I Have Chronic Fatigue Syndrome - Emma Blackery - YouTube Video

[Marco]

@leokitten

Like me, you sound like the 'wired and tired' 'subgroup' regardless of severity.

 

[Scarecrow]

For me and I believe many others with ME that is not a symptom. In fact we get the exact opposite this disease causes a complete inability to sleep and intense sleep disturbances even when you are absolutely shattered. I wish I could sleep a lot more because it improves my symptoms more than anything else.

It isn't all that unusual for people to oversleep, particularly in the early stages of ME. I suspect this is even more true if you're a teen or in your early twenties. That's how I was at that age. I recovered enough to go be able to work but for a couple of years I had a tendency to fall asleep on public transport going to and from work. Now, it's the total opposite and I have difficulty sleeping.

Also for me normally fatigue/tiredness is not a cardinal symptom. The excessive exertion makes physical symptoms so much worse, i.e. feeling totally unwell like I've been poisoned, swelling lymph nodes and flu-like feeling, circulatory problems, muscle pain and soreness, severe headache particular behind my eyes, GI problems, abdominal swelling, complete sensory overload causing pain like my head is going to explode. For me it's all of these symptoms getting worse at once and feeling so unwell, that I have to "shut off" and the only way to feel better is to lie down in the dark with no input. So for me I wouldn't call it fatigue/tiredness more sick/unwell/poisoned feeling. But I can't normally sleep during these times unless I use medication to knock me out.

Another things that's changed for me over the last thirty years is that I'm far less likely to get overt immune related symptoms or that hung over poisoned feeling but everything else you describe still persists.

 

[Mij]

@leokitten from someone who has had M.E for 24yrs, the sleep issues change over the years. I'm not sure it points to anything significant though.

First 9yrs slept like a baby, didn't need to nap during the the day. Then I went into severe insomnia for a couple of years, then hypersomnia, and now so so sleep but need to nap during the day.

 

[Sidereal]

My illness started off with hypersomnia, then morphed into wired-and-tired after some years. In recent months I'm back to hypersomnia. Things can change regardless of severity.

 

[Bob]

As a mild-to-moderate person like you I want to ask you a few questions because I find a major aspect of my illness to be very different. Both you and Emma Blackery have said that one of your symptoms is sleepiness and that you can and must sleep a lot.

For me and I believe many others with ME that is not a symptom. In fact we get the exact opposite this disease causes a complete inability to sleep and intense sleep disturbances even when you are absolutely shattered. I wish I could sleep a lot more because it improves my symptoms more than anything else.

Also for me normally fatigue/tiredness is not a cardinal symptom. The excessive exertion makes physical symptoms so much worse, i.e. feeling totally unwell like I've been poisoned, swelling lymph nodes and flu-like feeling, circulatory problems, muscle pain and soreness, severe headache particular behind my eyes, GI problems, abdominal swelling, complete sensory overload causing pain like my head is going to explode. For me it's all of these symptoms getting worse at once and feeling so unwell, that I have to "shut off" and the only way to feel better is to lie down in the dark with no input. So for me I wouldn't call it fatigue/tiredness more sick/unwell/poisoned feeling. But I can't normally sleep during these times unless I use medication to knock me out.

I think your post reflects the heterogeneity throughout the community. Some people are 'wired but tired' and can't sleep well, whereas others feel tired and sleepy much of the time and need lots of sleep. Some people do better on large amounts of coffee whereas others can't even look at coffee without having a negative reaction to it. We all seem to have a slightly different symptom profile, and there's probably a spectrum from 'wired but tired' to 'sleepy' and everything in between. And, as others have said, it can change in an individual through the course of their illness.

 

[geraldt52]

@leokitten from someone who has had M.E for 24yrs, the sleep issues change over the years. I'm not sure it points to anything significant though...

My experience as well. I was able to maintain some function and work at least part time for the first 16 years of being "sick"...mostly by doing little more than working and sleeping. When I did lose my ability to sleep, the decline was pretty rapid. Everything is worse when you don't sleep, but if you can't sleep, there's little you can do about it. Continuous use of sleep medications is a road to hell.

My wife got sick 5 years after I did, progressed faster than I did, is more disabled than I am, yet she can sleep as much as she wants.

It may mean something, but it's probably just another way in which we're all a bit different while strikingly the same.

 

[dannybex]

I don't know who Emma Blackberry is, except that she has a very popular YouTube channel, with almost a million subscribers.

If she keeps talking about CFS then we can be sure of one thing:

Those subscribers will shrink down to maybe 100, if that.

