Mar 12, 2011

Deconditioning and POTS


Another part of POTS that we POTSies sometimes don't want to admit is that if you've been stuck in bed with a serious illness for any length of time (whatever the cause), your body will become deconditioned and deconditioning causes POTS like symptoms even in super healthy people.

For example, NASA has done extensive deconditioning research on astronauts, who are in top physical form when they blast off from earth.  After even a week or so in space, their bodies become deconditioned and when they land back on earth, they have symptoms just like POTS - tachycardia, fainting, erratic blood pressure, low blood volume, loss of muscle tone, loss of bone density, etc.  Many astronauts have to be carried out of the space shuttle laying down on a stretcher, which is why you never see pictures of the crew coming home - just walking to board the shuttle when they launch.  After a 3-4 months in space, it takes about 2-3 years for astronauts to regain their bone density and they lose about 22% of the blood volume.  Some astronauts have to take a common POTS drug - Midodrine - before returning to the earth's gravity. Without the Midorine, which increases the astronauts blood pressure, the astronauts would feel the symptoms of their low blood volume and low blood pressure immediately upon entering back into the earth's gravitational field, and they would not be able to land the shuttle - they'd probably pass out just like us POTSies.  So if a super healthy astronaut can get his or her butt whooped by POTS like symptoms after a few weeks of deconditioning in space, imagine what a few months or years of deconditioning does to us regular folks, some of whom have other health problems to begin with.  To combat the orthostatic and blood volume issues the astronauts experience when they return home form space, they do special exercises meant to build up their bone density, cardiac efficiency and blood volume.  In theory, these exercises should help some POTSies, especially those who are deconditioned and those suffering with low blood volume (hypovolemic POTS).  

One really important thing to note is that POTS related deconditioning is not caused by laziness or a lack of motivation.  It's caused by physiological changes that occur in your body.  In fact, most POTSies are young women who tend to be thin or a healthy weight, and many were stellar athletes or dancers just before becoming sick.  

In my case, I have always been a tomboy and into sports and outdoor activities.  Surfing, mountain biking, cross country skiing, kayaking, gardening - these things were part of my weekly routine.  I was snowboarding in VT for seven days in a row before my POTS symptoms started, so I know the initial trigger wasn't deconditioning in my case, but after a year of being sick and not being able to exercise much (or even walk or stand up sometimes), I am definitely out of shape and thus deconditioing is only making my POTS symptoms worse.  It's a vicious cycle and it's very hard to break out of it.  

So how do you overcome the effects of deconditioning?  Get moving!  There is a team of doctors from Texas who, taking a cue from NASA's experience, believe that some POTS patients have reduced cardiac output, basically caused by a shrinkage of their heart due to deconditioning.  Check out their recent study, which showed that a majority of their study participants did see noticeable improvements after 4 months of a carefully designed cardio/weight lifting exercise program.  You're doctor can get in touch with the Texas doctors to find out about the exercise protocol they developed.  They won't give it to patients directly because it needs to be supervised by your local doctor.  Have your doctor tell them you are interested in learning more about their POTS Registry and the POTS exercise protocol they have developed.

In addition to the Texas study, doctors have long known that thin, young women tend to be easily susceptible to deconditioning, and if you've been paying attention to all these POTS websites, you see that most POTSies are thin, young women.  That's not to say all POTSies have deconditioning or that a vigorous cardio workout is the cure for all POTSies, but it is something all of us should think about.

In terms of needing more exercise, I am right there with you.  After I was put on strict bed rest by a well intentioned but misguided doctor in July 2009, I literally saw my leg muscles disappear before my eyes.  I looked like big bird with those awful bird legs.  That's the worst I felt in the 14 months I've been sick and it was when I was the most deconditioned. 

