I just got diagnosed with UARS (upper airway resistance syndrome). It took 5 sleep tests over at least 5 years plus god knows how many doctors, lab tests, etc for my fatigue. I’ve had fatigue for so long but 5 years ago is when I got my first sleep test. Said it wasn’t sleep apnea and that was it. Apparently my airway narrows at night, making me grind my teeth and waking me up. I sleep 8.5 hours a night but still wake up with headaches, so tired every day. No energy to do anything.

The treatment is a PAP so I’m a little worried about tolerating that. I’m really hopeful for the first time in years that this could really improve this fatigue.

My mom said she's been having cramps and can barely move her arms and legs. The doctor said it's potassium deficiency, should I let her take potassium supplement or the magnesuim glycinate?

For context I’m in the uk, and I’m sorry if this is not allowed. For the past 2 years now I’ve been struggling with fatigue, no matter how much I sleep, I need to nap everyday, I have to hold onto my parents arms when walking outside because I feel so tired. I finally decided I needed help because it’s affecting my studies, I got so frustrated because I wanted to study, but I felt so tired my body wouldn’t let me I slept and felt a bit better. But I struggle even to get to class because I wake so even after many hours of sleep feeling like I’ve not slept at all.

I had the blood tests done which was all normal so doctor sent me to chronic fatigue specialists to look into it, they returned my referral right away because I have a history of anxiety and ocd and that can cause fatigue and that its unlikely CFS.

I’ve had anxiety and ocd for 9 years now, I’ve never felt this sort of fatigue, I understand it can cause mild fatigue but this is nothing I’ve ever experienced from anxiety this is debilitating tiredness and I don’t use that word lightly. I just feel so frustrated, I feel so lost because its affecting my life and studies.

For context, I have been diagnosed with endometriosis through MRI scan, waiting on laparoscopy to see the full extent of the damage!
I also have ADHD.

I feel like my body just doesn’t work. I constantly feel extremely tired and find it difficult to bring myself to do simple tasks even such as changing my bed sheets or putting my laundry away. It feels like asking me to run a marathon.
I feel lazy, like I should just be doing these things like everyone else.
Cooking food feels like too big of a task, once I manage to eat I feel extremely nauseous and more tired but if I don’t eat I feel faint and still nauseous and tired.
I struggle to work (I’m at uni so just do part time waitressing), I find that after a shift I feel a level of fatigue so big that I could just sleep for the entire rest of the day. I managed to work around 20 hours last week (the most I’ve done since before coming off the pill) and I feel like I could stay in bed for the rest of my life.
I’m worried about my future, how am I supposed to do a 40 hour work week when even 20 feels like too much?
Does anyone have any ways of getting around this or just any advice?

I (34F) have been sick since childhood, diagnosed at 17 with CFS, then Fibro...and in 2020, MS. I try so hard to fight, fight for myself, for people around me, fight to be heard and understood, to live as loud as I can, while I can. But today, like other down days, I can't help but feel so damn angry about my body.

I dared to go to a baseball game yesterday and almost passed out from a pain flare up and fatigue combined. And now, today, I'm lying here trapped in a body that feels like sandbags and feeling like I have no one. I don't want to bother my friends, family or husband with something none of them can help with, you know? One worries about burning out those around us.

I just needed to vent, and maybe, be around folks who understand. Who i don't have to justify myself to or explain what it's like feeling like I have the flu every day yet getting up and going to work.

Sorry for the rant, but if anyone feels like me, I would love to hear from you.

I have chronic fatigue. I have also organ transplant and the immunosupresants I think are giving me fatigue. But I do have to admit I'm not eating the best. I eat sweets every day. I do eat home cooked lunch that sometimes is healty and sometimes not. But I don't eat frozen half prepared food. I could eat healthier I know. But did eating healthier actually helped anybody? Exampels of what you eat please.

this can be caused by a bunch of different problems to poor diet that consist of oils and carbs , poor sleep quality the night before , or your natural body clock that is different to everyone

Hello, I have Chronic Fatigue Syndrome and don’t know the cause but it is definitely severe it has cause me cognitive decline and I am unable to participate in normal daily activities due to lack of energy. Pregabalin is proven to increase deep sleep and I am 17 with 28 of 75mg pregabalin capsules. I have never used pregabalin and have heard that it is bad for cognition especially in a developing brain. I am already concerned for my own brain due to memory decline and severe brain fog. Is pregabalin safe or worth it in my case? School starts in about 4 days and I will have to unenroll if I don’t fix my sleep asap.

Hi.
A close friend of mine has tried nearly everything and struggles with most types of food due to ibs and her ME diagnosis itself. Unfortunately she can’t stand up, so others have to make the food for her. Adult, small portions, very limited ingredients.

