Unrefreshing Sleep

xlynx

Senior Member
Messages
163
Likes
7
Location
London, UK
Hiya,

I know that unrefreshing sleep is a symptom of cfs and it is one that I have often.

I just wanted to ask does anyone ever wake up with unfulfilling breaths, I often find that when I wake up on a bad day I seem to take a deep breath in and my body doesn't seem to really get much out of it and then after I am awake it takes several hours for me to get passed that feeling.

Does anyone else experience this?
 

xlynx

Senior Member
Messages
163
Likes
7
Location
London, UK
Hi Athene,

Thats so interesting, I will try that. Are there any known foods offenders or is it different for everyone.

Going to put my head out the window!

Thanks
 
Messages
49
Likes
18
Location
Houston, Texas U.S.A
Hiya,

I know that unrefreshing sleep is a symptom of cfs and it is one that I have often.

I just wanted to ask does anyone ever wake up with unfulfilling breaths, I often find that when I wake up on a bad day I seem to take a deep breath in and my body doesn't seem to really get much out of it and then after I am awake it takes several hours for me to get passed that feeling.

Does anyone else experience this?
This is a common Lyme disease symptom. See the attached link and look under the symptoms category for the one titled "Breathlessness, “air hunger”,unexplained chronic cough". What you are describing is called "air hunger" and is a neurological issue and maybe also due to physical fatigue on the body.

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf
 

xlynx

Senior Member
Messages
163
Likes
7
Location
London, UK
Hi Athene,

One thing he lists to try is enterocoated antibiotics, have you tried this?

Also do you get dizzy when short of breath?

Thanks
 

xlynx

Senior Member
Messages
163
Likes
7
Location
London, UK
Hey cfs-fibro-lyme

Thanks for that pdf.

Air Hunger does describe what I am feeling pretty damn well.

Any suggestions on how to get rid of it? I have been hungry for air for about 6 hours now :)

Thanks, xlynx
 
Messages
49
Likes
18
Location
Houston, Texas U.S.A
Hey cfs-fibro-lyme

Thanks for that pdf.

Air Hunger does describe what I am feeling pretty damn well.

Any suggestions on how to get rid of it? I have been hungry for air for about 6 hours now :)

Thanks, xlynx
On a long term basis, antibiotics will help to get rid of it. Also noted elsewhere, whatever you can do to get restful consistent sleep will help.

I don't get air hunger hardly ever anymore, but when I do, I need 10-12 hours of rest and then I'm fine.

When fatigued and unable to sleep, focusing on deep breathing or deep sighing can help. Simply lying down can help sometimes also.

Should also be noted a common lyme co-infection of Babesia, a malaria like parasite, can cause extreme air hunger. Treatment includes some type of anti-malaria drug with azithromyicin.
 
Messages
577
Likes
10
The best thing I have found to help is to open the window and literally stick my head out for a few minutes, taking huge breaths.
That helps me too!

I think unrefreshing sleep is not only just one more symptom of CFS, but I believe it is also a result of us laying around all day. Exercise can improve sleep quality quite a bit, but of course most of us can't do that. It's a paradox.
 

Mark

Senior Member
Messages
5,238
Likes
6,198
Location
Sofa, UK
I know that unrefreshing sleep is a symptom of cfs and it is one that I have often.

I just wanted to ask does anyone ever wake up with unfulfilling breaths, I often find that when I wake up on a bad day I seem to take a deep breath in and my body doesn't seem to really get much out of it and then after I am awake it takes several hours for me to get passed that feeling.
First to echo what Athene has said: very high quality advice as usual, and as always, worth paying close attention to..

Unrefreshing sleep is absolutely central in my experience. Solving the sleep problem puts so much else into place. If we don't get into deep sleep, the body can't do loads of crucial things it needs to do, and many of the other symptoms follow logically from that. In my case, it turned out to be the root cause of my chronic neck and back pain: my muscles just never got chance to rest during the night. The phrase "running a marathon in your sleep" has been mentioned before here.

But cracking the sleep problem is really, really hard. In my case, the only place I can now sleep is on a (very expensive) leather sofa. I can't handle beds or bedding. I could write a whole thread about sleep, but I don't have time so for now I'll just mention: hot baths last thing before bed, then cool down a bit as you go to sleep; getting the right routine and sleeping when it's dark; earplus if you can't get a quiet environment; very important to get a completely dark bedroom; and meditation, meditation, meditation.

