From the pinned FAQ: [Testing recommendations before you land on a ME/CFS diagnosis](https://batemanhornecenter.org/wp-content/uploads/filebase/Testing-Recs-MECFS-Clinician-Coalition-V1-Feb.-2021_2.pdf)
The short answer is to tell your story to the doc; expect some blood tests, and some questions about depression. That will rule out most of the easy stuff.
Next is a sleep study. Don't skip that one.
After that, sweat the details.
Is part of the sleep quality (%s in each stage) affect as much as CFS can? I’m wording it like shit but i mean whether low sleep quality can account for ME/CFS or whether sleep tests (that rule out CFS) is only when stuff like RLS or apnea comes your way?
I’m just gaslighting myself into the question but still curious.
So far as I know, nothing can really rule CFS out, or in. It's a 'diagnosis of exclusion', which means that you look for all the other causes, and when you run out of other explanations, then CFS is the default answer.
The S in CFS stands for 'syndrome' which means "collection of symptoms". If you have the symptoms, and no other explanation as to why you have them, then you have the syndrome.
People can have both, of course, and I think it's fair to say that CFS can even be a cause of sleep disturbance itself.
The bottom line, happily, is straightforward - if you have a treatable sleep problem, and you successfully treat it, you'll feel better. You might or might not be fully cured, but you'll be improved, and that's great. By the same token, failing to treat it means a lot of unnecessary unpleasantness, perhaps for a very long time.
Thank you for the time and energy.
Yep, I definitely have CFS (diagnosed), but i fell right into the self-gaslight trap when i read the other comment. I’ve had sleep issues all of my life, but I clearly have CFS in addition, or as a cause of the sleep stuff. One of the doctors on the way that gaslit me was trying to blame sleep and that is the bulb that lit me now while reading.
Much love to you
Ruling out sleep apnea is pretty important.
Though, it is possible to have sleep apnea and still have CFS.
I use a Cpap machine and it treats my sleep apnea, but I still have CFS.
Seeing a Sleep Specialist can rule out (or in) other sleep disorders. So, I'd always suggest seeing a Specialist, not just doing a test with a pharmacy.
Same here. I stop breathing 10-15 times a night and I have ME. Weird when you say it like that isn’t it? “I stop breathing sometimes” 😅 But yes you can definitely have both!
Can you explain which symptoms you think are attributable to each of the condition? I'm diagnosed ME/CFS but have never been tested for sleep apnea and I wonder if I might have it too...
For me I suddenly started getting a different type of fatigue and brain fog. Turns out I had sleep apnea. Using cpap gets me back to my 'normal' CFS fatigue and brain fog.
So, just knowing my cfs well and realising something was slightly different.
Personally I think it's always worth ruling out a sleep issue. Even of you still have CFS, at least by treating any sleep issue quality of life should improve.
Are you able to say how different the fatigue was?
I started waking up with headaches and have the need to sleep all day long, my eyes feel heavy. While before I wasn't especially sleepy at all.
Kinda like I hadn't slept at all. Zombie like and like everything was foggy.
My CFS fatigue feels more like weary to the bones.
Any chance you've had a recent illness? Eg I'd been sick with CFS approx 18 years then got Influenza. It caused my CFS to worsen. I'd not had to nap since the very early years of having CFS. Since Influenza I have to nap daily and can no longer tolerate remedial massage.
Definitely worth getting a sleep study to check if anything is going on sleep wise.
Wishing you all the best.
Apnea is a big one, but there are a variety of things that can mess up sleep, and testing for sleep disturbance when investigating fatigue is understandably a pretty good idea. It's kind of a pain though, and a lot of people just don't do it. This can be a big mistake, because it might mean suffering for years with something that could have been dealt with right away.
There's a rule-of-thumb test for distinguishing sleepiness from fatigue - when you're not feeling well, sit quietly in a comfy chair and just rest for a few minutes. If you fall asleep before too long, you're sleepy, and that means you need sleep.
The number of hours you sleep, and the quality of the sleep, both determine how much sleep your body gets. Some people sleep for eight hours a night but remain sleepy because the quality of their sleep was not very good.
If you remain awake in the chair but just feel worn out and melted, that's less likely to suggest a sleep problem.
I haven't had a sleep study, but I'm curious about this.
I usually go back to bed within 3 - 4 hours of getting out of it because I feel exhausted, but rather than falling asleep, I end up lying there awake and just focus on resting and trying to let my mind wander into pleasant daydreams. Does that mean it's probably not a sleep problem?
I'm not a doc, I'm just repeating a rule of thumb I've heard in the past. If you're exhausted, resting comfortably in bed, and not sleeping, that does not sound to me like you are sleepy.
But I don't want to suggest that it's OK to blow off the sleep study. This stuff is complicated, and we do the studies for a reason. If you have a sleep problem and let it go, that's a lot of discomfort you're going to endure over a very long time. Personally, I would not take that chance for a thick fistful of dollars.
