That article is interesting. I had formed a tentative theory that the blood vessels relaxed too much, and that was why I sometimes even felt as if I had stood up too fast when sitting in a chair - or very occasionally, even lying flat. That article makes much more sense, though.
It would also explain why the symptoms of atrial fibrillation were so severe.
I want a new body, that is the only answer. If CF sufferers could have subsidised new bodies I reckon we'd all be living and working as effectively as the best.
This is old information. I wonder if anything has been done about it recently, or has it been shown not to be relevant, or simply buried because it doesn't suit the people funding research?
There is a lot of more recent research tying together CF, the various orthostatic/autonomic nervous system problems, and mitochondrial dysfunction. Not to say that they all go together, but in a Venn diagram, that overlap in the middle would be *huge
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New body. *grin* I could use a factory reconditioning, anyway, but have you seen the turnaround? Still, a tuneup would be helpful.
You were talking about symptoms before: "Do you also get a slightly unusual sort of headache with this? I find that even my teeth start to hurt if it goes on long. ... "Then vitamin D deficiency was found by blood tests I paid for to try to find out what else was wrong. I am guessing that is partly due to CF, on account of being too tired to go out often." I do get postural / orthostatic symptoms -- including headaches -- in various combinations
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that's one of the things i discussed with my dr when i was dxed in 1998; he estimated that based on symptoms only (kaiser would not do the actual blood volume testing), mine was at about 55-65% of normal, and he suspected the lower end since i was the sickest cfids patient he'd ever had. i also had severe hypercoagulation.
the things that helped me volume wise are avoiding heat, pushing a LOT of celtic salt, treating system inflammation (which contributed to my hypercoagulation), and drinking 2-4 pins of cheney's homemade gookinade daily.
The hypercoagulation sounds scary; I hope you've been able to get that under control. I have been following an anti-inflammatory diet, too -- for a variety of reasons -- but that's not one of them.
I have been using graduated-compression support socks; not sure they're helping much with the Underdog Syndrome, but at least I have ankles and my shoe size stays put. (Abdominal binders are supposed to be better for maintaining blood volume, I read somewhere -- Vanderbilt site? -- but they're hotter, pricier, harder to fit.)
Also, I push water and salt; try to avoid heat; and find coffee and Ritalin to be helpful if I have to be up for what otherwise might be too long. Slumping / slouching, or even just leaning my head forward, helps me when I start getting lightheaded. (Sitting down helps more -- one reason I <3 my walker. Yeah, keep telling myself that
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the recipe is here: http://www.dfwcfids.org/healing/gokhmbrw.htm (as well as at some other sites); it's a homemade electrolyte recplacer of water, sea salt, and potassium salt (i HIGHLY recommend "also salt" brand; it has lysine in it, which reduces the bitterness of the potassium dramatically
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It would also explain why the symptoms of atrial fibrillation were so severe.
I want a new body, that is the only answer. If CF sufferers could have subsidised new bodies I reckon we'd all be living and working as effectively as the best.
This is old information. I wonder if anything has been done about it recently, or has it been shown not to be relevant, or simply buried because it doesn't suit the people funding research?
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You were talking about symptoms before:
"Do you also get a slightly unusual sort of headache with this? I find that even my teeth start to hurt if it goes on long. ...
"Then vitamin D deficiency was found by blood tests I paid for to try to find out what else was wrong. I am guessing that is partly due to CF, on account of being too tired to go out often." I do get postural / orthostatic symptoms -- including headaches -- in various combinations ( ... )
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the things that helped me volume wise are avoiding heat, pushing a LOT of celtic salt, treating system inflammation (which contributed to my hypercoagulation), and drinking 2-4 pins of cheney's homemade gookinade daily.
Reply
The hypercoagulation sounds scary; I hope you've been able to get that under control. I have been following an anti-inflammatory diet, too -- for a variety of reasons -- but that's not one of them.
I have been using graduated-compression support socks; not sure they're helping much with the Underdog Syndrome, but at least I have ankles and my shoe size stays put. (Abdominal binders are supposed to be better for maintaining blood volume, I read somewhere -- Vanderbilt site? -- but they're hotter, pricier, harder to fit.)
Also, I push water and salt; try to avoid heat; and find coffee and Ritalin to be helpful if I have to be up for what otherwise might be too long. Slumping / slouching, or even just leaning my head forward, helps me when I start getting lightheaded. (Sitting down helps more -- one reason I <3 my walker. Yeah, keep telling myself that ( ... )
Reply
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