r/chronicfatigue

Exercise prescriptions are often given for conditions like CFS, but of course, many factors influence someone's readiness to exercise that day. What factors influence your decision?

I’m trying to gauge if this person has CFS or is a recovering addict… the symptoms are super overlapping and I can’t tell if they’re being truthful tbh. So my Q is, can anyone with CFS hold down a job for years/ decades?

Hi. My girlfriend has ADHD, Autism, POTS and Crohn’s. We don’t exactly know the details of her gut issues. She experiences a lot of chronic fatigue which takes an insane toll on her mood on top of debilitating her. I want to know what I can do, as her partner, to help her with this. I already run errands and try to encourage her, make sure she feels heard, etc., but it doesn’t feel enough. I also educate myself to really know what we’re dealing with.

I also want to ask people who’ve been in my shoes what they’ve done to stay positive themselves, what they’ve done to not lose themselves in the process of helping their loved one.

I know the situation is not hopeless. I know there’s something we can do. I have to know what.

Thank you.

I (25F) sleep issues and chronic daytime fatigue. I sleep anywhere from 15-20 hours a day. I can’t keep living like this and I was wondering if anyone struggles/struggled with something similar and found a way to combat it? Any tips on staying awake during the day even when it hurts and your body is shutting down from exhaustion?

Hi all

My wife has decided she has CF. She has had some bloods and nothing of note. She has not gone back it's been months. We have medical cover so this would not cost a thing.

Her general activity has gone down so much. Truth be told, I'm upset for her. She used to run a lot and now hardly has energy for it. She's a SAHW and we have a 17 and 22yr old living at home. She makes lunch for the 17yr old who has some medical challenges and dinner most nights. Dinner is always very simple.

She sometimes has energy to run 10-15km or go on 10mile walks and other times she's just sat on the said scrolling the whole day.

I work full time, take care of my breakfasts and lunches as well as lunch at the weekends. The kids could definitely do more, but she asks nothing of them and I feel like I'm the only one asking them so we're not aligned there.

I believe she is also depressed. Who wouldn't be. She doesn't want to go to therapy, even though has always advocates for others and the rest of us had have therapy.

I want her to be more active. For herself and for the family. The home is a tip. It's not clean and at times actually dirty. We can't afford a cleaner. It's like she doesn't see mess or dirt. I wish she'd use some of her energy days to sort the house out. She constantly goes on about needing help, but during my holidays time she is just sitting there scrolling all day. Same for most evenings. When I say let's sort together, she doesn't want to. I don't fancy this long term and feel like she should be getting help.

Bit of a ramble. Thoughts appreciated, TIA

ETA - 3/4 yrs ago she was an avid runner but then endometriosis got the better of her. I also have MSK challenges and have had chronic pain for 25+ years. I work longish hours and am also fatigued day to day. I think we are both quite lonely in this as she feels I don't support her enough, but I feel she should either be doing more to support the family or bothering our health practitioners to investigate further.

has anyone else experienced this? i work 37.5 hours a week and try to see friends or go to fun events on the weekends if i have energy (big emphasis on IF). i cannot for the life of me stay on top of chores. there are dishes and trash piling up, clothes on the floor, etc. i feel so ashamed of not being able to do such a basic part of being a person, but my body and brain are exhausted.

I’m trying to figure out what’s been happening to me for years, and I honestly don’t even know if “fatigue” is the right word.
The best way I can describe it is this:
My mind wants to do things. I still have motivation. I have projects, ideas, and I genuinely want to work.
But my body feels like someone unplugged the battery.
I’m not sleepy. I don’t feel like I need a nap.
It’s more like an internal exhaustion. Almost like my whole body suddenly becomes heavy from the inside. I can still move, but everything feels like it requires much more effort than it should.
Sometimes I catch myself taking a deep breath because, for a second or two, it feels slightly better. Then the feeling comes straight back.
The weirdest part is how inconsistent it is.
Some days I wake up feeling amazing and have energy all day.
Other days I wake up with this feeling.
Sometimes I wake up fine, and it suddenly appears in the afternoon.
Most days it gradually improves by the evening.
I’ve had blood tests, I exercise (CrossFit), I sleep reasonably well according to my sleep tracker, and I don’t feel depressed. My motivation is still there—my body just doesn’t seem to cooperate.
I’m a woman in perimenopause, but I can’t find a clear relationship with my menstrual cycle.
I’m wondering if anyone has experienced something that feels like this.
I’m not looking for a diagnosis—I’m just trying to find people who genuinely recognize this feeling because it’s incredibly difficult to explain.
What did it end up being for you?

