Poll: Napping With Fibromyalgia & Chronic Fatigue Syndrome

I absolutely agree with you, Adrienne!

I sleep when I can, for however long as I can. Regardless of how hard I try to sleep “normal” hours, I inevitably end up being awake all night. If I manage to sleep during the night, eventually I’ll be up all night again in no time. If I force myself to stay awake, I get punished by not being able to stay asleep or to stay awake for days at a time. Up for an hour or two, asleep for an hour or two, rinse, repeat. Insomnia for days at a time (awake for 4 days is my current record), followed by sleeping for days at a time. There is nothing remotely normal about my sleeping patterns. And no amount of sleep is refreshing either lol

So I tend to listen to my body. It seems to know best. Sleep when I can because I never know if I’ll get 1 hour or 8 (rarely that many hours consecutively). It’s so frustrating!

What I really dislike is when someone says “force yourself to stay awake so you can sleep during regular hours”. As if I haven’t tried everything under the sun already? As if it’s just *that* easy to adjust my sleeping schedule so I’ll sleep normally? I haven’t slept normally in probably 20 years, maybe longer. I think that I’m now paying the price, it’s all catching up to me lol

There’s no shame in taking a nap! If that’s what it takes to feel as rested as possible, do it. I don’t envy anyone who has FM/CFS and kids. I can barely manage myself without my hubby’s help, I can’t imagine having kids too!

I so agree with you, and I really get so angry when so-called experts give us their opinion when they no nothing of our condition. I suffer with CFS and insomnia is NEVER a problem for me. I am always tired, and have found that one of the best ways to make me feel better is to nap – EVERY afternoon! I usually go down about 2 o’clock and sleep til around 5. I hate having this time stolen from me every day, but it is the only way I can function. I then have no problem going to sleep at nine or ten at night, and sleeping through til 7 or 8 in the morning. I guess I have to make up in quantity what I am lacking in quality. If I don’t nap,it is only a short while before I am in full “crash” mode.

I’m lucky enough to have an office with the door at work. If I’m tired or didn’t sleep well, I shut (and lock) my door, put on some relaxing music (Sigor Ros) and nap. I ALWAYS feel better after. If the weather’s nice and I’m not tired, I walk at the local park.

Sometimes I even nap right after breakfast before I go to work! One of my favorite quotes is:

“Dear sleep, I know we had problems when I was younger, but now I love you” Yes I do sleep, yes I do!

I used to feel guilty for taking naps but not any more! I had been napping from 12pm to 1 or 2 pm but since I started taking D-riboze, I don’t get sleepy until 2 or 3. I nap most days and then I’m productive again when I wake up. It’s kinda like having 2 mornings to get things done!
I go to bed around midnight and wake between 5am and 9am. It really depends on what I did the day before, if I wore myself out or just took it easy.

I had a doctor who scolded me for taking naps and said that is exactly why I was having trouble sleeping through the night. (I dumped her) I knew that was BS because I tried NOT napping when I first was diagnosed with FMS. It made no difference in my night time sleep schedule. After 6-7 years of this illness, I have decided to listen to my body and do what it says because otherwise, it will make me miserable! Anyone else feel like their body is a traitor? LOL !!

I am glad some of you have the option to take a nap or even rest while at work. Working in a factory, I don’t have that option and frankly I am running out of options.

Ooops, misspelled D-ribose

Being retired, I am free to do what my body wants. What it wants is to sleep in the morning until I wake up. The three hours of sleep I get between 7-10 a.m. are usually the best of the whole night!

I ‘m so tired all day but am unable to nap. Average 5-7 hours a night but very broken sleep.

I take a pre-emptive rest break every afternoon, sometime between 12 and 6. For some years I slept for at least an hour, but as I’m improving, I sleep maybe only twice a week, and not necessarily so long. I just listen to my body.

May I recommend looking at sleepio.com for very useful advice and a course on sleep that goes beyond what any other course on sleep has done for me. I now can sleep throughout the night on a fairly regular basis. Only when I’ve gone outside my “energy envelope” and am running on adrenaline (tired but wired) is my sleep bad again. Should you want to know more, there is a group of helpful students there who have CFS/ME.

When I was first diagnosed I learnt how important sleep was, and bought a CD player to listen to relaxing music and information instead of getting up and going on the computer. Apparently it emits a blue light similar to day light, so it is harder to go back to sleep.

Dr Charles Lapp says that quiet rest is almost as good as sleep.

Apparently short flat rests with meditation are very powerful as well, as I find between 5-15 minutes on my back with my eyes closed is refreshing.

