Caro M

Health Professional, living with #POTS #Dysautonomia ,#PEM, dyslexia advocate, Dees supporter. Views are my own

[Caro M @cjoym40]

@ThePOTSPostman @SpeakOutNow16 Are you worsening? If you’ve been in rolling / cumulative PEM for ages I’d expect your overall function level to be declining . I’d expect a big crash like I got - felt my body shutting down

[Caro M @cjoym40]

@Samanth18984539 @DiaryofaSickGrl @ThePOTSPostman So many people with Pots have undiagnosed comorbid MECFS. PEM needs to be better screened for but there’s not enough knowledge in many doctors so they won’t know you have it. It can be sneaky early on if mild but worsen if ignored

[Caro M @cjoym40]

@ThePOTSPostman When I realised I had PEM it was after crashing day 8 of a 9 day holiday. I thought I’d been managing my POTS but the crash was a result of cumulative PEM and I never returned to that level of function. Now I get it 48 hours after overdoing it.

[Caro M @cjoym40]

@1goodtern @saffronandsky It’s a difficult topic to write about because the concept of rating illness and suffering and worthiness for support is ridiculous and yet it happens every day and most people are unaware until they experience it.

[Caro M @cjoym40]

@karenphysiocouk @ErinAPN1 Exactly! Pacing for ME requires a level of self discipline above and beyond anything else I’ve ever done and I had 4 kids and ran my own business .

[Caro M @cjoym40]

@useless_priest @Oli_veree It’s a stupid name because the issue is ANS dysfunction which is way more involved than simply a HR rise .

[Caro M @cjoym40]

@useless_priest @danka_mm Yeah absolutely . It’s the cerebral hypoperfusion / OI not the actual HR. I just want blood flow in all the right places please!

[Caro M @cjoym40]

@SpeakOutNow16 @ThePOTSPostman It’s coming. The Lumia device is very promising

[Caro M @cjoym40]

@ThePOTSPostman @Jay63104510 For me it’s a different feeling to adrenaline jittery which I feel is in the blood and the buzzing/ thrumming feels nerves/ nervous system. I think it’s backlash from ANS working overtime trying to stabilise me beyond capacity

[Caro M @cjoym40]

@ThePOTSPostman I call it buzzing / thrumming . I get it when I’ve overdone things. It’s awful. I find Valium at night helps dampen it if it’s stopping me sleeping

[Todd Davenport @sunsopeningband]

There's been an interesting graphic floating around the Interwebs recently that I thought might benefit from a post-publication review.

Hope people find it helpful.

[Caro M @cjoym40]

@sunsopeningband @WanderingSally Oh THANK YOU! Can we share it far and wide?

[Jeannie Di Bon @jdibon]

Ehlers-Danlos Syndrome isn’t one condition. It’s 13. And on Rare Disease Day, that distinction matters more than ever 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓

hEDS and HSD together are estimated to affect 1 in 500 people. That’s not rare, that’s one of the most underdiagnosed conditions of our time.

But most types of EDS are genuinely, devastatingly rare. Some types have fewer than 30 cases ever documented worldwide. Most doctors will never see a single patient in their entire career with some of these rarer types.

Today, we stand with every single person across the entire Ehlers-Danlos Syndrome spectrum.

The ones still waiting for a name for what they’re living with. The ones whose type is so rare their doctor has never seen it. The ones who need more funding, more research, and more urgency. Now.

🦓 Every stripe matters.

[Caro M @cjoym40]

@75ThunderRoad We had a similar situation and the phone was a lifeline.

[Caro M @cjoym40]

@yogastephy @saffronandsky For me I find listening way less taxing than reading with my eyes. And I was sheets a good, fast reader before becoming unwell

[Caro M @cjoym40]

@Naomi_D_Harvey @deborahbrian @Michaeltikus I don’t get food or fragrance issues either but I do get bad hay fever and allergies yo certain insects and spontaneous occasional rashes. So who knows? H1 antihistamines help somewhat . H2 haven’t noticed a difference yet but only tried one.

[Caro M @cjoym40]

@blondemedSJW @SalvMattera Most patients would rather you say “ I don’t know “ rather than “ I think it’s in your head “ or a misdiagnosis . History shows us there are many legitimate illnesses that once had no test and were wrongly thought yo be psychological.

[Caro M @cjoym40]

@ThePOTSPostman Have you tried radical rest?

[Todd Davenport @sunsopeningband]

So saddened to read about another person who tried to live with ME and chose euthanasia over the inertia and indifference of a medical system that provides neither treatment nor care. People are literally dying while society dismisses the problem as a little “chronic fatigue.”

[Caro M @cjoym40]

@DiaryofaSickGrl It really is the most ridiculous thing to think. The number of people faking would be like a drop
In the ocean compared to the numbers actually unwell. And who would choose illnesses that are well known to be misunderstood / gaslit?