When did your unrefreshing sleep start?

[Rufous McKinney]

Cleaning up, powering up, repairing. Those are just other words for refreshing. A healthy person can distinguish between refreshing and unrefreshing sleep, and so can a sick one.

The unrefreshing sleep I experience is very intense, and nothing like the normal sleep situation I experienced for many decades (when my ME was mild).

It has a whole litany of particular qualities. Its also associated with other neurological reactions which our bodies do not produce in a normal manner. Examples: yawning and stretching.

So I am confident they will figure it out someday. What is so odd about our sleep problem.

 

[PhoenixDown]

My unrefreshing sleep started in 2001 when I started college. I didn't get ME until 2007 very gradually. I only felt refreshed after 10 or 11 hours of sleep which I scarcely managed to get. Sleep deprevation has made my ME permanently worse because it lowers my PTLT, resulting in many over exertions.

 

[Husband of]

My unrefreshing sleep started in 2001 when I started college. I didn't get ME until 2007 very gradually. I only felt refreshed after 10 or 11 hours of sleep which I scarcely managed to get. Sleep deprevation has made my ME permanently worse because it lowers my PTLT, resulting in many over exertions.

that's interesting. Coming to think of it my wife would require at least 10 hours sleep to be refreshed before getting ME

 

[Howard]

To me one of the defining aspects of MECFS is unrefreshing sleep.

i am very curious as to when this develops for people, compared to other symptoms.

I did not experience refreshing sleep for a period of seven years, which also coincided with the onset of my general weakness symptoms (and into becoming very severe for several years). I always woke up feeling awful, as though I were poisoned. However, it took a few years before my physical abilities diminished to the extent where I could no longer get out of bed.

Seven years in, I discovered tart cherry juice / powder, ingesting a fair amount two hours before sleep each night. And literally, overnight, I began experiencing restful sleep. For me, it was that sudden.

My physical strength did not increase in the least, nor my muscle endurance. However, I no longer felt that disgustingly poisoned / sickly sensation each morning upon awakening. Also, no more buzzing empty energy.

In the past calendar year I've experienced a tremendous uptick in regards to energy and muscle strength duration. It takes a bit longer for my severe P.E.M. to kick in now. This overall improvement has everything to do with near-constant sunlight exposure (which has very little to do with this discussion, here).

However, I'd not really slept soundly at all in the past couple of months (inconsiderately loud roommate / nightly nurse related events) and I suffered greatly as a result. But this week he's been in the hospital, so I've been able to sleep between 8 to 12 hours each day / night. And now it seems my energy levels are back up to baseline - where they were two to three months ago. I wasn't expecting any recovery at all, much less this quickly.

In regards to the previous comments and the question at hand, I'm not sure this information is helpful at all.

 

[Rufous McKinney]

I'm not sure this information is helpful at all.

I think its interesting and helpful to someone who can think more deeply about all this.

Could Vitamin D save me? Im an older person, a red head, and society doesn't "let me" lie about outside with alot of skin exposed, basting in the sunlight. ( I read if my legs were exposed, thats only 10% of my body and somebody else reported that winter sun doesn't even work.)

In fact after the landlord gave away my reclining chair (which I later got back, but its not outside any longer)...I realized I was going to have trouble because I would likely just pass out in the lawn chair, out there "in public".

Maybe the big hat I have, could hide my face, snoring away, slack jawed I wouldn't doubt!

They like to report Vitamin D is essential for BONES (so thats another good thing for you, @Howard); but this is where its likely important to our stuff (of which you have your particular version)

More recently, important immunomodulatory effects have been attributed to this hormone. By binding to its receptor, the vitamin D receptor, 1,25(OH)2D3 regulates the expression of various genes and consequently affects the behaviour of different cell types within the immune system.

Your strong reaction to extensive Vitamin D exposure is fascinating, you should be a paid Research Victim.

 

[heapsreal]

I can't recall exactly when crap sleep started but pretty close to the beginning of my cfs onset. Say gradual over a couple of months and was happening periodically. I'd say 2yrs after onset it was totally buggered.

