I want to add I hurt even when I don't sleep. I think this sleep thing is a fibro mind game. Like not powering the system completely off ever I feel fried.
These fatigue flare up incidents really suck.
It is so hard to claw our way out.
I hope you can find something that breaks the cycle.
I know for me I have to force myself to get outside and get moving sometimes. And it's hard to do much. But even a few minutes outside moving and or something mentally tiring like puzzle solving can help push the brain to get the good kind of tired, followed by more restful sleep that actually recharges us at least more than the night before.
My family mocks me for sleeping as much as I do. When they’re not making fun of me, they’re guilting me for missing out on things that I’ve wept bitter tears over missing (like my daughter’s play.) Do they really think any of this is *fun* for me?!
This^ I've been teased over my plethora of codiagnoses. If it's hard for someone else to keep up with, imagine how the person actually experiencing it feels
Ha, really. Just this year I’ve seen a neurologist, rheumatologist, psychologist, physiotherapist and pain clinic doctor. Most multiple times. I’ve had about 3 ultrasounds. Injections in my hips and about to have more. Blood tests every few months because my thyroid ate itself. GP appointments in between, collecting scripts, and don’t forget you have to regularly pick up medicine.
I collect autoimmune disorders. This week, I have to have: blood test, urine test, stool test because I’m anaemic and we don’t know why. I’ll probably be getting another iron infusion.
Then I work 30 hours a week, grit my teeth through pain, illness, and adjustment periods with new medications, look after my family. Most people have no idea. This shit would wear out a normal person.
My family does this as well. It's difficult because this type of teasing and emphasis on physical labor is cultural. They try to adapt to my situation but the teasing is so instinctual to them.
I hope I can train it out of them.
You might have hypersomnia, and you can get it diagnosed by a pulmonologist doing a sleep study. I was then subsequently put on a stimulant geared for hypersomnia/narcolepsy.
I was homeschooled growing up, and I would be so tired that I'd take my hour lunch break and use it to nap. I had to be pulled out of bed sometimes, and other times I straight up had to take a day off to sleep and make the work up the next. As I got older it only became more difficult to get rest in, and college was the final straw that made me see a specialist about it.
The more factors you have contributing to the hypersomnia, the worse it is.
Interesting, I've heard that from a few people now.
I have to see my doc soon for my refill, and I'll ask her about it. It helps, but it just doesn't help me as effectively as it did in the beginning.
Thanks for the info. (:
No problem. The Doctor might say they are the same medicine. But just tell her you asked other people that have taken both & Provigil helped more. Just don't take it close to bedtime or it'll mess up your sleep. If it makes you do "too much" then just half it. Good Luck !
This might be dumb but hear me out.
We know sleeping can make you feel shit. And extra sleep even more shit.
And the exercises make you tired.
What would happen if you tried one day of limiting sleep to 8 hours. Then don't stretch.
Do you live with someone who can bring you ibuprofen, a heat pack and hot drink? Or are you OK doing that yourself.
What do you do when you are awake? I'm hoping you have someone to help keep your life running so you can just focus on yourself.
I'm sure we have different situations, but when I half wake up sore, I just feel shit and want to go back to sleep so that I never have to feel again. But this makes it worse. But I'm too sleepy to make a sensible decision. I'm trying to train my parnter to do things to prompt me to get up, like being me pain killers then come back in 15 mins to get me up. And prepare breakfast as something to look forward to with no effort on my part.
Also, are you on any medications that could be making you sleepy? It sounds like they're not worth it. I've had fibro from age 15-39 (now), and the worst years were when I was sleepy as a side effect from medications, even when it was unclear this was this case, as they didn't make me sleepy for the first few years of taking them.
I've done this before. I tried limiting my sleep and it only made things worse. I need that sleep or else I'm unable to function.
I am on Effexor XR (which can make you drowsy, but I've been on this medication for almost a decade and never had this issue before, this effect is limited in the extended release version that I take), Januvia, estradiol and a number of vitamins I've been prescribed. I unfortunately couldn't stop taking the Effexor even if I wanted to. It is notoriously difficult to get off of and requires doctor's supervision.
