It almost always starts when I am sitting or lying. It begins that my heart rate goes up (>120), I start to feel extremely twitchy and nervous (not so much anxious though, more like excited but in a bad way), I have a urge to move around, and I don't realize what is going on around me anymore.
Also my hands get red, and I get flushes in my hands and feet, I start to feel weak and tremble. Finally, I have some sensations in my left elbow (which I have from time to time without the other symptoms) and at some point I feel like fainting.
I do NOT, however, have any kind of pressure on my chest (what you would expect for heart attack...) When it happened I just got up, walked around, drank some water and it got better slowly.
Does anyone know what could cause this? Do you think it is a heart disease thing, something related to blood sugar, thyroid or anything else??? I think what triggers it is stress and not enough exercise (the little I can do...), that is sitting too much...
I think many ME patients usually have these sorts of problems (e.g. orthostatic/autonomic dysfunction) when they are vertical, not when they are lying down, and I've never come across across anyone else who has had exactly the same experiences that you describe (i.e. over-stimulation, only when lying down.)
But I
have had almost identical experiences as you describe.
And I came to the same conclusions as you did: That it was possibly a heart problem and/or related to blood sugar and/or a blood pressure problem and probably related to long-term inactivity.
It felt a bit like a panic attack, but it definitely wasn't a panic attack.
Like you, I only got it when I was lying down, to begin with. (But later it became more persistent.) But, unlike you, I got some mild chest pain and palpitations. My heart would race, and I would get a surge of hormones (a bit like a panic attack) that would over-stimulate me. I'd also feel short of breath. And I would feel semi-conscious, as if I was about to faint and not enough blood or oxygen were getting to my brain. It subjectively felt like heart failure.
The problem became persistent for me, and I started to feel permanently faint (semi-conscious) when I was walking, with chest pain and palpitations. So I had my heart monitored because the problem was persistent and worrying. All my heart readings were normal, and the specialist laughed at me when I said I was worried about a heart problem. (I don't look at all unwell.)
Any doctor will probably dismiss your experiences, like they did with me, and tell you that you were having panic attacks. (But you must get yourself tested to see if they can detect anything.)
Like you, I also thought it might be a low blood sugar problem, especially after eating.
Or a low blood pressure problem, after eating.
(Apparently both are possible.)
(I was sometimes experiencing that same problems after eating large meals.)
For some reason I thought that my heart (e.g. heart muscles) might be out of shape because I had never raised my heartbeat since becoming ill. And I thought perhaps this might be affecting my heart function. (The only exercise I ever got was walking since getting ill.)
So I decided to try raising my heart-rate ever so gently. My ME is very reactive and I can suffer from almighty relapses with only very minor exercise, so I had to consider this very carefully.
What I did was to shuffle just a few meters. (It wasn't a run - it was a slow gentle shuffle - slightly faster than walking.)
It raised my heart rate very slightly.
I was worried that I would suffer an ME relapse, so I then rested a lot.
A couple of days later, after no pay-back, I had another shuffle for about 20 metres - just enough to raise my heart rate very slightly.
I continued to practise this, once every three days, as long as I wasn't experiencing any pay back.
I haven't experienced the weird symptoms ever since my second week of shuffling exercise. So it worked for me. I now regularly try to incorporate a shuffle into my exercise routine, so that I regularly raise my heart rate. Except when I relapse, then I have total rest until relatively stable again.
My theory is that my heart muscles were out of shape because I hadn't raised my heart rate for so long, and that this was causing a heart dysfunction of some sort.
And I think perhaps raising my heart rate enabled my heart to normalise in function.
Obviously it's just a theory, and I might be wildly wrong about it.
But it may have been an orthostatic problem, and not an actual heart problem, that was fixed by the exercise. (Our bodies probably do need exercise to function properly.)
If you try any exercise, please be excessively careful and gentle. Just increase your heart rate ever so gently, for a very short time. And give yourself enough time afterwards to make sure that you won't suffer from a relapse. Perhaps rather than a shuffle, you could consider trying a short aerobic exercise at home, such as lifting your arms in the air.
I wouldn't have done this unless I was feeling relatively well. If I was already suffering from PEM or I was feeling relatively unwell, then I'd never have experimented with raising my heart rate. I did what I thought was probably entirely safe for me to practise at the time. But doing this sort of exercise, however brief and gentle, could make an ME patient extremely ill. So it's not something that I'd recommend to any ME patient. I'm just telling my personal experience, in case you think you could try it safely.
Always remember to be ultra-ultra cautious if doing any more activity than you are used to. Keep it very short. Be exceptionally gentle. And rest for a long time afterwards. Don't repeat for at least two days, and possible four days, depending on how long your PEM usually takes to react.
But it does sound like something to get checked out. Do you have a good GP?
