Jan 3, 2012

Exercise for POTSies

For most POTS patients, exercise can help you lessen your symptoms, or at least make them a little bit more tolerable.

That is not to say that POTS is caused by a lack of exercise or laziness or deconditioning.  On the contrary, many POTS patients were athletic overachievers before coming down with POTS suddenly.  I have met POTS patients who were dancers, soccer players and ER nurses who never sat down during a 12 hour shift.  I myself was a pretty athletic person before POTS.  I was on a 7 day snowboarding trip and I had even gone cross country skiing UPHILL only days before getting sick with my first POTS symptoms.  I don't know many 31 year old women who are athletic or motivated enough to ski uphill for fun.  I also enjoyed surfing, kayaking, mountain biking, skate boarding and I spent every free moment outside gardening.  Sitting down and relaxing on the couch was never something I wanted to do. My "relaxing" honeymoon in Hawaii consisted of hiking in the wettest place on earth (through mud up to our thighs!), mountain biking down a volcano to the ocean, surfing and swimming in every waterfall we could find.  So to anyone who says POTS is caused by deconditioning, you need to get your facts straight!

That being said, I do think POTS can cause us to become deconditioned.  If you can't walk because you pass out every time you stand up, and you get tachycardia and shortness of breath just from lifting a bag of groceries, over time, and perhaps very quickly, you are going to avoid such activities and your body will become deconditioned.  Deconditioning can make your POTS symptoms worse and can give you other symptoms that don't feel good either.  No exercise and laying down all day can alter your gastric motility, can lead to acid reflux, can lead to weight gain or loss, can cause aching joints, loss of bone density, sore muscles, loss of muscle mass, etc.  If you never get outside, you can become deficient in Vitamin D.  With all of these physical symptoms going on, I think it's pretty easy for some people to become depressed too.  Again, not saying POTS is caused by depression, but I think severe disabling POTS can cause depression - as can any severely disabling illness.

So what can a POTSy do to ward off the evil deconditioning monster?  First, take a look at where you are right now.  Are you bedridden?  Are you able to shower and dress everyday, but spend most of your time sitting or relaxing on the couch?  Are you able to get up and cook and clean, but not really able to walk around in a food store or do other shopping on your own?  Are you able to drive?  Are you able to go to school or work, but have many sick days and spend most of your time at work or school just barely functioning and resting as soon as you come home?  Are you feeling OK at work/school on most days, but still have some mild symptoms everyday, and some really bad POTSy symptoms every once in awhile?  Are you able to participate in recreational sports without much of a problem?

The severity of your POTS will help determine what type of exercise you begin with.  If you are fully bedridden for a year, you are not going to be able to start out with the same level of activity as someone who is driving to school everyday and only feels POTSy once or twice a week.

I was almost fully bedridden for about a year because of POTS, so I will lay out the exercise plan I followed from that point.  I am not saying what worked for me will work for all of you, so just think of this as a guide and some inspiration.  I am no longer bedridden.  I am able to go food shopping on my good days and I just recently drove for the first time in two years - albeit only a few blocks.  I am continuing to strive for improvement so I can regain all of the normal activities in my life I have been missing out on for the past two years since POTS knocked me for a loop.

STAGE 1 - Bedridden, Weak, Sore, Aching Joints, Ugggh - Just Miserable!
The following exercises are things you can do while laying down in bed.  I started doing a mix of these exercises everyday.  I would squeeze in a few minutes of exercise several times throughout the day, because even a minute or two of doing them would get my pulse racing and I would get short of breathe.  After awhile, I kept pushing myself and I built up a bit of a tolerance and some endurance.  Instead of only being able to do something for a minute, I was eventually able to do it for 10 minutes.  Instead of only doing 10 crunches a day, I could do 50.  One good trick I found to remind myself to work out is to do a little something during every commercial break when I was watching TV.  No one likes watching commercials anyway, right?  Also, if you spend lots of time on your computer, try setting a timer to go off every 10 minutes to make you stop doing your computer activity and stretch or do 5 minutes of deep breathing or a yoga pose.  I have a Mac, and I found a great free widget to do this called Prod Me.  Finally, try to get a little bit of a routine going.  When you first wake up, try an easy exercise like stretching or deep breathing or a gentle yoga pose or two.  Before bed, again, stretching and deep breathing, and those will relax you and help you sleep better.

