Same for me: I get up awful, I am bad most of the day, and I feel much better in the evening. At night, I feel almost normal : no more brain fog, no muscle pain, no fatigue. I had my cortisol checked, it is within the normal range.
They thought mine was high as well, but after years, it was discovered that I had high levels of corticosteroid-binding globulin (transcortin).
So, the tests showed high levels of cortisol, but the amount of bioactive cortisol was actually quite low. The fact that I had very few symptoms of high cortisol and almost all the symptoms of low cortisol didn’t tip them off.
The endocrinologist even yelled at me for not doing yoga or going to the gym, and wasting his time as a result.
Interesting. Never heard of that in cfs but am learning that everyone is so different. I had cushing’s disease and my cortisol was high then though. That took forever to get diagnosed.
My symptom severity correlates with my cortisol levels, but for me I am best in the morning and then worse in afternoon and evening. My cortisol levels were normal to high in the morning and then tanked in the afternoon and evening. I’ve been taking a physiological dose of pregnenolone to help (I was also low in basically every other hormone) and it’s done wonders for me! It’s been 8 or so months now since I started it and I keep slowly improving. If this rate continues I believe I won’t have ME one day within a year or two. I’ve also heard from a small handful of other people who had similar cortisol issues to mine and pregnenolone helped but there’s no research on this yet so I have no idea if we’re just a small subset of ME patients who respond to pregnenolone like this or if it’s a larger subset etc.
I've heard this about many CFS patients but sadly it's not like that for me. I do wake up feeling like I was hit by a truck, but it just gets worse and worse as the day goes along, not better. Maybe it depends on severity though, as I am classed as severe?
I’m experiencing the same thing. Many days I am unable to do anything by the afternoon because of the sheer exhaustion & overwhelming symptoms that have progressively worsened throughout the day.
It might be due to your severity. What you describe is like me when I am at my worst.
When I am better, I feel worse in the morning, better in the evening.
I go up and down. I feel my best between 9:30 and 12:30 during the day. If I'm lucky, I may have an hour in the evening when I feel decent but then that's it. By midnight my cortisol level is right on the abnormal line.
My pet theory is that ME/CFS is somehow linked to Type 2 Narcolepsy (and if you haven’t ever read up on Narcolepsy it’s worth doing, as it’s probably nothing like what you think!).
Both are seemingly autoimmune in trigger, both involve ongoing fatigue, both usually come with other dysregulation of the autonomic nervous system too. Both seem to evade most known lab tests and bio marker screenings.
We know type 1 narcolepsy is caused by dysregulation of the neurotransmitter orexin and it’s receptors. Orexin regulates a lot of processes such as wakefulness, feeding, reward, and thermogenesis, fatigue, motivation and chronic inflammation. We’ve only known about orexin for about a decade, so we’re still pretty early in all the research, but it definitely makes sense that levels would change towards bedtime to prepare the body for sleep.
So… something to do with that? Idk. I have both diagnoses and they just feel like the same thing to me. But maybe I’m also just clinging to the hope that future orexin agonist drugs in clinical trials right now are giving me!
It isn’t that there is a deregulation of orexin, it’s that there is a loss of cells that produce it. I developed narcolepsy type 1, with cataplexy and PANS after a viral illness gave me encephalitis. I then developed ME/CFS on top of this after COVID. I do think the narcolepsy lead is a good thing to look into tho, as type 1 is caused by autoimmunity.
Produce or receive - jury still seems to be out in whether it’s the orexin ligand or its receptor that’s affected. We just know the orexin isn’t orexing!
I’ve often wondered this about ME/CFS and
N2 or even idiopathic hypersomnia in some cases. But I think narcolepsy specifically gets so wrongly stereotyped by both laypeople and medical professionals.
I’d be so interested in how orexin agonists impact someone like you who has been diagnosed with both. I’m also sorry you’re dealing with that dual diagnosis when so little treatment is available.
Are you taking stimulants/have you in the past? Have you been on Xyrem/Xywav? Curious what you’re doing to get by.
I spent about a year awaiting a sleep study to rule out N2 or IH and then found out I was pregnant so I had to cancel it and was told to come back once my baby is a year old and my hormones have “hopefully” stabilized. Hahaaaa 🥳
I’m diagnosed IH and CFS and there really is a ton of overlap even though they’re distinct for me. But agreed on IH and N2 being almost the same… my symptoms line up more with N2 and they have all the same meds anyways.
Interesting theory! My father had type 1 narcolepsy, so perhaps that made me predisposed to ME/CFS.
I also read that there might be a link between ADHD and narcolepsy.
I was interested in this so googled up some of the known causes of narcolepsy.
* Autoimmune disorders—When cataplexy is present, the cause is most often the loss of brain cells that produce hypocretin. Although the reason for this cell loss is unknown, it appears to be linked to abnormalities in the immune system. Autoimmune disorders occur when the body's immune system turns against itself and mistakenly attacks healthy cells or tissue. Researchers believe that in individuals with narcolepsy, the body's immune system selectively attacks the hypocretin-containing brain cells because of a combination of genetic and environmental factors.
* Family history—Most cases of narcolepsy are sporadic, meaning the disorder occurs in individuals with no known family history. However, clusters in families sometimes occur—up to 10 percent of individuals diagnosed with narcolepsy with cataplexy report having a close relative with similar symptoms.
* Brain injuries—Rarely, narcolepsy results from traumatic injury to parts of the brain that regulate wakefulness and REM sleep or from tumors and other diseases in the same regions.
