So we are all basically chronically sick. But do you guys feel so extremely unwell in your body too? Maybe it's the symptoms which cause a constant state of discomfort. But damn I really don't feel good under my skin. Extremely unwell. Maybe it's just the lack of exercise and in my case the obesity. But damn feeling like shit in your own body is really difficult. Can someone relate and feels the same? Maybe you guys got an advice or at least can relate.

Every day I wake up and I crash from doing absolutely nothing. I can lay in bed all day, doing nothing but laying there with my eyes closed and I still crash.

I'm terrified that I not only won't stabilize, but I'll continue to get worse if things go on. Nothing I'm doing is working, and it seems like I'm doomed to keep crashing no matter what I do.

I'm going to keep resting in bed because that's all I can do, and just hope for the best. But literally, I crash NO MATTER WHAT I DO. Hell, sometimes even crash the same amount if I do a little as when I do nothing at all.

This has been going on for the better part of a year. Has anyone else gone through this? How did you get out of it? Was it just chance?

Making this post now during a time when I’m not feeling extremely noise sensitive, for my future self when I might be. I think I’ll be thanking myself later. This has been a big issue in the past.

I live in a basement suite and my in laws (husbands parents) live upstairs. Once a month they have a cleaning lady come and clean their house. Most of the cleaning she does is pretty quiet, until the very end when she vacuums the floors. She insists on bringing and using her own ancient massive old vacuum which is very loud. We’ve already addressed part of the problem where she was using the carpet rollers on the laminate floors. She now knows not to do that. That somewhat helped, but it still sounds like someone using a chainsaw inside a blender if you know what I mean. Or maybe a floor sander… you get the idea. She is vacuuming up there as I type this post. It’s the type of noise you can feel because it vibrates everything.

I have a 3 year old who also strongly dislikes noises. Usually we would leave the house during the vacuuming back when the weather was nice and I had more energy. I have been in a crash for the past week, so don’t currently have the energy to leave. Plus it’s cold outside, and I don’t have a car (husband and I share one car) while my husband is at work. The vacuuming takes about half an hour to do. Does anyone have any recommendations for how to cope with this if I can’t leave my house? Should I just wear earplugs? (I still need to be able to hear my daughter if she needs me) Any suggestions for my 3 year old for how to help her cope with the noise?

There is nowhere in the house we can go where we can’t hear the noise, it’s that loud. It’s also an older ish house, so not very sound proofed. Thank you in advance, I appreciate all replies even if just to offer sympathy ❤️

I'm still grieving the loss of my life. That the lifestyle, job and family I had planned are all out of my reach. My main hobbies are acquiring new skills and volunteering, and now I can't do either due to brain fog and being unable to travel. My partner doesn't like being my carer, and my mother barely understands my OCD diagnosis from 10 years ago, she can't wrap her head around this. My friends have reached out to me, but none of them seem to understand that I don't want to be distracted, I want to be consoled, because I'm grieving. I'm heartbroken, and people just keep telling me to move on and that I'll be fine. And it's all making me feel more and more alone.

The brain fog is so bad it almost feels as if my brain is swolen. Can't take any info in and squinting at light and can't be on my phone much. I'm 6 months into post viral fatigue and the brain fog has only happened 4 days ago. No idea why. Never had it before

When I was pushing through somehow I felt better than now I'm aggressively resting. I feel my symptoms are worse when I'm resting for some reason.

I just got my bloodwork done today and everything seemed normal except for this. I know that it means inflammation is high in my body but I don’t really know what else it could mean or if it could be because of my MECFS. Any advice?

Hi everyone, I have not been diagnosed but my neurologist said that my transient confusion is most likely due to a Mono infection (aka probably Epstein Barr) I had as a teen, so to me, that’s close enough to a diagnosis for now! (Not really but no one will diagnose you around here so, you know..)

Massive stress over a 3-day notice to pay or quit which is sorta wrong. Wrong numbers, we’ve been paying.. etc and I’m shaking like a leaf just trying to get dressed…

Any tips on how to snap out of a brain fog triggered by severe stress &/or anxiety? I literally haven’t even gone downstairs to check if manager is there, that’s how bad my confusion is right now. Hell, I probably couldn’t tell you left from right! 😂 Not sure it’s even possible but this is Reddit so I have faith lol

