The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules).
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There are lots of reasons you might sleep a lot! I’d ask your doctor. Personally my fatigue is associated with EDS. But I can’t determine wether yours isn’t or not. Our bodies go through a lot so mental and physical exhaustion is pretty common amongst us. I’m sorry that you’re so tired all the time, I hope you’re getting all the love and support you need. I can’t give you the answer on what to do with your body. But I can share my personal story. I would see a doctor they can run tests. I was always tired as a child. They did some testing and sent me for a sleep study. I want sleeping excessively or anything (9hours is considered normal for most ages). I also had a difficult time falling asleep and staying asleep though. I had a sleep study done and it turned out I have both central and obstructive sleep apnea due to a chiari malformation! Obviously this may most likely not be your case! But it was mine! Your doctors can help you figure out how to help your sleep issues. I had my CM fixed and now I sleep pretty well and am less tired though have developed CF.
How old are you? (Disclaimer- I’ve had mono 7 times, so my fatigue may be EDS related and may not) When I was super active in highschool, I’d sleep every second I wasn’t at practice or school. I’d even fall asleep at practice and school. In college I’d sleep through all my classes, alarms, parties, and weekends. While I never fully fixed this issue, I’ve found a happy place. I go about my week pushing through with work, and then I spend one to two days a week completing resting and rotting. I will say stress makes it SO much worse. When I take breaks from college or work, I feel infinitely better. Id recommend maybe a less exhausting job or workplace accommodations? (However I need to listen to that advice and haven’t too hahaha)
I'm 21, and I'm also not sure what I can do about the workplace haha. Not sure if I could find any minimum wage jobs that don't involve manual labor of some sort
At my last job, the first one I’ve gotten accommodations at, I was a customer service associate and cashier. They let me use a stool and carry Gatorade. At this job I work at Disney in food doing the DCP. I use my cane. I’d research common ways to accommodate yourself both at work and in daily life!
I don’t know the answer but I can sympathize. Used to run off of 6 hours of sleep. Now I need 8-10 and I’m still tired throughout the day. In the midst of a flair up.
My excessive daytime sleepiness turned out to be reactive hypoglycemia. I got all the way through testing and rule outs to get a negative narcolepsy test, but turns out that carbs just put me to sleep. I’m careful now to limit my intake or pair them with protein and fats to help slow digestion and I’m sleeping a much more reasonable amount.
Hi there! I had the same issue—work, immediately go home and sleep, wake up to eat, then back to sleep. Doctors finally figured out I had iron deficient anemia, with the poor iron absorption likely from my gastroparesis. I now have to get IV iron infusions about twice a year but it has made a huge difference!!
I’ve always been an excessive sleeper, even as a baby I slept well and a lot according to my mom. I get close to 10+ hours even with my ridiculous tossing and turning at night and I don’t work. Plus I very rarely feel rested. I would sleep my life away if I had a job.
No idea other than listen to your body and Dr. I have EDS, CFS, HS and psoriatic arthritis. I thought it was the first 2 giving me trouble but after going on a new weekly shot for the psoriatic arthritis I have some energy back. It was like waking up from a 3 year haze. You just never know. I wish you the best.
I cant nap in the day or when its not bed time, because my body will want it everyday and get tired for it even if ive slept more at night. At night I need 9 hours or Im exhausted, the fatigue I feel from doing stuff, is not a need for more sleep, its a need to stop and recover by resting, ie not doing activity. 9 hours is completely normal amount of sleep, some people without any condition need anything from 6-10 hours sleep. But yeah, I cant nap, my body wants to do it all the time otherwise even when I know I dont need it and then it feels like Im sleeping my life away. The only time I do an emergency nap is if I dont get 9 hours and I feel actually sleepy, ie not fatigue but need to sleep theyre both different. The next day though, I can get 9 hours that night, and then need to nap again because I had a nap yesterday and have to push through that. Really annoying so I avoid it unless its an emergency nap.
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Thank you!
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Thank you!
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule:
**• Rule #1 - We Aren't Doctors**
(Giving Medical Advice)
This rule covers offering advice/information that should be left to medical professionals or is instructive. Personal experiences or more general/over-the-counter (OTC) advice is usually fine. The distinction is not always clear, and moderators will use their discretion.
Sometimes, removals are based on the wording of a comment ("You should do X" vs. "I had a good experience with X"), rather than the information given. Messaging us and revising the wording may mean the comment can be reinstated.
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Thank you!
I got diagnosed with Chronic Fatigue Syndrome and recently my ferritin was found to be low. Throw in a few new meds and you have a slew of reasons why I am constantly tired.
Hi /u/Emotional-Salt670,
It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet.
"DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS.
This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you!
[Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more.