I can't do a great cardio work out like I want to, but once we were able to get my medications and IV saline therapy to the optimal doses, I was able to start walking around the house a little.  I do laps during TV commercial breaks.  I walk from the couch to the kitchen, to the dining room, to the den and back to the couch.  By the time I am back at the couch, my show is back on and I am totally out of breath with my heart racing.  Just as soon as my body has recovered from the last lap, it's time for another commercial and another lap.  After doing this everyday for a few weeks, I am able to do two or three laps now.  Slow progress is better than no progress!  thighmaster).  I stretch all day long and try to do a few standing yoga moves at least once a day (warrior pose is my favorite).  I leave my yoga mat and weights out all the time so I don't forget.  I wear 2lb. leg weights on each leg every few days (they make me so exhausted).

I am doing this with the hope that I will be accepted into the Texas POTS exercise protocol program.  I heard that it involves reclined or sitting exercises like rowing machines and recumbent bicycles, as well as floor exercises and swimming.  My doctor and I are filling out the forms and waiting to hear back from the Texas team.  If I am accepted, I will start out doing floor/reclined exercises for a few months, then transition into upright exercises.  I am cautiously optimistic about this and praying that it helps me feel better.


  1. sorry no one has left a post for your site. I am a 60 yr old female who started having pots symptons 20 yrs ago. was diagnosed with firbromyalgia. after yrs of going to drs. and having the dr who had me wear a holter monitor and said my heart rate did go up throughout the day but there was nothing wrong with my heart and I needed to see a shrink, i got a new dr. Had a sleep study and put on 02 at nite as not have apnea but drops in 02 throughout the nite (low bp?) then diagnosed with hypermobility joint syndrome, now is associated with Pots, then norepinepherine levels elevated. Googled elevated norepi and low and behold pots came up. I read and said that is me. woo hoo got a dr. who will try to treat, but u are right by this time i am deconditioned, because the symptoms put u down in bed way too often. so i am going do the recommended treatments, and as soon as i can exercise without feeling like im going to pass out i am going to do it. My only advice to others is dont ever give up and if your Dr. won't help you get a new one. It took me 5 different drs. to finally find one to help. good for you POTSgrrl keep on walking and hope some day you will be able to do alot more than walk.

  2. I just returned from a visit to the Mayo clinic and found out I had severe deconditioning causing POTS like symptoms. I became ill in April of 2011 and never bounced back, symptoms lingered...FINALLY, I have answers. I was told by every doctor around the majority of it was in my head! Not only did I have the physical issues, but mentally and emotionally I was having to deal with doctors who looked at me like I was crazy and causing my own symptoms. I was the same, as I could barely walk around the house for many months. This was hard due to the fact I was always active, swimming and running miles. I will be starting a cardiac rehabilitation program at the end of this month. Within the last year I have gotten tons better, but still need to get over that last hill. You will get better I promise! It takes a lot of hard work and I know that many days are frustrating, but keep going!! Good Luck to you and God Bless.

  3. Dear Anonymous who just went to Mayo Clinic,
    Not sure if you noticed, but this deconditioning post on my blog is pretty old. I am doing well, but it turned out my POTS had nothing to do with deconditioning. I had a few ignorant self-professed "POTS experts" tell me that I just needed to exercise and I would get better. Well, exercise I did. I did the Levine protocol, I went to physical therapy, pool therapy, bought a rower/recumbent bike, etc. But execise didn't really help more than maybe a 10% improvement in symptoms. I am not saying your POTS couldn't be caused by deconditioning, because everyone is unique.

    It turns out my POTS was caused by an autoimmune disease attacking my autonomic nerves. According to Mayo Clinic, 50% of POTS patients have some form of autonomic nerve damage - and that can't be caused by deconditioning - so I went all over the place trying to find the cause of my autonomic nerve damage, which was confirmed by biopsy. Cleveland Clinic figured out that I had Sjogren's Syndrome. If left untreated, I would only have gotten worse, and POTS would have been the least of my concerns. I am now getting IVIG infusions and doing awesome!

    Even though it sounds weird to say this, I hope your POTS is only caused by deconditioning, but please promise that if your do all of the exercises and don't get better, you will push your doctors to look for an underlying cause of your POTS. Best of luck to you for a speedy and complete recovery!

