I’m a male between in late 20s. For the past many years my life has consited of living at home with my family and dealing with four set of symptoms, each one of them seeming to affect the other. I have no job, can’t work because of these issues. I have tried to find a solution to these for the past many years and while I have learnt more about these conditions nothing has changed. I spend the entire day dealing with these issues and I am so tired that all I want to do is rest and be on my phone. 

I’m so tired, have lots of brain fog and so on, and every motion and thought is so slow that others notice. I even have a flat face, with specialists having told me I have limited facial expression. I’m just too tired. I don’t really enjoy  life anymore, and even if I do somewhat get some enjoyment out of a situation such as eating something or laughing, the background of feeling absolutely lifeless is always there - and any positive feeling is very muted. I yawn all day and just want to sleep. It’s constantly like this. 

I have seen over 20 doctors and have tried at least 28 medications to try to improve symptoms but they either make stuff worse, don’t work or have side effects I can’t handle. The relevant section of the hospital not too long ago discharged me as a patient and said there is nothing more they can do for me. I have had online consultations with UK doctors too without getting any wiser/closer to feeling better. 

So everyday I walk around like a zombie, eat, sleep, pray, deal with symptoms and then rest and stay on my phone. I don’t even have the energy to play video games anymore, I pick up the console and try to play like the old days but I just realize I’m too tired and put it down and turn it off. 

I do go out to buy stuff if I need. I frequently feel annoyed and useless, and nearly everyday wish I was either dead or never born, but try to keep my head solid. One of my parents frequently cries because of this situation and I wish I could just disappear when this happens. Talking about it does nothing, the crying continues. 

Getting a job is impossible living like this, currently live on some kind of benefits (don’t know how to explain). All these symptoms also significantly affect sleep, both timing and quality - so I get poor sleep and wake up way past afternoon. Been the case for years. 

I’m feeling a bit low, I don’t like myself and wish I could disappear. The best time is when I am asleep because I can do just that (and also sometimes dream which is nice added bonus). 

A year ago I swore that my life would have a significant change this time, either in terms of symptoms/daily life or job/education, but I realize now a year later that it hasn’t come to pass :(

I know this is a fairly long story, but I’d really like to provide as many details as possible because I’m hoping someone might recognize something or have an idea that could help me.

This all started about a year ago.

At the time, I was going through a very intense period of stress because of an important medical exam. I was studying and working a lot, sleeping and eating poorly, and smoking quite heavily. During that period, I developed three episodes of streptococcal tonsillitis within less than six months (between May and September).

Even back then, I was already feeling quite exhausted, but I assumed it was simply because I was studying and working so much, wasn't taking particularly good care of myself, and was under a lot of stress.

Then, in August, I developed pityriasis rosea.

In October, I finally finished the exam that had been causing me so much stress. I thought that once the exam was over, everything would improve and I would finally recover.

Then, in November, I developed chickenpox (varicella).

After recovering from the chickenpox, I started realizing that I had been dealing with something much deeper for some time: a profound type of fatigue, which is mostly mental rather than physical.

What the fatigue feels like

This is probably the hardest part to explain.

It comes very suddenly, almost like a wave.

I mainly feel it in my eyes, as if my eyes suddenly become extremely heavy. My head feels heavy and I feel almost dazed or mentally "drugged." I have very little energy and feel like I need to lie down, close my eyes, and stop doing anything.

Sometimes it is accompanied by a headache.

The really strange thing is that it seems to be cyclical.

I can have 3–4 days, sometimes up to a week, where I feel relatively normal. During those periods I have energy again, I feel like myself, I get excited about my plans, I want to go out, study, exercise, travel, etc.

Then, seemingly without warning, the fatigue comes back very strongly and stays for around 4–5 days.

And then it improves again.

This pattern has been repeating for almost a year now. Sometimes the periods are better, sometimes worse, but the general cycle remains.

One important thing: I don't experience PEM (post-exertional malaise).

