Thursday, January 2, 2014

A Look Back at 2013 (Part 1)

All in all 2013 was a good year even if it had a bumpy start. In January, through a menagerie of symptoms we figured out that I have postural orthostatic tachycardia syndrome(POTS) most likely due to Ehlers Danlos Syndrome(EDS) Type III(aka hypermobility syndrome).

I have had weird joint pain my whole life. Then of course, the more kids a had the more tired and achy I became. I would joke with Scott that I had Chronic Fatigue Syndrome. Then I started having palpitations mostly when I would lay down after having to get up at night, or when I would 1st sit down. What I didn't realize was that when I am upright my heart rate jumps to 120+ beats per minute. Sometimes this happens in response to a drop in blood pressure, but in my case my normally low BP(avg 90s/60s) elevates slightly(100-110/80's). It took a while to figure out what was going on because the bp cuff would error, so at 1st we thought it was dipping. What was actually happening though is that the pulse pressure(difference between top and bottom number) was narrowing when I was standing. Sometimes I could only feel a beat or two while taking a reading. Then when I would sit or lay back down the diastolic(or bottom number would drop suddenly widening the pulse pressure, causing palpitations... sometimes the systolic even goes up slightly more when I first sit down.  This is all caused by blood pooling in my legs when I am standing because I don't have good elasticity in my arteries. The reason my blood pressure doesn't tank is because my body kicks in a back up plan... release epinephrine and norepinephrine(stress hormones)... lovely huh? So I really have been more tired and stressed than the average person... for good reason...other than having 6 kids, but it compounded it.

 During pregnancy your blood volume increases, stretching your vessels. Each time I got pregnant they had a harder time bouncing back. Which is why even though this is something that I probably have always had... it has gotten worse. EDS is a connective tissue disorder that can effect any connective tissue in the body. The good part is that it is probably why I have has short relatively painless labors.

The best treatment for the POTS is to increase salt and water intake to increase my blood volume and exercise. Some people do take medicine to help regulate their HR and BP, but they have even higher numbers than I do, or the back up plan fails and their BP crashes and they pass out. Exercise is a double edge sword and fine balancing act. If you don't do it you become deconditioned, decreasing blood volume, but if you do... it is exhausting. I started out by getting a recumbent exercise bike. People with POTS are advised against any type of resistance training and I figured out why the hard way. When I put any resistance on the bike my thighs would burn with lactic acid and my diastolic bp would go up. Even without resistance, if I let my heart rate go above 120, the same thing would happen... this is called exercise intolerance. I have always complained that the reason I could never stick with an exercise program is because I could never get that "high" everyone talks about. Well, that's because instead of endorphins, I get stress hormones coursing through my veins. I got some old lady compression hoses, but the summer hit and I gave up. To be honest when I quit pushing myself, emotionally I felt sooo much better. Did I mention that I am Heat Intolerant as well? Everyone's heart rate increases somewhat when its hot... but I can just be sitting around and get tachycardic. The upside is that my heart is very strong... after all it runs like I'm running a marathon when I'm doing the dishes. Exercising would also be beneficial because it would increase my leg muscles which helps with circulation, I just don't know how to get over the hump. Jacob is starting another running program Saturday. I'm contemplating trying to walk more. I walked about 2 miles with him about a month ago. It took me 40 minutes. I used 2 different calorie counters to compare. One used age, duration, and type of exercise; the other used age, gender and average heart rate(which was about 135) and duration. So the average person would have burned 145 calories in the time that I burned around 350. The bad thing is that I really don't feel bad when I'm taking it easy so It's hard to motivate much is enough? I think the key is slow and steady. I don't do to bad at the grocery store as long as I take my time(until I get in line). Next up... a new diet.

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