Periodic Paralysis, myotonia, channelopathy and ME

Jonathan Edwards said:
From what I can gather this person has not got a diagnosis of channelopathy. It is just a U-Tube video of someone with episodes of subjective weakness - whatever the cause might be.
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I understood @strategist question to be directed not at the diagnosis, but at how the term paralysis was being employed in the label Periodic Paralysis. If I was right, then PP likely would be correct provided it's a channelopathy - despite no paralysis being evident. PP is an overarching term(s) that encompasses a spectrum of symptoms and manifestations that range from muscle weakness to paralysis to cardiomyopathy to overt physical abnormalities etc.
 
I'm in the early stages of questioning whether ME is my only, or main, diagnosis.

A couple of weeks ago I started potassium supplements (long story). They relieve almost all my muscle pain and a lot of my fatigue, and I no longer go all weak and staggery an hour or two after swimming or eating a big meal. I sleep properly and I'm not getting any suggestion of PEM, despite having been busy.

It's far too soon to draw any conclusions, but I have two wildlife trips coming up in quick succession where I'll be away from home and going out most days. That should give me a clearer indication of to what extent PEM is still an issue. I don't think I'd be justified in asking whether I can be tested for a channelopathy until I understand this much better, and have at least a couple of months' worth of symptom notes.

In the meantime, though, it's been lovely! I'm still like a rag doll when I first get up in the morning, but I'm completely used to that; I don't think the muscles in my upper legs are going to work again no matter what supplements I take, but I'll settle for having them pain free for most of the time. The acid reflux from the potassium isn't such good news...but it's been fairly mild so far.
 
I've had my first experience of next-day weakness today, after doing hours of spring cleaning yesterday. It wasn't as strenuous as activities like digging the garden or swimming, but cleaning the oven and all the cupboards inside and out involved a lot of working on my knees and then having to get upright again.

My head, torso and hips have been fine today, but my arms and legs are absolutely destroyed. :laugh:

On my first trip to the loo after getting up, my legs were so floppy that I crashed into the door frame, then the wash basin, then overbalanced and found myself leaning over the toilet hanging onto the cistern. I was marginally less drunk after a dose of potassium, but basically getting upright and walking have been a nightmare all day. It finally relented at about 8:30pm, and everything's now working as well as it normally does.

If it turns out this is not PEM but an abortive attack of periodic paralysis, it's not surprising the two can be confused, especially without the sore throat. (I haven't had any immune-type symptoms since I started on potassium*.) My arms and legs are weak when I try to use them, sure, but when resting it feels like the profound fatigue and pain that ME patients describe. And the need to rest today has been every bit as non-negotiable as it was before.

I still don't know what's going on, but I'm writing about it in case it helps anyone else clarify what's happening to them. For instance, it had never occurred to me to think about whether there was a difference between how my limbs feel and function the day after activity, vs the rest of my body. As soon as I do, the difference is obvious.



* Re. the sore throats and swollen glands: I'm wondering if mine were to some extent sleep-related. They've always been worse in the mornings, and on a better day would subside once I'd been up an hour or so. My sleep has changed a lot since I started the supplements, and it's possible this has something to do with it. Maybe I was breathing differently or having apnoea episodes, which were worse when I'd over-exerted myself and so lasted all day? Who knows, though.
 
Posts moved from ME/CFS Alliance 20th anniversary event - the Pavilion, Winchester Cathedral 4th March 2026

Nightsong said:
There is also no evidence that ME/CFS is associated with episodes of paralysis, as a patient apparently associated with this conference claimed in the BBC news segment.
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A lot of people including myself have transient episodes of paralysis. I think it would be misguided to dismiss this as it is a quite commonly reported symptom, even if it is not universal.
 
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V.R.T. said:
A lot of people including myself have transient episodes of paralysis. I think it would be misguided to dismiss this as it is a quite commonly reported symptom, even if it is not universal.
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We have discussed this before and I tend to agree with Nightsong from a medical perspective. In medical terms paralysis is used to imply a failure of motor nerve pathway or muscle function leading to complete loss of power in an area. Complete inability to move a limb, or the whole body, can occur for other reasons. One is pain. Another is severe vertigo. Another is syncope. The terminology is muddled but we tend not to refer to these as paralysis. Moreover, the general public tend to understand the distinction.

People with ME/CFS on the forum report episodes of being unable to move either certain limbs or in general. However, I have not seen any medical reports of paralysis in the usual medical sense. It is difficult to know what these episodes are due to without that documentation. That is a pity because if this could be documented properly we might learn something important.

What worries me is that claims of episodes of paralysis in ME/CFS are used as evidence for an "ME" style neurological disease - an encephalitis maybe - of the sort rather poorly documented at the Royal free in 1955. This perpetuates the myth that ME/CFS is a neuroinflammatory disease with localising neurological signs, which it isn't.

Better documentation of very severe ME/CFS seems to me to be something we badly need. Despite there being physicians who have specialised in advising on management of very severe patients there is virtually nothing documented in the medical literature - which is strange.
 