I listen to my body for sure. My heart goes out to those who have to work and can’t do that. That is one of the many reasons I had to give up my job. I too have told others and even myself early on, don’t take a nap, get up early, so I would sleep at regular nighttime hours. Well, I learned real quickly that even if I get up at 3:00 a.m. , I still have difficulty falling asleep before 1:00 or 2:00 a.m. (sometimes 3:00 a.m.). My tiredness is all day, but that sleepy feel is bad sometimes around 4:00 in the afternoon. And, of course, that unrefreshed sleep is always there right when I wake up….it is just awful. Thankfully, I have figured out how to manage it the best way I can. It still gets old that is for sure! {{{GENTLE HUGS TO ALL OF YOU!}}}

I sleep only about 5-6 hours a night now and then longer. I hate it when I wake at 4:00 and fall asleep again at 6:00. I don’t nap because it takes me so long to wind down, after pushing myself to get going in the morning. If I would actually nap I am one of those people who feel groggy and head-achy when I wake up. I wish I could fall asleep in seconds like my husband and feel better after. If I sit and doze a little it helps though.

I nap during the day if i don’t i can become very disorient and walk into things,, like doors, walls you name it ill walk into it.
recently i brought a security cam put it in my room to test it, it only records when it senses movement well i move every 10 to 15 mins all night i never go into a real sleep so at least i know why i wake up sooo tired.

For the first several years of my FMS struggle I had to nap every day, sometimes more than once! Now that I’ve got it mostly under control (blessed acupuncture!) I rarely need to take a nap. However, I do still need to use my weekends for catch-up sleep (which is something still being hotly contested by the experts). If I do not get 10-12 hours of sleep every night, I need to make up for it by sleeping more on the days when I can or I flare up. It is so difficult to get the “normal” people around me to understand the concept.

I agree with you Adrienne, perhaps the advice to never nap works for “regular folks” with “regular sleep issues” but CFS/ME is a different beast altogether. I find that if I don’t nap, I get overtired, overwired, and over sore which prevents me from sleeping at night. Taking a nap, or even a rest period, helps replenish me for the second half of the day and gets me through until bedtime and I am not overly tired or sore and call often fall asleep okay.
A mid-day nap, or rest period, along with the practicing the energy envelope method, are two of my top techniques for trying to manage this horrible illness.
Im tired of hearing that “no nap” advice for people with CFS/ME – sick and tired of it I say!

I was surprised to read that most people with CF/FM nap, but no one mentioned that they tend to sleep in till noon or later. This might be slightly off topic, but I tend to sleep in or stay in bed, rather than take naps later in the day. If I wake up early I may go back to bed after breakfast or have a nap in the afternoon or evening.
I seldom feel rested even if I sleep in, but especially if I have to get up early for an appointment etc. I try not to stay up late at night, but sometimes get caught up watching a movie or on the computer.
I have mild sleep apnea, so I know I need at least 12 hrs of rest to get the equivalent of 8 hrs sleep. I toss and turn a lot through the night, especially when I am trying to get back to sleep.
I also have Bipolar Disorder, so sometimes my nights and days get flipped, so that I sleep more during the day than at night. I occasionally have nights where I can not sleep at all and days when I can’t seem to get enough sleep even if I sleep most of the day.

I couldn’t have said it better myself. The best rule of thumb for all of us is listen to our bodies, if you need rest and can get it, do it! If you don’t, then don’t! Thanks for sharing this! Was so happy to see that I could agree! Love and hugs as always! xoxox <3

There are days when I really do need to nap but if I do I cannot sleep at night. I have to have a strict sleep routine every night and stick to it faithfully or I won’t sleep for days. I wish I could sleep better but it is what it is I guess. If I don’t sleep, the fibromyalgia pain and fog is much worse.

Before having a sleep specialist, and taking Xyrem, (sodium oxybate) I was bedridden, couldn’t even read the newspapers or books. I just stayed in bed with pain meds, no quality of life at all. Up at night, and then, a sleep study found that I don’t ever get stages 3 & 4 of sleep. Always superficial rest. Waking up stiff and tired.

Now, the last 6 years I’ve been taking Xyrem and getting deep and restorative sleep, also with a Vpap machine. I forget to breathe and also have obstructive sleep apnea. Now I can lead a little life. Most mornings I can exercise, go to classes at my community center, Pilates, Yoga, Feldenkrais, bicycle and treadmill. A little weight machines. Every afternoon I still need my rest and I lie down till dinner. 3-6 pm. I watch a movie if I can find one.

I even nap a little during the PBS Newshour, don’t tell them. They do put me to sleep, though. Without sleep there was no life in me or for me, with good sleep I live a nice quality of life, can travel to see grandkids, and can get out to movies and lectures.