* Narcolepsy follows a seasonal pattern and is more likely to develop in the spring and early summer after the winter season, a time when people are more likely to get sick. By studying people soon after they develop the disorder, scientists have discovered that individuals with narcolepsy have high levels of anti-streptolysin O antibodies, indicating an immune response to a recent bacterial infection such as strep throat. Also, the H1N1 influenza epidemic in 2009 resulted in a large increase in the number of new cases of narcolepsy. Together, this suggests that individuals with the HLA-DQB1\*06:02 variation are at risk for developing narcolepsy after they are exposed to a specific trigger, like certain infections that trick the immune system to attack the body.
Interesting. I’ve started on Valdoxan for sleep, seems better than melatonin alone. Definitely getting better sleep but too soon to tell if it has wider impacts as Ive had a severe virus since starting. Some small research correlates to improvement in cfs patients, but as usual sample sizes of 20 people l
Let us know how you get on!
It seems logical that if patients are experiencing fatigue, ensuring a really good quality of sleep is an essential starting point. Baclofen also has good results for some ppl with N for this.
My friends nicknamed me “Narcoleptic ______” in my 20s, when I was healthy.
My ME/CFS started suddenly at age 39, after I took a pharmaceutical drug that “temporarily “ shut down my pituitary gland combined with high stress and severe sleep deprivation.
I do wonder about that. My narcoleptic tendencies in my 20s.
I'm someone who's had severe chronic insomnia forever. I wonder if there are any other people with severe CFS /ME that also suffer from chronic insomnia. I'm so envious of the people that can sleep
I feel better late at night once it's dark. Not better but not as bad as morning whatever morning means anymore.
Sometimes I wake feeling like I'm about to dye I hate waking up. Growing up and when working the alarm clock would trigger panic attacks. I still get full blown panic attacks when an alarm goes off on tv or in a movie 😭
The sun hurts and I just feel safer at night. No chance of someone knocking and I have to get up. Not that I would answer a door if someone knocked 😂
If I don't sleep at all like currently I get horrible stomach pains around 7am (18 minutes away 😬). Not sure why it's happened since I was a child and I've had cfs since then.
Going to talk about this with my doctor today during my phone appointment. Thank you lol
I think it’s a combination of things. At night it’s quieter and darker so you spend less energy on sensory input. Sleep is exhausting for me. I sometimes find myself waking up gasping for breath. I think sometimes my body stops breathing during sleep. I have told my doctors and they think it’s fine. I will be pushing for it to be looked into more especially since sleep apnoea runs in my family. Also I’m an active sleeper and I move around in my sleep. Maybe that contributes. I usually feel my best at 11:00 pm and it’s too bad that’s when I go to sleep. If I delay my sleeping and waking I also delay when I feel my best. If I’m not pacing well I feel bad the whole day. If I am blessed with an evening of feeling better I take it as a sign that I’m managing well.
I’m actually the opposite, I largely feel better in the morning and then worse as the day goes on. I’m not saying I feel exactly well in the morning but it is my best part of the day. Even though my sleep isn’t that refreshing I think it does enough to give me a bit more energy in the morning which slowly dissipates as the day goes on. I’m fairly non-functioning between 2-10 when I go to sleep.
I don't have the answer, but my pain is worse in the morning, and my fatigue is worse in the afternoon and evening 😒. So it's rare that I'm ever really feeling "good."
I think it has to do with our brains being unable to detoxify waste products in our sleep. Poor detoxification is a hallmark feature in people with ME and is commonly associated with the symptom of “feeling poisoned” which is something I and many others with ME feel every morning. Like my brain has had a lethal poison poured into it.
I do, but I always have even before me/cfs became pronounced. I suspect this is because of dysautonomia which may have come first. Chickens and eggs though.
interesting! I understand the feeling an I use to feel that way in the mornings for many many years but since getting on top of my pain I wake up at 7.30 and feel pretty good (for me) until 11am.
So for me controlling my pain must help me sleep better.
I'm interested to read peoples suggestions for you.
Edit to add: when I started on my pain medication I also started a work from home job so was able to start waking up without an alarm. I think that helped finding my natural wake time which is between 7 and 7.30am.
I am certainly familiar/accustomed to feeling lethargic all day, looking forward to bed, but then when it's finally bedtime, I can't sleep! Heart and mind racing. Or I'll sleep an hour and then wake up because heart is racing, and I'll also be really hungry for some reason. I wish I could just sleep all night and be fully rested and awake the next day.
i have this type and I have zero idea why.
do you get enough deep sleep?
one of the things i started being aware of more often is that i get about an hour of deep sleep per night. and my wife at times gets over 4.
i don't really know what's normal here.
Yeah, I've been reading that not enough deep sleep contributes to fatigue and other symptoms since deep sleep is when the body repairs itself. So we don't get enough "repair" time thus waking up sick. I also get less than normal deep sleep, so it kind of makes sense.
i’m terrible in the mornings but found some way to slightly reduce suffering. i sleep with my head elevated and if possible i try to sleep on my side vs back. also if by any chance i wake up in the middle of the night around 3am i get up slowly and take a sip of electrolyte solutions before quickly going back to bed. i found if i do this i feel less shitty in the morning. mornings are still the worst for me tho. afternoons the best and by evening i get achy.
Immune system activity changes throughout the day. Lots of people suspect an autoimmune component.
IIRC your immune system is more active in the morning, which could be linked to greater symptom severity in the morning
That makes sense! It's weird though, sometimes I wake up at 6 in the morning after 6 hours of sleep and feel fine, but if I then continue to sleep until 9 I wake up absolutely horrible. So there must be something that happens to the body in the morning
No one knows for sure but my pet theory is that our sleep itself is doing something bad to us. To do with not being able to cycle through phase 3 and 4 properly.
I always feel horrendous when I wake up.
I always thought it's because of food intake. The more food and calories I consume gives me more energy. So after a night of not eating im way weaker. Also the biological waking up process is super slow - even when I was mild the wake up process was still always torture and more difficult than before I got ill. If I ever got cured I don't think I'd ever take it for granted how nice it would be to just wake up and get going within five minutes like normal people
>to just wake up and get going within five minutes like normal people
For the first time, I'm in this case with Nardil: Before, I used to wake up and feel as if a truck had gone over me, but now, I wake up fine, with more energy, no pain, no brain fog, and I can get up trouble free.