I've had severe depression since about 2018, but am doing very well mentally since spring/summer last year.
Had insomnia for as long as I can remember, (taking as much as an hour to fall asleep, frequent wakings, 5-6hrs sleep/night), but that seems to be cured since this year after a few months of sleep restriction therapy, so I thought I could start rebuilding my life to have some kind of future but then it turns out I have non-sleep related chronic fatigue and it's getting worse since I started working a part time job this year.

Sleep-related causes have been ruled out by two sleep centers, though in my opinion the testing wasn't very accurate or thorough. Past blood tests have never shown anything out of the ordinary. I have few to none of the physical symptoms of ME, just frequent headaches and very limited PEM (compared to what I've read about). So out of a few online ME tests I've done the results are about 50/50. I often have heavy brain fog and trouble concentrating. Speaking costs me a lot of energy.

Waitlists are very long in my country, with 3 months to see an internal medicine specialist at the local hospital to rule out physical causes, and up to 11 months for a chronic fatigue specialist. Through my insurance I managed to see an internist on much shorter notice but the man spent most of the appointment asking about my living situation, work and psychological stuff like he was trying to find something else to blame it on as if I haven't already spent years working through those things with psychologists and psychiatrists. He ordered another blood and urine analysis but neither of us expects anything to come out of it.
It's so hard to get any of the doctors to do anything or take me seriously.

Currently only taking Xanax and Propranolol very sporadically and in low doses for anxiety and stress.

I just want to get on with my life now that I'm finally not depressed anymore but now this is getting in the way. I don't wanna waste more years just stuck on waitlists.

I don't know if there's too much info here, or too little, ask me anything you need to know, any help would be appreciated. I'm tired of being tired.

Hi all!

I have RA, MCAS, POTS, and suspected CFS. I recently switched my hours at work to beginning at 7:30 am (not my choice), and regardless of how much sleep I get, I feel sick all the time, and it's making me start to hate the job I once loved so much.

I'm on LDN and Iron to attempt to help, and I drink lots of caffeine, but I still have this overwhelming feeling of needing to sleep immediately, and I can hardly focus anymore.

Does anyone have any advice or things that help them? I unfortunately cannot leave this job or change my hours, so mostly looking for ways to cope with 5 days in person a week and early hours.

TIA! No one in my personal life understands that it's not sleepiness, it's fatigue, and their advice is frustrating and minimizing

Hello everyone,

Im sorry if this is going to be a long one, but I have been unwell for a while now and am looking for some support from this great community.

29 Year old male. Over the past year, I have been a very avid reader, trying to figure out what was going on with me. For context, I used to be a very outgoing person who would travel a lot for work and pleasure. I used to work out 5 days a week, both lifting and running, and would have energy for days. About September of last year, I got a pretty bad stomach bug. It felt like my digestion was just off, and I had developed what felt like a food intolerance to everything. I started to notice I was establishing chronic fatigue and brain fog, and no matter how much sleep I get, i feel like i got hit by a truck when i woke up. Then the symptoms started to compile. i noticed my smell pretty much disappearing, I woke up with a daily sore throat and dry mouth and dry eyes. I started trying to take some allergy pills, but those didn't seem to work. The humidifier caused some relief. Then the ringing in the ears started along with the daily headaches, in December, primarily on the left side of my head. I also noticed that I could not stand or sit for long periods of time, and I needed to lay down. Physicial activity absolutely drains me. I went and get blood work done, and it just showed me vitamin D was low, so I take a vitamin D pill every day. Ive been to ent, had more blood work done, ct of the brain and bowel and everything came back good. They started me on 10mg lexapro because the chronic headaches and fatigue led me into an anxiety and depression along with a laundry list of other symptoms :