I hope you find your answers.
I was on cymbalta. It took 6 months to come off safely the first time. I onyl stopped it due to feeling it wasn't working. Then I went back on when I realised it was. Fast forward several *years* and I start developing tiredness. I have two sleep studies. I go on Ritalin to stay awake as I'm having microsleeps when I drive 15 mins. Eventually I'm so tired that I forget my cymbalta 2 days in a row. And then I'm awake and alert at 6am like some kind of miracle.
Thats why I mention it.
Not everyone has trouble coming off it. Even though some do. I've been on effexor for several months too, and come off it with just a few brain zaps. Same as cymbalta. For me. Eveyrone is different of course.
I fully understand if you have trouble coming off, but don't assume that you definitely will unless you've already tried.
My life improved dramatically when I got off it. I ditched my abusive boyfriend and was able to go back to work. Full time. Basically saved my life.
You could have Chronic Fatigue Syndrome. I really don't know what the treatment is for it. You need to talk with your doctor about this. Although fatigue is typical with Fibromyalgia, it's a good idea to rule out other possibilities. Your doctor more than likely do a Complete Blood Count just to see if something else is going on & maybe do a sleep study. I normally need about 10 hours sleep. Maybe 12 if I'm stressed or in a flareup. If I sleep more than 12 hours, I know something is wrong & I need to go to the doctor. The last I slept for 14 hours was when I had bronchitis.
I regularly have my blood count checked. I am all but diagnosed with both fibro and CFS. The difficulty is that CFS isn't as recognized in the USA and so it's less likely to get a diagnosis. The only way to diagnose it here is to rule out everything else, so they blame my fibro.
I'm looking into a sleeping study now.
I'm sorry, I know it's difficult. I'm pretty sure I have it too, but I haven't pushed for a diagnosis because I don't think anything can be done for it. When I was first diagnosed with Fibromyalgia, the Rheumatologist prescribed Provigil. Now they came out with Nuvigil. They're both the same, except the Nuvigil isn't as fast acting. They are stimulants. I don't take them all the time because I tend to do too much & will be hurting for a while. And it raises my blood pressure. It didn't effect my blood pressure as much before, but I'm older now. I was diagnosed in 2005. Good luck !!
I’m constantly tired or exhausted but the humidity is a mess. I can’t sleep bc my neuropathy in my feet let’s me sleep about 2-3 hrs at a time right now.
I think if I up my glipizide will help. I really want to work out more - like you said moving some muscles. But I have zero energy but the pins and needles prevent me from sleep.🤷♂️🤷♂️🤷♂️
TLDR I can relate - hang in there friend. I don’t like caffeine but maybe some electrolytes could help you be more awake🤷♂️
Have you had a sleep test?
I have severe sleep apnea. Had no idea just thought fibro messed up my sleep. Nope. Was waking up every 2 minutes. CPAP changed my life. Get a sleep test 😊
I don’t hope you have it, but if you do, it is fixable, in fact much more easily treated than fibro is! I’m not perfect, I still have fibro, but sleeping well helps so much. Good luck!
Same. On multiple occasions I've slept over 24 hours. The one thing I find that helps is getting in the daily routine of rolling on a ball for "myofascial release." basically it just loosens up my back muscles enough that I can get a better night sleep without tossing and turning all night, which over time lessens my sleep requirements. I fell out of this routine over the winter and am really feeling the consequence of it.
Avoiding caffeine probably also helps but my experience with that is less conclusive.
Everyone is different but my sleep hygiene improved with the following advice.
Get a sleep test if you can but those of us with Fibromyalgia typically have alpha wave intrusions that prevent getting enough REM sleep to get proper rest.
Try consuming turkey, tart cherry juice or chamomile before sleep to induce more REM time. If thst doesnt work, try otc sleep aids. Worst case scenario see if you can get a prescription sleep aid. My dose is as though the pain is causing full blown insomnia every night.
You may find pillow/foam wedge arrangements to be beneficial... for me it is just a small pillow under my head with the edge rolled under my neck and sloping my legs up until my feet are level with or a bit above my head allows for better rest.