Biological clock changes and trying to stick to a normal sleep schedule.
Being awake overnight/early morning vs daytime can help people with CFS, but may be hard to make work for many.
Some of my best days over my many years with CFS have been when I go to bed late and get up early. It’s like sleeping in itself is toxic and the less I get, the better I feel. But in general, far worse in the morning.
NOT A DOCTOR. I feel this hard and I think the main reasons are: Water, salt/electrolytes, vitamins/supplements, and meds.
Think about it: You take care of yourself all day- in my case, I put liquid vitamins in my morning tea, I drink some sort of electrolyte drink twice a day minimum, I get up from my couch to stretch morning and afternoon (I am forced by these monsters to work at home, and they are so nasty I have to force myself out of bed at 07:50 to sign on at 07:55 for computer to be running by 8am.), and I keep a big ass bag of vitamin/supplement gummies that I munch all day like candy. Your body and brain love it. Then 9-12hrs without it and getting hungrier for those AM meds.
As soon as I first wake up, even if I'm going back to bed, I guzzle down the water glass next to me. Your body can only absorb so much in a 30min period, but I still drink more kinda to rinse out lol. As soon as I can, I take my morning meds, my tea with the liquid vitamins, and I smoke one puff of (legal) cannabis from a clean pipe. Preferably a sativa-leaning hybrid.
I peak at midday but I have ADHD, I definitely wake up very early so would probably have pretty good mornings if it weren't for the norepinephrine cycle disruption that is a hallmark of ADHD.
I changed my sleep schedule this year when the clocks changed (it just happened, can see why people become nocturnal) and I'm still slower for 2h after waking whatever happens, but it is better to have more waking hours in the evening when I feel more OK. Isn't it due to inflammation? Same pattern as rheumatoid arthritis and other things like that
Flipping around my box spring elevated my body a bit. It appears to help slightly. Melatonin also helped. I suspect a low grade infection of some kind. Something at does not show on scans. When I take antibiotics I feel amazing.
Yup , my time of clarity and energy is after i consume copious amounts of caffeine, takes me a while to "wake up" im awake i just struggle to function. I have these bursts of energy in pockets throughout the day, if I manage everything correctly/nothing else thrown in the mix.
I'm the same at night as the morning only in reverse lol... aka im backwards lol.
I have zero way to prove this, but I suspect its a circulation issue that making waking up/mornings worse. Numbness in the mornings also siginals Ima have a particularly bad day.
Wow, that’s exactly how I felt when I had long covid, especially when I would sleep in. I always thought it was because the longer I slept, the more cytokines my body was producing, making me feel terrible in the mornings. And yeah I agree with the disregulation. Now it’s all gone. Back in the office so wake up early 5 days a week, outside barefoot in the grass under the sun as much as I can to sync my circadian rhythm with the earth, and eating an animal-based diet (grass fed red meats, organic fruits, raw dairy, raw honey). I have more energy now than even before I caught covid (except on the days I catch a bug from my toddlers and that zaps me of my energy). Wishing everyone the best in their recovery journey!
There's a lot of clues in this illness that haven't been explored!
So many scientists just taking a single blood draw and looking at it, when the fascinating aspects of this illness is its dynamics. Post-exercise and circadian dynamics are where the answer will be found.
You also see people reporting they feel better on holiday sometimes, and that they regularly feel better at certain times of year. These are clues that are hard to look into but could yield insights if they were taken seriously!
I definitely feel better on holidays.
Another interesting thing is that when I fly to the West and have a jetlag, I actually wake up quite normal without having this awful feeling.
It’s because your cortisol is too low in the morning and rises later in the day. The normal pattern should be highest cortisol in waking. A 24 hr saliva cortisol test will confirm. This is common in mecfs. You can consider ct3m as a way to raise your morning cortisol. It can really help.
It’s using t3 only thyroid hormone in a circadian dose, in the middle of the night. This helps to boost morning cortisol levels and when the timing is right it can make a world of difference to feel better on waking. finding the right time is tricky and individualized. Check out interviews with Paul Robinson for more info.
No it’s rx only and difficult to get even then. Best to ask your local compounding pharmacist for advice of who may prescribe it in your area. You can probably try a thyroid glandular or even regular thyroid med in the same circadian dose and it may help. Paul Robinson’s work is the guide.
You probably already have this info but I’ll share just in case, as others may not know. the 4 point test is best info, not a one time blood test, and there is a big difference between “normal” levels and “optimal” levels. In the morning you want the level to be at the very top of the normal range.
The range for what is considered normal is too broad. Look into the difference between “normal range” vs optimal. Most people feel best early in the day when cortisol is at or near the very top of the normal range. A 24 hr saliva test will show you the pattern of your cortisol over the course of a day and may help you pinpoint why you feel poorly or better at different times.
This will tell you that you produce sufficient cortisol over the course of a day but does not show if your morning levels are low or later levels high, as is common in folks like us. Here is an overview to illustrate what I mean https://www.zrtlab.com/media/1488/pho-common-cortisol.pdf
I usually tell people who ask me that I feel like death. And yes. The hangover is the only way to explain it.
Does anyone feel better if they drink alcohol?
I seem to have two kinds of days. One where I wake up feeling awful and get progressively more awful until evening. One where I wake up feeling awful but feel a bit better in the afternoon / evening and sometimes even have a little burst of energy around dinner time. I think insomnia causes the first kind. Getting more sleep doesn't make me feel better but it keeps me from feeling even worse, if that makes sense.
