PEM - so bloody illogical

I'm getting PEM at the drop of a hat right now - possibly because of a month in which I had a possible virus for a week, a week long orthostatic headache, then food poisoning. And a couple of migraines.

My energy envelope is tiny. So I'm in bed round the clock, lots of naps and darkness, with little forays to the bathroom or to make a cup of tea when I muster the strength. Only managed 2 showers in this time.

Anything more, and it's PEM. For a day or three, a week...

Today I'm suffering because I did the online food shop.

Even after 13 years with sodding ME, I just cannot comprehend why my blasted TOES have to burn when I overused my BRAIN!

What's it got to do with my ankles or knees? Yeah, fine, my upper body joints probably got over used with the tap tapping on my phone, but do the rest have to join in the fun?

Maybe there's an argument that I feel more balanced with every bloody joint screaming, than I would if the lower ones were blessedly silent.

Are there any scientific theories on why the hell PEM doesn't have any relation to the body parts or systems used?

 

Sorry you're suffering more than normal.
I also get aches and pains in PEM which bear no relation to what caused it. Usually burning calves and thighs, even if I've not been on my feet and have triggered it through too much cognitive effort. When it's really bad then upper arms too, and it's not like I've been doing pressups or playing tennis!

No idea if there are any scientific theories on it, but I'd also be interested.

 

It just occurred - this burning calves and ankles business. Yes, I'd forgotten, that irritated the heck out of me earlier this year. Then it went away.

I have a feeling this happens when either my OI type issues play up especially in warm weather or I need to up my dose of levothyroxine.

My ankles and lower calves also tend to swell slightly.

 

Thanks @ringding
It's truly mystifying and strange!
I think PEM symptoms generally don't relate to the actual exertion, so I'm very surprised there isn't more attention paid to what the mechanism is.

It's wholly unlike say, arthritis in the knees, where excessive walking gives rise to pain and swelling in the knees, but not in the elbows, shoulders and fingers! Plus a headache. And ghastly flu symptoms. Including a sore throat. And a need to sleep all day... Imagine!

@Invisible Woman Ah, the delightful under active thyroid An increase, or appearance, of all manner of symptoms could be down to that devious little complaint. I'll have to check that out. Thanks.

These are part of my standard constellation of symptoms - just coming on far too quickly.

I'll see if they'll come to me, despite not believing in ME. And the Covid 19 continuing...

 

same here. i always get burning in my legs with PEM, even from mental exertion. in my calf and thigh muscles and the bones it feels like, especially the knees and ankles. but not anything in my arms or uper body that I notice. extra brainfog and burning legs are a consistent duo for my PEM, no matter if it's from mental or physical exertion.

i agree PEM is so confusing and so hard to get a good grip on. I really wonder what the mechanisms behind it all are.

 

Last night i had hollow depleted heavy burning in the muscles on top of my arms/shoulders, both of them, from thinking on the sofa.

So not just legs lol

 

Dr Lily Chu investigated PEM. She found that illness controls and healthy controls had problems after exertion that matched what they had done. In ME people they experienced inflammatory symptoms like, well, malaise or a flu like feeling as well as sore throats, swollen lymph glands and all the systemic problems we get.

She distinguishes post exertional fatigue from the unique poste exertional malaise that comes with ME.

if you go to workwellfoundation.org they have educational materials where they explain their findings from the 2 day CPET testing which shows that our aerobic energy system, the one the body uses as its main energy source is damaged so we are forced to rely too much on the anaerobic system which is an emergency source of energy which is only meant to be used for quick bursts like running for a bus. Healthy people have to go to classes to reach their anaerobic threshold, what we call aerobic exercise.

There is a thread on a recent talk they did for the Sheffield ME group where they talk about the short term, intermediate and long term effects of doing too much which matches or experience very well. They also give ways you can try to help yourself though it is difficult if you do not have the energy to get out of bed.

 

That's a good reference @Mithriel . I watched that today and realised I'd fallen out of some of my good habits recently. Quite sobering that even after 5yrs I still need reminding about how to manage this thing.

 

Lactic acid everywhere no doubt. Brain cramps?

Thank you so much for this

I used to know this info, but it fell out of my inflamed brain.

Which currently feels shrink wrapped. Because Ooops I Did it Again

My shins. Jesus. Like I've been forced to play hockey in PE with the class bully. Recurrent nasty symptom.

I roasted a chicken and chatted with my kids.

Definitely read far too much, but I discovered a newspaper columnist who makes me laugh, and read a lot of his back catalogue. Oh well. Back to black for me.

Hope you've all been less foolish

 

I've slowly read through the Workwell info, in between sleeps and darkness sessions, and their links to research. Then into other research about lactate accumulating from anaerobic energy production.

Too brain dead to have saved and to link any of it. Heck.

The simplest thing I read, and sent my son, was this though:

https://www.meresearch.org.uk/lactate-in-the-brain-2/

If they had proof back in 2010 of lactate accumulating in the brain, which it definitely feels like has been happening with me from the start, and might very seriously be occurring now, is there anyone working on ways to dissipate the wretched stuff for us?

I've read about Celebrex, the mega anti inflammatory that crosses the blood brain barrier, (um, I think), but I'm rightly terrified of taking a painkiller daily. If you do that with Chronic migraines, they end up actually CAUSING more migraines.

So what else is there? Is LDN supposed to help with this? Could Abilify, although that's something to do with dopamine?

Urghhhhh.

Soon I'll have to go back to see a neurologist about my chronic migraines to see if they'll let me try a new expensive drug for prevention. There are no ME doctors here. I don't know if it's worth seeing a Fibromyalgia literate doctor instead as next best. Ugh. I know nothing.

I need to galvanise myself, armed with the Long Covid explanation -

"This thing in my records that says, 'Chronic Fatigue'? I came down with it after getting a virus. First they said I had Post Viral Fatigue. Months later, they said it was Chronic Fatigue...The symptoms are identical. Any system or organ, or combination thereof can be affected.

The medical world is treating this like a new entity. It quite likely isn't.

'In other countries, what I have is called Myalgic Encephalitis - for good reason - and I need to have the neurological component of it taken seriously, investigated, and treated."

It's SO hard to talk to doctors. In their limited time they don't want to read information. They don't want to listen. But I can't let this get any worse.

My brain cramps. And I'm terrified to try and get help. It's so wrong.