Thanks but Tania it is quite subtle ... just a general feelling of wanting to lie down and not feeling great; i notice it more after a hot meal and am watching it.
I also get sugar cravings after meals which may be due to the increased blood to the stomac...less blood for the brain...so less sugar for the brain which needs a lot of sugar???
Anyonhe else notice this too?
Allyson,
I always read your posts with anticipation. Your topic still mesmerizes me, because it is so true in my case. Connective tissue disorder is at the root of what ails me. The stretchy veins causes adrenal panic, hypoperfusion to the brain, fatigue, oxidative stress, reactivity to exercise, bowel problems (starting from birth in my case), broken up sleep, etc.. I'm not sure if categorizing people by number in EDS is very helpful, because they will find there are probably hundreds of types. It seems to me more of a continuum than a point by point scale. This will just lead to people not getting diagnosed, in my opinion.
It seems like every case of EDS has its peculiarities. The obvious crash you get after eating does not surprise me. Because I think what causes most of your reactions is an adrenal crash. The raising and lowering of the body's blood sugar is very much of a adrenal-reactive action.Probably the hypothalamus is screaming in pain. My mother used to lie down after getting out of the shower. I think that was a POTS or OI reaction.
You obviously nailed it when you said the lack of blood perfusion to the brain has sensitized you to movement in time and space. Flying, particularly, against the path of the sun, in long haul flights, definitely impacts the EDS brain. I don't know how, but your HPA axis senses when you have lost hours in travel as you pass over time zones. I have felt these effects many times. I didn't get a permanent crash, like you did, but it was a very nasty reaction.
I don't know where you live in Australia, but it seems like being where seasons change here it exacerbates symptoms. With the lengthening and shortening of days, my body instinctively senses the change, and I feel malaise, can't sleep, get gut problems.
I could not understand why I would get diahrea, hemmorhoids, constipation, when I basically fasted for my entire flight. People would tell me "it's just jet lag" but it was way more than that. My brain has its own barometer and light sensor: and they are hooked directly into my adrenal glands. I guess this all falls under the heading "oxidative stress" but what do I know?
I remember as a student always wanting to lie down while reading or studying. My father was a typical Depression era dad, where if you are not not sitting upright in a chair (of course a hard wooden chair!), you were not properly studying. I realized instinctively my problem sitting up, and laid down pretty much for all studying after high school.
I have to say one thing that has struck me though. This is going to seem very strange but: It seems like many of the people who have EDS-like conditions seem to maintain youthful complexions as they get older. I have seen this in the skin of both men and women with this condition.
My mother and grandmother both had your illness, and neither had any wrinkles till well into their mid-50s. Of course, they had pallid complexions, exhausted eyes, lack of circulation in cheeks. But otherwise they looked great. Their skin was very delicate and light, and never had much collagen, so there wasn't much to collpase. It just stayed perfect. People were always telling us "gee, your mother looks young."
I also think many EDS folks have triangle-shaped faces, because many have a narrow palate roof. This is considered to be an attractive feature in women. It tends to make their eyes seem larger, which is culturally distinguished. My mother and grandmother both had this, and my father has said he found my mother attractive because of these features.
So mabye there is one upside to being crippled with EDS. My mother, being sick with EDS, and stuck in a backwoods southern town, lucked out when my dad married her. They moved away to the big city, she got away from her oppressive family, town. So maybe EDS helped her escape.
And I hate to say this: I noticed that many of the guys who are born with this seemed to me as more feminized or child-like in their appearance or constitiution. That is not to say they are gay or of another sexual orientation. But having EDS gives a person a soft complexion and a soft appearance. We have a friend who is a physician, and she has hyper-mobile joints, and so does her son. He has had to transfer twice because of bullying by schoolmates. So I know it can be an issue.
I mentioned this to one of our premier ME specialist docs here, since having been to ME support group meetings, I had met many guys with this illness. I thought many of the guys were esentially "metrosexual" like myself. ie, I never met a boxer or a night club bouncer at one of those meetings. Anyway, the doc thought I was calling all male patients "weak" or "sissies". So she scolded me, told me I was all wrong, said I was negatively generalizing. This woman is very popular with ME/CFS patients, but she is still looking for a simple answer to an complex illness, and she doesn't listen to patients. Obviously I did not go back.