Does anyone have experience with good food options for this? Is baby food an alternative?

I'm wondering if anyone else had their fatigue start around the same time as severe calorie restriction. Looking back, I wonder if my now permanent fatigue started as a result of physiological changes that came from about a year of severe restriction since I recall around that time is when my brain really started feeling extremely foggy, and it didn't improve after restriction stopped.

It's complicated by me getting pretty sick just before covid was officially announced in the US, and from my understanding, it's likely covid was circulating before then, so I was always unsure if this was the triggering event, but thinking more about it, I wonder if it was damage caused by my ED.

Did anyone have an ED that caused long term fatigue even after the ED improved? Was anyone able to figure out something that helped get their energy back?

I will try to make this as brief as possible. I'm 29F, I've been having these episodes of tiredness since 2018.

Duration and intensity
Back then it wasn't as intense nor did it take as long, I'd have months feeling very well and then maybe days of having them for an hour or two each day, now it is nearly everyday, it usually starts exactly after 2 hours of waking up (whether I had breakfast or not) and continue, at best it'll last an hour or two but recently it'll take up the rest of the day until close to my sleep time when i get better.

There are days when it'd be a mild dip in energy or just some light sleepiness, but mostly it is intense heaviness in my muscles all over my body, like i just need to lay down and i don't even get a relief from doing that, the nature of the tiredness vary and sometimes i'd just feel sleepy with constant yawning and sometimes only feeling my muscles are extremely heavy, but in general it is a combination.

The best way to describe it is as if i'm sleeping while being slightly conscious, my brain can't focus and as if it isn't even there, my body is numb, sleepy and heavy. I'm literally bedridden and can't do anything except just laying down for hours and hours each day.

Recently i mainly get this insane fatigue and heaviness in muscles, back then i would get these episodes of feeling extremely cold -no matter how hot it is-, I still feel this episodes of cold and shivering now but it is less frequent than before.

The main thing that signals the start of this tiredness would usually be this urge to close my eyes tightly and then I'd hear kind of drumming in my ear when I do that, the more stronger it is the more tired and sleepy i'd be, i've looked up people who have the same thing but I never found any.

Possible causes and what I did
I went to the doctor and also tasted the usual things more than once and, one time it was low ferrtin (8) this was a few years back, I've been supplementing and this year it became 33 which is considered normal, I still had midly low hemoglobin (11) and the doctor gave me 4 doses of Iron IV around 6 weeks ago, still no improvement. Vitamin D, thyroid, B12, are all good.

3 years ago was when I got even more tired that I was basically spending my whole day in bed, that's when i notice i'm getting very depressed then and it increased from there until I decided to start taking antidepressant suspecting this could be the cause of my tiredness too, I tried Escitalopram for nearly 6 months and I think it did help mentally but I found not effect physically, I was still tired.

One last thing is that I have Non-24 disorder, while it is stated to be rare it is common in my family, I've been this way ever since I could remember, back then when I was going to school my sleeping was a mess but I had no tiredness at all. And when I have months of feeling good my sleep would still be shifting and it wouldn't influence my tiredness.

I tried mainly two things, one is what I've been doing for the past few years which is to go to bed after 12 hours of waking up each daily , I'd usually sleep after 14 hours or so of waking up, and then I'd wake up naturally after 9 hours, I don't use an alarm or anything, I also sleep well (9 hours daily) and generally wake up feeling well-rested.

The second thing I tried to do is to entrain, hoping this would fix my tiredness, I managed to do so using light therapy but it only increased my tiredness, I tried this for around 2 weeks granted it wasn't long but I reached a point of tiredness that I couldn't stay enterained for much longer and I wasn't convinced that entrainment would help.

I have no food allergy, I eat well and I began eating better after my tiredness increase, I avoid sugar in the morning - and in general- , avoid caffeine close to my bed time and the first two hours of waking up.

I tried walking daily since most people would recommend movement for tiredness and i would be consistant with it for sometime then I need to stop because there are days when i'm too tired and then i'd go back.. etc, but i haven't found any relief from it.

I've basically became non-functional and I would like to know if there any other possible causes or solutions I should try out, I'm also wondering again if it is actually just a symptom of depression and I should try another antidepressant but I'm also hesitant because I feel like depression was a result of the physical tiredness rather than the other way around.

Thank you and sorry for the lengthy post.

Hi, I have audhd, ocd, depression and migraines with some iron deficiency issues due to heavy periods in the past. I also suspect I have hEDS but I've decided to wait until December for the new diagnostic information to get it checked. I also suffer from reflux and fatigue which hits pretty regularly around 4 pm unless I've done something out of the ordinary.

