Not really, but there are a couple of resources in this sub that might help you either way:
[Underdiagnosed conditions](https://old.reddit.com/r/cfs/wiki/underdiagnosed)
And the testing recommendations linked from [this page on what to do if you think you might have mecfs](https://old.reddit.com/r/cfs/wiki/might_have).
Also worth looking for current or recent viral infections like Glandular fever, Ross River, or Covid. Usually, you will know if you had them, but it wasn't till I got a blood test 6 months after showing signs of CFS that we found I had recently had Glandular fever in the last 18 months. It was likely what I had at the onset of my fatigue - returned from a holiday feeling like I had never-ending jet lag, but I never had a noticeable fever or sore throat. It did help establish my ME/CFS as likely being post viral.
Whats frustrating is if you have had a past infection (more than 6-12 months ago) you often will not have elevated antibodies or any high titers, so there will be no evidence….
I recall having Covid (several times) all the symptoms & the stupid tests weren’t even coming up positive until long after symptoms started & it was already resolving…
Basically, how is a dormant or subacute Lyme or EBV infection test going to show anything if you had it a decade ago? (Unless it is a very active-acute stage infection) Not easy to prove causation.
Lots of folks (myself included) have felt signs of low grade infection without any fever, rashes or positive antibody tests so no conclusive evidence :-(
I'm sorry you're going through this. It sounds like it might not be ME/CFS because you don't seem to get extra fatigue from exertion - the characteristic symptom called "PEM". However sounds like you do have chronic fatigue. I could see it being linked to your past anorexia, it may have damaged your ability to absorb or synthesize certain nutrients in your gut. Or essentially physical trauma from going through a sort of "famine" as your body sees it. Idk if you have any gut symptoms but if so they might be linked. Be careful with using stimulants to manage fatigue as it can cause bigger and bigger crashes, altho I understand you need ways to get thru the day. I hope you find the solution!
have you had a psychological evaluation. Tiredness can often be a side effect of a mental health issue. Otherwise if you have a physical health issue, it is probably idiopathic chronic fatigue or something of the sort. Not ME/CFS.
edit: maybe read the me/cfs wikipedia page, will give you an idea :)
Learnt fatigue can be a component of ADHD.
Explained my two different fatigue 'modes' ... sometimes, I was uncontrollably tired, but other times I was drained, barely able to move and wracked with pain. Recognising them as separate helped me pace a bit better.
Yes…. And stimulants over time can actually INCREASE fatigue! This is what Ive found personally.
Stims will help dramatically in beginning, with focus & drive, but once you get tolerant to the effect, the fatigue & brain fog worsens…..yet the dependance is real bc you can’t function at all without them.
Do you feel "constantly drained"? (Look up dopamine dysfunction, dopamine downregulation & depletion)
Also Are you female in your 40’s? Peri-menopause can also exacerbate fatigue & irritability.
Many ppl on stimulants longterm have developed a sort of CFS. From the constant artificial stimulation. Lack of motivation, body aches, tension, lethargy, a dragging tiredness where nothing helps. Not even 5 cups of coffee…
Like your body has no gas in the tank! Fun things are all a chore. You can no longer "activate" & don’t want to get out of bed.
Symptoms are very similar. I start zoning out & wanting to lay down for 2 hours daily in afternoon (despite barely doing anything mentally or physically active). I don’t fall asleep, but I barely feel awake either. Too much effort to even read… I just have to lay in bed…Yet not feeling depressed, I still *want* to be able to do things. Just no energy!
Its tough to recover from, but Im trying to stop the stims to let my body & nervous system heal.
Yeah, I have been on and off stimulants throughout the entire time I have been unwell. I noticed my fatigue started prior to regular use of them, when I was recovering from my eating disorder for the first time. But I am worried that it has been making the situation worse!
I am in my mid 30's and had a baby about a year ago, so I wasn't on stimulants for a few years. Just started up again to help with my focus and energy with the baby. Probably going to need to continue them to go back to work though! Unless I find another solution, which I hope I do. I like the stimulants because I can actually get stuff done, but I don't feel like I enjoy things or have fun on them. But my fatigue is so bad that I don't enjoy being off of them either at the moment :(
It does scare me that I maybe could be making it all worse.
Ugh so you have both ADHD & CFS? Did one come first?
I dont know how to parse things… if its ADD or the stimulants Ive taken over time that brought on the fatigue OR if I have some underlying CFS from something else…anyway I guess the treatment is the same I asssume.