Start with gentle stretching in bed - lay however you are comfortable.  Try to stretch each of your muscle groups, from your ankles to your shoulders and neck, one by one.  This can raise your heart rate, because it gets your blood flowing more than laying down and not moving.  Sometimes just 3 minutes of stretching can be all someone who is bedridden can do.  Do it and be proud.  Later in the day or tomorrow you will try for 5 minutes.  The day after that, try for 10 minutes.  If you have to break up the 10 minutes into 2 five minute sections or 5 2 minute sections, that's fine.  Just get your joints and your limbs moving.  If you are able to sit up for part or all of the stretching, that is good.  Try to have perfect ballerina posture when you are sitting in bed and stretching.  Picture a string coming out of the top of your head and someone gently pulling on the string.  Raise your head up and relax your shoulders down.

Try some deep breathing.  There are some free Mindful Meditation downloads and online players on the UCLA website.  I found them helpful and there are short ones and long ones if you get more into it.  Even though you are probably going to modify it and lay down to do it, it is still a form of exercise and it can be very relaxing.  Proper breathing gets your blood flowing and rejuvanates your body.  In fact, I have felt so calm after completing these meditations that I actually fell asleep.  If you can get yourself to fall asleep while doing these, then you can keep these links handy to help you sleep next time POTS is keeping you awake at 5am.

ABC Of Yoga is a great website to learn about beginner yoga poses in the laying down position.  It has animated cartoon people to show you the move from begining to end and it explains the ideal order to do the moves in to get the best benefits.  They also have sitting position poses for when you are ready for that.  Yoga is relaxing, builds lean muscle and helps you stretch.

If you can, get some light weights for your arms.  If you don't have weights, that's fine.  Bottled water and cans of soup work well too.  I worked out with two Poland Spring bottles everyday when I was in the hospital for two months.  While laying down flat on your back, lift the bottle up with both arms at hte same time like a bench press and then bring the bottle down to your chest.  Tighten your muscles as you do this.  Try to do sets of 12.  If you can sit up, lift you arms straight out in front of you and try to hold them out straight for 3 minutes.  This is hard, so try it without weights.  Keep good posture as you do this.  Take only one weight in both hands, put it above your head and then bend you elbows so the weight drops down behind your head.  This works the muscles below your armpits and in the back of your arm.  If the head of your bed is up against a wall, lay flat on your back and put your arms above your head touching the wall.  Then do "push offs" off the wall - this only works if you bed doesn't slide across the floor.

Take a couch pillow or a regular bed pillow folded in half, put it between your knees while laying on your back with your knees bent, and squeeze it like you are trying to squeeze a lemon.  This is the free version of the thigh master.  Repeat these long slow deep squeezes for 12 reps.  You can also do a similar exercise with a pillow and your arms.  You ca bend your elbows and squeeze the pillow between your elbows, or you can put it between your flat open palms and squeeze it like your are trying to put you palms in a praying position.

Good news.  Your legs are as heavy as weights and they are free!  Lay on your side and do some old fashioned side left lifts.  Bend you knee and and do thigh lifts.  Lay flat on your back and lit one leg at a time up and down.  For a serious tummy workout, lift BOTH legs up at once while laying on your back and try to hold your feet about 6 inches off the ground.  This is hard, but just try it.  A little easier, and also kind of fun, is to write the alphabet in the air with your toes while laying down on your back.  Do the whole alphabet with each foot.  If you get bored of the alphabet, write your name or the names of everyone you love with your toes.  Change the height of your foot to work out different muscles.  I did this in the hospital for 2 months and I had pretty nice quads when I was done!

Try some pikes - watch this Livestrong video to learn how.  There are other great laying down core moves explained on Livestrong, like knee drops, criss crosses, cork screws and more.  Of course, old fashioned sit ups and bicycle kicks work too.  Core strengthening is good for posture and overall health.  These exercises can be challenging, so do what you can and if you have to stop or slow down, that's OK.  Just promise yourself to try more later in the day or try again tomorrow.  Don't give up!  You can do it!

The bottom line for everyone who is bedridden is that your have to get your body moving however you can.  You may get tired, you may get sore, you may feel defeated sometimes.  But eventually you will start to feel a little better.  If you have a stiff neck from laying on propped up pillows for a year, neck stretching and changing your position in bed will help that.  If you have lost your leg muscles, all of these leg exercises will help with that, but only weight bearing exercises - walking or leg presses on a machine, will build up your full leg muscle mass and bone density again.   My POTS motto is:  SLOW PROGRESS IS BETTER THAN NO PROGRESS!