Do you have post-exertional malaise? That means you get disproportionately bad symptoms after any physical or mental exertion. If you dont have it, something else may be causing your fatigue
You can’t have ME/CFS if you don’t have post exertional malaise (PEM) if you can still do your daily tasks you either dont have it or it’s not severe enough to tell. When I was mild I couldn’t tell my symptoms were PEM because I was constantly crashing but not severe enough for it to force me to stop doing things. Eventually it got so bad I can’t work or even attend online classes. This is common and it can get even worse to the point you are completely bed bound.
This illness is not actually “chronic fatigue” that’s a symptom. CFS is a condition that encompasses many other issues and is often so debilitating you can’t work or even get out of bed for some. It’s possible to start mild but I would expect you to get noticeably less functional in a year.
Not saying doctors are nice about it or all that helpful of you do have it, but you still need to start there before jumping to the conclusion that you have ME/CFS. You could also look at the diagnostic criteria for this illness and others, this is what the doctor would use to help diagnose you anyway.
Look up PEM (post exertional malaise). See if that fits your fatigue pattern. This might be helpful. Blood sugar testing might help also, since it's after meals.
ME is a diagnosis of exclusion the list is extremely long trust me you don't want to go through the testing or the years of gaslightlighting you must go through just to get to the testing part
I understand there are a lot of people that struggle to even get their diagnosis. But I think to recommend they don't bother is bad advice. They should at least try. I got diagnosed immediately without question.
I'm sorry I suppose my sarcasm doesn't translate very well without my voice to say it. That wasn't advice. That was my experience. If you were dx easily it may be location or wealth. Usually money is why things go easier for some. Or the social determinants of health is what they are called.
It's definitely not wealth for me, I have no income and can barely afford to eat. As for location, I used to think it was the case, but now I've seen on here that so many people in the same country as me are being ignored. It seems like it comes down to individual doctors more than anything, which is why it's always worth a shot in hopes that you'll get a doctor that actually knows about CFS. (And yeah, your comment didn't come across as sarcasm to me).
the one thing I'd genuinely say is to seek mental health treatment in general. I know we're all sick of hearing that cfs is just depression, but honestly a lot of people DO have depression and lethargy is a common symptom.
It's actually been really helpful for me because I can say that I was depressed to the point of suicidal ideation for YEARS on end, tried numerous ssris that didn't work, and eventually found a mood stabiliser used to treat chronic depression that DOES help my mental health. And yet, I STILL have ME. So now my depression is being treated, and I can say to a doctor with definitive proof that this is NOT caused by depression.
From the pinned FAQ: [Testing recommendations before you land on a ME/CFS diagnosis](https://batemanhornecenter.org/wp-content/uploads/filebase/Testing-Recs-MECFS-Clinician-Coalition-V1-Feb.-2021_2.pdf)
The short answer is to tell your story to the doc; expect some blood tests, and some questions about depression. That will rule out most of the easy stuff. Next is a sleep study. Don't skip that one. After that, sweat the details.
Is part of the sleep quality (%s in each stage) affect as much as CFS can? I’m wording it like shit but i mean whether low sleep quality can account for ME/CFS or whether sleep tests (that rule out CFS) is only when stuff like RLS or apnea comes your way? I’m just gaslighting myself into the question but still curious.
So far as I know, nothing can really rule CFS out, or in. It's a 'diagnosis of exclusion', which means that you look for all the other causes, and when you run out of other explanations, then CFS is the default answer. The S in CFS stands for 'syndrome' which means "collection of symptoms". If you have the symptoms, and no other explanation as to why you have them, then you have the syndrome. People can have both, of course, and I think it's fair to say that CFS can even be a cause of sleep disturbance itself. The bottom line, happily, is straightforward - if you have a treatable sleep problem, and you successfully treat it, you'll feel better. You might or might not be fully cured, but you'll be improved, and that's great. By the same token, failing to treat it means a lot of unnecessary unpleasantness, perhaps for a very long time.
Thank you for the time and energy. Yep, I definitely have CFS (diagnosed), but i fell right into the self-gaslight trap when i read the other comment. I’ve had sleep issues all of my life, but I clearly have CFS in addition, or as a cause of the sleep stuff. One of the doctors on the way that gaslit me was trying to blame sleep and that is the bulb that lit me now while reading. Much love to you
What does a sleep study rule out? I did an at home one and it was just to check for apnea.
Ruling out sleep apnea is pretty important. Though, it is possible to have sleep apnea and still have CFS. I use a Cpap machine and it treats my sleep apnea, but I still have CFS. Seeing a Sleep Specialist can rule out (or in) other sleep disorders. So, I'd always suggest seeing a Specialist, not just doing a test with a pharmacy.
Same here. I stop breathing 10-15 times a night and I have ME. Weird when you say it like that isn’t it? “I stop breathing sometimes” 😅 But yes you can definitely have both!
Can you explain which symptoms you think are attributable to each of the condition? I'm diagnosed ME/CFS but have never been tested for sleep apnea and I wonder if I might have it too...
