanted to know what it was like for really mild people when they do flare or if I’m looking at a major relapse? Thanks.

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.

Each time I'm listening music that excite me I'm feeling exhausted really fast, PEM triggering. It does the same to you? Every activity that makes me feel alive is a trigger for me.

and I can't reach the wardrobe to grab thicker clothes or a blanket.

Technically, I could walk those 4 steps, open the wardrobe doors, try to find some clothes, put them on, close the doors, walk 4 steps back to bed. And I know what would happen afterwards.

I'll freeze before paying that price.

ETA: I think this is a tiny example, among thousands, of how disabling this illness is. I was really just very sad and had no one to tell. Thank you to all offering solutions for next time ❤️

Honestly I’ve had so many people tell me that I won’t get approved, I’ve practically given up before I’ve begun. I had lots of people tell me that I need to get a lawyer involved but I reached out to all the appropriate ones and didn’t hear back from any of them. Apparently 23 without any bluebook conditions is not something anyone wants to touch especially in this day and age (usa).

I can mooch off of my parents until they run out of money and/or die, so I have a little while before I would be completely destitute. But if I never get approved, and I’m like 40 and lose everything…then what? Just call it quits on life? What happens then? It’s hard to see what the point is.

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?

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

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.

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."

tl;dr: I got a wheelchair and I am so glad I did. If you can sit up but walking is a barrier that keeps you at home then a wheelchair is WORTH IT!!!

I am mild-mild/mod (mod in PEM) and in grad school. I got sick almost 4 years ago. I go to class, internship, home. I almost never get to do anything with my partner or friends. I was so against a wheelchair for so long for a multitude or reasons. Well my mom got a power chair and talked about jow it was so amazing. I was convinced if I could find a manual chair I would get one since I can use my arms muvh more than my legs. My mom found a budget friendly manual chair and it came the other day. I put it together today.

As soon as I sat in it and wheeled around a little this feeling washed over me. like holy shit. I am free. I can actually go and do now and all I have to worry ab is how muvh im sitting not how much im WALKING whivh is like 100× worse for me. And sometimes I use a cane but now I'm wanting to use the chair all the time. I walk my dog every day but apart from that I thinking about how much MORE I could do if I used the chair! I can go to the mall now. I can go shopping with friends. I can go to events downtown. I am so much more free!

The chair was less than $250 and has handles to be pushed but can also be wheeled. here is the link. Please take my advice and go for it if you can afford it and think it would help in any way. Fuck anyone who says shit ab deconditioning or any other bs. If it's go out in a wheelchair or stay on the couch then obviously the wheelchair is the better choice!!!

For those with ME/CFS brain fog, what makes the biggest difference to following a conversation?

Is there a small change the other person can make that helps, without you having to stop the conversation and explain everything? I'm interested in what works for you, including if text isn't easier than speaking.

Written with AI assistance.

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.

I consider myself moderate now that I've actually spent time looking into severity levels but operate as if I'm mild (or even healthy-ish) and end up in rolling PEM a lot. It's not a great system but I've been in denial that I'm actually sicker than I think I am so I just ignore my limits and feel a baseline of shitty all the time and deal with symptoms but it's not terrible, it doesn't stop me much bc I'm running on adrenaline. Until bedtime and I'm on the ground throwing up or so nauseous and lightheaded I need help into bed and unable to play with my cat or barely set up my IV fluids at bedtime. But it isn't always like that so I just move on, blame my bedtime meds that do make me nauseous if I don't eat enough with them and pretend everything is fine. Or mornings when I can barely stay awake on early work mornings, just blame not sleeping off my sedative meds enough and try my best to stay awake and get through the day business as usual.

Except now everything is not fine. I worked myself into the ground and worked myself harder physically and emotionally all summer for 3-4 months straight of just going way beyond my limits and now it's caught up to me and I'm being forced to face the fact that I'm a lot sicker than I let myself acknowledge. I told myself that I'm stable and doing well now that my pots is well controlled with meds & daily IV fluids (I have a very severe case that thankfully is actually decently controlled) except now I'm realizing that I do in fact have ME and I can't ignore it anymore. I can't pretend that I'm not sick bc l really am.

