mkoven Posted May 10, 2008 Report Share Posted May 10, 2008 Hi,I just saw my ans doc and she has suggested I try cardiac rehab. I've looked through past posts, and it looks like those who've done it find it helpful.Can anyone tell me specifically what you did, and whether you were treated differently from standard cardiac patients?I actually walk about a half hour a day as it is, but sometimes I feel too unwell-- faint, chest pain, short of breath. Then there's the issue of my eds joints. I'm okay if I can stop regularly to squirm a joint back into position, but treadmills and I don't get along, cause I stop too often and suddenly to resposition an ankle or a hip. And I can't just keep going on a subluxated joint without serious pain and longterm injury.Just curious if/how rehab was adapted to accommodate you. Quote Link to comment Share on other sites More sharing options...
iheartcats Posted May 13, 2008 Report Share Posted May 13, 2008 My doctor is suggesting this, too - so I'll just thank you for posting this! Quote Link to comment Share on other sites More sharing options...
mkoven Posted May 13, 2008 Author Report Share Posted May 13, 2008 Hmmm.. almost like it's a coincidence, eh? Quote Link to comment Share on other sites More sharing options...
iheartcats Posted May 22, 2008 Report Share Posted May 22, 2008 I'm still waiting to do this...but they think it will help... Quote Link to comment Share on other sites More sharing options...
mkoven Posted May 22, 2008 Author Report Share Posted May 22, 2008 I'm still waiting to do this...but they think it will help...I finally have my first appointment. I'm starting at "phase 3," which means not covered by insurance. Essentially, I get to exercise with people on hand if I get symptomatic, but no close supervision. 47 USD a month. I have my first meeting tomorrow. Not sure what to expect.I can currently walk 45 minutes at a good clip on days when things aren't too bad. but I can't stand still to save my life, without feeling like $%^&! I don't think I"m the typical cardiac patient. I need advice on what to do on the bad days-- i.e. premenstrually. My bp does some very strange things then-- big dips, big rises. I also have eds, so that joint gentleness is also key. I can't just be plopped on a treadmill. I often have to pause to reposition sloshy joints or I have major pain.I'm open but a little skeptical. Quote Link to comment Share on other sites More sharing options...
mkoven Posted May 23, 2008 Author Report Share Posted May 23, 2008 I just met with the people at cardiac rehab and they need more info on how to manage me, as they haven't worked with anyone like me before. Basically my bp kept dropping during exercise.Before exercise I started at 110/53 sitting. I went to 96/56 immediately upon standing.When I started exercising, on a seated/recumbent bike, it went to 90/40, and then to 72/38. When I stopped it went to 112/65. And of course I felt lightheaded, chest pain, short of breath. Indeed, it's supposed to go up and not down, and certainly not that far down. Typically they said they would send someone with those symptoms and vitals to the er. But we've been there and done that. When I checked it on the way out of the hospital, it was 135/68. Hard to know if I'm coming or going.Granted, I"m having a bad day, but they don't know how to proceed. And I don't either.Michele (Koven) Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted May 24, 2008 Report Share Posted May 24, 2008 Hi Michele--When I did cardiac rehab several years ago, I was at my worst, and the program was sort of tailored to my needs through trial and error. I think the heart rate monitor was the most important thing for me because it kept me near or below my target heart rate.I also found that lying down flat on a bench after exercising helped my BP to stabilize.Additionally, when I began, I didn't do long sessions of exercise. I had to listen to my body and stopped after only a few minutes. This got better at times, but around my period or on bad days, I would have to stop if I became too symptomatic.My tech developed a dizziness scale (from 0-4) with me so that I could communicate if I had a spike in lightheadedness.I also noticed from my documented BP and HR over time that I did better on less beta blocker, so the charting of my vitals was also very helpful.Hope this helps!Kristen Quote Link to comment Share on other sites More sharing options...
medicalenigma Posted May 29, 2008 Report Share Posted May 29, 2008 Hi MichelleI just got diagnosed with OI but i too was wondering about cardiac rehab and how it differs from physical therapy... I am so overweight and atrophied but afraid to exercise as my resting heart rate is already often over 100. Anything you find out would be greatThanksnjHi Michele--When I did cardiac rehab several years ago, I was at my worst, and the program was sort of tailored to my needs through trial and error. I think the heart rate monitor was the most important thing for me because it kept me near or below my target heart rate.I also found that lying down flat on a bench after exercising helped my BP to stabilize.Additionally, when I began, I didn't do long sessions of exercise. I had to listen to my body and stopped after only a few minutes. This got better at times, but around my period or on bad days, I would have to stop if I became too symptomatic.My tech developed a dizziness scale (from 0-4) with me so that I could communicate if I had a spike in lightheadedness.I also noticed from my documented BP and HR over time that I did better on less beta blocker, so the charting of my vitals was also very helpful.Hope this helps!Kristen Quote Link to comment Share on other sites More sharing options...
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