All this is fairly obvious and well known of course, and it only goes so far because there are still mysterious physical reasons blocking our deep sleep. There has been interesting discussion on this forum about XMRV and how that could be causing the sleep cycle problems, but it was a while ago, could be tough to find those discussions. I think the idea was that the body is working all night to try to clear the XMRV that has been replicating during the day, which means the immune system is active all night and we never get chance to go into deep sleep.

Onto the specific symptom of not feeling you can get enough oxygen. This was one of my very first symptoms, I had trouble with this on and off for a year or so, intensely so at the time when I really got sick and lots of things started going wrong. I tried sticking my head out the window but it never seemed to help. I'd breath and there just never seemed to be enough oxygen, just as several people have described.

I went to my GP with it and he explained the cycle of hyperventilation (?hypoventilation? think there may be a few versions). He said it was basically anxiety-related, that the more it happens, the more anxious you get, which makes it worse. He suggested trying the thing with breathing into a paper bag, but his main advice was to reassure me that it wasn't serious and to strongly advise that when it happened I should try to relax, meditate, and try meditational breathing exercises.

I have to say, that particular advice cured the symptom pretty much immediately, and by concentrating on relaxing and meditating, I could resolve the problem every time - and I still can, many years later, when it occurs. I think it was related to everything else going on, with an infectious cause probably triggering the initial anxiety symptoms (anxiety is common in all these ideopathic conditions and I used to have it really bad). But the good news is that in my experience at least, there's a lot you can do to manage it through meditation. Fortunately I'd done lots of meditation before, so I knew loads of breathing exercises to try. If you don't know circular breathing, and other meditational breathing exercises, there are lots of people here who will have loads of advice on that - check the Buddhism threads and you'll find loads of experts. :)
 

xlynx

Senior Member
Messages
163
Likes
7
Location
London, UK
Hi Mark,

Thank you for the advice, meditation seems to really help ease so many of these symptoms I must get some more practice with this.

I think the way its going with meditation I should be visiting one of the Buddhist temples for a good 6 months to get cured :)

Many thanks
 

xlynx

Senior Member
Messages
163
Likes
7
Location
London, UK
Lol I was wandering why on a leather sofa, I had presumed because its nice and cool but your suggestion makes quite a bit more sense. :D
 

Mithriel

Senior Member
Messages
688
Likes
818
Location
Scotland
I have classic coxsackie B induced ME and I get trouble breathing, especially during the night.

That's me hanging out the window at 3am :)

It isn't related to anxiety. In many years of ME I have had times of anxiety with the problems life throws at you but it hasn't affected my symptoms one bit. It is how much I do, whether chore or fun, that causes problems, never what I feel.

I think it is because the mitochondria are respiring anaerobically. That usually happens when you run for a bus or something and get an oxygen debt. You stand and pant to get rid of the lactic acid. Our bodies are in an oxygen debt a lot of the time.

I have a triangular pillow which is comfortable to sit up with so I sleep against that if it is too bad.

I have other things which make me more comfortable in bed.

There is a bed cage which lifts the weight of the covers off my legs. Also a bolster, or body pillow which lies alongside me. I can rest my arms on it to keep them in a neutral position and I lift my legs onto it to relieve the pain. (It is warm too with being foam :))

I also have a frame at the side to help me in and out and a rope ladder hoist for those days I can't get up myself.

Just remembered I have a buckwheat pillow that stays cool and supports my neck too.

Mithriel
 

xlynx

Senior Member
Messages
163
Likes
7
Location
London, UK
Hi Mithriel,

Another interesting view for me to think about.

I think I might have to make an air tube from the window to inside to make things easier :)

I also have a foam mattress and it can get really hot. I noticed with my cfs that if I sleep hot I feel really bad the next day. I am not sure why this is.

I like the buckwheat pillow, might look into that.
 

Mithriel

Senior Member
Messages
688
Likes
818
Location
Scotland
I got a memory foam mattress, but it is called polar foam so it isn't so hot.

It's also an "egg box" surface so the air circulates. It is a bit of a strange surface but I find it very soft and comfortable and never have any problems with over heating.

I had a memory foam pillow but it was very hard and gave me sore ears.

I tried a feather bed topper and it was gorgeous to sink into but it went flat after a few days. Unless you are able to keep it fluffed up it doesn't work so well.

Mithriel
 

xlynx

Senior Member
Messages
163
Likes
7
Location
London, UK
Hi Athene,

Yeah I moved my bed near the windows yesterday after you mentioned the window thing. I actually laid outside for most of yesterday on a recliner as it was so damned hard to breath. Its actually as difficult to try and stay calm through it as I feel so dizzy and as I am alone I always panic that I might pass out etc. I ended up taking clonazepam for the anxiety as it was too much. I am sure I am not doing myself any favours by getting anxious but sometimes I think there is a limit to what anxiety you can hold back.

