LindsayAfter my last two posts, you are no doubt now very familiar with my exercise plight. In this post I will finally share my formulated plan to address my exercise intolerance, and perhaps begin to tolerate it. But first, because this post involves information that could be misinterpreted as medical advice, I must issue a disclaimer: The information in this post, including any information available through links, is provided for information purposes only and is not intended as medical advice. You should consult with a licensed medical professional before starting any new treatment, including an exercise plan.
Lawyered. Okay, let’s move on.
Before spaceman’s disease (aka dysautonomia), I was always in good shape. I worked out about 4x per week, but even when I wasn’t at the gym, I was walking around the park, chasing after birds on the beach, carrying law books totaling half my weight up three flights of stairs. I’d brag about how healthily I ate, but that would be a lie. I ate what I wanted, when I wanted. Sometimes what I wanted was a plate of veggies for lunch, and sometimes it was ice cream for dinner. Gaining weight was never an issue, and on those rare occasions when I did gain a few pounds (aka the holidays), I’d spend an extra five minutes at the gym that week and skip dessert. This photo was taken on the night I was taken to the ER first showing dysautonomia symptoms:
However, that lifestyle seems miles away from where I am now. Don’t worry, I won’t be showing you any photos of what my stomach looks like now, but it certainly doesn’t look like that. I’m about 10 lbs heavier, but even worse, I’ve lost all muscle tone.
[photo by cobalt123 via PhotoRee used pursuant to Creative Commons license]
One of the common symptoms of dysautonomia and ME/CFS is exercise intolerance. POTS makes my heart rate rise when I stand, which can make exercising difficult. A few years ago, before I was diagnosed with POTS but after I began having symptoms, I went in for a stress test. The nurse hooked me up to a few monitors, including one that monitored my heart rate, and told me I would be running on the treadmill until my heart rate reached approximately 180 beats per minute. I stood up on the treadmill ready to begin, and before the nurse even pressed the “start” button, my heart rate was already at 160. Just standing still. That’s POTS.
Here’s a video I shot recently where I had forgotten to take half my medication, so it shows my heart’s crazy reactions to standing. The watch I’m wearing in the video is a heart rate monitor that connects wirelessly to the strap around my chest that monitors my heart rate. My normal sitting heart rate is usually in the mid 50s, so the starting hr of 70 in this video is high for me.
So, as you might imagine, a heart rate of 120 just standing still makes it difficult to do any activity that raises my heart rate quickly. That is why, as I mentioned before, doctors suggest seated or reclined exercises for dysautonomia patients, such as riding a recumbent bicycle or using a rowing machine. A few months ago, I was riding my recumbent stationary bicycle 3x per week for anywhere from 20-30 minutes. However, as my fatigue has increased, it got to the point where I would immediately have to go lay down after getting off the bike. Sometimes I couldn’t even make it to the bedroom and would have to lie on the floor next to the bike. After a few months, I stopped riding.
But this year, my goal is to lose a few pounds. I already eat as well as I should, which leaves exercise. My cardiologist has repeatedly explained the necessity of starting out slow. Very slow. He also explained the benefits of doing workouts that strengthen my leg and core muscles in order to aid my body in pumping blood back up to my heart and brain. So, I developed a workout plan for this month incorporating seated or minimal standing exercises that focus on my legs and abs. With my new plan, I just look on the calendar I created and do the exercises listed for that day. I try to do it all, but if the fatigue or muscle weakness take over, I do what I can. Something is always better than nothing. You can check out my plan here.
At the beginning of February I will create a new monthly plan based on the successes and challenges I experience this month. As you can see from the plan, I weight myself each Wednesday and write it down so I can chart if the plan is effective. If not, I can reevaluate it the following month. I realize I’m not going to lose weight overnight, especially with this plan. It takes patience and perseverance to exercise when you’re chronically ill.
Doctors agree that exercise is crucial in the treatment of POTS, yet exercise intolerance is a challenging POTS symptom. If you’re experiencing difficulty exercising, I would recommend creating a plan by writing down what you’ll do each week. Talk to your doctor, and start slow. Maybe you’ll do one situp. Maybe you’ll just do a few stretches. Maybe you’re able to run miles. Whatever you’re able to do, let’s support each other and do it together. Please feel free to mention your exercise successes and challenges below.
“Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish.”
― John Quincy Adams
– L
I could have written a similar post! I’ve never been thin, but I always worked out several times a week, jogged, etc. I do still walk on my treadmill, but VERY slowly and hanging on for dear life. Stairs are awful for me. And I’ve lost almost all muscle tone, too! It’s hard….I know. Good luck with the new routine!
thank you! stairs are very difficult for me, too. it’s hard going from being so active to…..not. it’s nice to know others understand!