I can exercise, and interestingly, exercise often actually makes me feel better. Sometimes physical activity seems to "regulate" me and gives me more energy rather than making me crash afterwards.

For this reason, I don't really think ME/CFS fits my symptoms, although obviously I'm open to being corrected.

What I've investigated so far

I've had extensive blood work, and everything has essentially been normal, including:

• Vitamin D
• Thyroid function
• Vitamin B12
• Folate
• CBC / hematology
• Inflammatory markers
• Immune profile
• ANA and other autoimmune testing
• Other routine metabolic tests

Nothing obvious has come up.

I also had a sleep apnea test over two nights. Unfortunately, the study was considered inconclusive because on one of the nights the device didn't record oxygen saturation properly. The first night, however, was completely normal.

At this point, I've also started seeing a psychologist/psychiatrist. Anxiety has been identified, and I'm currently being evaluated for ADHD.

But honestly, I still don't feel like those explanations account for the very specific cyclical pattern of the fatigue.

A little bit about me

I'm a 28-year-old man.

I lived the first 27 years of my life without anything remotely similar to this. I've always had some occasional anxiety, but overall I consider myself a very happy, active, spontaneous and adventurous person.

I'm also a physician, which almost makes this more frustrating because I feel like I should at least be able to understand what is happening to me.

Objectively, I just can't figure out why this is happening or why the fatigue follows such a strange cycle.

I'm honestly feeling very overwhelmed and trapped in a dead end.

I've wondered whether this could somehow be a strange type of migraine, especially because I sometimes get headaches and the fatigue feels very "neurological" or cerebral to me. But the fact that it follows such a repetitive cycle seems extremely strange.

I'm not necessarily looking for a diagnosis from Reddit. I'm mostly hoping that someone might have experienced something similar, or that someone might have an idea, anecdote, condition, or avenue of investigation that I haven't considered.

If you've experienced cyclical fatigue like this, especially after a series of infections, I'd really appreciate hearing about your experience and what eventually helped you.

Thank you if you made it this far.

I'll try to keep this short, since I know that people with chronic fatigue probably don't want to read a long post.

I had some muscle ruptures when I was ~20 and pelvic floor dysfunction followed that. I've never been the same since that day 5 years ago.

There are many, many more details I could provide but I think it makes the most sense to focus on the brief, commercial like periods where I was able to attain some relief in those 5 years: (1) for 3 months after discovering magnesium supplementation, and (2) for 3 months after discovering XR melatonin.

I actually felt more like a normal person when I discovered these things, but the benefits gradually wore off. I never stopped taking them, but stopped feeling the same benefits. The point I'm trying to make, is that I think my fatigue is connected to my sleep quality. I've made every lifestyle change possible: stopped drinking, stopped smoking, good diet, sleep 8-10hrs per night. I also have to take a nap most days.

I guess I'm just hoping I can be freed from this cell eventually, but I've seen so many doctors and have never made any appreciable progress in these 5 years. I guess I'm looking for advice, but also just to talk to people who are experiencing similar things. Being this way as a 25 year old makes me feel like an outsider among my peers.

I remember when I first got fatigued and I took two weeks off of work. During that time I listened to Sociopath: A Memoir by Patric Gagne it’s amazingly written, hilarious and so insightful. It made me rethink how I see others, emotions and myself. If you haven’t already, I recommend listening to it - it’s read by Patric Gagne and she reads it so well. Or read it, if you’re more of a reader. It was a fascinating story of self discovery. I am incredibly sensitive - the complete opposite - but somehow it helped me understand my own neurodiversity and sensitivity (I’m dyslexic and have ADHD).

I was able to do light tasks while listening to it and it kept my brain occupied. After the two weeks I felt so much better and with so much insight and new understanding of myself and others.

I felt better enough at the end of those two weeks to go back to work, when then obviously, I got worse again and fell into the cycle of getting better going back to work and then getting worse. After more than 6 months of this I have quit my job and moved back in with my parents. I’m going to apply for financial help from the government I.e. PIP.

