Today I did some household work while cooking lunch and went downstairs. When I returned I noticed that walking upstairs was beginning to feel more difficult. Then I began feeling tired and quickly ate something because that often helps but it only delayed it. I don't recall the exact events but I tried to resist for some time and at some point afterwards became extremely tired and had to lie down, and spent some time half awake and some time asleep. I remember trying to muster the willpower to get up, walk three steps to my desk and do something but it was too difficult. My body and limbs felt heavy. Eventually I woke up and started to feel better and was able to respond to a phone call. Is this normal? I'm honestly not sure. It's not uncommon to take a nap after meals, right and maybe having ME/CFS tends to make this worse. It can be so overwhelming that it does not feel entirely normal though. The context for writing this is that I've been wondering for the last year what's behind these episodes and whether there might be a connection to a sodium ion channel mutation identified in my family. I can still move my limbs during these episodes but I have to fight to do so.
I would think it important that for any change from "normal" symptoms, getting checkout out by a doctor should be done. Might be something else other than the ME/CFS ... thyroid, anything.
I'm not sure if this is the same reason for you, but I have extreme fatigue as part of my disease and it is like this for me on my worse days. The fatigue is overwhelming, seemingly comes out of nowhere and totally knocks you out, and forces you to nap (and this is what mostly puts me in bed). It is not just a very strong feeling of typical, "normal" fatigue though, it has a different quality and feels very abnormal. Hard to explain if you don't experience it yourself. I would liken it to being injected with some sedative, that is what it feels like to me. Having to sleep, heavy limbs, heavy body, being slower, brain fog becoming super intense, not being able to hold my head up, etc. It is almost a total absence of energy and it makes it impossible to function for me. I also have it after every meal, I guess digestion makes it worse. It is of course not independent of my other symptoms, they always get worse at the same time. Not sure if yours is the same.
I think @Barry's right—worth checking out. I do get a very similar thing, but there are several causes that all result in quite similar symptoms: Big peak in blood sugar, i.e. eating a cake without any other food – confirmed by blood glucose meter; Low blood sugar, i.e. reactive hypo – ditto, and causes the most profound inertia of all; Low blood pressure due to warm temperature; Heart rate dropping to about 40 BPM due to low blood pressure caused by PEM*. I don't have diabetes, by the way, just rather unstable blood sugar at times. No sign of thyroid disease either. ETA: Missed a step out! PEM causes dehydration, which in turn tends to reduce my blood pressure.
Can I get some more comments? Is this part of your ME/CFS? Is it normal and do I have false illness beliefs?
It's fairly normal for me, when I'm experiencing PEM and overdo things a little. I would not however describe it as tired, it's like a switch has been pressed. Based on other replies it seems it's not for others, so maybe one of the other things I have going on is influencing it.
I don't know, a "switch has been pressed" sounds like a good description for mine too. I mean it is indeed a bit like as if a switch got turned off when it starts and turned on when it ends (but maybe that's not what you meant). Tired is not a good word for me either. It feels very different, that's why I prefer sedative as a comparison. To me it feels more like when a wild animal gets shot with tranquilizer. I forgot to add earlier btw, that I definitely feel this in my muscles. I feel that there is no energy there (that's why my head often needs to be supported when this happens). And I guess that is why my limbs feel so much heavier too or why I feel slow, like there is some resistance, as if I was moving in water almost. It does give the impression that my muscles somehow have to work harder.
It happened a lot to me for a few years. Still does rarely, but for a while it was pretty common, at first especially after meals. Or something similar anyway. I have something similar sometimes when I deep massage (like really knuckle into them) some stiff muscles. Kind of a short wave of mini-PEM, but only lasts a few minutes at most. Feels like being sedated without the sleepiness part. Hard to explain.
It's not a symptom for my ME. If this is something relatively new to you I would also suggest that you get it checked out as you can't assume that every symptom is ME related. I'm living proof of that. I went for testing three years ago and they found seven things wrong with me that had absolutely nothing to do with ME.
This can happen to me but I think is more likely to happen when something else is going on. Thyroid or coming down with a cold or something. I find carb heavy meals can be a trigger and have adjusted how I eat to avoid it. Tiredness just doesn't cut it as a description for me. It's more a fundamental loss of power. In the old days, light bulbs would become very dim but not go out completely when power dropped. It's a bit like that. Or when my car decided to go into "limp home" mode. There fuel in the tank but the management system detected a fault and limits power output significantly. It'll get you home but performance is inhibited to protect the vehicle from further damage. That's kind of how it feels to me.