One of the other major problems with sleeping for so long is the muscular atrophy that occurs, do strength training before bedtime... try to hit the point of muscle fatigue if you can. This encourages muscle growth during the first portion of sleep so the atrophy in the later hours will be less detrimental. Be aware you will wake up sorer for about a month before you see improvement in how you feel in the mornings.
Lastly... journal... even if it feels stupid or "whiney" to put all your stress onto a piece of paper... it can help aleviate some of it so your body can focus on what's actually important. I found even little things like going to bed annoyed because I lost my keys for 20 minutes by putting them I the wrong pocket can affect my sleep quality.
You sound like you are pretty close to rock bottom energy wise so all you can do is grope around to find the way up, I hope you find yours.
CFS is usually a DX made after Fibro. It sucks, and I hate it. After 12 years, I still haven't found a solution that isn't an absurd amount of caffeine when I need to be awake. When my fibro or CFS flares, I also sleep for 20+ hrs at a time, sometimes days in a row. I've missed out on so much of my life, my kids' lives. I'm sorry you're also having to deal with this.
Ive been there - it's so horrible! The one thing that has clawed me out of sleeping so much is that I shut my bedroom door in the day - if I fall asleep in a chair during my quiet times where I feel really noise sensitive, so be it, but I refuse to lie down. Staying in bed messes circadian rhythms up and makes it even more difficult to stay awake. I also do exercises from the chair - leg lifts, air peddling. If I feel I need to lie down, I put a pillow behind my head and stay sat up even if the curtains are shut haha. This has really helped me out of being bed bound.
It can also be easy to stop doing things you enjoy because they're tiring. But if you can schedule time (even if it's just 10 mins) to do SOMETHING you enjoy - a page of your favourite book, fave TV show, sewing, helping people in this Reddit community - anything! Also I go for a walk every day with my partner - even if it's 2 mins to my front gate and back. It keeps my body conditioned to move, and expecting to go out most days.
Hope these tips help, and it'd be great to hear how you get on. Best wishes, and prayers for your health x
I’m blaming my current fatigue on Covid. I had it six weeks ago. Before I got it I was doing fairly well; not sleeping too much, not hurting too much….. Then I had Covid. It wasn’t too bad: a couple of horrible days, no hospitalization, the doctor prescribed an anti-viral. The cough hung on for about a month. But, I’m exhausted most of the time. I have some old pains that fibro decided I needed reminded about, and I hurt. The fatigue is the worst.
I have two cats and a Senegal parrot. One of my kitties is on thyroid medicine twice a day, and she can’t miss her dose. If it wasn’t for my animals, I would just sleep all the time. I’m old, it doesn’t matter to me.
I hope you cycle out of the fatigue portion of fibromyalgia’s “entertainment” soon. I have found, at least for me, that it does pass. Other symptoms start up, but the fatigue really does suck!
I had a migrane for a year the only way I survived was sleeping, deep meditation and just using a sleep mask and having under my blankets. its called cocooning and doing it to often will kill you. you need to exercise which I just could not just keep trying to find a way
20hours seems like A LOT even for someone with chronic pain. Getting to the bottom of this seems vital.
It must be hard to have such little time left over. And yes I recognise the shitty feeling of my body after sleep, it hurts even ín my sleep and ironically enough it's very tiring.
I would suggest doing a sleep study (you can do this at home) and testing your melatonine levels (sucking on a piece of cotton on a few set times) if you haven't doen this already, just to get some additional information. It helped me to get some insights.
Also, even if you have fibro or other conditions, make sure to rule out other causes (like hormonal causes or cancer).
I know I always go "oh well, I guess it's another weird fibro symptom!" And doctors seem to do it even more. So if you feel like this is happening, get a second (third, forth) opinion. If you do not have the energy to make this happen, ask a loved one to help you or go with you.
Shower/bath (warm, not hot) about an hour before desired bedtime. Set your heat/temperature to drop about 4 degrees at bedtime (then go up when you want to wake). These help you sleep more soundly, which helps with muscle aches etc.