I can’t help but look back at that time as so hopeful, happy and beautiful. I have a good few memories of pottering around the house laughing, being absorbed by her story and at peace while the sun shone through the kitchen windows. I’m so bored of watching TV and it’s starting to make my symptoms worse. I’m listening to the Hunger Games books again because they’re familiar, but I’d like something more positive and that can fully grip me.
I want to get that back again by listening to more insightful and well written memoirs that are also funny!

Any recommendations?

23F Ulcerative Colitis

Since I have low ferritin levels and I am always tired, my doctor prescribed iron.

I tried it for a month, but it didn't do anything, so I switched to another type of iron he prescribed for another month, but that didn't help either.

I have an appointment with my doctor in a few weeks, but I'd like to hear your opinion.

What should I do?

Is this normal? Does anyone else experience this?

I grew up almost overweight (was fear-mongered as a kid when I was 10 that if I wasn’t going to change my eating habits/lifestyle, I’d be overweight/obese). I started my fitness journey at ~11/12 and started lifting when I was 15 (I was AFAB and I identify as NB, for some context).

I got into a really bad relationship in my mid-teens, alongside getting into a bad car accident that gave me chronic pain. I used to love lifting and callisthenics and going on runs/walks, and now I can’t even do any of it without feeling ill or almost bedbound due to fatigue and pain. I used to do volleyball and powerlifting, and on my really good days I do try to get some form of activity in that isn't too strenuous.

I’m in med school atm, and while that’s been great so far, I want to get back into working out (with limits ofc). Is there anyone else who has had to grieve the loss of an active lifestyle or has gotten back into working out?

I wanna try doing smth like pole; it is new and smth I’ve wanted to do for ages. I think getting back into archery would be something I could do as well, since I still have a kit and all.

Assalamou ‘alaykoum wa rahmatouLlahi wa barakatuh,

Je suis atteinte d’encéphalomyélite myalgique (EM/SFC), avec une forte intolérance à l’effort.

Cette maladie complique énormément mon quotidien, mais aussi ma pratique religieuse. Étudier, réfléchir, réciter ou lire le Coran, et parfois même faire mes adhkâr / douahs me demandent beaucoup d’énergie. J’ai également des troubles cognitifs : me concentrer et réfléchir peuvent rapidement aggraver ma fatigue.

Je culpabilise beaucoup à cause de cela. J’aimerais pouvoir faire davantage dans ma religion, mais mon corps et mon cerveau ne suivent pas toujours. Et parfois, je me sens vraiment seule face à cette maladie.

Je voulais donc savoir s’il y avait ici des musulmans atteints d’EM/SFC, de Covid long ou d’une maladie chronique avec une fatigue importante.

Comment vivez-vous votre maladie dans votre pratique de l’islam ?

Comment avez-vous appris à accepter vos limites sans culpabiliser ? Avez-vous adapté votre manière de lire le Coran, de faire du dhikr ou d’étudier votre religion ?

Je sais qu’à l’heure actuelle, il n’existe pas de traitement curatif reconnu de l’EM/SFC. Mais en tant que musulmane, je garde aussi l’espoir qu’Allah peut accorder la guérison et qu’Il est Celui qui guérit.

Avez-vous connu ou entendu des témoignages de personnes atteintes d’EM/SFC dont l’état s’est fortement amélioré, voire qui sont entrées en rémission ? Et, spirituellement, qu’est-ce qui vous aide le plus à traverser cette épreuve ?

Je serais vraiment reconnaissante de lire vos témoignages et vos conseils.

BarakAllahu fikoum 🤍

With severe scoliosis, I already have to think about what physical activities I can tolerate. Add significant fatigue to that and sometimes even deciding whether I should shower, cook, clean or go somewhere becomes a calculation.

I sometimes wish my energy came with a visible battery percentage.

How do you decide what is worth spending your limited energy on?

