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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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The Basic Sleep Poll

My (yawn) sleep issues include

  • Insomnia

    Votes: 272 66.7%
  • Multiple Waking

    Votes: 273 66.9%
  • Early Waking

    Votes: 225 55.1%
  • Sleep Apnea

    Votes: 62 15.2%
  • Restless Leg Syndrome

    Votes: 96 23.5%
  • Unrefreshing Sleep

    Votes: 352 86.3%
  • Alpha-Delta Sleep Abnormalities

    Votes: 88 21.6%
  • Daytime Sleepiness

    Votes: 219 53.7%
  • Wild Dreams

    Votes: 142 34.8%
  • Sleep problems (yawn) I don't have any sleep problems

    Votes: 22 5.4%

  • Total voters
    408

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
My biggest problem is getting to sleep.
However, I've at least learned how to rest all night when actual sleep eludes me.

I've been through months and months of getting no more than 2-3 hours total in one night. The worst part of that is having to endure living for 21 hours out of 24.
 

leela

Senior Member
Messages
3,290
My biggest problem is getting to sleep.
However, I've at least learned how to rest all night when actual sleep eludes me.

I've been through months and months of getting no more than 2-3 hours total in one night. The worst part of that is having to endure living for 21 hours out of 24.
(((((peggy-sue)))))
:hug:
 
Messages
51
Location
NORTHAMPTONSHIRE, UK
When it gets dark outside my body wants to switch off, it usually gives me an hour and a half to switch off and in that time it gives me reminders, if I havent stopped by then, my body does it for me. So, right now its 8.30pm and I know I'm on borrowed time.
My head wakes up when its light outside but takes me about 2hrs for my body to wake up after my eyes have opened.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Yes, I would expect the daytime sleepiness to be close to the unrefreshing sleep. I can nap during the day.

I assume that it takes a sleep study to detect Alpha-Delta Sleep Abnormalities and that they
would be higher if everyone had a sleep study.

Dang, every time I see the word yawn, I yawn.
 
Messages
19
Location
Dubrovnik/Croatia
bad sleep was reason of my relaps after 12 years...ok its not i was recover but i was 50-60%...now im back on 20-30%. it started with wakeing and feeling of having stroke and dizzynest. that just killed my sleep...i dont have stroke feelings anymore but ill need time to recover damage, at least i hope.
 

Wifi123

Senior Member
Messages
159
I have had a number of major surgical procedures and since then I've found it extremelyy hard to sleep. I use to go to bed at 9PM and sleep through to 8-9AM. Now I stay awake up to 11PM, because if I go to bed at 9PM, I will be awake at 1AM, and will toss and turn.

I began to take Melatonin and I believe that it will help me as time goes on, and I am hoping that it will help my brain fog that drives me up the wall as well.

When I am bad, I do take a 1/4 of a tablet (Stilnox), and it does give me a sound five hours without any side affects. But, I will only take it once a week or two weeks.
 
Messages
97
Location
London
This has been a VERY interesting poll for me. It caused me to do a re-evaluation about my current sleep situation and realized something rather amazing, at least to me. I even checked with my husband just now, to be sure I was on the money.

I don't have any sleep issues. I used to. I have probably been through every type and combination of sleep problem out there at one time or another in the last 17 yrs. But somewhere in the last 2 years, ... they've all gone away.

I will say I need a nap sometimes during the day. And my sleep could be more refreshing when I wake. But all in all, I sleep as well as your average 53 yr old without CFS, and maybe better than some of them.

Huh. Nice to know. :)


What helped you Jody? How did you sleep problems resolve themselves?
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Obstructive sleep apnea treated with CPAP (improves with weight loss)
Delayed phase sleep disorder (get sleepy around 2 am)
Early morning waking due to beta-blocker atenolol (trying other blood pressure meds now).
I use melatonin every night. Just so y'all know, most beta-blockers suppress melatonin production and throw a wrench into things:
Influence of beta-blockers on melatonin release:

http://www.ncbi.nlm.nih.gov/pubmed/10335905

My unrefreshing sleep is NOT fixed with CPAP therapy and I need about 10 hours of sleep to feel my best.
 

Jody

Senior Member
Messages
4,636
Location
Canada
What helped you Jody? How did you sleep problems resolve themselves?


Hi szenn,

I'm not sure how they resolved. It was a really gradual process. I slept whenever I needed to sleep, no matter when it was. I spent a lot of time resting. But I think that is something most of us do, so probably not the main factor.

I think sleep issues improved as general health improved. I credit the supplements I was taking, the low carb diet I was on, and acupuncture once a month, over a period of several years.

Lots of different supplements but main ones were and are vitamin B12, vitamin D, omega 3 oil, and a tincture from my naturopath. I avoid food that I have sensitivities for, like grains and sugar.