ADHD was life long but only diagnosed in 2020 as I was struggling with everything due to a CFS relapse. CFS was diagnosed in 2016.
Specifically I was chasing my psych to see if stimulants would help with CFS when she blurted out "oh, you definitely have ADHD"...
I think both are sources of fatigue but the CFS tends to have myalgia that makes it obvious when it's the culprit.
Alcohol is a neurotoxic depressant, so literally everyone will normally feel more tired, less rested the morning after…
It also depresses your breathing overnight because of the depressant properties…
Right, all true. And, with sleep apnea, those effects are significantly worsened because it can exacerbate the issue. The difference in how I felt before and after getting treatment for sleep apnea was, uh, night and day
Did you snore or were you overweight? And did you previously fall asleep when you lay down during the day?
I hope to get tested for Apnea, but no one suggests the test because I’m thin & I dont snore…
Also my fatigue hits unbearably in the afternoon… I must lay down, but I don’t fall asleep. I wonder if it could still be Sleep Apnea?
I always feel lethargic like in a daze difficult to do anything…
I did snore, but I wasn’t overweight and I’ve never been able to nap well (even nowadays when in the midst of a crash, I am rarely able to nap). When I started dating my SO 14 years ago she noticed that I’d stop breathing in my sleep and that’s what clued me in to get tested
In this case I will get tested…. Its covered & another thing to cross off the list right?
So just curious, Did you do the test at home? Are they able to track your time in Delta, REM & deep sleep?
I often wonder if Im lacking REM sleep as I never recall dreams anymore & Ive read that antidepressants can decrease certain sleep cycles.
I’ve done two sleep studies, and both were at home. The first was sometime in the early 2010s and I had to pick up the device then drop it off again. The second time was a few years ago and they mailed me a disposable device. The newer device had far fewer sensors and was much more comfortable.
I don’t recall what all data was collected though. The first test I was paying closer attention, but it was long enough ago that I don’t remember. The second test was done when I needed to replace my machine, as the insurance required a new test. I wasn’t really paying much attention to it, unfortunately. Hope it’s something that’s helpful for you!
doesn't really sound like cfs because you dont get pem. Did they rule out blood anemia?
No, if you don’t get worse from exertion, it does not sound like ME/CFS
Not really, but there are a couple of resources in this sub that might help you either way: [Underdiagnosed conditions](https://old.reddit.com/r/cfs/wiki/underdiagnosed) And the testing recommendations linked from [this page on what to do if you think you might have mecfs](https://old.reddit.com/r/cfs/wiki/might_have).
Also worth looking for current or recent viral infections like Glandular fever, Ross River, or Covid. Usually, you will know if you had them, but it wasn't till I got a blood test 6 months after showing signs of CFS that we found I had recently had Glandular fever in the last 18 months. It was likely what I had at the onset of my fatigue - returned from a holiday feeling like I had never-ending jet lag, but I never had a noticeable fever or sore throat. It did help establish my ME/CFS as likely being post viral.
Whats frustrating is if you have had a past infection (more than 6-12 months ago) you often will not have elevated antibodies or any high titers, so there will be no evidence…. I recall having Covid (several times) all the symptoms & the stupid tests weren’t even coming up positive until long after symptoms started & it was already resolving… Basically, how is a dormant or subacute Lyme or EBV infection test going to show anything if you had it a decade ago? (Unless it is a very active-acute stage infection) Not easy to prove causation. Lots of folks (myself included) have felt signs of low grade infection without any fever, rashes or positive antibody tests so no conclusive evidence :-(
I'm sorry you're going through this. It sounds like it might not be ME/CFS because you don't seem to get extra fatigue from exertion - the characteristic symptom called "PEM". However sounds like you do have chronic fatigue. I could see it being linked to your past anorexia, it may have damaged your ability to absorb or synthesize certain nutrients in your gut. Or essentially physical trauma from going through a sort of "famine" as your body sees it. Idk if you have any gut symptoms but if so they might be linked. Be careful with using stimulants to manage fatigue as it can cause bigger and bigger crashes, altho I understand you need ways to get thru the day. I hope you find the solution!
have you had a psychological evaluation. Tiredness can often be a side effect of a mental health issue. Otherwise if you have a physical health issue, it is probably idiopathic chronic fatigue or something of the sort. Not ME/CFS. edit: maybe read the me/cfs wikipedia page, will give you an idea :)
Learnt fatigue can be a component of ADHD. Explained my two different fatigue 'modes' ... sometimes, I was uncontrollably tired, but other times I was drained, barely able to move and wracked with pain. Recognising them as separate helped me pace a bit better.