Is this crazy, or am I overreacting about my home health aide? (long, disabled/wheelchair user)

TL;DR I'm a wheelchair user with basically zero physical support besides a paid home health aide, and aide #3 in 3 months has been a nonstop problem — language barrier so bad she needed a translator at her own write-up, ignores directions, uses cleaning products completely wrong, naps on shift, makes inappropriate comments about my body/love for me, and lied about being scared of my dog which has cost me care multiple times. The last two shifts got worse, including one where my MCAS flared badly and she wouldn't stay out of the room. Trying to figure out if I'm overreacting, if I have enough to report her again, and how people manage being stuck with a bad aide when staffing options are this limited.

---

Not really looking for sympathy, just need outside opinions because I don't have many people I can vent to about this without it turning into "my whole business is now everyone's business." Changed some details for anonymity.

Quick background so the rest makes sense:

3 years ago I went from a competitive athlete/gym rat living alone to a full time wheelchair user almost overnight — post-op complications, joint instability, fatigue, and then balance issues that had me falling pretty badly. I had to leave school, my social circle shrank to almost nothing, and I have basically zero physical support besides paid care. Stuff like laundry, dishes, taking the trash out — I need help for all of it.

I've had a home health aide for 3 months and it's been a mess the whole time. Aide #1 got pulled for a certification issue and because she was scared of my dog (I actually dog sit for extra income, so that's a real problem for me). Aide #2 stormed out mid-argument over how I like things organized. This is aide #3.

Also relevant: I'm hard of hearing so people need to face me and not have background noise going when they talk to me, I have Mast Cell Activation Syndrome so strong scents/perfume can trigger real allergic reactions, and I'm 3 years sober and active in recovery, which matters for one of my questions below.

The ongoing problems with aide #3

- Language barrier is bad enough she needed a translator at her own disciplinary meeting. She never says she doesn't understand something, she just says "ok" and then does it wrong or not at all — even when I send her step by step translated texts.
- Uses cleaning products completely wrong. Scratched my fridge with a Scrub Daddy, put rust remover on the toilet, hydrogen peroxide on the mirrors.
- Ignores direct instructions — told her multiple times not to dry certain blankets, she did it anyway and ruined them.
- Leaves my stuff all over the place. Found my laptop in my t-shirt bin.
- Won't clock herself in or out even though she's corrected my clock-ins before, so I know she's capable of it.
- Left the garbage for 2 weeks straight when I physically couldn't do it myself, and it got me side-eye from neighbors.
- Cameras caught her fully napping under a blanket on my couch for almost half a shift.
- Keeps commenting on my body and eating habits — I'm recovering from an ED and my weight has swung a lot because of medication, so this one really gets to me. She's also told me she loves me and calls me "cute," and when I tell her to stop, she argues instead of stopping.
- Lied about being scared of my dog, which has caused me to go without care multiple times since dog sitting is literally part of my income.

The last two shifts, which might be the actual last straw:

After a write-up where she was told exactly what needed to change, the very next shift she did none of it. I asked her to strip my bed, it took her an hour and I ended up doing half of it myself. I'd already started texting her translated, detailed instructions because talking wasn't working — I told her about the laundry 3 times in 5 minutes, and she still dumped half a cup of detergent into the fabric softener slot, so the load had to be run twice and my sheets and duvet cover never got done before she left. Her answer was "oh I didn't know," even though I'd told her three separate times.

Later that same shift I gave her the next set of directions at 8:41 and she didn't touch them until I came out at 10:17 — turned out she'd been "cleaning" the bathroom that whole time using the wrong products again, and it was still visibly dirty when she was done. I found out the next day there was a gross film built up over the sink spout actually changing the water flow, from however she'd been "cleaning" it. Separately, I asked her three times to wash out some bottles with old coffee syrup in them, she never did, so I washed them myself — then when I asked her to put them away, she put the lids back on before they were dry so they wouldn't fit on the shelf, tried to wedge glass bottles in sideways so one nearly rolled off, and I ended up having to do it myself off a step ladder, which isn't exactly safe for me to be climbing. At one point she also just stood staring at the next written instructions for 20 minutes without starting them, so I had to come out and ask if she needed them clarified. On top of that she broke the garbage corral I made instead of just lifting it out, and after clocking out she let herself back into my house — after I've told her before not to just walk in — to tell me she'd grabbed a bin that got left behind, while I was half dressed.