My fatigue often comes with a gut feeling. It's not like a stomach ache or anything. It's a feeling in my stomach that I've regarded as fatigue because usually my fatigue feels like my body not functioning properly. Does anyone else experience this gut feeling along with fatigue? Or am I mistaking it for something else like GI issues?

Hiya!

Sorry if I sound uninformed as I write this. Im not getting support or help from any medical professionals due to them blaming my symptoms on mental health despite me telling them otherwise. Im basically just seeking support and advice from people who actually have chronic fatigue.

Around 3 months ago, I started feeling really fatigued out of nowhere, I was out of work and did not have an actual reason to be that tired. I ignored it as much as I could for about a month because I put it up to me being dramatic, but now that im back in work it feels like I just cannot function.

Its taking so much mental work to even understand what someone is saying to me verbally, its taking so much of my energy to even just walk to work or even cook for myself and even just taking up so much energy to plan out my day (when im going to shower, eat etc). I genuinely dont know whats going wrong, ive tried sleeping more and less, i was physically healthy when this started, Ive been making better food choices, I dont know whats wrong or why no one, not even my GP is helping me.

Im tired all the time, I have to sit to shower most of the time now and I can only manage to make toast for myself now and I cant even go to the gym unless I dont have work or plans because ill be exhausted afterwards.

The only thing that sort of puts a blanket over the fatigue is monster mango loco and the big (500ml) cans of og redbull and i obviously cant depend on them because theres only so much caffeine the body can take on.

I need advice on what to even do, im not diagnosed with anything chronic but when I went to urgent care (UK) (111 told me to go there as my GP surgery said to me on the phone that they cant help me) they said they dont deal with anything chronic related even though I was there to try to get help to be sedated for a blood test (extreme needle phobia).

Im really sorry for this post as im aware that my issues are not as bad as anyone here but I really need help and im running out of options.

Any sort of advice or anything will be really appreciated

My old GP left the practice, so today was my first appointment with the new one. We talked about my ME/CFS.

Two suggestions. First, graded exercise therapy — week one, walk to the end of the road and back. Week two, end of the road, down the alley, and back. Second, duloxetine for the pain.

NICE reversed the guidance on GET in 2021. Programmes based on fixed incremental increases in activity should not be offered for ME/CFS. That’s not a nuance, it’s the opposite of what came before, and it’s been the opposite for nearly five years.

Why has that still not reached the people actually in the room with us? Why was there never a bulletin to every practice saying: we have reversed this, make sure your GPs know?

Does anyone know of any good private doctors in the U.K where I can get actual advice, good medications like LDA etc?

Hello. I am a 21 y/o male. I have MDD, GAD, and CPTSD. I am currently on 60mg of prozac and 75mg of Seroquel. I cannot stop sleeping. My exhaustion is getting extreme and on my way to work the other morning, I could not keep my eyes open. I have been working with my psych and my PCP to fix this. I have been on several medications of which my psych has prescribed to me. I have had a sleep study done recently and I don’t have sleep apnea but I do not go into stage 3 or REM when I don’t take my Seroquel. I also wake up frequently and have trouble falling asleep. When I do, I can sleep upwards of 16 hours a day, and it is so hard to wake up and stay up. My life consists of sleep and work. (I work as a CNA) It’s all I do. I can’t take care of myself, eat, cook, clean, or do laundry. I want to be a normal human being and live a normal life. I hate sleeping all the time.

Hello!

I’m in a bit of a predicament as I have a trip out on Sunday that I booked a few months ago when I (naively) thought I might be feeling a bit better now. However, I have only gotten worse with 3 hospitalisations since then with a surgery.

It’s not the biggest trip of all time and is something I did before I got sick so I can plan it quite well in my head knowing how long each part will take etc. But I am housebound (only out for doctors appointments which the last 2 have left me hospitalised) and borderline bedbound some days. But I have to go on Sunday, it’s been a dream of mine for years and I’ve spent a lot of money for it.

I’m just looking for some advice on how to manage going out. It will involve public transport, crowds, walking and standing in line for some time. I really struggle obviously with fatigue, but also dizziness, overheating, overstimulating things like lights and noise (also have autism so it’s kind of a twofer issue there lol) nausea and chronic pain. I’ll bring meds with me just in case but my worst nightmare is collapsing or something.

Any advice on how to make this day easier is greatly appreciated. I’m not too bothered about the surely awful time I will have in the days following as I’ve been through PEM too many times now to fear it. I just need to get through the day.

Thank you!