You read medical things on insomnia and categorise them like sleep onset insomnia, sleep maintenance, Circadian rhythm disturbances, pain and probably more. I feel like I fit all of them at some stage or another. I can remember early days of cfs and I'd either wake up or could fall asleep as I'd get this deep bone pain down my shins like I had shin splints. I still remember once at 3am in the middle of winter running a hot bath to help relieve the pain. My wife walks in with a confused look on her face, what are you doing? Certain things if they happened once in a blue fit you'd deal with it but when it's constant, it's like this annoying thing you want to belt the crap out of lol.

If you could fix insomnia, you wouldn't be cured of cfs. But treating insomnia helps, insomnia adds another level of fatigue and crappyness to cfs.

 

[Rufous McKinney]

If you could fix insomnia, you wouldn't be cured of cfs.

true, but sleeping is the wonderful break from "this".

 

[RyeRyeBread]

I had mono 1-2 months before ME onset, and my unrefreshing sleep started at the same time & just as abruptly as the rest of my ME symptoms. One day I was sleeping fine, and every day since then I've woken up exhausted

 

[heapsreal]

true, but sleeping is the wonderful break from "this".

Definitely. I remember the first couple of years, I would go for a few weeks with crappy sleep. Than out of absolute exhaustion I'd sleep for 3 or 4 days straight with toilet breaks and abit to eat here and there. It did feel good as my body felt like it shut down and aches and pains would stop too. If it lasted more than a couple of days I'd start to feel guilty and need to do something as my wife was left with a 3 and 5 yr old, while im in bed asleep. Hard to learn to stop fighting it and just go with it. The tide would turn from one extreme to the other. I know some people who just sleep 22hrs a day almost constantly and that we be a very frustrating situation. 2 days of it after not sleeping properly for a few weeks I can manage but if the sleep was ongoing......

 

[Andryr]

I really dislike the term 'unrefreshing sleep' because it implies that it has something to do with sleep, when I think it really doesn't.

Well that's correlation vs causation kind of thing. I wake up completely exhausted wishing I had not gone to sleep. Morning is my worst time of the day. But who am I to draw conclusions? We need more scientists here.

 

[Husband of]

I had mono 1-2 months before ME onset, and my unrefreshing sleep started at the same time & just as abruptly as the rest of my ME symptoms. One day I was sleeping fine, and every day since then I've woken up exhausted

That's interesting. So with mono I presume you felt tired but you considered yourself refreshed from sleeping?
What other symptoms changed with your ME onset?

 

[Husband of]

Well that's correlation vs causation kind of thing. I wake up completely exhausted wishing I had not gone to sleep. Morning is my worst time of the day. But who am I to draw conclusions? We need more scientists here.

I think they call that anti-refreshing sleep haha

 

[Seadragon]

I had mono 1-2 months before ME onset, and my unrefreshing sleep started at the same time & just as abruptly as the rest of my ME symptoms. One day I was sleeping fine, and every day since then I've woken up exhausted

This.

And often feel poisoned and extremely "drugged" as if coming round from a general anaesthetic.

 

[Husband of]

This.

And often feel poisoned and extremely "drugged" as if coming round from a general anaesthetic.

And for you did you already have fatigue with the mono prior to ME onset?? If so, which symtpoms occurred suddenly with ME onset?

 

[Marylib]

January 1992.

 

[Marylib]

that's interesting. Coming to think of it my wife would require at least 10 hours sleep to be refreshed before getting ME

It was the same with me. I always needed more sleep than other people when I was healthy. I was always envious of them. @Husband of I was wondering how you two were doing with your covid infections. The way you avoid CFS is to sleep and rest and sleep and rest - rinse and repeat - until you feel fully recovered. Then take it very easy. There's no set timeline. Your body has its needs, so don't cheat!

 

[Marylib]

I think its interesting and helpful to someone who can think more deeply about all this.
Your strong reaction to extensive Vitamin D exposure is fascinating, you should be a paid Research Victim.