I very seldom nap, not because I am not exhausted but because when I do I wake up feeling even worse. I feel like I am hungover and drugged. I hate the feeling. The benefits of sleeping are outweighed by the way I feel afterwards. I wish it was different.

I nap if I need to and that is often in the morning after the kids leave for school. If I don’t, if I fight it then it is a guarantee that I won’t be able to sleep that night. If I don’t sleep at night then I stop functioning. I have found though that by treating my CFS like mitochondrial failure is a problem for me (eg CQ10 will start d-ribose very soon) that I am making gains and while I need to lay down and close my eyes to rest, I’m not actually napping right now.

I nap as often as I can, but with 2 toddlers and a 6 year old, that’s uncommon. I do better when I can nap, though. Much better.

I take sleep whenever it comes, and it is mostly during the day. I retired this year, and I have finally stopped worrying about my sleep habits. Now that summer is here, and I do not the Heat…I sleep almost ever afternoon, and sometimes in the morning.

I agree…if you are falling down exhausted it is time to rest no matter what time of day it is!

I almost always lay down for a rest every day. I don’t often fall soundly asleep. I read and get sleepy and then get into more of a meditative doze. After an hour or so, I feel like I can make it through the rest of the day.

I recently was on a long road trip. Driving alone, I didn’t have the option of napping and am pretty exhausted and wake up disoriented. It will take awhile to get straight again.

I say nap on!

Absolutely! There are days I know the fatigue is coming and/or my supervisor sees it coming. I have tried to drive home, but have almost wrecked. Now they call my family to come pick me up. I go home and crawl into bed, a lot of times with my clothes still on because I am too fatigued to worry about it. Honestly, there are no other options to deal with it. We tried Nuvigil, but its outrageously expensive – one of the drugs that proves pharmaceutical companies care more about money than helping truly ill patients.

Oh naps, sweep naps, how I love thee!

I love weekends, because I get to nap long epic naps that start with me snuggling in bed and reading for an hour, and then sleeping for another hour.

I sometimes sleep well at night, sometimes do not. It doesn’t matter how I am sleeping, I can always get a decent nap in, so I can’t miss it. I do not find that the naps make it more difficult to sleep, but I do know that they allow me to do something with my family in the evenings instead of heading to bed right after dinner.

I am like a previous poster who said that the weekends were when she could catch up on rest. Naps are just scheduled in on the weekends for me, and our family does not make plans that would interfere with mom’s nap time.
Vacations, woot I get to nap every day!

I would rather get up really late in the morning, or even around noon, than take a nap. I always feel WORSE after a nap, and end up wishing that I had just stayed up and dealt with whatever was making me want to sleep. This is always the lesser of two evils for mel

I would rather get up really late in the morning, or even around noon, than take a nap. I always feel WORSE after a nap, and end up wishing that I had just stayed up and dealt with whatever was making me want to sleep. This is always the lesser of two evils for mel

I’ve had trouble sleeping for most of my life, and it got much worse with fibro and CFS. Fortunately an article in Fibromyalgia Aware talked about a sleep disorder, Intrusive Alpha. During the periods of deepest sleep, people with this disorder experience spikes of alpha state, which is a wakeful state. I asked my sleep doctor to look for this, and she prescribed Xyrem, which has helped immensely with obtaining restful sleep. But after two and a half years of restful sleep, I’m finding I have a need to nap most days, in addition to my regularly scheduled preemptive rests. Just one nap, and generally for less than forty minutes, but it’s become pretty much essential.

I wouldn’t call it napping, it’s more like comatised…and even then, I feel worse than I did before I gave into the napping.

I find myself nodding off at work frequently, even when I think I had a good sleep the night before. I do struggle with sleep and feeling rested. Nothing really helps.

I wish I could nap. I would love it.

I listen to my body and it is different every day depending on the day before’s activity. If I need a nap, I will take it and sometimes I just lie there and relax or watch TV and do not always fall into a deep sleep. I think it was the key to getting well again from the acute phase of my chronic fatigue/Epsterin Barr. Mentally I still struggle with the idea of taking a nap, and I guess it is because i like to be productive every minute of the day. But, I feel fortunate that I can take a nap or sleep late in the morning because my sleep really is the most important factor in how I feel. Susan

For those of you that cam actually fall asleep durimg the day..go for it…if i didnt have horrible chromic insomnia i would sleep all day and night… for those of you that can sleep whenever you want you are very lucky take advantage of it

I used to nap daily — and for several hours. After taking a number of steps to improve my health, I am now to the point where I only nap once every two to four weeks and usually only after something that has triggered a flare or, in many cases, to ward one off.