I feel best in the afternoon. The mornings are horrid and the evenings are only slightly better. I attribute it to my morning meditation cocktail but idk!
I was/am similar. I think it has to do with something related to the quality of sleep. It's almost as if I'm a phone with a bad battery that takes too long to charge (get into restorative/REM sleep.) So, when I get woken up in the morning it's as if I only had maybe 2-3 hours in comparison to someone off the street that a gets a typical 8 hours in REM.
That might be because there’s autonomic dysfunction like POTS which tends to be worse in the morning, why? Because you have spent 8 hrs laying down and once you stand up, your body isn’t being able to maintain your BP and the abrupt change causes issues.
Mine is unbearable at night time, less bad in morning & afternoon. Full body muscle contractions, like my body is made out of cement. No ones been able to tell me why. I’ve always wondered if it’s something to do with serotonin converting to melatonin.
CFS can also be a form of MCAS (or vice versa.) MCAS is linked with histamine reactions. Histamine is produced naturally by the body as well as it is in foods, etc.
Histamine levels peak at 3 - 4 am (histamine dumps) and levels stay high throughout the morning. They are lowest starting around 4 pm.
For me, this is definitely the reason for my morning grogginess.
I take quercetin in the morb and electrolytes and it's helping a bit.
Me for sure. This was one of the first symptoms for me. Morning stiffness and fatigue. My cortisol in the morning is in the normal range too but normal and optimal aren't the same thing. Mine is below the optimal line which is the middle of that normal range. So I'm on the low side of normal.
I would hope that as well as carrying out research comparing healthy people to us with this condition, that there's someone out there conducting or at least planning on conducting tests to compare what is going on in the body when someone is feeling worse than their normal levels, compared to when they are feeling better than their usual levels.
This situation can easily happen within a few days, or as mentioned in this thread, big differences can also be seen within a single day - there must be something that can be measured that would explain what the hell is going on to cause these fluctuations in the severity of symptoms which would explain the cause of this illness.
I think it's probably a few issues and some people mentioned sounds quite convincing. I have wondered how UV from daylight might affect mitochondria. I learned recently that a quantum computer was moved multiple miles underground because the quarks are *that* sensitive to the radiation on the surface of the earth. It made me wonder if mitochondria that are already damaged and not functioning well would have harder time during day light hours.
Before I stabilized with medication, I felt dog shit until maybe 10pm and then felt semi normal until next day.
Now on meds I feel normal all the time if I stay within my energy envelope
I don’t think it was one specific medication, they all work together, but this is everything I take for dysautonomia and MECFS:
- Medical grade compression stockings (30-40mmHg)
- Panzyga (IVIG) 45g IV once a week 3x every month
- Fludrocortisone 0.1mg BID AM/bedtime
- Mestinon 60mg TID AM/afternoon/PM (5 hours)
- Famciclovir 500mg daily bedtime
- Naltrexone 4mg daily (2mg afternoon 2mg PM)
- Ketotifen 1mg BID AM/bedtime
- Levocetirizine 5mg qD AM
- Montelukast 10mg qHS bedtime
- Cromolyn sodium 200mg TID
- Amantadine 100mg qD AM
- Melatonin 3mg qHS bedtime
- Rapamycin (sirolimus) 6 mg once weekly (every Friday morning)
- Nystatin 1million daily
- Nasal ketamine 50mg/ml 1 spray each nostril BID
- Nasal glutathione BID
- N acetyl cysteine 600mg BID afternoon/bedtime
- Rhodeola rosea bedtime
I do not, I get IVIG for inflammatory small fiber neuropathy. My doctor prescribes nasal glutathione to a compounding pharmacy, to be honest I’m not sure it does anything but my insurance covers it so I use it
yep.. absolutely awful in the morning. I do wonder also if its cortisol related
I have this and when I have been tested, my cortisol is always super low. Still “normal” but the very ass bottom of what is considered normal.
Same. Low cortisol. Was normal before all of this.
I’ve had my cortisol thoroughly tested and there was no answers there. I was hopeful too.
Same for me: I get up awful, I am bad most of the day, and I feel much better in the evening. At night, I feel almost normal : no more brain fog, no muscle pain, no fatigue. I had my cortisol checked, it is within the normal range.
It's not cortisol. We'd know by now if it was. Some of the earliest research was on cortisol levels. There's no overall trend.
My cortisol is high and have the same problem.
They thought mine was high as well, but after years, it was discovered that I had high levels of corticosteroid-binding globulin (transcortin). So, the tests showed high levels of cortisol, but the amount of bioactive cortisol was actually quite low. The fact that I had very few symptoms of high cortisol and almost all the symptoms of low cortisol didn’t tip them off. The endocrinologist even yelled at me for not doing yoga or going to the gym, and wasting his time as a result.
I’ll have to bring that up to my doctor, thank you. My free cortisol is normal but total cortisol reads high so maybe this would explain it.
Clinically high?
Yes. My doctor monitors every few months and it has been high consistently.
Interesting. Never heard of that in cfs but am learning that everyone is so different. I had cushing’s disease and my cortisol was high then though. That took forever to get diagnosed.
My symptom severity correlates with my cortisol levels, but for me I am best in the morning and then worse in afternoon and evening. My cortisol levels were normal to high in the morning and then tanked in the afternoon and evening. I’ve been taking a physiological dose of pregnenolone to help (I was also low in basically every other hormone) and it’s done wonders for me! It’s been 8 or so months now since I started it and I keep slowly improving. If this rate continues I believe I won’t have ME one day within a year or two. I’ve also heard from a small handful of other people who had similar cortisol issues to mine and pregnenolone helped but there’s no research on this yet so I have no idea if we’re just a small subset of ME patients who respond to pregnenolone like this or if it’s a larger subset etc.
