Discover Top Posts Tagged with #orthostaticintolerance

Hey, just a friendly reminder that it’s totally ok to have a chair in the kitchen and sit down while you cook. Whatever you need to make you

#spoonie #orthostaticintolerance #chronically fatigued #chronic fatigue #mecfs

Something really unexpected happened early this month before the fires. In September I had asked my NP if I could get her to prescribe a rollator for me, as the one I got out of the junk warehouse was in bad shape. I was all ready with my “because let’s face it, even if I build up my strength I’ll still be that person who has to sit on the sidewalk or on store floors at any given time because orthostatic intolerance sucks” but she was already printing the paperwork! She told me I’d be contacted by the company to answer some questions, but I never was. Instead, less than a month later I got a phone call from a delivery service saying they’d be by in a few hours. They arrived early. I signed a tablet. They left. I adjusted the rollator myself (it was set up for someone roughly 50% taller than me). And now I have a rollator with working breaks and a seat that isn’t peeling and handles that don’t fall off when I’m taking it out of my car. It cost me the same as my dumpster dived one: $0. You can always ask your doctor if you think you would benefit from a mobility aid. Or you could be like me and scope out creepy warehouses for one and hope for the best. You don’t need permission. You don’t need to use it 24/7. Just ask. #chronicillness #chronicallyill #chronicpain #chronicfatigue #pots #posturalorthostatictachycardiasyndrome #orthostaticintolerance #agoraphobia #rollator #walker #mobilityaid #disabled #disabledlife #thatactuallyworkedwell #pleasantlysurprised

#pleasantlysurprised #chronicallyill #posturalorthostatictachycardiasyndrome #chronicfatigue #chronicillness #rollator #mobilityaid #thatactuallyworkedwell #orthostaticintolerance #agoraphobia #walker #chronicpain #disabled #disabledlife #pots

Interesting study & technology.

Hopefully it becomes widely available for clinical practice.

Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report

lmonary exercise testing (CPET). Methods: One individual with ME and 1 nondisabled individual underwent a 2-day CPET to induce PEM. Bl

#mecfs #dysautonomia #OrthostaticIntolerance #potsie #pots

BYO = Bring Your Own

#orthostaticintolerance #disability #pots #chronic illness #orthostatic intolerance

The Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients with a Normal Heart Rate and Blood Pressure Response During a Tilt Test

https://www.mdpi.com/2227-9032/12/24/2566

Screenshot from the AMMES May email newsletter

--- Somebody wrote this summary for laypeople when I shared it on Facebook: Summary - 91% of people with ME/CFS had insufficient heart output and hence insufficient blood flow to the brain despite normal heart rate and blood pressure during a tilt test. Ie even though they may not meet criteria for POTS 91% of ME/CFS sufferes have reduced blood flow to brain when body changes position.

#myalgic encephalomyelitis #mecfs #orthostaticintolerance #chronic fatigue syndrome #cfs