Fainbrog
Senior Member (Voting Rights)
Hi all,
I can see that this is not the most active part of the forum, but thought I'd ask anyhow..
So, I've been seen by a well renowned cardiologist in London, who, has done oodles of tests to rule in/out POTS/IST etc. and, having done a TTT and CPET (only a single day sadly, but, which I did voluntarily - crazy fool!), he said my muscles were clearly running out of energy very quickly - which I found reassuring as it appears to show one of the theories about ME is present in my physiology.
Anyhow, he suggests I'm a bit POTSy, but not classic, possibly more IST as my HR is high whether am upright or not. They also noted from the CPET that my breathing is a bit all over the place and he wants me to see a respiratory physiotherapist, to see if they can help improve this to see if it helps overall.
I'm open to anything frankly, but, am a tad concerned that my breathing is shallow because I don't have the energy to breath more deeply and/or my nervous system is awry and thus I'm not breathing properly.
Does anyone have any experience of this kind of physio? Did it help or hinder? Anything I should be on the look-out for/red flags etc? I'm concerned that any effort to increase my depth of breathing will deliver oodles of PEM with a massive cherry on top.
I've searched the forum and can't see many posts on this area..
Thanks
I can see that this is not the most active part of the forum, but thought I'd ask anyhow..
So, I've been seen by a well renowned cardiologist in London, who, has done oodles of tests to rule in/out POTS/IST etc. and, having done a TTT and CPET (only a single day sadly, but, which I did voluntarily - crazy fool!), he said my muscles were clearly running out of energy very quickly - which I found reassuring as it appears to show one of the theories about ME is present in my physiology.
Anyhow, he suggests I'm a bit POTSy, but not classic, possibly more IST as my HR is high whether am upright or not. They also noted from the CPET that my breathing is a bit all over the place and he wants me to see a respiratory physiotherapist, to see if they can help improve this to see if it helps overall.
I'm open to anything frankly, but, am a tad concerned that my breathing is shallow because I don't have the energy to breath more deeply and/or my nervous system is awry and thus I'm not breathing properly.
Does anyone have any experience of this kind of physio? Did it help or hinder? Anything I should be on the look-out for/red flags etc? I'm concerned that any effort to increase my depth of breathing will deliver oodles of PEM with a massive cherry on top.
I've searched the forum and can't see many posts on this area..
Thanks