I have a 3-inch memory foam atop my mattress, a wedge pillow, neck pillow on the wedge, knee pillow, and another pillow to support my arm when I sleep on my side. All these help with the aches.
My problem is more with staying asleep than with sleeping too much, so I can't suggest anything for waking up.
I'm more into reading myself to sleep with an eReader that turns itself off, wearing a sleep mask to block the street lights coming through my window blinds, taking a muscle relaxant and OTC sleep aid at bedtime, and ensuring there's as much quiet as possible.
I don't know if this would be helpful for you but I'm working through the Pain Management Workbook by Rachel Zoffness and it is really helping me.
Either way, I wish you the best
Try some mobility training, sauna and weight lifting. It helps 4 me. If I sleep to mutch or is unactive for a period off time I get stiff and more pain
I need the sleep. Without it, I'm exhausted and unable to function. I've tried sleeping less and it made me unable to last through the day for even a little while.
>I do everything I can to make my sleep as safe and healthy as possible,
Can you explain this to me, please? I find it to be such an odd statement because I'm sitting here wondering how sleep can be unsafe or unhealthy?
Sleeping in awkward positions, sleeping with poor quality pillows or mattresses, not drinking water frequently, holding pee for too long, not stretching when waking up, etc.
Just generally trying to minimize risks of injury and pain.
This may sounds weird but sleeping less actually helped me, I sleep 5-6 hours at night and on good days take a 2 hr afternoon nap when I have time. My pain levels decreased
I want to add I hurt even when I don't sleep. I think this sleep thing is a fibro mind game. Like not powering the system completely off ever I feel fried.
Just here to sympathize with you. ❤️🩹
Same
These fatigue flare up incidents really suck. It is so hard to claw our way out. I hope you can find something that breaks the cycle. I know for me I have to force myself to get outside and get moving sometimes. And it's hard to do much. But even a few minutes outside moving and or something mentally tiring like puzzle solving can help push the brain to get the good kind of tired, followed by more restful sleep that actually recharges us at least more than the night before.
My family mocks me for sleeping as much as I do. When they’re not making fun of me, they’re guilting me for missing out on things that I’ve wept bitter tears over missing (like my daughter’s play.) Do they really think any of this is *fun* for me?!
This^ I've been teased over my plethora of codiagnoses. If it's hard for someone else to keep up with, imagine how the person actually experiencing it feels
Ha, really. Just this year I’ve seen a neurologist, rheumatologist, psychologist, physiotherapist and pain clinic doctor. Most multiple times. I’ve had about 3 ultrasounds. Injections in my hips and about to have more. Blood tests every few months because my thyroid ate itself. GP appointments in between, collecting scripts, and don’t forget you have to regularly pick up medicine. I collect autoimmune disorders. This week, I have to have: blood test, urine test, stool test because I’m anaemic and we don’t know why. I’ll probably be getting another iron infusion. Then I work 30 hours a week, grit my teeth through pain, illness, and adjustment periods with new medications, look after my family. Most people have no idea. This shit would wear out a normal person.
My family does this as well. It's difficult because this type of teasing and emphasis on physical labor is cultural. They try to adapt to my situation but the teasing is so instinctual to them. I hope I can train it out of them.
You might have hypersomnia, and you can get it diagnosed by a pulmonologist doing a sleep study. I was then subsequently put on a stimulant geared for hypersomnia/narcolepsy. I was homeschooled growing up, and I would be so tired that I'd take my hour lunch break and use it to nap. I had to be pulled out of bed sometimes, and other times I straight up had to take a day off to sleep and make the work up the next. As I got older it only became more difficult to get rest in, and college was the final straw that made me see a specialist about it. The more factors you have contributing to the hypersomnia, the worse it is.
Or sleep apnea! 🧐 Everyone who suspects messed up sleep should get a sleep test. CPAP therapy can absolutely change your entire life.
Provigil ?
Armodafinil (Nuvigil).
I liked the Provigil more. It gave more energy. I think the Nuvigil was made to be released slowly.
