After decades of having ME/CFS I have just realised what "orthostatic intolerance" means (doh!) thanks to this site and that it may be one of my most activity-limiting symptoms.
I get tired quickly when standing, can't walk for very long (though longer than I can stand) and can't sit normally in an armchair for very long. My day mostly consists of sitting with my feet up on the sofa and even then, I have to lie down for 15 mins each hour to recover. And I lie down for an hour three times a day to keep the fatigue under control.
I thought I had been getting tired because of the energy I was expending by being vertical but now that I've read about OI, I've realised I'm probably not expending much energy sitting with my feet up but that whatever drives OI is making me feel tired.
Two questions, I guess: (1) is there a different pacing regimen for OI than that recommended for ME/CFS-related fatigue that I should be following? (2) are there any treatments specifically for OI that we can safely use ourselves (I'm a bit scared of self-administering salty water in case of hypertension, for example) or ask our doctors for? Particularly well-documented stuff that my UK GP would recognise as credible and as offering him good guidance?
If I have blindly missed some thread that has answered my questions, my apologies and please direct me! I've looked but have just become a bit confused.
ETA: Since posting this I've magically c ome across Cort's very thorough page on OI. My first question still stands, though, and I'm still wondering whether there is a guide to treatment for doctors that I could present to my GP; or whether anyone knows what sort of specialist I should be asking to be referred to for OI. Self-treatment looks as though it might be a bit dangerous because different things seem to be linked to OI (both hypo- and hypertension, if I've understood correctly) and which treatment you should go for depends which end of the spectrum you're on. Or not. I'm confused!
I get tired quickly when standing, can't walk for very long (though longer than I can stand) and can't sit normally in an armchair for very long. My day mostly consists of sitting with my feet up on the sofa and even then, I have to lie down for 15 mins each hour to recover. And I lie down for an hour three times a day to keep the fatigue under control.
I thought I had been getting tired because of the energy I was expending by being vertical but now that I've read about OI, I've realised I'm probably not expending much energy sitting with my feet up but that whatever drives OI is making me feel tired.
Two questions, I guess: (1) is there a different pacing regimen for OI than that recommended for ME/CFS-related fatigue that I should be following? (2) are there any treatments specifically for OI that we can safely use ourselves (I'm a bit scared of self-administering salty water in case of hypertension, for example) or ask our doctors for? Particularly well-documented stuff that my UK GP would recognise as credible and as offering him good guidance?
If I have blindly missed some thread that has answered my questions, my apologies and please direct me! I've looked but have just become a bit confused.
ETA: Since posting this I've magically c ome across Cort's very thorough page on OI. My first question still stands, though, and I'm still wondering whether there is a guide to treatment for doctors that I could present to my GP; or whether anyone knows what sort of specialist I should be asking to be referred to for OI. Self-treatment looks as though it might be a bit dangerous because different things seem to be linked to OI (both hypo- and hypertension, if I've understood correctly) and which treatment you should go for depends which end of the spectrum you're on. Or not. I'm confused!