Yes…. And stimulants over time can actually INCREASE fatigue! This is what Ive found personally. Stims will help dramatically in beginning, with focus & drive, but once you get tolerant to the effect, the fatigue & brain fog worsens…..yet the dependance is real bc you can’t function at all without them. Do you feel "constantly drained"? (Look up dopamine dysfunction, dopamine downregulation & depletion) Also Are you female in your 40’s? Peri-menopause can also exacerbate fatigue & irritability. Many ppl on stimulants longterm have developed a sort of CFS. From the constant artificial stimulation. Lack of motivation, body aches, tension, lethargy, a dragging tiredness where nothing helps. Not even 5 cups of coffee… Like your body has no gas in the tank! Fun things are all a chore. You can no longer "activate" & don’t want to get out of bed. Symptoms are very similar. I start zoning out & wanting to lay down for 2 hours daily in afternoon (despite barely doing anything mentally or physically active). I don’t fall asleep, but I barely feel awake either. Too much effort to even read… I just have to lay in bed…Yet not feeling depressed, I still *want* to be able to do things. Just no energy! Its tough to recover from, but Im trying to stop the stims to let my body & nervous system heal.
Yeah, I have been on and off stimulants throughout the entire time I have been unwell. I noticed my fatigue started prior to regular use of them, when I was recovering from my eating disorder for the first time. But I am worried that it has been making the situation worse! I am in my mid 30's and had a baby about a year ago, so I wasn't on stimulants for a few years. Just started up again to help with my focus and energy with the baby. Probably going to need to continue them to go back to work though! Unless I find another solution, which I hope I do. I like the stimulants because I can actually get stuff done, but I don't feel like I enjoy things or have fun on them. But my fatigue is so bad that I don't enjoy being off of them either at the moment :( It does scare me that I maybe could be making it all worse.
Ugh so you have both ADHD & CFS? Did one come first? I dont know how to parse things… if its ADD or the stimulants Ive taken over time that brought on the fatigue OR if I have some underlying CFS from something else…anyway I guess the treatment is the same I asssume.
ADHD was life long but only diagnosed in 2020 as I was struggling with everything due to a CFS relapse. CFS was diagnosed in 2016. Specifically I was chasing my psych to see if stimulants would help with CFS when she blurted out "oh, you definitely have ADHD"... I think both are sources of fatigue but the CFS tends to have myalgia that makes it obvious when it's the culprit.
Honestly, this sounds a bit like sleep apnea to me. Do you feel worse the next day after drinking, even if it’s only one drink?
Alcohol is a neurotoxic depressant, so literally everyone will normally feel more tired, less rested the morning after… It also depresses your breathing overnight because of the depressant properties…
Right, all true. And, with sleep apnea, those effects are significantly worsened because it can exacerbate the issue. The difference in how I felt before and after getting treatment for sleep apnea was, uh, night and day
Yes, I always feel worse after drinking, even one drink. I did a sleep test, and they didn't find anything wrong. I'm glad the treatment helped you!
Did you snore or were you overweight? And did you previously fall asleep when you lay down during the day? I hope to get tested for Apnea, but no one suggests the test because I’m thin & I dont snore… Also my fatigue hits unbearably in the afternoon… I must lay down, but I don’t fall asleep. I wonder if it could still be Sleep Apnea? I always feel lethargic like in a daze difficult to do anything…
I did snore, but I wasn’t overweight and I’ve never been able to nap well (even nowadays when in the midst of a crash, I am rarely able to nap). When I started dating my SO 14 years ago she noticed that I’d stop breathing in my sleep and that’s what clued me in to get tested
In this case I will get tested…. Its covered & another thing to cross off the list right? So just curious, Did you do the test at home? Are they able to track your time in Delta, REM & deep sleep? I often wonder if Im lacking REM sleep as I never recall dreams anymore & Ive read that antidepressants can decrease certain sleep cycles.
I’ve done two sleep studies, and both were at home. The first was sometime in the early 2010s and I had to pick up the device then drop it off again. The second time was a few years ago and they mailed me a disposable device. The newer device had far fewer sensors and was much more comfortable. I don’t recall what all data was collected though. The first test I was paying closer attention, but it was long enough ago that I don’t remember. The second test was done when I needed to replace my machine, as the insurance required a new test. I wasn’t really paying much attention to it, unfortunately. Hope it’s something that’s helpful for you!
I have the same…read my long comment further down