I have used sleep aids off and on, but no sleeping pills or drugs. Valerian, melatonin and Bach's Rescue Remedy have all helped me sleep when I was having problems.

There may have been other factors, these are the ones I know of.
 
Messages
58
After decades of insomnia due to CFS, I found something that will at least help get me into a deep sleep (along with the usual Klonopin that I have to take.) It is the amino acid L-Glycine. There is a Japanese study about it and it has been proven to get people into the deep mode of sleep.

An added surprise for me, as I had experienced a virus about 2 years previously and it had left me with fibro. AGAIN, was that after three nights taking L-Glycine, the fibro was gone. Completely gone. Amino acids are a big factor in CFS for most of us and I'm getting very interested in what other ones I am deficient in. Just telling you this in case it helps someone.
 
Messages
3
Location
Las Vegas, Nevada
Hi, I'm new to this forum/PhoenixRising. Found it through searching on MTHFR after finding out I'm homozygous. I haven't slept well my whole life. The only thing that gives me anything remotely close to sleep is klonapin. It's not completely restful and still wake up in the middle of the night, BUT I don't wander my house in the middle of the night wide awake or lay in bed waiting to fall asleep. Just start methyl B-12 and methylfolate this week. I have to say that my "morning depression" is almost gone and I feel calm, not wired and tired. I haven't been properly diagnosed for CFS or Fibro, but have the signs of both. Doctor's can be expensive and useless for this stuff, so I became my own doctor along with help from naturopaths about 7 years ago. Ironically I'm healthier now than when I saw doctors.

I know there is a forum somewhere on here about MTHFR and will go read those posts. I just signed up here and came over to this subject, since it's been a life long battle. In fact, nobody in my family sleeps. It's crazy, but after genetic testing totally makes sense.

Good luck everyone!
 
Messages
55
Location
London, UK
I have three sleep disorders. I sleep walk. I have "periodic limb movement in sleep" known as PLMS, where my legs jerk and brings me out of deep sleep to almost waking, therefore poor quality sleep, and actually the worse one is sleep reversal (an extreme form of Delayed Sleep disorder. I cannot sleep at night at all, I can only sleep during the day. I've tried everything, as you might imagine, nothing works, or if something does then only for one or two nights and then never again. Sleep tablets have no effect on me at all. Oh yes, and of course I have, unrefreshing sleep.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Taking magnesium citrate (and calcium to balance the magnesium and protect bones) helped me a lot with muscle cramps and twitches and accidentally throwing myself out of bed, @Griffin
 

Cheesus

Senior Member
Messages
1,292
Location
UK
I am voting all over wild dreams! If anyone could ever see into my head on a nighttime I am almost certain I would be committed to a psychiatric hospital. I'm not usually creative during the day so I have no idea where I come up with a troupe of wales vibrating to tribal music, only to pause lined up along the seashore and open up their tails in the manner of a carrier plane to reveal a infant school cloakroom guarded by roman legionnaires.

If that sounds weird, the level of detail in the dream made it a whole lot weirder.

EDIT: I'm not sure that even makes sense (or ever could) as I am very foggy. Describing it would be difficult at the best of times,
 
Messages
55
Location
London, UK
Taking magnesium citrate (and calcium to balance the magnesium and protect bones) helped me a lot with muscle cramps and twitches and accidentally throwing myself out of bed, @Griffin

Thanks. I did take magnesium citrate for a while (2 years), but for some other reason (low magnesium) but it didn't seem to make any difference to anything. I was supposed to have it injected but I passed out at the doctors when they did the first one (I don't normally pass out!) so they insisted I take it orally, which is not as effective. But thankss, it ought to work. Just nothing ever seems to work for me. <sigh> @peggy_sue
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Did they still inject you Griffin?
They're not supposed to.

(Doesn't make any sense to me - I wouldn't mind if they did it while I was out cold. :thumbsup:I do mind being stuck with needles while awake.:()

I just take the tablets every day. They do help a lot, I don't get the cramps and crawly feelings of RLS nearly so often.

And only the cat fell off her bed recently.
(We struggled not to laugh, poor Pippin, as she carefully got up and pretended she'd done it on purpose:cat: )
 
Messages
55
Location
London, UK
It was the injection that caused me to pass out. The most incredible pain shot up my thigh and just caused me to conk out. The pain lasted a few days and it was hard to walk. I discovered some time later, as I injected myself with B12 every night, that there is a spot on my thigh which if a needle goes in the precise point, the horrendous pain shoots up my leg. Injecting myself, I know exactly where it is and avoid it. The nurse must have hit the spot!

I've fallen out of bed a couple of times. The last time I hit my eye on a sharp corner of the bedside cabinet and looked like I'd been in a fight for a week.

I take codeine (on prescription) for RLS. Works for me oddly!