Everyone with PEM/PENE has dysautonomia but not everyone with dysautonomia may have PEM/PENE. Pass it on. - ThreadSky

sunsopeningband.bsky.social • 104 days ago

Everyone with PEM/PENE has dysautonomia but not everyone with dysautonomia may have PEM/PENE.

Pass it on.

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matthewjdalby.bsky.social•104 days ago

Triggering dysautonomia seems like a good way to trigger PEM/PENE too.

sunsopeningband.bsky.social•104 days ago

Yeah. 😐

jeanofthedead.bsky.social•104 days ago

And then there’s me, who somehow has dysautonomia triggered by LC- but not POTS. No changes in HR or BP when changing positions. But I cannot walk around without compression sleeves, and can’t use any muscle group for more than 30 seconds without PEM a day or two later, and cramping galore.

humanity101.bsky.social•103 days ago

Sorry to hear. In some instances, co-existing hypomagnesaemia may contribute to increased muscle cramping.

jeanofthedead.bsky.social•103 days ago

Not a bad thought! I’ve only tested serum levels, but everything always comes back clean and supplementing Mg taurate for several months didn’t change any of my symptoms. Magnesium is usually great, though!

mckatt.bsky.social•104 days ago

📌

simonmcg.bsky.social•104 days ago

Can you add some links for studies confirming that?

annasteen.bsky.social•104 days ago

Would be great to have some references for this claim. I know people who have PEM, but don't seem to have dysautonomia.

sunsopeningband.bsky.social•104 days ago

Sure. Here's one off the top of my head. This review of literature involving thousands of patients biases those who are mild-moderate. My guess is the prevalence is a lot higher in severe to very severe. https://pubmed.ncbi.nlm.nih.gov/30968005/

sabineg.bsky.social•104 days ago

📌

myrljohnson.bsky.social•104 days ago

📌

prairiejen.bsky.social•103 days ago

📌

pamelaraasen.bsky.social•103 days ago

Thanks. Good research article and yes doesn’t accurately reflect severe ME

joissummers.bsky.social•103 days ago

I am trying to access POTS treatment and am reluctant to do a tilt table due to v ltd baseline and PEM (have done the lean test). Any ideas of what to say. I’ve said what I’ve said here and have just been told that they’ll keep appointment in calendar for now in case I change my mind. 1/

joissummers.bsky.social•103 days ago

Treatment suggestions have been increase water and salt which I’ve done, compression stockings (can’t do) and …going cycling (I can literally only make it to the bathroom and eventually make it back to bed on some days)

joissummers.bsky.social•103 days ago

I didn’t know that.

mayalongcovid.bsky.social•103 days ago

📌

carolrifkabrunt.bsky.social•104 days ago

I've thought about this a lot re:my daughter. She had POTS and ME. Now pretty much just POTS. There is some degree of PEM even with just POTS. If you've been doing anything upright your brain will be somewhat oxygen deprived and your heart will have been working overtime. Both things v exhausting.

carolrifkabrunt.bsky.social•104 days ago

...and can last more than normal fatigue. Difference when she had ME was lymph node swelling, more bodily pain, completely not susceptible to ordinary colds/flu. So immune system involvement that's not there with dysautonomia.

evenicholls.bsky.social•103 days ago

I've had ME for 27 years, and I mostly don't have those three symptoms. If she still has significant PEM, are you sure she doesn't still have ME, and it's not just that she's moved on to a different phase of it? I was very feverish and sleeping far more in my first year of ME, for instance.

carolrifkabrunt.bsky.social•103 days ago

She doesn't have PEM anymore. Her POTS is also relatively well controlled with medication...until she gets sick with a normal virus and everything goes haywire. She seems to be able to distinguish between POTS fatigue and ME fatigue at this point and hasn't had PEM/ME fatigue for a few years now.

evenicholls.bsky.social•103 days ago

That's great! I've heard that when people do recover from ME, it's generally within the first couple of years. It seems to make a huge difference if they can drop everything and rest, something particularly hard for adult women.

carolrifkabrunt.bsky.social•103 days ago

She was 15 when she first became seriously ill/bedbound. Still so grateful that UNREST came out just then. We watched it together and I said "Thank god you don't have that!"only to realise later that, yup, she had that. Kept her home, let her rest, researched like crazy for the next couple years.

sunsopeningband.bsky.social•104 days ago

(Although, crikey, that list of signs and symptoms of dysautonomia sure resembles PEM/PENE, doesn't it? So much overlap.)

sunsopeningband.bsky.social•104 days ago

Maybe why exercise isn't a panacea for dysautonomia is because of unrecognized PEM/PENE in that population. And the reason some people with apparent PEM/PENE respond exercise is because it's working on some level for dysautonomia--but potentially at the expense of the rest of the clinical picture.

sunsopeningband.bsky.social•104 days ago

Dysautonomia and PEM/PENE is the proverbial rock and a hard place in systems-level pathophysiology. Can't exercise because the system won't adapt normally to acute and chronic overload. Yet it would be great to be able to exercise for the putative hemodynamic benefits--that are unlikely to show up.

coastalthinking.bsky.social•102 days ago

📌

notunpackedyet.bsky.social•104 days ago

I'm trying to do the Muldowney protocol because I have CCI/AAI (and ME, and OI (maybe POTS), and tethered cord). Weirdly, I think worst of PEM has been helped by blood thinners lately. But I really can't unpick all the symptoms to know what's causing what. All I know is that physio is...urg.

bendyhedsandco.bsky.social•104 days ago

Can you clarify that protocol please, not sure if I know it.

notunpackedyet.bsky.social•104 days ago

Google Kevin Muldowney and "elhers danlos syndrome" and it should come up. He and his wife, also a physiotherapist wrote a book so you can follow the protocol - they're in the US. My neurosurgeon in Barcelona recommended it and seems to have v good reviews from ppl with EDS.

joissummers.bsky.social•103 days ago

📌

fedbybirds.bsky.social•104 days ago

I really feel this! I can tell I need to make my muscles stronger to stop POTS getting worse - but how to do that without wiping myself out so badly I can’t do my job? 🤷‍♀️ Feels like an unbreakable vicious circle

otskiff.bsky.social•104 days ago

100% relate

emilyrj.bsky.social•103 days ago

Figuring out I had dystonia and getting on meds for it plus starting to get neurosurgeries for spinal issues helped my muscles more than anything else did for decades

bendyhedsandco.bsky.social•104 days ago

🎯 I'm now looking into extent of lymphatic issues which maybe part of a theory. It sounds plausible what I've seen so far (early days) could explain why % have PEM/PENE

otskiff.bsky.social•104 days ago

In the early days I tried the CHOP protocol. I did it for 5 months and never made it further than week 4 because unsurprisingly I got worse if I ⬆️

Then I returned to work and couldn't do it at all.

Now I'm too unwell to work and can't even consider attempting anything like that 🫠

teebone21.bsky.social•104 days ago

Thank you so much! It is really hard to have these diseases and feel constantly misunderstood even by specialists you work with. Your posts give me hope

chromatowski.bsky.social•104 days ago

I try to be a happy warrior because I think it works better but whew I am really tested when I think of how this very, very basic concept is apparently too difficult for most who’re meant to be caring and advocating for those of us with dysautonomia.

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