 

[redaxe]

As a mild-to-moderate person like you I want to ask you a few questions because I find a major aspect of my illness to be very different. Both you and Emma Blackery have said that one of your symptoms is sleepiness and that you can and must sleep a lot.

For me and I believe many others with ME that is not a symptom. In fact we get the exact opposite this disease causes a complete inability to sleep and intense sleep disturbances even when you are absolutely shattered. I wish I could sleep a lot more because it improves my symptoms more than anything else.

Also for me normally fatigue/tiredness is not a cardinal symptom. The excessive exertion makes physical symptoms so much worse, i.e. feeling totally unwell like I've been poisoned, swelling lymph nodes and flu-like feeling, circulatory problems, muscle pain and soreness, severe headache particular behind my eyes, GI problems, abdominal swelling, complete sensory overload causing pain like my head is going to explode. For me it's all of these symptoms getting worse at once and feeling so unwell, that I have to "shut off" and the only way to feel better is to lie down in the dark with no input. So for me I wouldn't call it fatigue/tiredness more sick/unwell/poisoned feeling. But I can't normally sleep during these times unless I use medication to knock me out.

Hi that's ok ask me as much as you like
I can certainly say without a doubt that early on I had those exact issues. I remember being utterly overwhelmed with exhaustion late at night and having this 'wired' sensation that kept from being able to sleep - it's like torture (being held in an interrogation centre and being forcibly sleep deprived for days or weeks) . Melatonin worked a couple times but it's effect diminished quickly.
A holistic doctor gave me GABA and that actually worked quite well combined with melatonin - GABA isn't thought to get through the blood-brain barrier but it definitely has an effect on me so some of it must get through. I haven't used it for ages though maybe I should try again.
I also found out that Acetyl-carnitine kept me awake at night too so I stopped taking that in the evenings - it can certainly worsen insomnia - I didn't really realize it because I was taking it in a complex form with other things.

But since then with B12 injections and some response to antibiotics and possibly antivirals and treating sinusitis it is better than it used to be. Don't get me wrong though, I still have to have melatonin to get to sleep (otherwise I lay awake for hours) and waking up is awful.
I've found that my sleeping rhythm seems to have shifted to about 3am-1pm (If I sleep within that time I'm actually far better than trying 7am-10pm with daytime naps).

In saying that though I am starting to wonder if my illness paradigm is starting to more closely resemble narcolepsy rather than CFS/ME? Most of the symptoms that are associated with CFS/ME like brain fog, IBS, light/sound sensitivity, cold intolerance, frequent urination, unquenchable thirst, orthostatic intolerance I've had in the first 18months of the illness but I don't have anymore.
I would say I also have muscle weakness but that could be a symptom of orthostatic intolerance (blood flow/vascular problems) or just general weakness from an inability to 'wake-up'.
My main issue now is persistent daytime tiredness so it seems like my brains ability to regulate the sleep/wake cycle is damaged. And that is what is the central problem with narcolepsy which ironically is now also proven to be an autoimmune disease often triggered by stress or infection with an underlying genetic susceptibility.

 

[leokitten]

In saying that though I am starting to wonder if my illness paradigm is starting to more closely resemble narcolepsy rather than CFS/ME? Most of the symptoms that are associated with CFS/ME like brain fog, IBS, light/sound sensitivity, cold intolerance, frequent urination, unquenchable thirst, orthostatic intolerance I've had in the first 18months of the illness but I don't have anymore.
I would say I also have muscle weakness but that could be a symptom of orthostatic intolerance (blood flow/vascular problems) or just general weakness from an inability to 'wake-up'.
My main issue now is persistent daytime tiredness so it seems like my brains ability to regulate the sleep/wake cycle is damaged. And that is what is the central problem with narcolepsy which ironically is now also proven to be an autoimmune disease often triggered by stress or infection with an underlying genetic susceptibility.

I am pretty sure you have ME/CFS. What you just wrote about your symptoms during the first 1.5 years you could have been writing about me. For the first 1.5 years all the symptoms were so much more severe and some I don't have anymore, like the polyuria, unquenchable thirst, and POTS. From the 1.5 year mark to today I very slowly started to stabilize, some symptoms reduced, and a couple slowly went away. Only when I go well beyond my energy envelope and have a crash like no other do I have all the symptoms come back for a few days. Like you one of my major symptoms still as strong today as the day I fell ill is my blood flow/vascular problems. I never had OI, ME/CFS gave me sudden poor blood flow and tissue perfusion. I had a rapid wasting of tissue and muscle even though I never stopped being active during that time so you couldn't explain it as deconditioning.