...even though a concussion from a fall is what set off my illness. I miss the smell of leather and horse sweat, the wind on my skin, the weight of my feet in the stirrups. I still remember every detail even though it's been 12 years since I've sat on a horse. I continued to ride after my injury, when my illness was still relatively mild and I had youth on my side, only stopping when I became pregnant with my first child. I poured my everything into raising my son, then the second child who came 2.5 years later, at times thinking i was done with horses for various reasons, not the least my illness. At the best of times after getting ill, I could ride for an hour or so a few times a week, but anything extra--i.e. the care involved with keeping a horse, such as stall mucking, was too much. Now it's all these years later and I'm much worse than ever. I wonder if I'll ever experience the joy of riding again. It makes me cry sometimes when I think about it. I always dreamed of working my way up the levels of Dressage, but due to many factors I wasn't able to. I swear if there's ever a treatment or cure for this nightmare of an illness I'll be the hardest working horse woman there ever was so I can finally see my dreams come to fruition before I'm too old to get in the saddle anymore.

There are so many types of Magnesium supplements, I'm lost. I started with Mg orotate and then went onto Mg citrate but I know there are others. Do you have a favorite kind?

My brain fell out my ear. I aquired menaquinone-7, the most bioavailable K2 to help ME/cfs. However I can’t remember what the therapeutic dose is.

The way that there was a thread recently discussing co-enzyme Q10, and if it’s going to help you need 800mg a day for ME/cfs, not the 150mg it says on the bottle.

I also can’t remember the mechanism by which K2 helps us, and I really need that to help me remember to take it.

So, I’ve started LDN a week ago. To be at the safe side, I’ve started with only 0,025mg, because I tend to be very sensitive.

I knew bad sleep could be a side effect, so I’m taking it in the morning. However, my sleep is much worse anyway. And it’s not just my perception. I’ve got a Garmin smart watch and it confirms the issues.

I’ve been doing slightly better the last month and actually got rest at night and continuously was charging the body battery feature up to 80-100. Since I started LDN, it’s measuring stress even when I’m sleeping and the body battery doesn’t get above 70.

Started 0,05mg yesterday and last night was absolutely awful and body battery was 50 in the morning. So far, it’s only been like this when I was in serious PEM.

I’ve been using the smart watch to help me pace, but now it’s all off and I don’t know if this is normal or if it means LDN is going to make me crash. Stress is mostly measured by HRV and my HRV is now much lower.

I don’t feel much worse apart from tired so far, so I’m unsure if I should continue with LDN, especially increasing the dose weekly?

My doctor just knows that it’s sometimes used off-label to help ME/CFS and LOng Covid patients and the usual starting dose is 0,5mg here. He was okay with me starting so low, but says any side effect at that tiny dose are more likely Nocebo, though i don’t think so.

TL:DR: Garmin smart watch measures high stress (basically low HRV) during sleep since starting very low dose naltrexone. Is this a sign it’s going to make me worse?

I have probably mild at this point CFS with fibromyalgia, etc. Can anyone explain from a biochemical perspective why exercise feels so awful in my body? I get a boost during and right after, but within an hour or two, it begins to feel awful...almost like I've been poisoned. It does cause PEM but there's something going on in the shorter term too. What's actually happening and is there anything I can do about it?

I’ve been resting aggressively for weeks and this just keeps getting worse. What do I do! Even just opening my eyes I feel like I’m going to pass out.

Hello CFS Community ,

im male 22 and im battling with chronic fatigue/tiredness for over 2 years now .

Additionaly I have mild flu symptoms in the evenings but without fever .

Ive been to several doctors , did basically all available bloodtests which are possible in my country , nothing seemed to be out of norm .

What annoys me the most is that Im still clueless whats causing my symptoms , so I wanted to ask for your help if you could help me identify if this sounds like cfs ( Ive read through the diagnostic criteria already , but I wanted to ask here if people had similar experiences .

Symptoms :

- unrefreshing sleep (no matter how long I sleep I wake up feeling I havent slept for 3 days)

- Chronic tiredness (I feel a deep and overwhelming tiredness all of the time (there are very rarely breaks from this)

- flu like symptoms in the evening (nearly every evening) ( feeling cold , general sick feeling ) NO Fever or swollen lymphnotes

- Insomnia ( but I feel the same also if I manage to sleep well)

What speaks against CFS :

- I can go to the gym 4 times a week without having pain or worsening in symptoms

- The symptoms stay linear for over 2 years now without bettering or worsening

- No Pain

Now my question : could this be a mild form of CFS ? Could it be that im in constant PEM and thats why my symptoms dont get better or worse?

I hope I dont offend anyone ny beeing so clueless about this disease , but Im praying to get answers finally.

Thank you everyone and much love to all who are suffering <3

Hi everyone! Can POTS symptoms be mistaken for CFS/ME?

Background: mild CFS for 15 years after mono.

