Allyson
Senior Member
- Messages
- 1,684
- Location
- Australia, Melbourne
My specialist thinks it may all be due in my case to " stretchy veins " in the Ehlers Danlos (EDS) spectrum
so that when i stand up i get inadequate blood to the brain
(yesterday my BP dropped 20 points in a minute when i stood up - from 125 to 105 systolic but then returned to 125 within 5 mins) so adrenaline must have kicked in quickly
this instant adrenaline release happening constantly may be the cause of many ofl our problems
(possibly leading to low Cerebral spinal fluid levels too which exacerbates things further)
maybe a high protein diet helps as it helps build collagen to strengthen the veins
IM Vit B12 increases blood volume so may help because of that
certainly since he suggested this i have been observing my position in relation to symptoms and noticing a definite correlation
eg. resting sitting up does me no good so it is not the resting that helps but the lying down
yes i am ill after being upright- no exertion needed
and i am better after a day or two lying down
and it would explain why we have an energy boost sometimes for no apparent reason...eg in the evenings or early mornig.. after lying down for 6 hours or so all day or night
not wanting to be over simplistic here but would love to know if anyone has researched this aspect of the illness or if anyone else has observed this correlation between posture and symptoms
years of constant adrenaline boom crashes - and resulting in blood sugar boom crashes too - would take its toll on anyone.
It should be easy to test and even predict crashes according to your position... and yes I know for sure that a certain amount of time spent upright ...even sitting up in a chair doing nothing... will cause me to crash, while after about 2 3 days off lying flat my symptoms will improve or even disappear.
Lyng down is the first thig we all do for a crash, and in fact most of us feel we would die if we coujld not lie down but we never mention it in list of effective treatments
so it may not be fatigue we suffer at all
rather need to be horizontal plus acing muscles and joints, headache, swollen tissues of feet and calves due to fluid estravastation and accumilation there...all of which is summed upp erroneoulsy as fatigue. Fatigue is cured by rest and selppe. ME isn't.
I would love to hear everyone’s thoughts on this theory that comes from top ortodox medical sources please.
at a recent EDS conference it seems the list of symptoms closely overlaps ours.so they may be the same disease for at least some of us…and wiki is not reliable on EDS..
cheers
Ally
so that when i stand up i get inadequate blood to the brain
(yesterday my BP dropped 20 points in a minute when i stood up - from 125 to 105 systolic but then returned to 125 within 5 mins) so adrenaline must have kicked in quickly
this instant adrenaline release happening constantly may be the cause of many ofl our problems
(possibly leading to low Cerebral spinal fluid levels too which exacerbates things further)
maybe a high protein diet helps as it helps build collagen to strengthen the veins
IM Vit B12 increases blood volume so may help because of that
certainly since he suggested this i have been observing my position in relation to symptoms and noticing a definite correlation
eg. resting sitting up does me no good so it is not the resting that helps but the lying down
yes i am ill after being upright- no exertion needed
and i am better after a day or two lying down
and it would explain why we have an energy boost sometimes for no apparent reason...eg in the evenings or early mornig.. after lying down for 6 hours or so all day or night
not wanting to be over simplistic here but would love to know if anyone has researched this aspect of the illness or if anyone else has observed this correlation between posture and symptoms
years of constant adrenaline boom crashes - and resulting in blood sugar boom crashes too - would take its toll on anyone.
It should be easy to test and even predict crashes according to your position... and yes I know for sure that a certain amount of time spent upright ...even sitting up in a chair doing nothing... will cause me to crash, while after about 2 3 days off lying flat my symptoms will improve or even disappear.
Lyng down is the first thig we all do for a crash, and in fact most of us feel we would die if we coujld not lie down but we never mention it in list of effective treatments
so it may not be fatigue we suffer at all
rather need to be horizontal plus acing muscles and joints, headache, swollen tissues of feet and calves due to fluid estravastation and accumilation there...all of which is summed upp erroneoulsy as fatigue. Fatigue is cured by rest and selppe. ME isn't.
I would love to hear everyone’s thoughts on this theory that comes from top ortodox medical sources please.
at a recent EDS conference it seems the list of symptoms closely overlaps ours.so they may be the same disease for at least some of us…and wiki is not reliable on EDS..
cheers
Ally