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Chronic Fatigue Syndrome
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<blockquote data-quote="Marguerite" data-source="post: 15686" data-attributes="member: 1991"><p>Neurally Mediated Postural Hypotension - I did a TV interview on that back when difficult child 3 was a baby. I remember, because I had a friend mind him in the Green Room while I did my 'thing'. I was supposed to be there to discuss it from a medical/scientific point of view and after all my trouble to get there all the interviewer wanted from me was "Exhibit A" stuff, I was so angry. (They could have got someone else who didn't have to drive halfway across Sydney, with a baby).</p><p>That would have been back in 1994-5 some time. Probably about May 95, no later. So people were talking about it then - and discounting it.</p><p></p><p>The concept - that people with this symptomatology have a problem with their body adapting to changes in body position and modifying/normalising blood pressure with changes in posture or position. It's sort of -"here's another possible explanation" rather than an alternative explanation for what is happening in CFS. They were also suggesting that such patents had too low a salt level in their bodies. At that time we did not recommend people add salt to their health regime without competent medical supervision.</p><p></p><p>It is worth checking this out, though. You can test this simply, or expensively. The simple way is to go to your GP and lie down in his back room for half an hour, at least. Get him to take your BiPolar (BP) while you're still lying down. Then stand up, with him immediately taking your BiPolar (BP) again. Some patients feel dizzy when suddenly standing up. Frankly, I don't think this brief dizzy spell could ever be mistaken for CFS. It's like mistaking a splinter in your finger for a broken arm. Mind you, if you HAVE hypotension it's an easy fix. (and for those unsure - "hypo" = low, or under, as in "hypodermic" which goes under the skin. "Hyper" = over). In many cases, a glass of water, especially containing some electrolytes, will work fast. But neurally mediated postural hypotension - it may be a bit more complex to fix, or may involve some level of adaptation. But you should get a neurologist to check it out, not just take some 'expert's word for it. The CFS world abounds with doctors with "revolving door" dxes. Every patient they see comes out that revolving door with the same diagnosis.</p><p></p><p>As I was 'so kindly' told some years ago, CFS is a garbage bin diagnosis. It's the label you get when no other label fits. As a result, there is always the chance that you HAVE something treatable and identifiable, it's just that nobody's found it yet. And once they apply the label, a lot of doctors stop looking.</p><p></p><p>Another one that has been thrown at us over the years - hyperventilation. We're over-breathing, didn't you know? OK, some people maybe, who get a CFS label when breathing into a paper bag would have fixed it. THAT dates back to 1988. Another one from the UK.</p><p></p><p>Then there's the cold bath theory. It too came from the UK, I recall, about 1992-3? Maybe slightly earlier. There was a strict regime you had to follow (and of course you had to send money to get the charts sent back to you, as to how long to bathe and at what temperature). We saw a copy of a paper which published the chart - then the mob that published the chart got sued (or threatened with lawsuit - not sure now). But we'd inadvertently got a copy of the chart - it was no big deal and frankly, not necessarily relevant. We all adapt. The premise was that if you have a tepid, then cooler, bath each day for a few minutes, dropping a degree every few days and increasing by about five minutes a day, your pain levels will improve. Apparently it works for some. Interestingly, it definitely works for MS (which my doctors are now debating could have been what I've had all these years).</p><p></p><p>If someone suggests something to you as a possibility, it's always worth considering. But chances are, it's been around before. And if they're offering you assessment and treatment at exorbitant cost - chances are it's a rip-off. We're like arthritis patients - not in immediate danger of dying, therefore ripe for exploitation. I've had some fascinating 'treatments' offered to me over the years. I've even tried a number of them.</p><p></p><p>I now keep a very low profile on this topic - I don't even trawl the websites any more, because I kept coming across people I preferred to avoid (past flamers, among others). My own doctors are now focussing on aspects of my condition that do not seem so CFS-like, so as a result I tend to not think much about CFS either. But all that information in my head just won't go away...</p><p></p><p>You do need to hang on to your humour and to constantly look for the beauty in your day and in your life. Find a life beyond chronic illness - it is there and worth enjoying every minute.