However I have survived it and its not so bad today. I wish I had some control over this pot luck symptom draw everyday lol.

I going back to basics even more pacing! :)
 

Mark

Senior Member
Messages
5,238
Likes
6,198
Location
Sofa, UK
Mark, are you allergic to dust mites? Is that why you have to sleep on the leather sofa?
I bought a very expensive solid latex mattress and I stick the pillows and duvet in the washing machine every couple of weeks which has solved that problem for me.
No: been through all that and then some! :eek::eek::eek:! No allergies on standard tests, no effect whatsoever from every anti-mite measure I could get my hands on, been through mattresses and beds and bedding and daily washing techniques and new sheets galore. My high quality memory foam mattress was good for about a week but then that too gradually started to give me trouble. 15 years...It comes and goes. It's one of many sensitivities, but none of them are allergies, none of them are anything, some are impossible and baffling. Leather seems to also be an optimum insulator for sitting on fabric chairs, sofas, etc. which deals with those reactions, whatever those reactions are to (probably mould and fungus etc). Nothing else seems effective. The original rationale was for avoidance of PBDEs, this being the only legal PBDE-free-flame-retardant-compliant route at the time other than memory foam as far as I could determine. Since latex is one thing I don't have antibodies to on the blood tests, I might look into that for my next bed. The rest of the reactions I have to control in other ways, notably some fairly extreme lifestyle adjustments. Perfume can be really bad news for me, my sense of smell is often heightened. Friday night city centre mass chemistry experiments, no thanks! I have loads of other classic symptoms, but most are to a milder extent now although I have flare-ups where everything goes haywire again, apparently after exposures to other, as-yet unknown factors. Also, although the cool of the sofa sounds nice, actually I have a major problem with being cold at night because there's frequently nothing I can bear against my skin (it used to be a lot worse). So the bed-cage sounds good, might help me.
 

Mark

Senior Member
Messages
5,238
Likes
6,198
Location
Sofa, UK
I have classic coxsackie B induced ME and I get trouble breathing, especially during the night.

That's me hanging out the window at 3am :)

It isn't related to anxiety. In many years of ME I have had times of anxiety with the problems life throws at you but it hasn't affected my symptoms one bit. It is how much I do, whether chore or fun, that causes problems, never what I feel.

I think it is because the mitochondria are respiring anaerobically. That usually happens when you run for a bus or something and get an oxygen debt. You stand and pant to get rid of the lactic acid. Our bodies are in an oxygen debt a lot of the time.
Perhaps my breathing was a separate symptom; with me it was with just that specific symptom of breathing that relaxation and meditation etc seemed to overcome the problem (and I am better ventilated these days as Athene describes, except for guarding against spores during Autumn/Spring, which may be the reason I don't get that any more, although maybe during the night that's going on still); the rest of my pain has resisted all efforts so far at conquering it through meditation - indeed it sometimes makes meditation seem impossible.

If I remember it right one theory is that the mitochondrial damage and lactic acid connection is because the body keeps on running through the night if you've over-stressed yourself through exercise, causing lactic buildup during the night and after exercise (especially) as if you've run a marathon in your sleep. I get that a lot in the mornings, especially in my arms.
 

xlynx

Senior Member
Messages
163
Likes
7
Location
London, UK
Hi Athene,

No I can inflate my lungs perfectly and fully I just dont get anything from the breath, you actually worded it perfectly when you said its as if My lungs dont bother to extract any oxygen. I dont wheeze or cough just get dizzy and frustrated. I find I get symptoms for a month and then not for a month etc. I think its why I have such a hard time working out what causes my symptoms because they are always changing and even with logging I cant seem to find any logic or pattern in them.

Have you found anything that triggers it for you?

Dust mites is an interesting idea I will look in to that as I already have a foam matress just need to start washing pillows etc.


Hi Mark,

Thats amazing how you found out about the leather sofa improving your symptoms.

Do you get the reaction when sleeping with any materials other than leather?
 

Mark

Senior Member
Messages
5,238
Likes
6,198
Location
Sofa, UK
Hi Mark,

Thats amazing how you found out about the leather sofa improving your symptoms.

Do you get the reaction when sleeping with any materials other than leather?
Even the sofa's not perfect, but it's the best solution I've found so far. Pretty much anything can be or become a problem, and almost everything is a problem during a serious flare-up. Even on the sofa there are loads of sleepless nights and my sleep quality is still poor, but it's the best compromise I've found in 15 years.