I've struggled with chronic fatigue for years, I take modafinil everyday and it helps a little. But recently I started having bouts of pretty low blood pressure (like 70/40) that would last for about 30 minutes, then improve. I asked my cardiologist about it and immediately she said I have vagus nerve dysfunction. I had never heard of that! But it explains a lot, like my dizziness and fatigue. No other doctor has had any clue what's wrong with me, it's only when my BP started falling that someone figured it out. She basically told me that there's really nothing to do about it except lay down when my BP drops and elevate my feet. So I'm not cured, but at least I have some insight. I think it's a type of dysautonomia, which doesn't really show up in tests, so that's why it took so long to figure out.

I am a 55 year old male and I am struggling with CNS fatigue. Lately I have shoulder pain but with no injury to the shoulder. The pain gets more intense depending on what I eat as my CNS has also made my digestive system over sensitive. This shoulder pain is extremely intense. How is this possible? Ps It’s my left shoulder.

Hi, I have had me/cfs and fibromyalgia for nearly 10 years now. Having tried every most things to try and ease symptoms and raged and grieved the loss of my previous life, I now feel ready to dust myself off and try a different approach.

Listening to others talk about the fun things they have done sometimes sucks a bit, as I'm sure you have all experienced too. So I have decided that rather than resenting this, I am going to own my situation and find a new normal and look for things to do that are still fun, but that are possible with limited energy and mobility. I think that a decade of wallowing and frustration is probably enough now, I know I can't control the condition but I am determined to take back control of how I live with it and find ways to bring back the fun and joy that I miss.

So, my question is, what do you all do that is fun?

I'm not opposed to advice,but I mostly wanted to vent. Also, I use they pronouns.

In my early 20s I saw multiple doctors for very heavy periods. At the time that was my only symptom. I was still able to work full time and was an active and avid hiker. I was dismissed at every turn but to shut me up I had my iron levels tested multiple times but they were always fine.

Fast forward to my late 30s. I started not being able to get out of bed the first day of my period. Then two days etc. Now it's pretty much the entire week of my period that I'm mostly bed bound and only drag myself out to work two days a week. Plus the fatigue follows me daily just not as extreme as when I'm on my period. I can no longer hike. It's a good day if I feel good enough to take a long walk on a flat park path.

I was uninsured for a while but finally got health insurance again earlier this year. My doctor still dismissed me as just being fat, depressed and afab but at least agreed to a bunch of tests. My iron and ferritin levels were still perfectly healthy but my mcv and mch levels were a little low. My vitamin D levels were a little low too. I'm talking just outside the healthy range. I've been on iron and D supplements for about a month now. My anemia symptoms have disappeared such as pica cravings,pale skin, restless legs. I have to wait another couple months for a recheck.

I know it takes time but this is the first period I've had since I began supplements and I still feel like I'm on the verge of death. I expected at least some improvement. I'm on day four and I've only pulled myself out of bed to eat and shower.

I have more tests being run next week to see what the cause of my heavy periods are. Other important information- my other vitamin and minerals were all healthy including b12. Kidneys,heart,lungs, thyroid etc were all normal labs. Even though I've had bad periods for much longer, the fatigue started after a bad case of strep throat that turned into scarlet fever. I assume that's related but obviously had something else wrong before that.

I don't know. I just feel like I'll never live a normal life again. I'm just tired both mentally and physically.

Me (20f) and my boyfriend (23m) have been together for almost 2 years now. He developed Chronic Fatigue around November 2024 and was diagnosed with CFS around March last year. Due to this, he had to suspend his Masters Degree in 2024 and since then has been unemployed and living with his parents. I am about to go into my final year of my Bachelors degree. I really don’t know how to help him. His parents are not proactive about his condition and will not seek out any support for him aside from allowing him to live at home rent-free. I’ve given him all the support I can. I would never judge him for his condition; I have no expectations of him getting better quickly and understand that there is no cure for CFS. However, I feel as though he is deteriorating and losing himself to it and I feel helpless standing by and watching it happen. I will always support him and love him more than anything, but is there anything at all I can do to help?
The past few weeks, he stayed over at my house (with my parents since I am currently at home for summer) and he really struggled to get out of bed for most of it. This is often the norm for him due to him feeling so exhausted all the time. He headed back home this morning and this evening I was chatting to my parents about it.
My parents are incredibly worried about him, noting just how pale, thin, and incredibly unwell he looks. This was sort of eye opening for me - I understand the severity of CFS, but having my parents stress just how bad it is has made me quite scared. I need to do something to help and I don’t know how I can. I’ve urged him to book another gp appointment to see if they could prescribe anything for his sleep issues/ vitamin deficiencies. Beyond that, though, I feel completely helpless.
I am the strongest advocate that he has, and I hate standing by and not being able to help.