    -POTS Grrl

      I want to know more about this posting....
      I have 2 other autoimmune diseases and was "officially" diagnosed with Dysautonomia last week, although I have been REALLY suffering with it for years---and it is getting worse.
      I am with you....exercise is NOT going to correct autoimmune dysfunction.
      Get real.
      AMAZING that you found out about the biopsy and the IVIG infusions.
      Please tell me more---my rheumatologist, at one time, tested me for Sjoren's Syndrome but it came back negative so she just ignored it. All I know is my EYES always hurt and feel dry....but not so much my mouth but I am ALWAYS drinking water due to the Dysautonomia, so I am not a good judge of a dry mouth.
      Any illumination on this matter for me would be great.
      Like you, they have NOT told me the CAUSE of my Dysautonomia...just that I have it. I am taking Midodrine----100+ mg daily, Toprol ER XL 25 mg TID for my tachycardia, which can be pretty high--in the 170's+ range, especially out of a shower or after a fast walk, which I do NOT do any longer! I am starting Florinef tomorrow, which I am very worried about!
      BTW---I am a 51 year old female and not young and especially thin....
      but DID have some of these symptoms when I was a teen and on....just learned to deal with them.... sad! I have suffered for many years....and it has taken many good things away from me because of it. :(
      Thanks for your help Pots Girl :)

    2. Dear Anonymous who wants to know more about autoimmune diseases and dysautonomia,

      I have written other posts on this blog about this, and also about the minor salivary gland lip biopsy that can rule our or confirm Sjogren's even if your blood tests for Sjogren's are normal/negative.

      Go to the top right of the blog and type in Sjogren's on the "search this blog" feature.

      Here's one to get you started:

  4. I have a granddaughter that has suffered with POTS for 5 years. She has a lot of nerve pain and no one has helped her. I was wondering who treated you at Cleveland Clinic. Also did they do a biposy on a nerve to diagnosis the Sjogren's Syndrome? An answer as soon as possible would be greatly appreciated.

  5. Dear Anonymous Grandma,

    I saw Dr. Kamal Chemali, and autonomic neurologist at Cleveland Clinic. However, he has since moved to Virginia Beach to open a new autonomic lab. I'm not sure where you live, but he is worth the drive if you can make it. Dr. Chemali did not do a nerve biopsy. Sjogren's is diagnosed, first with blood tests, but often those come back "normal" so they do a minor salivary gland biopsy, which is considered teh gold standard diagnostic test for Sjogren's. They take a tiny piece of the inside of your lip - smaller than a pencil eraser. There is no visible scar, as it is from the inside of the mouth.

    For peripheral nerve pain, I also highly recommend Dr. Norman Latov at Cornell in NYC. He is a neuro-immunologist and he happens to be one of the foremost experts on peripheral neuropathy. He runs Cornell's Peripheral Neuropathy Center. He also wrote "the book" on Peripheral Neuropaty for patients. You can get it off Amazon here:

    As you may know, POTS does not cause neuropathy, since POTS is a "syndrome" that is really just a list of symptoms often seen together. So if she has lots of nerve pain, that may be a clue to the underlying illness that is causing her POTS. If she hasn't had one yet, you may want to ask her doctors about doing a skin biopsy to look for autonomic neuropathy. I have a prior post on the many different underlying medical problems that can cause neuropathy and some of the tests can that be done to help figure things out. Check out that post here:

    Good luck!

  6. dear Potsgirl,

    We took your advice and drove from Syracuse, NY to Virgina Beach with our granddaughter. Dr. Chemali was wonderful. He did a lot of tests and just sent our Dr. his report stating that my granddaughter does have autonomic-neuropathy. He has recommended that she start ASAP the IV process. I wondered how it has helped you and if you know of any dr near Syracuse, NY who might help us. Her doctor in Syracuse thinks this a lot of foolishness. She can't keep going to VA Beach. A quick reply would be greatly appreciated.

    1. Dear Anonymous from Syracuse,

      I am glad Dr. Chemali was able to give you some answers. I would check out Dr. Blitshteyn in Buffalo. She even does phone consults. You should ask her to help you identify the root cause of the autonomic neuropathy.

      Good luck!