STAGE 2 - Able to Sit Up Sometimes, But Still Experiencing POTS Symptoms While Sitting and Not Able to Stand or Walk Much At All

After about 2 months of doing my supine exercises in bed, I began to try sitting up more often.  First, I was propping up more pillows behind my back and head in bed.  Then I was leaving the bed flat, but sitting up in bed, not using any pillow or anything.  I was really just challenging myself to sit upright as long as I could without passing out.  I did this several times a day, almost everyday.  At first, just a few seconds, then a few minutes, and eventually a few hours.  Then I started hanging my legs off the side of the bed.  I was forcing myself to sit upright even though I literally felt like I was going to die.  I did this with someone in the room with me, and they knew that if I passed out, they were to lay my head down and elevate my feet above my head.

I also followed my "exercise during all commercial breaks" rule and if I wasn't watching TV and I was on my computer, I would set my Prod Me clock to go off every 10 minutes to remind me to sit up.

It is around this time that I purchased myself a Polar exercise heart rate monitor.  There are other brands, and you should be able to get a good one for under $80.  If you want to wear it while swimming, look for a waterproof one.  This will come in handy as you progress to more vigorous exercise.

I also was lucky enough to try aquatherapy with a Physical Therapist at this stage in my recovery.  I would not have gone into a pool on my own or even with my mom, because at this point I was not able to walk and getting me in and out of the pool would have been dangerous.  The therapy  pool had special steps that were very gradual and made it easier to get in and out.  Also, the pool was only 5 ft deep, for safety reasons.  And they kept the pool not too hot, which is good for POTSies since a very hot pool can cause dilation of our blood vessels, which means lower blood pressure and more of that faint feeling.  The first time I was able to try the pool, I was able to stand up straight, unassisted, in the pool for 45 minutes!  I was so happy.  While in the pool, I did leg lifts, circles with my feet on the floor of the pool. arm resistance exercises with floats and simple walking back and forth across the pool.  As soon as I got out, gravity pulled my blood down to my toes and I felt POTSy all over again.  I wanted to live in the pool.

Once you are able to sit up for a few hours, start challenging yourself to stand up more often.  Your instinct may be to stand still, because you may be dizzy and lightheaded, however, for me, I found that walking was actually easier than standing still.  This is because walking gets your leg muscles engaged and helps pump the blood back up to your chest and head.  Standing just lets gravity pool your blood in your legs and makes it more likely that you will have a pre-syncopal or syncopal episode.  Again, I would try to stand up during every commerical break.  Sometimes I would reach my arms to the sky and stretch,  Sometimes I would walk to another room and back.  Sometimes I would do the Warrior yoga pose during commercial breaks.  While that requires standing in place, it really engages your leg muscles, so for me anyways, it didn't trigger any fainting sensations.

STAGE 3 - Sitting is Usually Tolerable, Standing and Walking A Little Bit, But Not Without Great Effort

Time to kick it up a notch and get ready for cardio!  You are going to focus on reclined cardio exercises. Recumbent biking, rowing and swimming are your main cardio workouts.  You are going to start out with 15 minutes a day, and then eventually end up at an hour a day of cardio.  You will also keep doing weights at least once a week and a few of the brief relaxing/stretching/yoga movement exercises everyday.

You should have an exercise heart rate monitor by now.  You should look up your target heart rate zone on Cleveland Clinic's website.  According to Cleveland Clinic:
  • You gain the most benefits and lessen the risks when you exercise in your target heart rate zone. Usually this is when your pulse is 60 to 80 percent of your maximum heart rate. In some cases, your health care provider may decrease your target heart rate zone to begin with 50 percent.
  • It is not recommended to exercise above 85 percent of your maximum heart rate. Intensity at that level increases both cardiovascular and orthopedic risk with minimal, additional health-related benefit from the exercise.
So let's say you are a 30 year old female.  Your predicted maximum heart rate is 190.  To keep your heart rate below the 85th percentile of your predicted max, you should keep it below 162 bpm.  That should be your absolute max during the workout.  In fact, you should probably start out much lower than the 85th percentile, because POTSies tend to develop exercise intolerance when they get their heart rate up too high during a workout.  Exercise intolerance can force you to stop working out and can leave you feeling drained for the rest of the day, and even the next day.  That is why it is so hard for us to workout, because our heart rates shoot up so high so quickly that we go from resting to exercise intolerance in less than 5 minutes.