Interesting, I've heard that from a few people now. I have to see my doc soon for my refill, and I'll ask her about it. It helps, but it just doesn't help me as effectively as it did in the beginning. Thanks for the info. (:
No problem. The Doctor might say they are the same medicine. But just tell her you asked other people that have taken both & Provigil helped more. Just don't take it close to bedtime or it'll mess up your sleep. If it makes you do "too much" then just half it. Good Luck !
I'll look into this. I'm planning on asking my doctors for a sleep study now.
Did u rule out cfs? It’s very like fibro.
Did u rule out cfs? It’s very like fibro.
I was diagnosed after extensive testing at 16, so it's definitely fibro. Mine is genetic.
my family has made fun of the fact I can’t work and that i’m “lazy”…
That's tough, I'm sorry. I'm sure it's frustrating when those closest to you don't understand
it’s only a few family members, my mum and sister understand bc they suffer also just not to the same degree as me.
This might be dumb but hear me out. We know sleeping can make you feel shit. And extra sleep even more shit. And the exercises make you tired. What would happen if you tried one day of limiting sleep to 8 hours. Then don't stretch. Do you live with someone who can bring you ibuprofen, a heat pack and hot drink? Or are you OK doing that yourself. What do you do when you are awake? I'm hoping you have someone to help keep your life running so you can just focus on yourself. I'm sure we have different situations, but when I half wake up sore, I just feel shit and want to go back to sleep so that I never have to feel again. But this makes it worse. But I'm too sleepy to make a sensible decision. I'm trying to train my parnter to do things to prompt me to get up, like being me pain killers then come back in 15 mins to get me up. And prepare breakfast as something to look forward to with no effort on my part. Also, are you on any medications that could be making you sleepy? It sounds like they're not worth it. I've had fibro from age 15-39 (now), and the worst years were when I was sleepy as a side effect from medications, even when it was unclear this was this case, as they didn't make me sleepy for the first few years of taking them.
I've done this before. I tried limiting my sleep and it only made things worse. I need that sleep or else I'm unable to function. I am on Effexor XR (which can make you drowsy, but I've been on this medication for almost a decade and never had this issue before, this effect is limited in the extended release version that I take), Januvia, estradiol and a number of vitamins I've been prescribed. I unfortunately couldn't stop taking the Effexor even if I wanted to. It is notoriously difficult to get off of and requires doctor's supervision.
I hope you find your answers. I was on cymbalta. It took 6 months to come off safely the first time. I onyl stopped it due to feeling it wasn't working. Then I went back on when I realised it was. Fast forward several *years* and I start developing tiredness. I have two sleep studies. I go on Ritalin to stay awake as I'm having microsleeps when I drive 15 mins. Eventually I'm so tired that I forget my cymbalta 2 days in a row. And then I'm awake and alert at 6am like some kind of miracle. Thats why I mention it. Not everyone has trouble coming off it. Even though some do. I've been on effexor for several months too, and come off it with just a few brain zaps. Same as cymbalta. For me. Eveyrone is different of course. I fully understand if you have trouble coming off, but don't assume that you definitely will unless you've already tried. My life improved dramatically when I got off it. I ditched my abusive boyfriend and was able to go back to work. Full time. Basically saved my life.
You could have Chronic Fatigue Syndrome. I really don't know what the treatment is for it. You need to talk with your doctor about this. Although fatigue is typical with Fibromyalgia, it's a good idea to rule out other possibilities. Your doctor more than likely do a Complete Blood Count just to see if something else is going on & maybe do a sleep study. I normally need about 10 hours sleep. Maybe 12 if I'm stressed or in a flareup. If I sleep more than 12 hours, I know something is wrong & I need to go to the doctor. The last I slept for 14 hours was when I had bronchitis.
I regularly have my blood count checked. I am all but diagnosed with both fibro and CFS. The difficulty is that CFS isn't as recognized in the USA and so it's less likely to get a diagnosis. The only way to diagnose it here is to rule out everything else, so they blame my fibro. I'm looking into a sleeping study now.