@Howard I agree - it's very helpful to hear these things and I'm glad it's going a bit better for you. My pet theory is that living as naturally as possible is a good plan. Getting up at dawn and winding down at sunset or before (depending on time of year). Maybe it's the sunshine - the light - maybe not so much the vitamin D through the skin. I don't know, but I am a convert to my own plan at the moment. My room faces east so I know when that sun is up! If I sleep like hell - I still get up and try to stay awake even though I feel like a zombie. If I am lucky I can learn to take a 5 minute nap - but napping isn't easy for me. I tend to fall asleep too long if I do.

 

[Husband of]

@Marylib over the past couple of days my wife seems to have returned to her pre COVID state (although hard to tell because her MECFS symptoms vary a lot throughout the monthly cycle). Her recovery was relatively unidirectional.
For me, I've had a bit of a rollercoaster ride, got better then worse then better then worse now getting better again. Was at work from home full time but I've dialed it back. One day I went into work and it was awful, set me back.

At the moment I am working from home 4 hours a day spread across 8 hours with lots of breaks, including eyes shut rest. I have some symptoms in common with MECFS but I imagine that's just because some MECFS symptoms are just the symptoms of being sick.

If I exert too much physically or mentally I feel nauseated, get a fever, get brain fog, spacey feeling, stiff jaw, pins and needles in my scalp, tinnitus. The greater the complexity of my mental exercise the sooner I feel sick, and I also find conversations drain me quickly, especially if I talk energetically. And, on the couple of days I sued more than my energy quota I felt worse the next few days (hence the rollercoaster).

so it seems in someways very similar to MECFS except compared to my wife I don't have orthostatic intolerance, (most of the time) I don't have unrefreshing sleep, and I do feel normal at times whereas she never does.

I think as long as I can keep improving, rather than going on a rillercoaster, I should end up fully recovering.

 

[Jadzhia]

Thinking back to when CFS potentially began, at 23 yrs old after a dose of EBV (which I thought I was OK after as I had mega-dosed on Vit C), followed a few months later by flu (really wiped me out) and also doing a stressful master's degree (which I subsequently dropped out of). Suddenly I found myself very tired and having to take afternoon naps, something I'd never done. Also brain fog so I couldn't study. My GP said 'nervous exhaustion' at the time and to just rest. I never fully recovered. After a few years I did get a partial recovery but never back to how I was. However I did used to have a good night's sleep, in addition to most days having an afternoon nap. If I didn't nap I'd feel terrible.

It was after I was diagnosed with Hashi's that my sleep became much worse at night and unrefreshing. It has never recovered some 6 years later. I'm always tired regardless of how many hours I do or don't get.

 

[RyeRyeBread]

That's interesting. So with mono I presume you felt tired but you considered yourself refreshed from sleeping?
What other symptoms changed with your ME onset?

Yeah, I didn't notice any sleep related symptoms, and my exhaustion was minimal (compared to daily life now lol). Probably around the average flu infection level tbh, it wasn't a "bad" infection - I just was out of sorts and really damn tired.

basically all of my symptoms I had during mono morphed into worse versions for ME -

With the mono infection: I had swollen salivary glands (and possible lymph nodes occasionally vut weren't swollen when I was being examined by my doctor at the tume). I was "exhausted" but nothing like after ME. I was out of breath walking up stairs. I never noted unrefreshed sleep or any sleep related issues, just felt like crap when i was awake. I "felt sick"/general malaise. and knew something was wrong, but I initially thought I had cancer or something LoL I also had basic tension headaches during mono

Once ME onset hit:
Overwhelming exhaustion, all the time, every day. Way worse than with mono. I haven't woken up a single day feeling well rested. I developed POTS as well, at the same time, so all those symptoms on top of everything. and PEM (with extreme "sleepiness"/needing to passout and sleep and an inability to do anything else when crashing bad, fevers and feeling feverish (sometimes seperate), migraine-like headaches, lead limbs, severe muscle fatigue/burning/aching, brain fog & feeling so mentally out of it/fuzzy/sort of like when tou wake up from a nap with a fever(?) = that feeling lol

among others, but yeah, my ME is like a worsening of all those symptoms (that I had completely recovered from at that point) and the addition of a whole bunch of bs :]