I started out at the 50% percentile of my predicted max, which for me was 120.  I found it fairly easy to do RECLINED cardio exercises keeping my heart around 120 bpm.  In fact, my heart kept going a little higher than that - 128, 130 area and I still felt OK.  I worked out at that level for a few days, just to see if I would be OK the next day too.  I was.  Then every few days I would work out 10 minutes longer at the same heart rate, or I would bump up my heart rate 5 beats and work out for the same amount of time.  I split my cardio into rowing and recumbent biking, which I was able to do at home because I bought myself a combined rower/recumbent bike.  The cheapest place I found that sold them was an exercise equipment shop in Colorado.  They shipped it to me, and it took about a half hour to put together with my husband.  I swam in a neighbor's unheated pool whenever possible, and sometimes in the local bay.  The chilly water in the bay was a great way to increase my BP and prevent blood pooling in my legs.  In fact, getting myself really chilly in the bay in the summer would help keep me cool all day.

After I was able to do an hour a day of cardio, I really started feeling more 'normal' and less POTSy on more days of the week.  I was able to tolerate a brief trip to the food store.  In the winter, I walking around the local Home Depot or Walmart, since their stores are so huge and it was just too cold to walk outside.  Some people walk at the mall, but I don't have an indoor mall near my house.

I started replacing some of my workouts with heavy duty household chores.  Moving furniture to vacuum underneath it, ripping out shrubs I didn't like in the front yard.  Chopping wood from a fallen tree.  I am feeling pretty good sometimes, but I still have days when POTS kicks my ass and I end up back on the couch for the day, or for the week.

I do not consider myself "done" with my exercise program.  I guess I am at the end of Stage 3, and I am trying to work my way up to Stage 4, which I would consider, for myself, to be returning to work, driving on a regular basis, having fewer terrible POTSy days per week and being able to walk a mile without stopping.

Here's what one of my Stage 3 Weekly Workout Chart Looks Like:

10 minute warm up (yoga)
20 minutes weights
30 minutes cardio
10 minutes cool down (yoga, stretching)

10 minutes warm up (stretching)
50 minutes cardio (rowing)
10 minutes cool down (yoga)

10 minutes warm up (stretching)
50 minutes cardio (recumbent bike)
10 minutes cool down (yoga/deep breathing)

10 minutes warm up (stretching, yoga)
50 minutes cardio (biking & rowing)
10 minutes cool down (stretching)

10 minutes warm up (stretching)
20 minutes weights
20 minutes reclined core/leg lifts
20 minutes yoga

10 minutes warm up (yoga in the pool)
50 minutes cardio (upright exercises in a pool)
10 minutes cool down (relaxing swim in the pool)

10 minutes warm up (stretching)
30 minutes cardio (rowing/recumbent bike)
20 minutes walking/dancing
10 minutes cool down (yoga)

STAGE 4- Almost "Normal"?
I probably shouldn't offer advice on how to get to Stage 4, because I haven't gotten there yet myself, but here's my game plan.  I have recently stopped getting my IV saline, by my own choice, and this has made my life easier (no heparin, needles, chest port emergencies, home case nurse visits, hooking myself up to tubes, etc.), it has also slowed down my exercise routine considerably, but I consider this a necessary step for me.  I don't want to live on saline forever, so I am going without it and pushed ahead with my game plan to get to Stage 4.  I plan to continue with intense household chores, continue daily reclined cardio, weekly weights, try walking longer distances, and I would REALLY like to try running in the pool, as I had started to do last summer.  I will have to wait for summer to return, as my local indoor pools are heated too much and drop my BP like a hot potato.  I just need to stop having so many involuntary couch potato days.  I don't think those are due to POTS.  I have a second diagnosis, Sjogren's Syndrome, and that seems to be causing most of my days on the couch now -not my POTS tachycardia/low blood pressure symptoms.

Please share your exercise tips here, and if anyone has gotten to Stage 4 or better, please let us know your secret!!!!  And remember, SLOW PROGRESS IS BETTER THAN NO PROGRESS!  You can do it!