3 ms·
Also, in the last decade or so, it turns out like 20% of CFS folk actually have PoTS aka Postural orthostatic Tachycardia Syndrome. I finally got a PoTS diagno
by mxmilkiib 3y ago
Also, in the last decade or so, it turns out like 20% of CFS folk actually have PoTS aka Postural orthostatic Tachycardia Syndrome.
I finally got a PoTS diagnosis last year (along with ASD and ADHD), at 39.
Lying down for 5 minutes then standing up for 10 - if the pulse gets and remains high but with a low blood pressure, that's the main diagnostic criteria.
Symptoms include head rushes, gray outs, brain fog, fainting in like 8%, fatigue, temprature intolerance to hot and cold, cold exteremities, bladder issues e.g. needing to pee more than average ("PoTS bladder"), palpitations as in feeling your pulse (not aythmia) and maybe even rocking/stimming to it (I got great muscle control from trying to cover it up for so long, great for dancing).
Things that help are certain postures, staying hydrated, increasing salt intake by x8 to help the body retain water, leggings or compression socks.
Apparently there are other drugs, but you will be explaining it to most medical folk you meet. I'm waiting for a cardio referral in the UK, though ultimatly it's an autonomic system issue so I would have thought neurology, but we will live and learn.
Possibly maybe I had EDS; zebras keep saying I have such smooth skin and move in a hypermobile way, though I don't pass the standard over-stretch tests, but praying upward behind my back is no problem what-so-ever.
https://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome https://en.wikipedia.org/wiki/Postural_orthostatic_tachycard...
I've just realised I might have "amplified musculoskeletal pain syndrome" also, which is something I had been planning bringing up. I didn't know how to factor the chronic "unable to ever relax" pain underlying everything in.
- DoreenMichele 3y agoThings that help are certain postures, staying hydrated, increasing salt intake by x8 to help the body retain water, leggings or compression socks. That's a lot of salt. Do you also get a lot of respiratory infections?
- mxmilkiib 3y ago"Intravascular volume expansion by salt and water intake: It is suggested that patients with POTS should be encouraged to have a daily oral fluid intake of up to 3 L/day and sodium chloride of up to 8 to 12 g" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10065129/#REF63 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10065129/#REF63 -65 Yeah, I have allergic rhinitis that is arguably chronic, though I'm managing it much better with fexofenadine these past couple of years. Dust from cleaning/being in a space that I haven't had the head to keep properly clean most of the time (ASD/PDA), pollen, and most both cats and dogs :( Some apples can make my mouth tingle in pain for hours. My colds used to always go down to become a chest infection, like 15-+10 years ago. I've the steroid inhaler I've been more consistently taking, again more recently. I don't smoke anymore, but I vape weed (Dynavap). I can have an asthma attack after running 40/50m for the bus, but I can dance sober for several hours on end, so IDK. Edit: oh yeah, I just had nasal septoplasty and turbinate reduction the other weekend, and I get the anti-scar stints out this coming Sunday, which will be fun..!
- DoreenMichele 3y agoThank you.