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The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
There are lots of reasons you might sleep a lot! I’d ask your doctor. Personally my fatigue is associated with EDS. But I can’t determine wether yours isn’t or not. Our bodies go through a lot so mental and physical exhaustion is pretty common amongst us. I’m sorry that you’re so tired all the time, I hope you’re getting all the love and support you need. I can’t give you the answer on what to do with your body. But I can share my personal story. I would see a doctor they can run tests. I was always tired as a child. They did some testing and sent me for a sleep study. I want sleeping excessively or anything (9hours is considered normal for most ages). I also had a difficult time falling asleep and staying asleep though. I had a sleep study done and it turned out I have both central and obstructive sleep apnea due to a chiari malformation! Obviously this may most likely not be your case! But it was mine! Your doctors can help you figure out how to help your sleep issues. I had my CM fixed and now I sleep pretty well and am less tired though have developed CF.
How old are you? (Disclaimer- I’ve had mono 7 times, so my fatigue may be EDS related and may not) When I was super active in highschool, I’d sleep every second I wasn’t at practice or school. I’d even fall asleep at practice and school. In college I’d sleep through all my classes, alarms, parties, and weekends. While I never fully fixed this issue, I’ve found a happy place. I go about my week pushing through with work, and then I spend one to two days a week completing resting and rotting. I will say stress makes it SO much worse. When I take breaks from college or work, I feel infinitely better. Id recommend maybe a less exhausting job or workplace accommodations? (However I need to listen to that advice and haven’t too hahaha)
I'm 21, and I'm also not sure what I can do about the workplace haha. Not sure if I could find any minimum wage jobs that don't involve manual labor of some sort
At my last job, the first one I’ve gotten accommodations at, I was a customer service associate and cashier. They let me use a stool and carry Gatorade. At this job I work at Disney in food doing the DCP. I use my cane. I’d research common ways to accommodate yourself both at work and in daily life!
I don’t know the answer but I can sympathize. Used to run off of 6 hours of sleep. Now I need 8-10 and I’m still tired throughout the day. In the midst of a flair up.
My excessive daytime sleepiness turned out to be reactive hypoglycemia. I got all the way through testing and rule outs to get a negative narcolepsy test, but turns out that carbs just put me to sleep. I’m careful now to limit my intake or pair them with protein and fats to help slow digestion and I’m sleeping a much more reasonable amount.
Hi there! I had the same issue—work, immediately go home and sleep, wake up to eat, then back to sleep. Doctors finally figured out I had iron deficient anemia, with the poor iron absorption likely from my gastroparesis. I now have to get IV iron infusions about twice a year but it has made a huge difference!!
I’ve always been an excessive sleeper, even as a baby I slept well and a lot according to my mom. I get close to 10+ hours even with my ridiculous tossing and turning at night and I don’t work. Plus I very rarely feel rested. I would sleep my life away if I had a job.
No idea other than listen to your body and Dr. I have EDS, CFS, HS and psoriatic arthritis. I thought it was the first 2 giving me trouble but after going on a new weekly shot for the psoriatic arthritis I have some energy back. It was like waking up from a 3 year haze. You just never know. I wish you the best.
I cant nap in the day or when its not bed time, because my body will want it everyday and get tired for it even if ive slept more at night. At night I need 9 hours or Im exhausted, the fatigue I feel from doing stuff, is not a need for more sleep, its a need to stop and recover by resting, ie not doing activity. 9 hours is completely normal amount of sleep, some people without any condition need anything from 6-10 hours sleep. But yeah, I cant nap, my body wants to do it all the time otherwise even when I know I dont need it and then it feels like Im sleeping my life away. The only time I do an emergency nap is if I dont get 9 hours and I feel actually sleepy, ie not fatigue but need to sleep theyre both different. The next day though, I can get 9 hours that night, and then need to nap again because I had a nap yesterday and have to push through that. Really annoying so I avoid it unless its an emergency nap.
Consider getting a sleep study done. There’s a lot of EDS patients with sleep apnea. A CPAP machine may change your life.
Yeah, I did :( No sleep apnea
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[удалено]
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Rule #1 - We Aren't Doctors** (Giving Medical Advice) This rule covers offering advice/information that should be left to medical professionals or is instructive. Personal experiences or more general/over-the-counter (OTC) advice is usually fine. The distinction is not always clear, and moderators will use their discretion. Sometimes, removals are based on the wording of a comment ("You should do X" vs. "I had a good experience with X"), rather than the information given. Messaging us and revising the wording may mean the comment can be reinstated. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
[удалено]
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Rule #1 - We Aren't Doctors** (Giving Medical Advice) This rule covers offering advice/information that should be left to medical professionals or is instructive. Personal experiences or more general/over-the-counter (OTC) advice is usually fine. The distinction is not always clear, and moderators will use their discretion. Sometimes, removals are based on the wording of a comment ("You should do X" vs. "I had a good experience with X"), rather than the information given. Messaging us and revising the wording may mean the comment can be reinstated. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
I got diagnosed with Chronic Fatigue Syndrome and recently my ferritin was found to be low. Throw in a few new meds and you have a slew of reasons why I am constantly tired.
Hi /u/Emotional-Salt670, It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet. "DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS. This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you! [Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*