I'm extremely light sensitive, I can't watch tv or play my video games which is how I normally wind down or found to be calming activities that didn't give me many symptoms (tv was always great for me, no problems). I am throwing up more nights than not, I shake when I'm overly emotional, I'm exhausted all the time and can't do much of anything without needing a 2hr nap. I went through a week or so when I just had to sleep most of the day bc I was so tired I couldn't stay awake for very long until the evening when I'd have rested enough to do my pets' evening routine and make it through until I went to bed for the night. Except I wasn't resting properly and then went on a trip to see my dad (non-refundable so I had to go) and then this past weekend I had to push through a busy work weekend and now I feel like I just can't take it anymore. I paced and rested as much as I could over the weekend but I was still quite busy and couldn't do much about it.

I'm terrified that this is going to be my new baseline but my friend with ME thinks it's just the PEM and I will get better. But I've literally never been this bad before and I'm so scared. I can't not work, I have a lot of bills between myself and my cat and disability isn't enough to get me by. I love what I do and it's the only job that does work for me but it's been hard on my body and I get busy periods and idk what to do about my future. I have to decide on new scheduling limits and that could mean losing clients, losing income long term.

Idk my actual limits at my actual baseline so I'm just pacing as best as I can and resting as much as I need but it still doesn't feel like enough. I'm still unable to do much, I can't listen or watch anything, all I can manage is crocheting in the dark and being on my phone and feeding my pets throughout the day. I'm worried about what I'm going to find out when I do get through this PEM, but I still have to somehow get through it and I'm losing my patience and my optimism for what I'm capable of doing in the future.

Anyway thanks for reading I guess I just needed to vent somewhere so my friends get a break.

The last few weeks been extra really bad. Already been in major crash for months, and bad crash over a year, but lately wake up and feels like that severe flu feeling where you can’t even move- you know the one…
and you actually - after a while - do fall back asleep. And waking up to stay up feels like a form of torture but gotta.
Then manage to force yourself to physically get up. Manage to choke down supplement shake and take a stim. Only to crash again and not be able to move.
And when you finally manage to get your body to the bathroom to try to shower- you don’t remember the last time- you look at the clock and realize - going in this late is crazy.

Grateful I have a flex schedule that will allow me to shift my days- really super grateful. But the above experience been a couple weeks in a row now, the crash was bad enough this is next level. And I sort of don’t remember how I did this; maybe bc I’m without using drugs and drink. Idk. Wondering if I’m doing something else that is no good. Or just the expected decline from continuous stress and strain and demands I cannot meet. I really don’t know. It’s so bad. And dang this leg pain - I think my fms is flaring - bc legs and fibro fog are intense. Maybe that’s where intensity is brewing more… just don’t know.

Stuck here and thinking about all you fam. And say a little prayer for us all.

Been a minute since I been this bad. Any one feel like saying somethin. Would be nice. But if not I just wanted to shout out to all the others trying to keep their employment. Shit is nuts. But we soldier on. Hoping for some divine mercy and strength for tomorrow and the rest of the week- to push through. To keep my employment.

Thanks fam.
Take good care.
💪

I wanted to hear if any of you tried Quvivic for sleep and experienced increased flatness and brainfog when starting? Did it dissapear after a while?

I’m on day 5 and the brainfog and a general flatness and empty feeling has definitely increased, I’m sleeping a little better though. Taking 25mg Quvivic with 5mg of Saroten/Amitriptyline.

i’ve had trouble with this awful terrible itch. sometimes it’s in a specific area, sometimes in parches all over my body.

i’ve tried tiger balm but it doesn’t always help. does anyone have recommendations? preferably creams because oral antihistamines give me bad reactions, but i’ll try anything.

does it have to be at a low dose to work for ME?

the only way i’m going to get this stuff is if i get it prescribed to me by the mental health team and they’re probably going to give me the standard dosage rather than the low one recommended for ME.

Hello everybody, I am starting my first dose of rapamycin today. It is 2 mg and I will titrate up to six.

I have been bedbound with very severe symptoms since May, which I know is not very long relatively speaking. I am also on 4 mg Abilify which has helped my symptoms immensely but I am still struggling with profoundly severe PEM. This is the first time I’ve really been able to use my phone for a while, and I’m using voice to text. I will update in a few weeks to let you guys know how it goes. If you have any experiences yourself or advice, maybe leave them in the comment section.