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 15686, member: 1991"] Neurally Mediated Postural Hypotension - I did a TV interview on that back when difficult child 3 was a baby. I remember, because I had a friend mind him in the Green Room while I did my 'thing'. I was supposed to be there to discuss it from a medical/scientific point of view and after all my trouble to get there all the interviewer wanted from me was "Exhibit A" stuff, I was so angry. (They could have got someone else who didn't have to drive halfway across Sydney, with a baby). That would have been back in 1994-5 some time. Probably about May 95, no later. So people were talking about it then - and discounting it. The concept - that people with this symptomatology have a problem with their body adapting to changes in body position and modifying/normalising blood pressure with changes in posture or position. It's sort of -"here's another possible explanation" rather than an alternative explanation for what is happening in CFS. They were also suggesting that such patents had too low a salt level in their bodies. At that time we did not recommend people add salt to their health regime without competent medical supervision. It is worth checking this out, though. You can test this simply, or expensively. The simple way is to go to your GP and lie down in his back room for half an hour, at least. Get him to take your BiPolar (BP) while you're still lying down. Then stand up, with him immediately taking your BiPolar (BP) again. Some patients feel dizzy when suddenly standing up. Frankly, I don't think this brief dizzy spell could ever be mistaken for CFS. It's like mistaking a splinter in your finger for a broken arm. Mind you, if you HAVE hypotension it's an easy fix. (and for those unsure - "hypo" = low, or under, as in "hypodermic" which goes under the skin. "Hyper" = over). In many cases, a glass of water, especially containing some electrolytes, will work fast. But neurally mediated postural hypotension - it may be a bit more complex to fix, or may involve some level of adaptation. But you should get a neurologist to check it out, not just take some 'expert's word for it. The CFS world abounds with doctors with "revolving door" dxes. Every patient they see comes out that revolving door with the same diagnosis. As I was 'so kindly' told some years ago, CFS is a garbage bin diagnosis. It's the label you get when no other label fits. As a result, there is always the chance that you HAVE something treatable and identifiable, it's just that nobody's found it yet. And once they apply the label, a lot of doctors stop looking. Another one that has been thrown at us over the years - hyperventilation. We're over-breathing, didn't you know? OK, some people maybe, who get a CFS label when breathing into a paper bag would have fixed it. THAT dates back to 1988. Another one from the UK. Then there's the cold bath theory. It too came from the UK, I recall, about 1992-3? Maybe slightly earlier. There was a strict regime you had to follow (and of course you had to send money to get the charts sent back to you, as to how long to bathe and at what temperature). We saw a copy of a paper which published the chart - then the mob that published the chart got sued (or threatened with lawsuit - not sure now). But we'd inadvertently got a copy of the chart - it was no big deal and frankly, not necessarily relevant. We all adapt. The premise was that if you have a tepid, then cooler, bath each day for a few minutes, dropping a degree every few days and increasing by about five minutes a day, your pain levels will improve. Apparently it works for some. Interestingly, it definitely works for MS (which my doctors are now debating could have been what I've had all these years). If someone suggests something to you as a possibility, it's always worth considering. But chances are, it's been around before. And if they're offering you assessment and treatment at exorbitant cost - chances are it's a rip-off. We're like arthritis patients - not in immediate danger of dying, therefore ripe for exploitation. I've had some fascinating 'treatments' offered to me over the years. I've even tried a number of them. I now keep a very low profile on this topic - I don't even trawl the websites any more, because I kept coming across people I preferred to avoid (past flamers, among others). My own doctors are now focussing on aspects of my condition that do not seem so CFS-like, so as a result I tend to not think much about CFS either. But all that information in my head just won't go away... You do need to hang on to your humour and to constantly look for the beauty in your day and in your life. Find a life beyond chronic illness - it is there and worth enjoying every minute. Marg [/QUOTE]
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