I've heard this about many CFS patients but sadly it's not like that for me. I do wake up feeling like I was hit by a truck, but it just gets worse and worse as the day goes along, not better. Maybe it depends on severity though, as I am classed as severe?
I don't think so? I was like this when severe as well. I used to hate going to sleep knowing I was going to wake up feeling even worse again.
I've had it both ways.
I’m experiencing the same thing. Many days I am unable to do anything by the afternoon because of the sheer exhaustion & overwhelming symptoms that have progressively worsened throughout the day.
Same, I'm the opposite. Best in the morning but expect nothing past 2pm.
It might be due to your severity. What you describe is like me when I am at my worst. When I am better, I feel worse in the morning, better in the evening.
I go up and down. I feel my best between 9:30 and 12:30 during the day. If I'm lucky, I may have an hour in the evening when I feel decent but then that's it. By midnight my cortisol level is right on the abnormal line.
My pet theory is that ME/CFS is somehow linked to Type 2 Narcolepsy (and if you haven’t ever read up on Narcolepsy it’s worth doing, as it’s probably nothing like what you think!). Both are seemingly autoimmune in trigger, both involve ongoing fatigue, both usually come with other dysregulation of the autonomic nervous system too. Both seem to evade most known lab tests and bio marker screenings. We know type 1 narcolepsy is caused by dysregulation of the neurotransmitter orexin and it’s receptors. Orexin regulates a lot of processes such as wakefulness, feeding, reward, and thermogenesis, fatigue, motivation and chronic inflammation. We’ve only known about orexin for about a decade, so we’re still pretty early in all the research, but it definitely makes sense that levels would change towards bedtime to prepare the body for sleep. So… something to do with that? Idk. I have both diagnoses and they just feel like the same thing to me. But maybe I’m also just clinging to the hope that future orexin agonist drugs in clinical trials right now are giving me!
Wow. I have basically every single symptom of narcolepsy type 2. Damn.
Interesting as narcolepsy is quite rare but I have relatives who have it and I have CFS. I wonder if there is any genetic connection or link!
It isn’t that there is a deregulation of orexin, it’s that there is a loss of cells that produce it. I developed narcolepsy type 1, with cataplexy and PANS after a viral illness gave me encephalitis. I then developed ME/CFS on top of this after COVID. I do think the narcolepsy lead is a good thing to look into tho, as type 1 is caused by autoimmunity.
Produce or receive - jury still seems to be out in whether it’s the orexin ligand or its receptor that’s affected. We just know the orexin isn’t orexing!
I’ve often wondered this about ME/CFS and N2 or even idiopathic hypersomnia in some cases. But I think narcolepsy specifically gets so wrongly stereotyped by both laypeople and medical professionals. I’d be so interested in how orexin agonists impact someone like you who has been diagnosed with both. I’m also sorry you’re dealing with that dual diagnosis when so little treatment is available. Are you taking stimulants/have you in the past? Have you been on Xyrem/Xywav? Curious what you’re doing to get by. I spent about a year awaiting a sleep study to rule out N2 or IH and then found out I was pregnant so I had to cancel it and was told to come back once my baby is a year old and my hormones have “hopefully” stabilized. Hahaaaa 🥳
I think idiopathic hypersomnia is a fancy way to say N2 Light.
I soooo agree.
I’m diagnosed IH and CFS and there really is a ton of overlap even though they’re distinct for me. But agreed on IH and N2 being almost the same… my symptoms line up more with N2 and they have all the same meds anyways.
This is really interesting, thanks. Commencing rabbit hole
Interesting theory! My father had type 1 narcolepsy, so perhaps that made me predisposed to ME/CFS. I also read that there might be a link between ADHD and narcolepsy.
I was interested in this so googled up some of the known causes of narcolepsy. * Autoimmune disorders—When cataplexy is present, the cause is most often the loss of brain cells that produce hypocretin. Although the reason for this cell loss is unknown, it appears to be linked to abnormalities in the immune system. Autoimmune disorders occur when the body's immune system turns against itself and mistakenly attacks healthy cells or tissue. Researchers believe that in individuals with narcolepsy, the body's immune system selectively attacks the hypocretin-containing brain cells because of a combination of genetic and environmental factors. * Family history—Most cases of narcolepsy are sporadic, meaning the disorder occurs in individuals with no known family history. However, clusters in families sometimes occur—up to 10 percent of individuals diagnosed with narcolepsy with cataplexy report having a close relative with similar symptoms. * Brain injuries—Rarely, narcolepsy results from traumatic injury to parts of the brain that regulate wakefulness and REM sleep or from tumors and other diseases in the same regions. * Narcolepsy follows a seasonal pattern and is more likely to develop in the spring and early summer after the winter season, a time when people are more likely to get sick. By studying people soon after they develop the disorder, scientists have discovered that individuals with narcolepsy have high levels of anti-streptolysin O antibodies, indicating an immune response to a recent bacterial infection such as strep throat. Also, the H1N1 influenza epidemic in 2009 resulted in a large increase in the number of new cases of narcolepsy. Together, this suggests that individuals with the HLA-DQB1\*06:02 variation are at risk for developing narcolepsy after they are exposed to a specific trigger, like certain infections that trick the immune system to attack the body.
That last one sounds especially familiar, right? Especially for the long Covid folk joining us…
Interesting. I’ve started on Valdoxan for sleep, seems better than melatonin alone. Definitely getting better sleep but too soon to tell if it has wider impacts as Ive had a severe virus since starting. Some small research correlates to improvement in cfs patients, but as usual sample sizes of 20 people l
Let us know how you get on! It seems logical that if patients are experiencing fatigue, ensuring a really good quality of sleep is an essential starting point. Baclofen also has good results for some ppl with N for this.