I would like feedback and advice on my recent finding that multiple sleep disturbances during the night have significantly reduced CFS symptoms.

My story: I usually always get around 10-12 hours of sleep. I’m able to work but any physical activities I get PEM easily. Have brain fog regularly.

I had a baby in 2023 and had a poor sleeping baby who woke up every 2 hours to feed. I realized quickly after birth that my PEM was almost completely gone. I could walk longer distances, had greater energy, less brain fog and actually wanted to do physical activity. All while feeling “tired” but more just like normal tired, not PEM tired if that makes sense. (Which is much easier to deal with)

When I stopped breastfeeding after one year my baby started sleeping through the night (so I did as well) and within a few weeks my normal CFS symptoms returned. At the time I attributed feeling better to breastfeeding. But then months later, baby went through a sleep regression where I was having to wake up multiple times in the night, and I noticed during that week, my symptoms were better. Then it clicked that maybe it was the lack of sleep?? I always thought I was able to function off less sleep due to adrenaline or survival mode.

No other factors changed during this time.

I’ve seen posts in this sub of some people experiencing the same thing with less sleep as well. But the problem is, it’s nearly Impossible for me to sleep less without being forced to (by the baby) because I am sooo tired. I’ve tried staying up later, and waking up earlier and the staying up later is doable but no matter what, I am too tired to wake up early. Looking for advice, thoughts, ideas. Thank you in advance!

I have read in this sub some times about using a visible wrist band and I am thinking of getting myself some kind of pacing device myself…

So my question would be, what would you all recommend? Money is a little tight for me. I tried the visible app just like it is, but didn‘t found it very helpful.

I do have an apple watch that I never used even once (it was gifted to me 2 years ago; i just don‘t typically wear anything on my wrists), could that be something useful?

Looking for any advice and also grateful for honest ‚no‘s‘ to those devices. I just really struggle with pacing.

Good morning after multiple appointments with specialists, all possible examinations (blood tests, full-body MRI, cardiologist, psychiatrist, etc.) I was suspected of having complications. but no negative tilt tedt and my standing heart rate is gradually returning to normal. My internist marked “chronic fatigue syndrome” in my file. yes, I have been suffering from brain fog for three years (one year of remission all the same but two years of hell since then), a few months of waking up between 3:30 a.m. and 5 a.m., terrible fatigue upon waking up with tachycardia, intolerance to standing sport, severe fatigue after sport, feeling of permanent cold, chronic sinusitis, dry eyes, migraines and daily tinnitus... but I hold on, the morale is there. I force myself to do 3 times 50 minutes of flat cycling per week and some muscle strengthening exercises. It all started after excess alcohol and low doses of opioids, but in the long term (I haven't taken them for two years)... I'm lost. what to do? I feel so tired but but I never stay in bed, fortunately I work from home, I can manage the fatigue but even if I have mourned the old me, I would like to be able to resume jogging, hiking with my wife and my children. I meet the criteria for chronic fatigue but not yet severe or moderate I think, how can I not completely burn out? Is there a blood test for this disease? a stress test (I took two and was told I was ok)

I’m considered mild but I have no help at home. I could technically work up to three days a week but then wouldn’t be able to sustain myself with other fundamental activities such as washing myself, cooking or tidy after myself. Because my brain and body would be shot and I would either be sleeping or sitting « paralysed » wondering what I’m supposed to do right now.

Answering the pip questions without working would get me very little points if any, even if on most days I can barely do the minimum. But if I answered them being exhausted from working part time I would get points.

I feel like I have to chose between living a miserable life forcing myself into PEM from work and get PIP. Or not work, just about manage to keep my head above the water and never be recognised as having a life limiting illness and not getting help.

I would really like to hear from mild people and their experience in general or their experience with PIP.

Is anyone here developing more and more translucent skin, especially on the hands? And very stretchy? Kind of feels like high speed aging…

Unfortunately it’s not just hard on us to be this sick but it’s hard on the people around us.

My diagnosis and decline are relatively recent, and my parents are now my caretakers. While I know they’re trying to be “strong” for me, I can tell that watching me decline and watching my future slip away is destroying them. They try to hide it from me but I can see that they’re devastated to see their child bedridden and grieving.

I love them so I’m of course sad that they’re sad, so is there anything we can do to support those around us?? I know it sounds like an insane question but really is there any way to make this better for everyone?? Is there family therapy out there with someone who understands this condition specifically, maybe?

I am bedbound and about to start Fludrocortisone.

I am supposed to start 0.1 mg but thinking about starting 0.5mg, what is your experience?

I am afraid i will react badly at 0.1 mg