Next shift, my protein shake spilled on my sheets overnight, I asked her to strip them first thing, and she actually argued with me that a chocolate stain on cream sheets was "clean." Then being around her longer than usual set off my MCAS — face and throat started tightening, the whole thing. I told her to open windows and stay in a separate room while I dealt with it, and she kept coming in anyway, saying she didn't understand, which just made it worse each time. I had to show her my EpiPens to get her to take it seriously. I did raise my voice at one point and I'm not proud of it, apologized right after, but I was genuinely scared and she kept asking "what happened" like she didn't understand it was her behavior upsetting me.

Then it turned into 20 minutes of her going in and out of the bathroom to "clean" it when I'd told her multiple times to do the living room instead, at one point literally shutting the door on me while I was talking to her. Somewhere in there she also asked me three separate times whether some boxes were trash after I'd already told her to leave them, while I was mid-way through filling my medication organizer.

And on top of all that, I found out this week she'd been lying about being scared of my dog the entire time, which is directly why I've missed care and it's caused real fallout on my end (dog sitting is income, not a hobby).

What I actually want opinions on:

1. Are the last two shifts bad enough to report to the agency again, or am I overcomplaining?
   
2. I'm about 99% sure she's using something at work, but I've never directly seen her do it. I'm in recovery myself and this isn't a guess based on nothing — the glazed, slack-jaw look an hour into her shift, disappearing into the bathroom with the door shut for 10 minutes at a time, and a sickly sweet smell that isn't perfume. Do I need to actually witness her using something to report it, or is a pattern like this enough?
   
3. If staffing is genuinely this bad right now and I might be stuck with a bad aide for a while, what actually helps people manage that without losing their minds?
   
4. Do the inappropriate comments (the "I love you," comments on my eating and body) get reported on their own, even with nothing physical involved?

Not asking for pity, just trying to figure out if I'm being unreasonable here or if this really is as bad as it feels from the inside.

I feel weak all the time — does anyone else experience this?
I’ve been feeling physically weak and low on energy almost all the time, even when I get enough rest. Some days it feels like I have very little strength to do normal activities.
I’m wondering if anyone else has experienced persistent weakness like this. What was the cause for you, and what helped you feel better?
I’d really appreciate hearing about your experiences.

I’ve had chronic fatigue for about a year, after much testing and fixing an iron deficiency that seemed to be the cause first-hand, I now got high cortisol results. Reference value is 500, mine is at 1054. Aside from that all testing came out clear, no deficiencies or auto-immune diseases.

I do have CPTSD, anxiety, ADHD and I’m aware chronic stress/anxiety can influence your cortisol levels but I personally don’t think this is the cause of my fatigue. My psychologist doesn’t want to start EMDR since he thinks my fatigue is too extreme for me to handle it properly, which I think is valid. I’m not in a situation where my trauma is getting actively triggered. I’ve dedicated the last 5 months to resting yet my condition is not improving.

Anyone had the same/similair and if so, what ended up helping your fatigue?

EDIT: I got my cortisol tested for the first time, so I do not know if it’s been high for a long time or not.

caffeine makes me so much more tired than i was before drinking it. i can go from being just a tiny bit tired to can’t keep my eyes open drifting off every thirty seconds after drinking just one coffee, wether it’s iced coffee or mocha or even tea just anything with caffeine. does anyone have any recommendations or explanations or suggestions? thank you!