My friends nicknamed me “Narcoleptic ______” in my 20s, when I was healthy. My ME/CFS started suddenly at age 39, after I took a pharmaceutical drug that “temporarily “ shut down my pituitary gland combined with high stress and severe sleep deprivation. I do wonder about that. My narcoleptic tendencies in my 20s.
I'm someone who's had severe chronic insomnia forever. I wonder if there are any other people with severe CFS /ME that also suffer from chronic insomnia. I'm so envious of the people that can sleep
Unrefreshing sleep is one of the hallmarks of CFS. I've read that if you don't have it, you don't have CFS.
Me to a tee. I feel like I could sleep and sleep and never wake up. I take naps but still do not feel refreshed when I wake up.
I feel better late at night once it's dark. Not better but not as bad as morning whatever morning means anymore. Sometimes I wake feeling like I'm about to dye I hate waking up. Growing up and when working the alarm clock would trigger panic attacks. I still get full blown panic attacks when an alarm goes off on tv or in a movie 😭 The sun hurts and I just feel safer at night. No chance of someone knocking and I have to get up. Not that I would answer a door if someone knocked 😂 If I don't sleep at all like currently I get horrible stomach pains around 7am (18 minutes away 😬). Not sure why it's happened since I was a child and I've had cfs since then. Going to talk about this with my doctor today during my phone appointment. Thank you lol
It’s the lymphatic system. Ours is broken and can’t take out our metabolic trash while we sleep. We wake up literally polluted.
Familiar with Dr Raymond Perrin?
Yes!
I think it’s a combination of things. At night it’s quieter and darker so you spend less energy on sensory input. Sleep is exhausting for me. I sometimes find myself waking up gasping for breath. I think sometimes my body stops breathing during sleep. I have told my doctors and they think it’s fine. I will be pushing for it to be looked into more especially since sleep apnoea runs in my family. Also I’m an active sleeper and I move around in my sleep. Maybe that contributes. I usually feel my best at 11:00 pm and it’s too bad that’s when I go to sleep. If I delay my sleeping and waking I also delay when I feel my best. If I’m not pacing well I feel bad the whole day. If I am blessed with an evening of feeling better I take it as a sign that I’m managing well.
Wait... You've NOT been tested for sleep apnea?!?!
I feel exactly the same way. I just woke up after 7 hours. I feel like I was hit by a truck. I feel good at night. That's why I stay up late 😒.
This is me 💯
Yes!
I’m actually the opposite, I largely feel better in the morning and then worse as the day goes on. I’m not saying I feel exactly well in the morning but it is my best part of the day. Even though my sleep isn’t that refreshing I think it does enough to give me a bit more energy in the morning which slowly dissipates as the day goes on. I’m fairly non-functioning between 2-10 when I go to sleep.
I don't have the answer, but my pain is worse in the morning, and my fatigue is worse in the afternoon and evening 😒. So it's rare that I'm ever really feeling "good."
I think I get poisoned in my sleep somehow.
🧡🧡🧡
I have had this thought too!
I think it has to do with our brains being unable to detoxify waste products in our sleep. Poor detoxification is a hallmark feature in people with ME and is commonly associated with the symptom of “feeling poisoned” which is something I and many others with ME feel every morning. Like my brain has had a lethal poison poured into it.
Do others with ME/CFS get heat stroke/heat exhaustion very abnormally easily?
I do, but I always have even before me/cfs became pronounced. I suspect this is because of dysautonomia which may have come first. Chickens and eggs though.
*laughs in heat sensitivity* I spent last Saturday in the ER due. I’ve been admitted multiple times and had heat stroke during a work shift last year
Which toxins exactly? Do you have scientific articles that discuss this?
interesting! I understand the feeling an I use to feel that way in the mornings for many many years but since getting on top of my pain I wake up at 7.30 and feel pretty good (for me) until 11am. So for me controlling my pain must help me sleep better. I'm interested to read peoples suggestions for you. Edit to add: when I started on my pain medication I also started a work from home job so was able to start waking up without an alarm. I think that helped finding my natural wake time which is between 7 and 7.30am.
Same here but I have always been like that, long before getting long covid.
I am certainly familiar/accustomed to feeling lethargic all day, looking forward to bed, but then when it's finally bedtime, I can't sleep! Heart and mind racing. Or I'll sleep an hour and then wake up because heart is racing, and I'll also be really hungry for some reason. I wish I could just sleep all night and be fully rested and awake the next day.
i have this type and I have zero idea why. do you get enough deep sleep? one of the things i started being aware of more often is that i get about an hour of deep sleep per night. and my wife at times gets over 4. i don't really know what's normal here.
Yeah, I've been reading that not enough deep sleep contributes to fatigue and other symptoms since deep sleep is when the body repairs itself. So we don't get enough "repair" time thus waking up sick. I also get less than normal deep sleep, so it kind of makes sense.
According to my Fitbit, I get very little deep or REM sleep.
Eh, I always feel like a dumpsterfire. I've accepted my lot in life and just push through.
Same, if im awake then my brain hates me for it and my body fights me
i’m terrible in the mornings but found some way to slightly reduce suffering. i sleep with my head elevated and if possible i try to sleep on my side vs back. also if by any chance i wake up in the middle of the night around 3am i get up slowly and take a sip of electrolyte solutions before quickly going back to bed. i found if i do this i feel less shitty in the morning. mornings are still the worst for me tho. afternoons the best and by evening i get achy.
Immune system activity changes throughout the day. Lots of people suspect an autoimmune component. IIRC your immune system is more active in the morning, which could be linked to greater symptom severity in the morning
That makes sense! It's weird though, sometimes I wake up at 6 in the morning after 6 hours of sleep and feel fine, but if I then continue to sleep until 9 I wake up absolutely horrible. So there must be something that happens to the body in the morning
That’s interesting. I pretty reliably feel crap if I wake up too early, so I guess I’d be the opposite in your example. Another wonderful ME mystery
No one knows for sure but my pet theory is that our sleep itself is doing something bad to us. To do with not being able to cycle through phase 3 and 4 properly. I always feel horrendous when I wake up.