This sounds absolutely normal to me. Its all part of life's rich pageant. Or, at least, life with ME's rich pageant.
apart from the going to sleep bit, yes it sounds 'normal' to me. A moment of exertion can trigger it off, and it comes over in a sort of wave like a change in gravity. eg lifting something, doing something too quickly.
Body shutdown? I can have episodes that I think of as more the body turning off, to protect myself from hurting me more? It’s not sleepy or tired, no amount of willpower can stop it from happening. It usually happens if I’ve tried to pretend to be normal for a bit, and pushed through body signals for too long. My limits seems to be shrinking at the moment, so hitting the wall more often as I learn to adapt. Again.
I have this occasionally. It's not part of my usual routine, but it has happened once or twice in the last couple of weeks, before that it hadn't happened for a while. Just lights out, no other option than to lie down and sleep, can't even keep my eyes open to slouch and watch tv. I usually put it down to a change in the weather, I must have some infection I'm barely aware of (I have had a mildly sore throat of late) or some other random cause I'll never get to the bottom of.
Given the symptoms(s) and that you aren't green, I'd suggest that far too little gamma radiation may be the cause.
Yes, almost constantly after exertion to be honest. This is my main symptom. (Then there’s the light & noise sensitivity, migraines/pain and so on.) (however this may not be as reassuring to you given my recent diagnosis!). This is what I call fatigue, extreme tiredness, etc. hence why I started a thread on whether or not people had fatigue as a main symptom, a while ago.
I would definitely look into the ion channel mutations thing. I experience a thing similar to what you described (except without the sleepiness) and for me it's linked to a suspected potassium ion channel thing. (I don't really experience it anymore now that I take very large amounts of potassium supplements (this is under medical supervision), and if an episode starts I can stop it in its tracks by taking potassium.) With potassium ion channel issues (I don't know about sodium ones), exercise can be a trigger for episodes. The feeling of "heaviness" is something that I particularly relate to there - I used to say "I feel like the air around me is heavier and harder to move through". You mentioned that food can delay it for you; if it's an ion channel thing then that might be linked to if the food contains whatever mineral you are having ion channel issues with. I'm just speculating here though!
@strategist I have a friend who was going through a process of diagnosis for channelopathy, so I did some reading to support her. so I just wanted to mention (just incase you didn’t already know), that if you do suspect a channelopathy, it’s probably best to get it checked when you feasibly can. Because many (all?) of the channelopathies can affect the heart - especially with repeated attacks of muscle weakness from the channelopathy. I saw that some NHS clinics here (but not all), even have that as a main reason for referral eg sudden death syndrome in other family members, or heart issues in yourself. So if you do have it, it really is better to know one way or the other. The testing is done via a special type of EMG, MRI scans of the muscles, and only very rarely muscle biopsy in complex cases. ECGs as well. So it’s mostly non invasive although there’s an exercise element to the EMG. There’s gene testing too. Here on the NHS we have specialist clinics - quite a few of which seem to be in London - but I am thinking there will be some where you are too? Many channelopathies do also have treatments (medications). Which is obviously more than can be said for ME! And you’d need to know what type you have before trying medications or supplements as some can harm in one type, and help in another. So if you do have the attacks of weakness.. I think it’s best to seek medical advice if you are at all worried.
@Sarah94 @lunarainbows thank you for the advice. It's nice to get encouragement. I'm getting an electromyography soon on the advice of a neuromuscular disease expert, just to rule out this possibility even though it doesn't seem likely the mutation I have is doing much. There was a case of sudden infant death in the family though where this mutation could have played a role (the gene has been specifically linked to this problem). I was also going to experiment with potassium to test the periodic paralysis hypothesis. So far potassium seems to help me get more refreshing sleep. Further experiments are curently on hold because I have to take care of two people with covid in my family who are isolating. They have a mild infection and seem to be recovering normally.
To some extent, this sounds a bit like sleep deprivation. Poor sleep, interrupted sleep or just plain lack of sleep can catch up with you over a period of days, so you may not recognize the origin of the event when your brain finally says, "That's it. I'm done for a while." It's just a guess, but it certainly has happened to me.