Feeling like my body is on fire can't cool down. Face turns red (summer)

Feeling to cold hands turn purple (winter)

Dry eyes

Dry mouth

Brain fog

Neck pain and headaches only on the left side

Chronic fatigue even though i sleep I dont feel rested

Taste feels off

New food sensitives

Food crashes after eating

Loss of smell (no sinus pressure)

Numbness in my hands and feet

Slow digestion

Sugar cravings

Dizzy upon waking

Body trembling

Balance issues

Consistently thirsty but unable to quench thirst

Frequent urination

Unable to stand for long periods of time

Refexes are off

Need to always lie down

Vision changes

Loss of sex drive

Depression

Anxiety

For the headaches I've tried dry needling which made it worse, massages which maybe alleviated the headaches for a day, antidepressents for headaches which made it worse, any otc, advil, excedrin, Tylenol make them worse.

My fatigue is no better even with great sleep the left sided headaches are worse and i feel like im sleeping 10 hours a day. I recently had to take a leave of absence from work and change positions as well due to my inability to travel. just feel like my life is getting smaller. The more I try to manage these Landry list of symptoms along with work, family obligations, and my own life it really leaves no energy for the joy I used to feel. Im suppose to officiant my best friends wedding next week in maine and im just wondering if im going to make it through the trip. Im hoping to get into a nerologist soon my most recent appointment got canceled because they went on paternity leave. Currently im seeing a holistic doctor that has me taking 1 pinch of salt, some af beta food, vitamin c, vitamin d and im still taking the lexapro been on that for 4 months now. Since my PCP really has no awnsers.

Just would like some advice on what you guys suspect or what would be smart next steps to take. Im running out of options and just want to have some of my energy back and zome relief from this chronic pain.

If you carry HSV (even asymptomatically) this might explain a lot.

I used to get hit with awful fatigue and brain fog seemingly randomly. Sometimes 2-3 days of feeling completely non-functional. No explanation.

Eventually I connected it to stress periods - and then realised the fatigue wasn't the stress itself. It was my immune system dealing with a stress-triggered HSV reactivation.

Here's the chain as I understand it:

1. Physical or emotional stress raises cortisol

2. Cortisol suppresses immune function

3. HSV reactivates (even if you don't get a visible cold sore every time)

4. Immune system goes to work - this causes what's called "sickness behaviour": fatigue, fog, low mood.

5. The same immune suppression can allow Candida overgrowth (thrush) and excess histamine (worsened allergies)

The fatigue is basically your body in full immune-activation mode. It makes total sense once you see it and it feels like mild flu because your body is fighting something.

Worth asking your GP about suppressive antiviral therapy if this pattern sounds familiar. It's changed things significantly for me.

Anyone else pieced this together?

I (25F) have struggled with chronic fatigue for as long as I can remember. When I was younger doctors blamed it on “growing” and “hormones”, however I’m 25 now and it’s getting worse. I have had a sleep study done, countless blood tests and even though I’m receiving diagnoses, nothing seems to help. Right now, I have been diagnosed with Periodic Limb Movement Disorder, Anemia and Hoshimoto’s. I’ve taken the medications that the doctors have prescribed me for each diagnosis, but I’m at a loss. I can’t go for more than 2 hours without needing a nap. I’ve been told to eat healthy and workout and I do eat decently well and supplement iron but I physically can’t get myself to workout due to the extreme fatigue. I guess I’m just trying to see if anyone has had similar issues and found anything that helps? I’m seriously at a loss and I just feel like giving up. It’s unsustainable to live like this, if you can even call it living.

TLDR; After being diagnosed with Periodic Limb Movement Disorder, Anemia and Hoshimoto’s and medicating for such, still dealing with debilitating fatigue. Any advice/suggestions?

I find that a 20 minute nap is not sufficient for me if I'm really tired. a 90 minute nap makes me wake up feeling even worse.

Caffeïne doesnt help it just makes me feel more sleepy immediately.

What am I supposed to do then. Drugs?

A little extra context: I bikecommute on an ebike so I'm not a couchsitter I'm also not very sporty I'm rather inbetween the 2.