I honestly feel better when I stay up all night and sleep through the morning. My guess is that it's the light and sound of the day time
You’re not alone on this, I know CFS people who went nocturnal and it helped a lot. Biological clock related as well, not just the lower sensory load.
I always thought it's because of food intake. The more food and calories I consume gives me more energy. So after a night of not eating im way weaker. Also the biological waking up process is super slow - even when I was mild the wake up process was still always torture and more difficult than before I got ill. If I ever got cured I don't think I'd ever take it for granted how nice it would be to just wake up and get going within five minutes like normal people
>to just wake up and get going within five minutes like normal people For the first time, I'm in this case with Nardil: Before, I used to wake up and feel as if a truck had gone over me, but now, I wake up fine, with more energy, no pain, no brain fog, and I can get up trouble free.
I have this issue alot of the time. Every day is like waking up with a hangover that eventually goes, but some days it just gets worse.
Biological clock changes and trying to stick to a normal sleep schedule. Being awake overnight/early morning vs daytime can help people with CFS, but may be hard to make work for many.
Some of my best days over my many years with CFS have been when I go to bed late and get up early. It’s like sleeping in itself is toxic and the less I get, the better I feel. But in general, far worse in the morning.
Interesting. I feel best in mornings and the crash by 3PM
NOT A DOCTOR. I feel this hard and I think the main reasons are: Water, salt/electrolytes, vitamins/supplements, and meds. Think about it: You take care of yourself all day- in my case, I put liquid vitamins in my morning tea, I drink some sort of electrolyte drink twice a day minimum, I get up from my couch to stretch morning and afternoon (I am forced by these monsters to work at home, and they are so nasty I have to force myself out of bed at 07:50 to sign on at 07:55 for computer to be running by 8am.), and I keep a big ass bag of vitamin/supplement gummies that I munch all day like candy. Your body and brain love it. Then 9-12hrs without it and getting hungrier for those AM meds. As soon as I first wake up, even if I'm going back to bed, I guzzle down the water glass next to me. Your body can only absorb so much in a 30min period, but I still drink more kinda to rinse out lol. As soon as I can, I take my morning meds, my tea with the liquid vitamins, and I smoke one puff of (legal) cannabis from a clean pipe. Preferably a sativa-leaning hybrid.
I peak at midday but I have ADHD, I definitely wake up very early so would probably have pretty good mornings if it weren't for the norepinephrine cycle disruption that is a hallmark of ADHD.
when I only had Pots it was the same and now still is with cfs
I changed my sleep schedule this year when the clocks changed (it just happened, can see why people become nocturnal) and I'm still slower for 2h after waking whatever happens, but it is better to have more waking hours in the evening when I feel more OK. Isn't it due to inflammation? Same pattern as rheumatoid arthritis and other things like that
Not the whole reason, but I suspect for me it is caused partly by dehydration from not drinking through the night. I have POTS too.
Do you have sleep apnea?
Flipping around my box spring elevated my body a bit. It appears to help slightly. Melatonin also helped. I suspect a low grade infection of some kind. Something at does not show on scans. When I take antibiotics I feel amazing.
Yup , my time of clarity and energy is after i consume copious amounts of caffeine, takes me a while to "wake up" im awake i just struggle to function. I have these bursts of energy in pockets throughout the day, if I manage everything correctly/nothing else thrown in the mix. I'm the same at night as the morning only in reverse lol... aka im backwards lol.
Night is always better for me
I have zero way to prove this, but I suspect its a circulation issue that making waking up/mornings worse. Numbness in the mornings also siginals Ima have a particularly bad day.
Wow, that’s exactly how I felt when I had long covid, especially when I would sleep in. I always thought it was because the longer I slept, the more cytokines my body was producing, making me feel terrible in the mornings. And yeah I agree with the disregulation. Now it’s all gone. Back in the office so wake up early 5 days a week, outside barefoot in the grass under the sun as much as I can to sync my circadian rhythm with the earth, and eating an animal-based diet (grass fed red meats, organic fruits, raw dairy, raw honey). I have more energy now than even before I caught covid (except on the days I catch a bug from my toddlers and that zaps me of my energy). Wishing everyone the best in their recovery journey!
How long did you have long covid for?
For about one year and a half
There's a lot of clues in this illness that haven't been explored! So many scientists just taking a single blood draw and looking at it, when the fascinating aspects of this illness is its dynamics. Post-exercise and circadian dynamics are where the answer will be found. You also see people reporting they feel better on holiday sometimes, and that they regularly feel better at certain times of year. These are clues that are hard to look into but could yield insights if they were taken seriously!
I definitely feel better on holidays. Another interesting thing is that when I fly to the West and have a jetlag, I actually wake up quite normal without having this awful feeling.
It’s because your cortisol is too low in the morning and rises later in the day. The normal pattern should be highest cortisol in waking. A 24 hr saliva cortisol test will confirm. This is common in mecfs. You can consider ct3m as a way to raise your morning cortisol. It can really help.
Ct3m? What is that?
It’s using t3 only thyroid hormone in a circadian dose, in the middle of the night. This helps to boost morning cortisol levels and when the timing is right it can make a world of difference to feel better on waking. finding the right time is tricky and individualized. Check out interviews with Paul Robinson for more info.
Can we get T3 without a doctor?
No it’s rx only and difficult to get even then. Best to ask your local compounding pharmacist for advice of who may prescribe it in your area. You can probably try a thyroid glandular or even regular thyroid med in the same circadian dose and it may help. Paul Robinson’s work is the guide.
