Recently diagnosed with fibromyalgia (August 2019) and have been attending a fibromyalgia clinic every Tuesday for a couple of weeks and I have notice a couple of things that make me question my condition - I understand that everyone is different and it especially doesn't help that I am the only person I'm the group under 65 - however every member of the group and anyone else I have spoken to with fibromyalgia have said that they struggle to sleep and barely get any sleep - I on the other hand get a good 8 1/2-9 hours sleep a night and could sleep even more than that - sleep doesn't seem to be a problem with me - is it possible that I'm just different or is there something else going on?
Sleepaholic with fibromyalgia - Fibromyalgia Acti...
Sleepaholic with fibromyalgia
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Elephantwhisperer
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35 Replies
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It is more than possible hun; I never use to have issues with sleep when I was first diagnosed. The problem with fibro is effects so many people in so many different ways that although we all share symptoms we normally differ too! Make the most of the sleep hun - it’s a swear word to most of us now 😂 xxx
Hahaha, sleeppppppppppp 🙃🤯😢
You might think you are getting good quality sleep but do you suffer with fatigue during the day or periods of exhaustion. x
I do get serious fatigue - however I have recently gotten a type of fit bit to help measure my sleep (I know they aren't 100% accurate however it seems that most nights I'm getting 3-4 hours of deep sleep, 3 hours of light sleep and the rest REM sleep - and most nights I don't wake up throughout the night at all
By 4pm in the afternoon I'm knackered and force myself to stay awake until 8 when it's a bit more normal to sleep lol
Yes but the fit bit do not actually measure your brainwave pattern like you would have measured in a sleep clinic to get a detailed picture. I know the fit bit are ok but, there's a but somewhere. x
Wow 😲 3-4 hours of deep sleep!? I can’t get 30 minutes of deep sleep. Most of my sleep is light sleep and I wake up frequently throughout the night. REM sleep is usually under 25% of my night. Last night I got 22 minutes of REM if I remember correctly. I have a Fitbit and am still learning my way around the app. I discovered it has a social media site which people use it as a dating app. Are you on oxygen at night by chance? There is a reason I ask.
Nope, no oxygen! I understand I'm quite lucky with the sleep - which is why I'm questioning if there is something different going on
I was on oxygen for about 5yrs and went on a CPAP several months back for mild sleep apnea. During the time I was on the oxygen I get better quality sleep that the CPAP just isn’t giving me. Other people report improvement in day time sleepiness, fatigue, fog etc. well all this got worse being on the CPAP. I use it every night sooo I will address this with the sleep doctor. Do you have wide spread chronic pain in all 4 quadrants of your body lasting at least 3-6 months along with fatigue and fibro (brain) fog and other causes have been ruled out? It is quite the extensive process going through all those tests and doctors to rule out other causes.
Every second of the day!! X
Yes!!!
Yes, I definitely know what you mean!!
Please may I have some of your sleep. I can go for days without
I am the same. My fibro makes me so tired. I get too much sleep sometimes. Glad to know I'm not the only one.
I'm the same...sleep for 8+ hours a night, and then at least 2 hours in the day (sometimes 2 x 3 hour naps!).
I'm also questioning my diagnosis.
Maybe we have CFS and Fibro? I've read that that's possible.
Yes this is what I am thinking - because so many fibro people mention no sleep - and even when I'm in my fibro clinic they say that because of the lack of sleep it causes us to experience more pain - so I just don't feel that part matches me
I just wanted to say to everyone replying that they don't get any sleep - I am really sorry about that and if I could share some of mine out I would because I have barely any life at the moment - it feels as if all I do is sleep, meds, work - I have no work life balance
You’re so lovely. Bless you! Xxx
I suffer both ways... I have times where I am constantly tired and sleep a good 9+ hours and then another time I feel tired, fall asleep for about an hour then spend the night awake... Watching the hours pass, Either way, drives my husband crazy!
Yesterday I had to come and lay down with fatigue, aching neck and shoulders along with painful feet, especially my soles.
I went to sleep at 11pm and I have slept through until 7.30am ~ do I feel all refreshed and ready to jump up and go... 😏😘 Unfortunately my feet/soles feel so painful I can't believe it, last night the only way I could explain the pain was a feeling of bedsore pain, they felt painful on the heels against the sheets 😡 this morning they are still hurting but more a burning sensation under my toes 🤔😏
Sorry if I've diversed slightly.
I'm with you on 8+hours of sleep... Regularly sleep 9-10 hours.. But totally un refreshed so exhausted from the time I wake up. So I try to restrict myself to no more than 9 hours as I'd be sleeping my whole life away!
Unrefreshed sleep is as bad as not sleeping.....
I’m the same I get about 6-7 hours with medication,
because I would not sleep with out it 😴,if I took it too early I would be awake in the middle of the night!
When I wake I feel very lethargic almost as if I’ve just been lying in bed and I haven’t slept at all I struggle to open my eyes ,but I have to get up with my grandson,to se him off to school 😴😴😴
Sending gentle hugs .......
Have you had your thyroid checked?
Karen
Yes that was one of the first things checked
And what were your results?
Everything was fine - only abnormal thing is high plasma viscosity
Swear word 🥱🥱🥱
My sleep pattern is variable. I have weeks when I can only sleep 4-5 hours and sometimes I sleep 10 -12 hours. When I sleep less my pain is worse though.
I can! Right now you’re thinking I’ll send Danielle some chocolate chip cookies 😉 xxx
Cookies with tea 😍
Never going to happen!! Xx
I’m recently diagnosed and I sleep and could sleep all day! I can get a good 9hrs sleep and still be pooped. A few days ago I did that, went to work and only did half a day, didn’t do much at work and I was exhausted when I left! As people I have said, I wonder if I think I’m getting great sleep but actually it’s rubbish quality sleep? I just fell asleep on the sofa (2nd time this week) which is totally unheard of. It used to be a sign my vitamin d levels had dropped but I’m on a decent maintenance dose so I know it’s not that. I recently got a sunrise/sunset alarm clock and it’s definitely helped me nod off which I struggled with, and it’s kinda helped wake me up although I rely on a super annoying alarm that makes me solve maths problems before it turns off 😂
I sleep 7-8 hours most nights, Fitbit generally says my sleep score is ‘good’, but I can’t remember the last time I felt refreshed!
I tend to go to bed at 930pm and try and keep myself awake until 10pm but I seem to wake up about every 3hrs but can drop off to sleep straight away. But I have trouble trying to get out of bed in the morning and can't normally get up until 10ish and still feel tired/ shattered the whole day I think this is because I'm in constant pain and the body tires from fighting against it all day.
😂😂😂😂
I would sleep around the clock, my meds make me sleepy and Iv tried cutting down but without success,I depend on an alarm or my hubby to wake me, it’s awful. Sorry for those of you that can’t sleep but this I have is just as bad you sleep all those hours but feel like you have just woken up and still feel exhausted.
I swing between insomnia and hypersomnia. It's common on with fibro/cfs. Especially if we try to catch up on jobs when we have a few spoons.
I found changing the material of blancets etc to snuggly flanelette or Marino wool helped as it stops inappropriate temperature changes. Nor only helps sleep. . But when I can't sleep at least it's pleasant and relaxing.
Best kind wishes.
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