My legs often feel like dead weight. On a bad day, I can

• Hardly stand up from the couch
• Need to use my arms to pull myself upstairs
• hardly stand or walk at all
• even though my ebike with cadence sensor has about 0 resistance, pedaling can still feel heavy.

And ive been going to the doctor SO MANY TIMES. Heres what usually happens:

1. Just another bloodtest that shows nothing suspicious of suspicious value
2. Just another explanation that "its just stress and mental problems affecting the body, we didnt find something medical so you should work with a psychiatrist"

And yes Ive seen different doctors for this. I don't know what to do at this point.

Edit for some extra medical context:

• I have chronic burnout (partialy powered by autism and adhd brain)
• One year ago I randomly got Atrial Fibrillation which so far didnt come back after the cardioversion in the hospital.
• As a teenager in the past I was unhealthily overtraining at extreme levels due to my extreme obsession with sports and the "no pain no gain" philosophy. I don't know if this could play one role.Now.
• My diet is decentish, but not perfect. I drink and eat bread, peanutbutter, cheese, milk, grapes, bananas, carrots, and whatever is for dinner in the evening(random). Vegetarian too.

I’ve struggled with chronic fatigue and idiopathic hypersomnia since I was a teen. My labs came back “normal” (20 ng/mL) but one day I asked my doctor if I could take iron supplements to get to optimal levels and she said I could. I not only have more energy, but I am actually happier and more motivated. Obviously, this isn’t going to apply to everyone with chronic fatigue, but it’s crazy how long I’ve been dealing with this when the answer was so straightforward.

Constant crash state since January (7 months), mostly bedridden, no diagnosis

Hi, I took the time to write this post, please read it even if it’s long. I’m not looking for comfort messages. I have no diagnosis, no help from ERs or doctors, and I’m suffering a lot.

TL;DR: I’m trying to understand what I should do, whether I should go back to the ER, and I’m also looking for possible hypotheses, a diagnosis, or people experiencing something similar.

Context:

I’m 21 years old. For about 1–2 years before this started, I was mostly sleeping during the day and awake at night (very reversed sleep schedule).

My situation:

This has been going on since January, so about 7 months now.

At the beginning, it started with episodes: sometimes I would suddenly feel like my body was “collapsing”, as if my vital energy was crashing all at once, and like I had a severe illness or was in a terminal state.

This is not pain like an injury. It’s a very intense internal suffering, like the body is dying. At that time I didn’t even think of words like fatigue or exhaustion, but maybe it could be described as an overwhelming crushing exhaustion, where my breathing feels different and I feel like I’m on the edge of death.

I had these episodes several times, with my heart beating very strongly, as if it was just trying to keep me alive. I felt “dead” — this is not an expression.

Little by little, it became constant instead of episodic. I became bedridden because whenever I walked or moved, I would suffer intensely.

At first the symptoms would come suddenly, then sometimes improve between episodes. But very quickly, by the end of January, it became constant and I stayed mostly in bed.

In February, I was going to the ER almost crawling, forcing myself to walk. I can still walk today, but I feel an intense sensation of death or severe illness.

At the ER, I sometimes had a surge of adrenaline or a panic-like episode while sitting there, even though I am not an anxious person by nature.

To describe the intensity, it feels like:

a constant severe internal collapse state

as if my body is functioning at the absolute minimum just to survive

a feeling of severe illness throughout the whole body

a constant blocked adrenaline/panic-like tension in the background that terrifies me

Symptoms when I walk (and sometimes even at rest):

sensations in my head (not vertigo or dizziness) — more like an “empty” or “wrong” head feeling, like constant pressure/low blood flow

constant feeling that I’m about to faint

blackness sensation in my head/eyes for hours (!!) (I can see normally, but the sensation is there and it’s terrifying)

sometimes even while lying in bed without moving

Other symptoms:

chest pain/pressure several times a day, both at rest and with exertion

sensations similar to hypoglycemia lasting for hours

constant malaise after exertion or even without exertion

my heart does not really race, but it beats normally while giving the sensation of pumping very strongly, as if it is working extremely hard to function or keep my body alive

basic tests normal (ECG, blood tests, blood pressure in February — not repeated since)

Today I cannot function normally:

I cannot study because this constant collapse state is always in the background

I cannot watch shows or enjoy hobbies

even basic activities are extremely difficult, even if I can force myself

eating, showering, or waking up can worsen symptoms

The worst part is this overall feeling of “dying”, exhaustion + a constant bodily sensation of being on the edge of a panic attack (it is constant). I feel like I could die at any moment and I don’t know if this is normal or if something is seriously wrong.

