Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Willhm, Jun 17, 2013.
Thanks - I thought it summed up our whole situation nicely!
Thanks for posting about this. Some good comments coming out it, Willhm; and like you I experience this also. It sucks big-time and in part is why I also avoid napping if I can. I also avoid napping - preferring to rest - because I think it means a better chance of staying in bed for longer at night.
Anyway, I do know that stimulants can affect my ability to nap and/or sleep properly. My thinking runs that if external or internal stimulants are not kept at bay - then my 'hyper' system is picking up on them.
In short I feel like I am either constantly dreaming or constantly dreaming and not quite asleep. I can almost feel my eyes moving in my head - back and forth back and forth - like they are running a marathon.
And my body is reacting similarly - as if I was high of caffeine - too stimulated. Flickering. Not able to 'relax' enough to get into proper sleep-mode. So I 'wake' as if something has scared the crap out of me or as if my system has been going mental.
When waking first thing in the mornings - say after a couple of hours restlessness - I used to use the phrase 'pinata-head' because it felt like my head was going to explode.
I was nauseous and dizzy but had been laid in bed. Even if I napped for an hour - or less - my system would be 'wired'. Leaving me feeling like a cyclone had possessed me.
I don't have any answers my friend. For the headache/type thing I have found a prescribed medication helps so you might want to run all this past your doctor.
What I am hoping will reveal something of further benefit will be the sleep-study I have been referred to. Not sure how long I will have to wait for that but this whole problem around 'sleep' or rather 'non-sleep' has persisted for as long as I have had this diagnosis; so at least 14 years and I fed-up with it.
Always wondered what impact all this sleep issue has on my day-time function. Then I guess there are plenty of folk wondering the same. Fix the sleep - fix the debilitation? Be nice to think so.
Yes I feel weak, sick, dizzy and so unwell. This is whether it's a nap or longer sleep. It's gotten worse in recent years. My tummy muscles have been clenching up and get very sore. I think my nervous system responds to dreams etc and my body twitches and reacts strongly. I hate it. In the morning I can't eat for 2 hours.
There always the OI thing for some people. If you get supine just long enough for your body to adjust to that position and then get upright again so that blood sinks to your feet suddenly, you will feel like hell. Not everyone passes out. Piercing headaches, dizziness, nausea, and pounding heart are common.
hmmm, it's more of a very, very slowly beating heart for me, almost to the point where it feels like it could just stop and I die !
Yes definitely to do with autonomic dysfunction as mine got worse with the autonomic neuropathy.
I certainly recognise that being unable-to-eat-until-several-hours-after-waking feeling. It's a real hum-dinger of an issue this sleep disturbance. Screws up everything else if you ask me.
Am not convinced it's OI related I think there could be several things occurring at once. Am interested in the sleep research that is now beginning to come on-line; and they might through observation and further study be able to link this with specific bodily systems but I don't think they are there yet in respect of 'the disease'.
They're only just 'waking up' to it at an individual level
Gods alone know what kind of treatments there might be. Sleeping pills are out that's for sure - been there done that - makes me feel even worse!!
I don't doubt for a minute that there are sleep issues involved for some, if not most, of the people. I know I have multiple sleep disorders, so it doesn't surprise me that a short nap doesn't work for me. However, a large part of the symptoms people are describing are symptoms of OI (and many other things, of course), so if low blood volume/OI hasn't been investigated, it probably should in those cases.
Treatment for OI can be pretty easy relative to other treatments we do to improve our functionality. There are even some things that can be done without seeing a doctor and which might improve the symptoms significantly. Seems like a no-brainer to check it out. I can say that because I was no-brained enough not to try it for 5-6 years. I thought I didn't have OI because I got through a 10 min tilt-table test without passing out. Wrong!
I'm sure the napping problem is complex, as is everything with ME/CFS. There can be sleep issues, autonomic issues, GI issues all tied up in it. ME/CFS is just one big SNAFU (Situation normal -- all "fouled" up)
I have sleep disorders including sleep apnoea, sleep paralysis, jerking, tongue-biting, dream enactment etc...the whole caboodle. All got worse once the autonomic neuropathy started. Makes sense when you think about the sensitive nervous system...it controls everything...absolutely.
I've had problems with day naps my whole life (I think. at least the adult life). I'm in the group that avoids falling asleep during the day because of this. Nausea, dizziness, headache, heart racing upon waking up...
Interestingly though, in terms of night sleep problems, of all the prominent symptoms of FMS/CFS that's one thing I don't have.
Some paracetamol tablets contain caffeine - maybe this is the reason for your intolerance?
thanks for picking up on that MeSci.
I often treat myself to a coffee when out, cappincino (sorry, can't spell )! and cope okay with one cup, two cups is as far as I could go in one day and I do start feeling the shakes after the second cup.
I have often wanted to know what was so different between two brands of same tablet, how come one affects me so shockingly bad the other no problem at all ? They are both meant to have the same ingredients in. Thanks MeSci, had no idea they put caffeine in paracetamol, makes you wonder what else there is ?
p.s lovely photo of pussycat, guess your much loved pet
In the UK the ingredients are usually listed on the packet and on the leaflet inside the packet.
Yes, my avatar is one of my cats - they are better-looking than me!
You must still be a beauty then MeSci
I just had a look at the back, I am a bit of a noddy not having had a look at the back of the paracetamol packet before now . The one that is ok for me to use says, 500g paracetamol and hydroxbenzoates as preservatives. That's all the description they give.
Tomorrow when I go to the supermarket I'll have a look at other brand of paracetamol that gives me a bad experience and see what they list there.
I think that's a condition that just usually occurs in a condition called "pure autonomic failure" (something a specialist once checked me for, I havent heard of that condition at all being connected with ME). I have the exact opposite to pure autonomic failure as many who have ME do.. that is the BP instead goes into orthostatic hypertension when standing or on feet (and goes down when laying).
The only time I feel aweful when waking (other then if I really overdid things and have P.E.N.E going on), is if another wakes me up before my body is ready to wake up. That then can make me feel nauseus (like its a huge strain on the body being woken up too early for my body). My brain is then really struggling bad too.
I have peripheral and autonomic neuropathy as a consequence of have ME, an autoimmune disorder.
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