RichGotsPots Posted April 1, 2012 Report Share Posted April 1, 2012 Great webinar where he discuss CFS and a few dysautonomias Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 1, 2012 Author Report Share Posted April 1, 2012 Interesting test he shows that blood volume is decreased with prolonged bed rest Quote Link to comment Share on other sites More sharing options...
bellgirl Posted April 1, 2012 Report Share Posted April 1, 2012 Thanks Rich...this is very good...still watching about 1/3 of the way through; may have to come back later to see the rest...going to choir rehearsal Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 2, 2012 Author Report Share Posted April 2, 2012 what most of you already I'm only starting to really understand, that is that POTS and CFS can overlap very closely. I'm learning a lot about my POTS from learning about CFS as well. Look out for another CFS related video too. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 2, 2012 Report Share Posted April 2, 2012 The best advice that Dr Rowe ever gave people with POTS and CFS was that 'inactivity is the enemy' - movement and exercise, while uncomfortable, often helps. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted April 2, 2012 Report Share Posted April 2, 2012 Watched in full...agree with you both. Exercise, as hard as it can be sometimes, is what saved me, when I was so sick, before treatment!! So relieved to finally have some answers, and medication, with all of the other educated compensatory treatments I did for years before being diagnosed!! Thanks, Rich for finding this video... Quote Link to comment Share on other sites More sharing options...
targs66 Posted April 2, 2012 Report Share Posted April 2, 2012 Thanks for posting this - lots of good information. I found it interesting that people can have CFS and orthostatic intolerance before they meet the criteria for POTS or NMH. I think that's true with me - I've been told I have chronic fatigue for years, but it was only when I got very ill that I was diagnosed with NMH. Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted April 2, 2012 Report Share Posted April 2, 2012 Thanks, Rich! This was helpful & informative... I had pretty much dismissed using compression hose because I mostly always have my feet up, but I'm going to give them a try again after watching the video. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted April 3, 2012 Report Share Posted April 3, 2012 I love Dr. Rowe, he consulted with my team at Hopkins when I was there, even though I was a pregnant grown woman, and he is a ped doctor. Thanks for posting, I going to share this!Claire Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 3, 2012 Author Report Share Posted April 3, 2012 The best advice that Dr Rowe ever gave people with POTS and CFS was that 'inactivity is the enemy' - movement and exercise, while uncomfortable, often helps.I agree that's great advice especial because he backs it up with the NASA study that shows bed rest reduces blood volume. But I wonder if it's the supine position and not actually the exercise. I do want to some day get to where I workout my legs. Meanwhile I'm glad I have the knee high compression socks Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 3, 2012 Author Report Share Posted April 3, 2012 I love Dr. Rowe, he consulted with my team at Hopkins when I was there, even though I was a pregnant grown woman, and he is a ped doctor. Thanks for posting, I going to share this!ClaireI know there is a few people on here from Maryland so just for their knowledge is there autonomic specialist at Hopkins besides Dr. Rowe, if so what are their names? Thanks Quote Link to comment Share on other sites More sharing options...
targs66 Posted April 3, 2012 Report Share Posted April 3, 2012 I've seen several things lately that support Dr. Rowe's position that inactivity is the enemy, so I've been trying to increase my activity level (either by walking or gardening). I'm finding, though, that even if I get through the activity without too much problem, the "post exertional malaise" is really kicking my butt for several days after, even though I don't feel like I've overdone it - I am so very achy, tired and just feeling "ill". I'm willing to accept that this may be coincidental and not related to the exercise, but also recently saw something that said that exercise induces a histamine reaction. Do any of the MCAD people (or any of you knowledgeable folk!) know if this is true? If so, is there a way of combating the histamine reaction (for example, do you take anti-histamines during exercise)?thanks!!! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 4, 2012 Report Share Posted April 4, 2012 agree that's great advice especial because he backs it up with the NASA study that shows bed rest reduces blood volume.I dont think that is the main reason why it is beneficial. Inactivity as in upright inactivity as well as lying around. Quote Link to comment Share on other sites More sharing options...
babettess Posted April 4, 2012 Report Share Posted April 4, 2012 Rich,I'm from MD. I called JH to try to get an appt and they don't treat Dysautonomia. They referred me to Dr Ramesh Khurana in Columbia. MD. He has his own autonomic lab and does all his own testing. You can find his info on the DINET list of drs. I highly recommend him.Its my understanding that Dr Rowe is not taking new patients.Babette Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 12, 2012 Author Report Share Posted April 12, 2012 I wonder if Dr. works with other JH docs. He isn't a cardio or a neuro, so there is always a chance he does and they just don't have a department and they are under the radar like Dr. Rowe.. Quote Link to comment Share on other sites More sharing options...
Valentijn Posted April 12, 2012 Report Share Posted April 12, 2012 The best advice that Dr Rowe ever gave people with POTS and CFS was that 'inactivity is the enemy' - movement and exercise, while uncomfortable, often helps.I think this statement is dangerously misleading. While activity undoubtedly is generally helpful with POTS, it also makes ME/CFS symptoms much much worse. And in some cases (mine!) results in OI also getting worse. What's the point in doing something helpful when the harm far outweighs the benefits?It's not a matter of in being "uncomfortable", but of being very sick for somewhere between a couple days and several weeks. In some cases, attempts to increase activity with ME/CFS, even when done gradually, has resulted in serious deterioration or relapses lasting years or decades. Quote Link to comment Share on other sites More sharing options...
corina Posted April 12, 2012 Report Share Posted April 12, 2012 Though I'm a big fan of exercizing, I have to say that it just isn't for everybody. Over the years I have tried really hard to exercise, lying down and sitting and it never ever improved my health. I've tried going to a pt, when I couldn't do that anymore my PT came to my home and later on I tried at a rehab center. I never succeeded but even got worse. It was when I started the octreotide that my body finally was able to recuperate after exercizing. I then went to the same rehab center and people were amazed to see me walking (as amazed as I was myself). I now exercise almost every day (walking, using my exercise bike and swimming on a weekly base) but there still are times that I somehow "overdo" (by far not doing what healthy people do!) and it takes a few hours to recuperate. At that point the OI kicks back in and I really need to rest.What I want to say is, that exercizing is great but it just isn't for everyone, no matter how hard you want to make it work for you. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 12, 2012 Author Report Share Posted April 12, 2012 I honestly don't think exercising helps all that much, but I think it's important to keep active, going out a little at a time, so that we don't get further deconditioning and then lower our blood volume even further. Exercise may help slightly with the stress we feel and it strengthening the leg muscles may help somewhat. Rama I know, knows as much as anyone that exercise isn't a preventative measure because we both had big flares at our peak after exercising tons.For me my breathing problems are induced by exercise so it stinks, I can't and I wish I would Quote Link to comment Share on other sites More sharing options...
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