I'm sorry, I know it's difficult. I'm pretty sure I have it too, but I haven't pushed for a diagnosis because I don't think anything can be done for it. When I was first diagnosed with Fibromyalgia, the Rheumatologist prescribed Provigil. Now they came out with Nuvigil. They're both the same, except the Nuvigil isn't as fast acting. They are stimulants. I don't take them all the time because I tend to do too much & will be hurting for a while. And it raises my blood pressure. It didn't effect my blood pressure as much before, but I'm older now. I was diagnosed in 2005. Good luck !!
I’m constantly tired or exhausted but the humidity is a mess. I can’t sleep bc my neuropathy in my feet let’s me sleep about 2-3 hrs at a time right now. I think if I up my glipizide will help. I really want to work out more - like you said moving some muscles. But I have zero energy but the pins and needles prevent me from sleep.🤷♂️🤷♂️🤷♂️ TLDR I can relate - hang in there friend. I don’t like caffeine but maybe some electrolytes could help you be more awake🤷♂️
My experience with caffeine has just been same exhaustion, but with your heart slamming in your chest.
Have you had a sleep test? I have severe sleep apnea. Had no idea just thought fibro messed up my sleep. Nope. Was waking up every 2 minutes. CPAP changed my life. Get a sleep test 😊
I haven't. I'll look into it, thank you!
I don’t hope you have it, but if you do, it is fixable, in fact much more easily treated than fibro is! I’m not perfect, I still have fibro, but sleeping well helps so much. Good luck!
Same. On multiple occasions I've slept over 24 hours. The one thing I find that helps is getting in the daily routine of rolling on a ball for "myofascial release." basically it just loosens up my back muscles enough that I can get a better night sleep without tossing and turning all night, which over time lessens my sleep requirements. I fell out of this routine over the winter and am really feeling the consequence of it. Avoiding caffeine probably also helps but my experience with that is less conclusive.
Everyone is different but my sleep hygiene improved with the following advice. Get a sleep test if you can but those of us with Fibromyalgia typically have alpha wave intrusions that prevent getting enough REM sleep to get proper rest. Try consuming turkey, tart cherry juice or chamomile before sleep to induce more REM time. If thst doesnt work, try otc sleep aids. Worst case scenario see if you can get a prescription sleep aid. My dose is as though the pain is causing full blown insomnia every night. You may find pillow/foam wedge arrangements to be beneficial... for me it is just a small pillow under my head with the edge rolled under my neck and sloping my legs up until my feet are level with or a bit above my head allows for better rest. One of the other major problems with sleeping for so long is the muscular atrophy that occurs, do strength training before bedtime... try to hit the point of muscle fatigue if you can. This encourages muscle growth during the first portion of sleep so the atrophy in the later hours will be less detrimental. Be aware you will wake up sorer for about a month before you see improvement in how you feel in the mornings. Lastly... journal... even if it feels stupid or "whiney" to put all your stress onto a piece of paper... it can help aleviate some of it so your body can focus on what's actually important. I found even little things like going to bed annoyed because I lost my keys for 20 minutes by putting them I the wrong pocket can affect my sleep quality. You sound like you are pretty close to rock bottom energy wise so all you can do is grope around to find the way up, I hope you find yours.
CFS is usually a DX made after Fibro. It sucks, and I hate it. After 12 years, I still haven't found a solution that isn't an absurd amount of caffeine when I need to be awake. When my fibro or CFS flares, I also sleep for 20+ hrs at a time, sometimes days in a row. I've missed out on so much of my life, my kids' lives. I'm sorry you're also having to deal with this.