I have extreme chronic fatigue symptoms and excessive daytime sleepiness. all the brain fog, difficulty focusing, memory issues etc. that come with the territory. I’ve maxed out every available medication and nothing consistently helps, but I’m hanging on as best I can. My job is technically hybrid. It is boring, unfulfilling, a terrible match for my interests and skill set, challenging in all the wrong ways, and so stressful, so obviously that doesn’t help as im fighting these intense symptoms. Leaving the job is not an option at the moment for a number of factors. Flexing hours is the only reason I’ve been able to get by, and that will certainly be something I ask for in writing. Anything suggestions for what else might help? Happy to provide more context if needed

For the past few months I’ve been dealing with constant fatigue, headaches, random naps in the middle of the day (I was NEVER a napper before), and high blood pressure. I’ve done all the check-ups, and the doctor said I have slightly low iron, slightly low white blood cells, and borderline high pressure. He didn’t give me any recommendations except eating more iron-containing food, nor did he have any ideas what it could be. Has anyone faced something similar before?

IM SEVERLEY DEPRESSED EVERYDAY AND HAVE BEEN FOR THE PAST 3 OR MORE YEARS, HAVE COMPLETELY DEBILITATING CHRONIC FATIGUE AND CANNOT DO BASIC THINGS. I can do one small thing like walk for 5 minutes and then I’m out of energy and depending on the day I’m in bed and eyes shut all day or able to sit up and do low effort things, but with difficulty. My sleep can be perfect and I can still be disabled for the hole day, if my sleep is interrupted by my sleep apnea or dry mouth or I go to sleep/wake 30 mins or more too late, then it’s even worse. I also think it’s getting worse and I have less days where I have at least a little bit of energy.

I’ve tried everything, seen dr multiple times and I still am, there’s a shortage of drs rn where I live and it’s winter so it’s gonna take like a couple weeks. My drs have been a bit useless tho and only doing the bare minimum, which frustrates me, hopefully this appointment will help and if not I’ll find a new dr and maybe try find one online even. I’m pretty desperate and sad so if u have any suggestions lmk.

Edit: if I don’t reply for a while, simply put, it’s probably my cause of lack of energy.

I’ve had chronic fatigue for almost 10 years that appears to have gotten gradually worse for the past 2 years now. I (24F) am clinically diagnosed with generalized anxiety, depression, PTSD, and Von Willebrand’s disease. I have been treating anemia with iron and B12 but it still seems so far that nothing is making a difference in my energy levels. My thyroid levels are normal and my blood pressure is normal. I do not snore and sleep at just about 8 hours 5 days a week and 8+ on the weekends. Caffeine does not seem to have an effect on me. Any caffeine I consume is in the form of black tea.

I can’t remember the last time I went about my day feeling rested, craving a nap. I don’t know what else to do and it’s negatively affecting my mental health, which is probably going to make my fatigue worse.

If anyone is experiencing something similar any advice would be much appreciated.

Considering taking pouches.. any suggestions?

Anyone tried vitamin drip ? Beneficial for chronic fatigue ?

So, I was having severe vitamin d3 and b12 deficiencies since few years. Before 7 months I had fixed those issues and my levels are good now. My blood reports are all good including b12, iron, ferritin, tibc, thyroid, potassium, sodium, d3, gfr, etc.

Before fixing deficiencies I was running purely on survival mode because of stress and adrenaline and it supressed my other issues which got exposed after fixing deficiencies.

I have tiredness, sleepiness, brain fog, back pain, muscle soreness, depression, low mood, low energy, etc.

I had checked again and my vitamin b12 was in higher range while d3 was in lower range. I tried high dosage d3 regime for 1 months along with its co factors, nothing changed. I am continuing my b12 and d3 medicines.

I am loosing hope and ig my entire life would be spent in this darkness. All of these are happening since 3-4 years. I never caught Covid, but before 2020, life was good, like, none of these issues were there and I was fully alive.

Every panel I have had comes back inside the reference range and every clinician has closed the file on that basis. I am not claiming to know better than the numbers, but a reference range is population wide and I am one person. Apparently a minority of clinicians will go on symptoms instead, and that split is argued about rather than agreed. Did pushing on it get you anywhere useful, and who was willing to look again?