Almost every ME patient suffers from Orthostatic Intolerance, commonly referred to as OI.
This means, every posture with orthostatic challenge leads to symptoms which can be pretty severe.
Orthostasis is a term that combines the ancient greek word for “upright” (ὀρθός / orthos ) with the one for posture or standing ( στάσις / stasis ).
But actually every posture, besides lying flat puts orthostatic strain on your body.
The hearth has to work harder to get enough oxigenated blood to all tissues.
And when you are healthy, you are constantly changing posture. This only possible with a healthy regulatory system. The autonomic nerve system is in charge of rising or lowering bloodpressure according to the needs of your body in whichever situation it finds itself in right now.
Usually brain, bloodvessels and the autonomic nerve system work together to ensure this real time regulation.
Another factor is blood volume. It has been shown, that ME patients tend to have lower volume. Adding to the problem is, that the volume of circulating blood is also decreased, because of pooling of blood in legs and feet while being upright.
As all organs and tissue types need oxygen, lacking it leads to a myriad of symptoms.
Feeling dizzy, fainting spells, headache, blurred or other kinds of altered vision, nausea, fatigue, weakness, sweating, palpitations, breathing difficulty, shaking, sensitivity to heat, pallor, cognitive problems, bad sleep and even anxiety may be symptoms of orthostatic problems.
The severity of symptoms varies from patient to patient and also during the course of the illness, but can be very debilitating.
This is why many ME sufferers are constantly desperate for an opportunity to lie down.
I have such an instant relief that I feel unburdened the moment I lay my head on the pillow that it feels as good as sex and chocolate combined. And I am kind of ok, even while still crippled with OI unrelated symptoms.
Many ME patients have some relief from OI symptoms when wearing pressure stockings. The thigh to hip high ones work best.
Lots of fluids and increased salt intake can help to maintain enough bloodpressure when upright as well.
Salt works on the kidneys so they hold on to more water than they usually would. This increases blood pressure. This is why otherwise healthy people, eating a high sodium diet, often at some point develop high bloodpressure.
OI in ME patients needs more research. But hypothetically failing of any of the organs incolved in blood pressure modulation or the communication between them in addition of reduced blood volume would lead to OI problems.
You probably get it. OI is a real bummer and can make you feel like crap. So please never judge a person with ME when he/she acts strangely or is in desperate need of some ” horizontality”.
Please lend him/her your sofa and your voice in speaking out for ME patients.