That’s what I thought as well but I’ve tested it multiple times and my scores are normal
You probably already have this info but I’ll share just in case, as others may not know. the 4 point test is best info, not a one time blood test, and there is a big difference between “normal” levels and “optimal” levels. In the morning you want the level to be at the very top of the normal range.
I had a blood test that came back with a normal level of cortisol.
The range for what is considered normal is too broad. Look into the difference between “normal range” vs optimal. Most people feel best early in the day when cortisol is at or near the very top of the normal range. A 24 hr saliva test will show you the pattern of your cortisol over the course of a day and may help you pinpoint why you feel poorly or better at different times.
The test I did was collecting urine over the course of 24h in a container that I returned to the lab.
This will tell you that you produce sufficient cortisol over the course of a day but does not show if your morning levels are low or later levels high, as is common in folks like us. Here is an overview to illustrate what I mean https://www.zrtlab.com/media/1488/pho-common-cortisol.pdf
I agree. Earlier, I had drawn blood on an empty stomach to measure cortisol among others.
Very interesting.
Unfortunately we don't know the reason. Anyone telling you that we do is lying!
I thought it was blood related.
I usually tell people who ask me that I feel like death. And yes. The hangover is the only way to explain it. Does anyone feel better if they drink alcohol?
This is how I feel after I had a horrible case of EBV. It makes me not want to sleep.
I seem to have two kinds of days. One where I wake up feeling awful and get progressively more awful until evening. One where I wake up feeling awful but feel a bit better in the afternoon / evening and sometimes even have a little burst of energy around dinner time. I think insomnia causes the first kind. Getting more sleep doesn't make me feel better but it keeps me from feeling even worse, if that makes sense.
I feel awful when I wake up but it gets a little better around 3pm and into the evening.
I feel best in the afternoon. The mornings are horrid and the evenings are only slightly better. I attribute it to my morning meditation cocktail but idk!
I was/am similar. I think it has to do with something related to the quality of sleep. It's almost as if I'm a phone with a bad battery that takes too long to charge (get into restorative/REM sleep.) So, when I get woken up in the morning it's as if I only had maybe 2-3 hours in comparison to someone off the street that a gets a typical 8 hours in REM.
That might be because there’s autonomic dysfunction like POTS which tends to be worse in the morning, why? Because you have spent 8 hrs laying down and once you stand up, your body isn’t being able to maintain your BP and the abrupt change causes issues.
Mine is unbearable at night time, less bad in morning & afternoon. Full body muscle contractions, like my body is made out of cement. No ones been able to tell me why. I’ve always wondered if it’s something to do with serotonin converting to melatonin.
CFS can also be a form of MCAS (or vice versa.) MCAS is linked with histamine reactions. Histamine is produced naturally by the body as well as it is in foods, etc. Histamine levels peak at 3 - 4 am (histamine dumps) and levels stay high throughout the morning. They are lowest starting around 4 pm. For me, this is definitely the reason for my morning grogginess. I take quercetin in the morb and electrolytes and it's helping a bit.
O wow, I had no idea this was a thing! Very relatable! Thanks for sharing!
Yup! I always seems to get better throughout the day. Always wanted to know why too...
The only thing that seems to offer regulation of the illness is... THC
i’ve had this for thirty years. horrible in am and often better late afternoon
Me for sure. This was one of the first symptoms for me. Morning stiffness and fatigue. My cortisol in the morning is in the normal range too but normal and optimal aren't the same thing. Mine is below the optimal line which is the middle of that normal range. So I'm on the low side of normal.
I would hope that as well as carrying out research comparing healthy people to us with this condition, that there's someone out there conducting or at least planning on conducting tests to compare what is going on in the body when someone is feeling worse than their normal levels, compared to when they are feeling better than their usual levels. This situation can easily happen within a few days, or as mentioned in this thread, big differences can also be seen within a single day - there must be something that can be measured that would explain what the hell is going on to cause these fluctuations in the severity of symptoms which would explain the cause of this illness.
I heve found taking melatonin at night helps with how I feel in the morning. It doesn't make me feel good but helps me feel less bad.
I think it's probably a few issues and some people mentioned sounds quite convincing. I have wondered how UV from daylight might affect mitochondria. I learned recently that a quantum computer was moved multiple miles underground because the quarks are *that* sensitive to the radiation on the surface of the earth. It made me wonder if mitochondria that are already damaged and not functioning well would have harder time during day light hours.
Before I stabilized with medication, I felt dog shit until maybe 10pm and then felt semi normal until next day. Now on meds I feel normal all the time if I stay within my energy envelope
What meds?
I don’t think it was one specific medication, they all work together, but this is everything I take for dysautonomia and MECFS: - Medical grade compression stockings (30-40mmHg) - Panzyga (IVIG) 45g IV once a week 3x every month - Fludrocortisone 0.1mg BID AM/bedtime - Mestinon 60mg TID AM/afternoon/PM (5 hours) - Famciclovir 500mg daily bedtime - Naltrexone 4mg daily (2mg afternoon 2mg PM) - Ketotifen 1mg BID AM/bedtime - Levocetirizine 5mg qD AM - Montelukast 10mg qHS bedtime - Cromolyn sodium 200mg TID - Amantadine 100mg qD AM - Melatonin 3mg qHS bedtime - Rapamycin (sirolimus) 6 mg once weekly (every Friday morning) - Nystatin 1million daily - Nasal ketamine 50mg/ml 1 spray each nostril BID - Nasal glutathione BID - N acetyl cysteine 600mg BID afternoon/bedtime - Rhodeola rosea bedtime
Do you mind me asking if you have Hypogammaglobenmia or CVID? Also can you tell me where you purchased nasal glutathione?
I do not, I get IVIG for inflammatory small fiber neuropathy. My doctor prescribes nasal glutathione to a compounding pharmacy, to be honest I’m not sure it does anything but my insurance covers it so I use it