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
Early diagnosis is key in preventing the exacerbation of the afflicted body's progression towards premature deterioration and ultimate enhancement of the patient's lifespan and overall quality of life.
Although all types of Ehlers-Danlos syndrome affect the joints and many also affect the skin, features vary by type. An unusually large range of joint movement (hypermobility) occurs with most forms of EDS, particularly the hypermobility type.
Infants with hypermobile joints often appear to have weak muscle tone, which can delay the development of motor skills such as sitting, standing, and walking. The loose joints are unstable and prone to dislocation, chronic pain, and early-onset arthritis. Dislocations involving both hips are a characteristic finding in infants with the arthrochalasia type of Ehlers-Danlos syndrome.
Many people with Ehlers-Danlos syndrome have soft, velvety skin that is highly elastic (stretchy) and fragile. Affected individuals tend to bruise easily, and some types of the condition also cause abnormal scarring. People with the classic form of Ehlers-Danlos syndrome experience wounds that split open with little bleeding and leave scars that widen over time to create characteristic shallow "cigarette paper" scars. The dermatosparaxis type of the disorder is characterized by skin that sags and wrinkles. Extra (redundant) folds of skin may be present as affected children get older.
Some forms of Ehlers-Danlos syndrome, notably the vascular and kyphoscoliosis types, can involve serious and potentially life-threatening complications. Blood vessels can tear (rupture) unpredictably, causing internal bleeding, stroke, and shock. The vascular type of Ehlers-Danlos syndrome is also associated with an increased risk of organ rupture, including tearing of the intestine and rupture of the uterus (womb) during pregnancy. People with the kyphoscoliosis form of Ehlers-Danlos syndrome experience severe, progressive curvature of the spine that can interfere with breathing.
See Ehlers Danlos Syndrome -Morphopedics for more great information regarding description, anatomy, incidence/prevalence, clinical presenation of all types, potential etiologies, diagnostic tests, and conservative treatments.
Ehlers Danlos Syndrome: Signs and Symptoms
Btw, I have low b12 am not a vegetarian...
Totally agree that wiki is not comprehensive enough...