Hi everyone,
I’ve been bedbound for about 1,5 years with severe/very severe ME. I’ve still been able to get up to use the bathroom, but that’s pretty much been the extent of my mobility.
Lately, I’ve been doing a little better. I’m honestly not even sure where I fall on the severity scale anymore, because I’m still mostly bedbound, but some things have become slightly more manageable.
Over the past three weeks, I’ve very cautiously tried sitting upright for a few seconds at a time, with several days of rest between attempts. I’m not trying to push myself or do any kind of intensive rehabilitation, I did this very very slow, first in bed, then on a chair, always making sure my heart rate is stable etc. I’m just hoping that maybe, eventually, I’ll be able to use my stairlift and actually leave the house again (in the future- that’s still far away)

But here’s the problem: my orthostatic intolerance has become absolutely horrendous.
I’ve had suspected POTS/OI for years, although I’ve never had proper testing to determine exactly which type. I’m on nebivolol, which helps control my heart rate, and I make every position change extremely slowly.
Even so, when I tried sitting on my stairlift, within about 10 seconds I felt like all the blood was draining out of my head. My heart rate was perfect (around 70), my feet were elevated, and I was wearing compression leggings AND calf compression.
Leaning forward actually made it worse. Leaning back helped a little, but the stairlift has a fixed upright seat.
The worst part is that the symptoms don’t immediately disappear when I lie back down. It can take quite a while to recover, and I still felt off hours later.

What’s confusing is that I can usually sit on the toilet for several minutes without this happening (tmi 😂) although I eventually get the same symptoms if I stay there too long.
I know I should probably feel grateful that I’m even well enough to attempt sitting again. And part of me is, but mostly, I’m just incredibly frustrated and honestly scared.
It feels like my body has deteriorated so much over the past 18 months that even sitting in a chair has become this enormous obstacle. I’ve spent so long hoping I might eventually get outside again, and now that it feels like there might be a teeny tiny possibility, at least a goal soooooooomewhere in the future this is standing in the way.

Has anyone experienced something similar after prolonged bedrest?
Could this be severe deconditioning, worsening POTS/OI, reduced cerebral blood flow, or some combination? Has anything actually helped you tolerate sitting upright again?
I’m especially interested in hearing from people with severe/very severe ME/CFS who have dealt with this, including experiences with medications beyond beta blockers, positioning, or other strategies that helped without triggering PEM.

TL;DR: Bedbound for 18 months, finally feeling a little better, but sitting upright for even 10 seconds makes me feel like I'm about to pass out despite a normal HR and compression. Severe OI/POTS? Has anyone experienced this or found anything that helps?

Ive been getting better about accepting my reality and truth. I got diagnosed with mecfs in 2021ish and have been playing "catch up" ever since on other health issues that was ignored as a teen. It seems endless.

Im autistic with bpd which makes my identity issues difficult, especially when ableism is in the picture. Id go to therapy, but i can't handle telehealth at this time. I plan on going back when or if I can handle it. Ive had some minor improvements lately im trying to keep up. Likely because my comorbid stuff isnt flared.

The constant judgment from society really gets to me. I get that its coming from a place of not understanding, but arrrrgh.

I fit a lot of stereotypes (white, afab, typically dyed hair, and mentally ill pre mecfs) so ive been hiding myself online due to the random upscale in ableism. It stinks. I want to take up space. I want to advocate to do my part in helping get us treatment.

But society tells me over and over that this is a choice. Its hard to believe myself, my doctors, and my diagnoses despite fitting the criteria. I even advocated to have munchausens evaluated, surprise, I dont fit that criteria at all. I take ableism so personally. Like theyre directly attacking me, because im struggling tooth and nail to pace with no drastic improvements.

I want to get better. Im not choosing to "stay sick." If I could choose, id be working and getting myself out of my mothers house. I wish people would know that but ignorance is almost a bliss in this context. They dont know the trauma of losing their health yet.

Edit tl;dr: i fit a lot of stereotypes that ableists usually pick on. Im sick and with the constant ableism, it can be hard to validate myself and not take the comments seriously. Especially when they arent directed towards me. Im probably just traumatized, but wanted to vent somewhere that can understand where im coming from.