Having had muscle tone and then losing it all, not because you don’t WANT to exercise, but because you can’t, is so unfair.
it is! there are so many lazy people out there who would love to have an excuse to not work out. it’s frustrating that i would give anything to be active and not sleep all day, but can’t.
The other day, I was on the treadmill, going at a snail’s pace….and I got so angry, because I used to jog on the damn thing, that I yelled “F(&K!!!!” at the top of my lungs. The dog leaped off of her bed in surprise. Which made me laugh. But still, as the moment, it really, really sucked.
I can relate. I want so badly just to to do the things I used to and not feel like I’m having a heart attack after riding the bike for 3 minutes!
I always am happy to log on and find you’ve created a new post. I nominated you for a blog award. Check it out here – http://lethargicsmiles.wordpress.com/2013/01/19/661/
Oh, you are so kind! Thank you so much!
Hey, Lindsay, take it easy. Slowly does it. I’ve been an exercise junkie for over a decade now, yet since getting knocked for a six with chemical sensitivities, I have to take it slow. I have days though were I can give it my all, and I love, and live for those days. I love the endorphin rush; however, I don’t like the feeling of crashing halfway through, feeling like a failure, and the hellish desire to push through it all in the name of what? Health? Health is taking care of ourselves.
Please tell me where you got the set of resistance bands? I have a treadmill, and a weight bench, but i’m better off doing slow Yoga, and taking walks on the beach.
I’ve had days where I’ve been leaning over onto the rails of the treadmill, trying to hold my weight up. Those are the days where I just end up on the couch…
Someone suggested I, too, get a recumbent bicycle. Are they good?
Thank you so much for teaching me about pots! And, thank you for making me laugh at those nipple thingies 🙂 Too funny
Thanks for your comment! I got the resistance bands on amazon, here’s the link: http://www.amazon.com/gp/product/B006O09M4K/ref=oh_details_o00_s00_i00
So far I am very happy with them. They came with six bands of difference resistance (and you can combine them for higher resistance), two ankle straps, two hand grips, a door anchor, an “anyplace” anchor, and a dvd. I live in a small condo, so they are very convenient for me as they don’t take up much space. Because I’m still at the point where standing exercises are difficult, there are a number of seated or reclined exercises I can do, which is wonderful for me. I just hook up the door anchor on my bedroom door, hook up the strap and lie on the floor to exercise.
I like my recumbent bike because I can do other things while I ride. My bike is near the t.v., so I can watch a movie, play video games, sometimes I read a book – things I probably couldn’t do on a treadmill or elliptical.
have you tried swimming?
Swimming! I’m so glad you mentioned it. I tried swimming a few years ago. I loved being in the pool because I could stand without getting dizzy – it’s like I didn’t have POTS. However, the actual swimming was difficult because I’m often already short of breath and I started to worry I’d pass out and drown. However, that was a while ago, I should probably give it another try!!
its just a thought it is the only form of exercise i can do
I enjoyed your post. I too have Dysautonomia and before this disease I went for a 2-3 mile run everyday. I was super active and now somedays I can’t even get out of bed! I need to kick my pride to the curb and start over SLOWLY. Thanks for sharing 🙂
Yes, it is so frustrating going from super active to mostly homebound! While I wouldn’t wish it on anyone, it is always nice to know I’m not alone 🙂 Thank you for commenting!
Add me to the list of those frustrated with the lack of exercise tolerance with POTS. I was running 4 miles every morning, and walking 2 miles at night when I came down with POTS (which goes vs. the Levine theory of deconditioning causing POTS. It may exacerbate it, but it definitely did not cause it for me or many others). I’ve spent most of the past year horizontal, and have gone from being in good shape to gaining 20 pounds. I tried the bike routine but would get so sick I couldn’t stay on it for more than 3 minutes. But since moving from Louisiana to Oklahoma last month, I have seen improvement, and have been able to actually walk 2 miles several times. Not sure why the change of geography has helped, but it has seemed to. My feet are really sore — from lack of use! — but I am grateful to be able to exercise some again! Thanks for the post!
So glad to hear you are doing a little better since your move! I’ve heard others say moving from one town to another helped their condition, even when there is no obvious explanation why. I’m not a fan of Levine’s deconditioning theory – every single person I know with POTS was extremely active when they came down with it. In my case, my deconditioning is caused BY POTS, but is not the cause OF POTS. It is certainly a major life change to relearn how to exercise in a manner that our bodies can handle, but it does feel wonderful to have that old familiar muscle soreness sometimes!
Hope you continue to improve!