Jonathan Edwards said:
People with ME/CFS on the forum report episodes of being unable to move either certain limbs or in general.
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This is what I was referring to. I wasn't aware of the medical distinction.


Jonathan Edwards said:
Better documentation of very severe ME/CFS seems to me to be something we badly need.
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Agreed, we desperately need better understanding of very severe. Although to be clear about the paralysis episodes, for me these episodes started when still mild but starting to deterioate. My partner is moderate but has experienced them in her more severe bouts, whilst a friend who is very severe has never experienced them.
 
V.R.T. said:
When I have the energy I will try and reply to this in detail.
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My illness started like this on January 9, 2022, around 6 PM. I was playing a video game, my leg was on the table, and I tried to get up. I fell to the floor; my right quadriceps wasn't responding... it was vibrating like a phone! I was able to get up 10 seconds later. After that, a few hours later, I started experiencing symptoms that have never left me: a burning sensation on my skin, paresthesia, tingling all over my body, and chills that have never gone away (no burning skin now). They start at the back of my neck and go down to my thighs. In short, four years later, I've been bedridden for a year in very severe condition. At the time, I had everything done: brain and spinal MRIs, blood tests (they found an old, untreated Lyme infection, a positive Western blot... I thought that was it, but it wasn't...). In short, I won't forget this paralysis of my right quadriceps : the beginning of the end.
 
neophyte32 said:
I fell to the floor; my right quadriceps wasn't responding... it was vibrating like a phone!
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That sounds like a central neurological problem, possibly motor cortex, mid brain or basal ganglia, just conceivably spinal cord. If it settled in 10 seconds there would be no structural change though. I cannot think of any recognised neurological problem that would quite fit, but vibrations or rhythmic oscillations can occur in limbs with reflex sympathetic dystrophy and in that case nobody has any real idea what the heck is going on.
 
Jonathan Edwards said:
That sounds like a central neurological problem, possibly motor cortex, mid brain or basal ganglia, just conceivably spinal cord. If it settled in 10 seconds there would be no structural change though. I cannot think of any recognised neurological problem that would quite fit, but vibrations or rhythmic oscillations can occur in limbs with reflex sympathetic dystrophy and in that case nobody has any real idea what the heck is going on.
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Yes, my neurologist never understood... nothing showed up on the MRI. I had a tramadol addiction problem at the time; I was taking a low to medium dose for three years (75/100 mg). I had mixed it with alcohol that day (I'm convinced it was those years of opioid addiction, sometimes with too much alcohol, that wrecked my central nervous system). But what does that have to do with the MECFS? I'll never know. A few months later, my lumbar puncture revealed a high blood-brain barrier index (8.50 instead of 6.50) as well as a high CSF IgG (50 instead of 35). A few months later, my MECFS really flared up again with severe panic attacks during exertion and a sensation of oxygen deprivation in the brain.
 
neophyte32 said:
I had a tramadol addiction problem at the time; (I'm convinced it was those years of opioid addiction, sometimes with too much alcohol, that wrecked my central nervous system). But what does that have to do with the MECFS? I'll never know.
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That makes it sound as if a CNS event triggered by chronic pharmacological issues led on to an ME/CFS course rather than being a feature of the ME/CFS that followed?

If ME/CFS involves synaptic control somewhere around the hypothalamus, as various things might suggest, then it wouldn't be too surprising that if could be set in motion by other CNS problems as much as cytokines or lymphocytes from infection I guess.
 
Jonathan Edwards said:
That makes it sound as if a CNS event triggered by chronic pharmacological issues led on to an ME/CFS course rather than being a feature of the ME/CFS that followed?

If ME/CFS involves synaptic control somewhere around the hypothalamus, as various things might suggest, then it wouldn't be too surprising that if could be set in motion by other CNS problems as much as cytokines or lymphocytes from infection I guess.
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Yes, I think so. I've always thought that tramadol largely caused my ME/CFS. I also had inexplicable fits of anger at that time, and I still do, actually, an intolerance to cold and heat, difficulty regulating my emotions... COVID just finished me off. How can we support the brain and the central nervous system, the hypothalamus? Science still doesn't know, I imagine... I know that my ME/CFS comes from there...
 
Jonathan Edwards said:
At least we have some reason to look there now, and there are parallel situations where ways have been found to restore normal signalling, even if so far a bit unpredictable.
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You mean we're increasingly aware that the problems originate in this area of the brain? For me, it's obvious, and I've been 100% certain I have MECFS since then, though it's only been severe for a year. But how can we move forward without neurologists on our side?
Because it's rather tiresome, to put it politely, to keep seeing the same research that leads nowhere. I'm lucky to be believed because my case is clear and typical of MECFS, and I'm being offered IVIG (Intravenous Immunization), which is rare. But I'm so severely affected that I'm hesitant. I want my brain, my central nervous system, repaired. But how? Anyway, I'm getting off track. Thank you, Professor.
 
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