I had basic tests done (blood work, ECG, blood pressure) and everything came back normal. My ferritin was 18 in February but considered “normal” by the doctor.

I’ve been told this could be anxiety or deconditioning, but what I feel is completely physical, constant, and disabling.

My doctor told me to see a cardiologist, but the appointment is in September. Am I supposed to stay like this until then?

My mother doesn’t really care, she is very harsh with me, and my father doesn’t understand — he told me “go walk”, and “if you want to travel I’ll pay, just tell me where”. But I’m suffering… how am I supposed to travel like this?

I’ve already been to the ER several times, but I felt dismissed because I could still sit and answer questions, even though I felt extremely unwell inside.

I wonder if I should show my real condition (lying down / calling an ambulance / saying I cannot stand) to finally be taken seriously.

I’m also worried because I have no diagnosis. I don’t even know if this could be ME/CFS, but honestly it feels similar.

I’m scared of staying bedridden without follow-up, of developing blood clots, an embolism, or something serious. I wouldn’t even know how to recognize early warning signs.

I also know I tend to minimize my symptoms.

I don’t know what to do.

A friend told me that if it is ME/CFS, there might be a reason. She suggested seeing a psychologist? Could a toxic family environment / chronic stress really make someone this sick?

I grew up in a difficult environment, but I used to feel mentally strong and okay, so I’m not sure I believe that. Or maybe it affects us unconsciously, what we keep inside to become stronger… I don’t know.

On December 4th, after a conflict with my mother, I had a severe 4-hour panic attack and the first onset of all these symptoms: I felt like I was going to die, had a violent panic attack, saw everything go black twice, had prolonged presyncope for hours, chest pain, and a collapse-like feeling as if I was dying. After that I recovered, then I got sick in January — I don’t know if it’s related.

But to sum up, I’ve been bedridden for 7 months.

I have diagnosed TRD and some variety of chronic fatigue, possibly as a consequence of covid.

I have been working with a psychiatrist since 2022 along with a few of her colleagues occasionally, been in multiple intensive outpatient programs for depression and anxiety, seen perhaps a dozen therapists, tried dozens of medication combos and various treatments both on and off label, participated in multiple research studies looking for treatment, and am pursuing more right now.

My chronic fatigue is persistent and has not responded to treatment.

I get profound, often unpredictable bouts of absolute exhaustion and lethargy. My movement, thinking, speaking etc slow down and I struggle to get or stay out of bed.

Sometimes the triggers are clear in retrospect, but I often cannot predict for sure when it will hit.

When it does, like this evening, she gets irritable and snappy, like one might with an unexpectedly slow computer.

I understand her feelings and she has every right to them, but it hurts. I am not a computer. I don't want to be slow, to fail and fall short of her expectations or needs.

I want to be the father and husband that my son and my wife deserve.

Right now, I cannot do that. I can't take half of the responsibility, give her the same breaks that I need, react faster when the situation demands it, drive when I can't keep my eyes open, etc.

I never wanted to become the husband who doesn't do his share, the father who couldn't watch his own children for a day.

I'm fighting like hell to get better, to find a way out. But I'm so tired.

And it's been such a long time. Years.

I don't know how accurate this perception is (I've been through enough therapy to know how biased we can be), but I feel like I live constantly in the shadow of her anger and frustration.

She doesn't feel like she has the time for therapy or couples counseling, and she refuses to lean on others too much for fear of wearing them out (to be fair it's basically just her parents helping us sometimes. They are eager to help and amazing people, but they can't do everything all the time).

I don't know what to do, say, or even feel about this.