Like many of us with CFS I have orthostatic intolerance and although I've not had it measured I'm assuming I probably have the low blood volume that often goes with it. Dr Bell said that 80% of his patients with CFS had reduced blood volume, red cell mass, or both.
My doctor advised increasing my salt and water intake; I'm up to 5g salt/day and decided yesterday to measure how much I drank and how much I retained. I drank 3.3 litres (just drinking in response to thirst) and peed 3.8 litres, having been to the bathroom 17 times (there will be some measurement error but it's clear I'm basically not retaining what I'm drinking).
I've been reading about this and it's clear that according to Dr Bell and others, CFS people with low blood volume have a hard time increasing it - we just pee out any increased fluid intake. Dr Bell has written a very interesting account of trying a daily saline drip on 25 CFS patients; most benefited, some to the extent that they were able to return to normal life; however, it requires having a permanent catheter inserted for the line and infection (potentially severe blood infection) is pretty much inevitable at some point. Dr Bell points out it's not a cure, it just improves the symptoms.
As Cort points out on one of his treatment pages, erythropoietin has been trialled in CFS twice and both times increased blood volume but not patients' health.
So, questions:
*Is there any point trying to increase our blood volume - would it actually improve our health if we did?
*Has anyone managed to go from peeing out whatever they drink to retaining some and managing to increase their volume? If so, how?
*Does increasing salt intake have any effect?
*Has anyone been treated for diabetes insipidus (the symptoms of which are excessive thirst & peeing alot)? What with? Did it help your CFS symptoms or just mean you peed less?
Right. off to the bathroom...
My doctor advised increasing my salt and water intake; I'm up to 5g salt/day and decided yesterday to measure how much I drank and how much I retained. I drank 3.3 litres (just drinking in response to thirst) and peed 3.8 litres, having been to the bathroom 17 times (there will be some measurement error but it's clear I'm basically not retaining what I'm drinking).
I've been reading about this and it's clear that according to Dr Bell and others, CFS people with low blood volume have a hard time increasing it - we just pee out any increased fluid intake. Dr Bell has written a very interesting account of trying a daily saline drip on 25 CFS patients; most benefited, some to the extent that they were able to return to normal life; however, it requires having a permanent catheter inserted for the line and infection (potentially severe blood infection) is pretty much inevitable at some point. Dr Bell points out it's not a cure, it just improves the symptoms.
As Cort points out on one of his treatment pages, erythropoietin has been trialled in CFS twice and both times increased blood volume but not patients' health.
So, questions:
*Is there any point trying to increase our blood volume - would it actually improve our health if we did?
*Has anyone managed to go from peeing out whatever they drink to retaining some and managing to increase their volume? If so, how?
*Does increasing salt intake have any effect?
*Has anyone been treated for diabetes insipidus (the symptoms of which are excessive thirst & peeing alot)? What with? Did it help your CFS symptoms or just mean you peed less?
Right. off to the bathroom...