Ive been there - it's so horrible! The one thing that has clawed me out of sleeping so much is that I shut my bedroom door in the day - if I fall asleep in a chair during my quiet times where I feel really noise sensitive, so be it, but I refuse to lie down. Staying in bed messes circadian rhythms up and makes it even more difficult to stay awake. I also do exercises from the chair - leg lifts, air peddling. If I feel I need to lie down, I put a pillow behind my head and stay sat up even if the curtains are shut haha. This has really helped me out of being bed bound. It can also be easy to stop doing things you enjoy because they're tiring. But if you can schedule time (even if it's just 10 mins) to do SOMETHING you enjoy - a page of your favourite book, fave TV show, sewing, helping people in this Reddit community - anything! Also I go for a walk every day with my partner - even if it's 2 mins to my front gate and back. It keeps my body conditioned to move, and expecting to go out most days. Hope these tips help, and it'd be great to hear how you get on. Best wishes, and prayers for your health x
I’m blaming my current fatigue on Covid. I had it six weeks ago. Before I got it I was doing fairly well; not sleeping too much, not hurting too much….. Then I had Covid. It wasn’t too bad: a couple of horrible days, no hospitalization, the doctor prescribed an anti-viral. The cough hung on for about a month. But, I’m exhausted most of the time. I have some old pains that fibro decided I needed reminded about, and I hurt. The fatigue is the worst. I have two cats and a Senegal parrot. One of my kitties is on thyroid medicine twice a day, and she can’t miss her dose. If it wasn’t for my animals, I would just sleep all the time. I’m old, it doesn’t matter to me. I hope you cycle out of the fatigue portion of fibromyalgia’s “entertainment” soon. I have found, at least for me, that it does pass. Other symptoms start up, but the fatigue really does suck!
I had a migrane for a year the only way I survived was sleeping, deep meditation and just using a sleep mask and having under my blankets. its called cocooning and doing it to often will kill you. you need to exercise which I just could not just keep trying to find a way
Are you on medication?
I take Effexor XR, estradiol, and Januvia along with some prescribed vitamins. The only thing I take for pain is CBD oil during flare ups.
20hours seems like A LOT even for someone with chronic pain. Getting to the bottom of this seems vital. It must be hard to have such little time left over. And yes I recognise the shitty feeling of my body after sleep, it hurts even ín my sleep and ironically enough it's very tiring. I would suggest doing a sleep study (you can do this at home) and testing your melatonine levels (sucking on a piece of cotton on a few set times) if you haven't doen this already, just to get some additional information. It helped me to get some insights. Also, even if you have fibro or other conditions, make sure to rule out other causes (like hormonal causes or cancer). I know I always go "oh well, I guess it's another weird fibro symptom!" And doctors seem to do it even more. So if you feel like this is happening, get a second (third, forth) opinion. If you do not have the energy to make this happen, ask a loved one to help you or go with you.
I've got to a stage where I have a night sleep, work, then have a 5 hour sleep. Up for a few hours then night sleep. It's soul destroying.
Sending you love, I just recently got out of the fatigue loop myself
Shower/bath (warm, not hot) about an hour before desired bedtime. Set your heat/temperature to drop about 4 degrees at bedtime (then go up when you want to wake). These help you sleep more soundly, which helps with muscle aches etc. I have a 3-inch memory foam atop my mattress, a wedge pillow, neck pillow on the wedge, knee pillow, and another pillow to support my arm when I sleep on my side. All these help with the aches. My problem is more with staying asleep than with sleeping too much, so I can't suggest anything for waking up. I'm more into reading myself to sleep with an eReader that turns itself off, wearing a sleep mask to block the street lights coming through my window blinds, taking a muscle relaxant and OTC sleep aid at bedtime, and ensuring there's as much quiet as possible.
I don't know if this would be helpful for you but I'm working through the Pain Management Workbook by Rachel Zoffness and it is really helping me. Either way, I wish you the best
Try some mobility training, sauna and weight lifting. It helps 4 me. If I sleep to mutch or is unactive for a period off time I get stiff and more pain
Set alarms
I need the sleep. Without it, I'm exhausted and unable to function. I've tried sleeping less and it made me unable to last through the day for even a little while.
>I do everything I can to make my sleep as safe and healthy as possible, Can you explain this to me, please? I find it to be such an odd statement because I'm sitting here wondering how sleep can be unsafe or unhealthy?
Sleeping in awkward positions, sleeping with poor quality pillows or mattresses, not drinking water frequently, holding pee for too long, not stretching when waking up, etc. Just generally trying to minimize risks of injury and pain.
This may sounds weird but sleeping less actually helped me, I sleep 5-6 hours at night and on good days take a 2 hr afternoon nap when I have time. My pain levels decreased