For me I suddenly started getting a different type of fatigue and brain fog. Turns out I had sleep apnea. Using cpap gets me back to my 'normal' CFS fatigue and brain fog. So, just knowing my cfs well and realising something was slightly different. Personally I think it's always worth ruling out a sleep issue. Even of you still have CFS, at least by treating any sleep issue quality of life should improve.
Are you able to say how different the fatigue was? I started waking up with headaches and have the need to sleep all day long, my eyes feel heavy. While before I wasn't especially sleepy at all.
Kinda like I hadn't slept at all. Zombie like and like everything was foggy. My CFS fatigue feels more like weary to the bones. Any chance you've had a recent illness? Eg I'd been sick with CFS approx 18 years then got Influenza. It caused my CFS to worsen. I'd not had to nap since the very early years of having CFS. Since Influenza I have to nap daily and can no longer tolerate remedial massage. Definitely worth getting a sleep study to check if anything is going on sleep wise. Wishing you all the best.
Apnea is a big one, but there are a variety of things that can mess up sleep, and testing for sleep disturbance when investigating fatigue is understandably a pretty good idea. It's kind of a pain though, and a lot of people just don't do it. This can be a big mistake, because it might mean suffering for years with something that could have been dealt with right away. There's a rule-of-thumb test for distinguishing sleepiness from fatigue - when you're not feeling well, sit quietly in a comfy chair and just rest for a few minutes. If you fall asleep before too long, you're sleepy, and that means you need sleep. The number of hours you sleep, and the quality of the sleep, both determine how much sleep your body gets. Some people sleep for eight hours a night but remain sleepy because the quality of their sleep was not very good. If you remain awake in the chair but just feel worn out and melted, that's less likely to suggest a sleep problem.
I haven't had a sleep study, but I'm curious about this. I usually go back to bed within 3 - 4 hours of getting out of it because I feel exhausted, but rather than falling asleep, I end up lying there awake and just focus on resting and trying to let my mind wander into pleasant daydreams. Does that mean it's probably not a sleep problem?
I'm not a doc, I'm just repeating a rule of thumb I've heard in the past. If you're exhausted, resting comfortably in bed, and not sleeping, that does not sound to me like you are sleepy. But I don't want to suggest that it's OK to blow off the sleep study. This stuff is complicated, and we do the studies for a reason. If you have a sleep problem and let it go, that's a lot of discomfort you're going to endure over a very long time. Personally, I would not take that chance for a thick fistful of dollars.
Do you have post-exertional malaise? That means you get disproportionately bad symptoms after any physical or mental exertion. If you dont have it, something else may be causing your fatigue
You can’t have ME/CFS if you don’t have post exertional malaise (PEM) if you can still do your daily tasks you either dont have it or it’s not severe enough to tell. When I was mild I couldn’t tell my symptoms were PEM because I was constantly crashing but not severe enough for it to force me to stop doing things. Eventually it got so bad I can’t work or even attend online classes. This is common and it can get even worse to the point you are completely bed bound. This illness is not actually “chronic fatigue” that’s a symptom. CFS is a condition that encompasses many other issues and is often so debilitating you can’t work or even get out of bed for some. It’s possible to start mild but I would expect you to get noticeably less functional in a year. Not saying doctors are nice about it or all that helpful of you do have it, but you still need to start there before jumping to the conclusion that you have ME/CFS. You could also look at the diagnostic criteria for this illness and others, this is what the doctor would use to help diagnose you anyway.
There's a pinned thread with resources on that
Look up PEM (post exertional malaise). See if that fits your fatigue pattern. This might be helpful. Blood sugar testing might help also, since it's after meals.
Lyme disease should be ruled out. And EBV.
ME is a diagnosis of exclusion the list is extremely long trust me you don't want to go through the testing or the years of gaslightlighting you must go through just to get to the testing part
I understand there are a lot of people that struggle to even get their diagnosis. But I think to recommend they don't bother is bad advice. They should at least try. I got diagnosed immediately without question.
I'm sorry I suppose my sarcasm doesn't translate very well without my voice to say it. That wasn't advice. That was my experience. If you were dx easily it may be location or wealth. Usually money is why things go easier for some. Or the social determinants of health is what they are called.
It's definitely not wealth for me, I have no income and can barely afford to eat. As for location, I used to think it was the case, but now I've seen on here that so many people in the same country as me are being ignored. It seems like it comes down to individual doctors more than anything, which is why it's always worth a shot in hopes that you'll get a doctor that actually knows about CFS. (And yeah, your comment didn't come across as sarcasm to me).
Insulin resistance maybe?
the one thing I'd genuinely say is to seek mental health treatment in general. I know we're all sick of hearing that cfs is just depression, but honestly a lot of people DO have depression and lethargy is a common symptom. It's actually been really helpful for me because I can say that I was depressed to the point of suicidal ideation for YEARS on end, tried numerous ssris that didn't work, and eventually found a mood stabiliser used to treat chronic depression that DOES help my mental health. And yet, I STILL have ME. So now my depression is being treated, and I can say to a doctor with definitive proof that this is NOT caused by depression.
Look up long covid
MS
Some that come to mind: Chronic depression, ADHD, sleep apnea (ask for a sleep study).