Deconditioning? That's not my problem! Or is it part of the problem?

Deconditioning and orthostatic symptoms have become a hot topic In the conversations and polls on POTS and CFS forums and blogs, conversations in the waiting room with other parents, and in recent physician visits. It raises a lot of emotional reaction for patients and family/caregivers, for good reason.

Many with OI symptoms have been sick for a long time, years even. They have struggled to find a diagnosis because that usually means treatment. They have been told to "go see someone else, I don't know who, just someone else". They have been told their problem is caused by anxiety, or depression or both. They have been told 'it's not so bad', 'there are others much sicker than you'. They've been told it would all go away if they just were motivated enough and exercised. (Even as a physician-mom, we got these same reactions and comments!)

For patients/families, hearing a doctor talk about "deconditioning" as the cause or part of their problem sounds like just another brush-off or "blaming". To the person and their family, it can feel like the physician is trying to make the patient's problems less important or not significant. It can make the patient's problems/symptoms seem trivial - like a leg that is deconditioned after having a cast for 6 weeks; it's "no big deal".

They say it as if it's so simple, as if it's been known forever and we're just getting it. And of course, the fix, the answer we've been looking for is also simple and obvious. The answer is "exercise".

Even as a physician who knows about "deconditioning" in patients in the hospital, I have had the same reaction. Perhaps it's not about what deconditioning is - perhaps it's more about how the message is delivered and whether it feels like the person on the other side really gets what having OI is really about and what a struggle it has been to find an answer. Or its the fact that the person is "exercise intolerant" , she has been trying to exercise. It has only made things worse.

Let's deal with first things first and sort them out one by one. Let's start with our emotional reaction to "deconditioning".

Kay E. Jewell, MD

Caregiver Mom since 2004
Physician long before that!

What "deconditioning" is NOT

“Deconditioning” is a term that is used to describe a lot of things. It is used to describe deconditioning in sports - about being prepared for a sporting event. It is also used to talk about mental deconditioning.

For our purposes, we talking about "deconditioning" and chronic medical problems. First, we need to say what it is NOT. No matter what others say. This is what it is NOT.  

Deconditioning is NOT about being “out of shape”.
Deconditioning is NOT about physical fitness before getting sick. 
Deconditioning is NOT about what you did that caused you to get sick.
Deconditioning is NOT about not trying hard enough to exercise and get better now.

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What is "deconditioning"?

In the medical world, deconditioning is what happens to the body when it is immobile, when it is on bedrest for long periods of time. The body adjusts everything to function best while lying down. "Lying down" becomes the new "normal".

As Dr. Stewart points out, there are different types of deconditioning.9 There is cardiac deconditioning. Congestive Heart Failure would be an extreme form of cardiac deconditioning. This type of deconditioning "is best demonstrated during exercise stress."9

There is "gravitational deconditioning", which would apply to prolonged exposure to very low gravity (microgravity). It is duplicated by chronic bed rest and prolonged head-down tilting (which is used in research studies). This type of deconditioning is "demonstrated during orthostatic stress, as experienced by every astronaut, every long-bed-rested subject and many CFS patients, especially those with the severest symptoms."9

Situations that can lead to gravitational-type deconditioning:
Prolonged bed rest, casting for a broken bone, being paralyzed, being less active combined with changes in the body as we age, and space flight.

Bedrest and Space Flight: In fact, bedrest has been the model that is used here on earth to study what happens to astronauts in space. They develop serious problems from being weightless. They develop orthostatic intolerance, which can be a problem when they step back into the atmosphere on earth.

Bedrest in the hospital: Changes in the body during prolonged bedrest are very real and important. we know more about it in people who are in the hospital. In the hospital, it is known to add more days to how long a person is in the hospital, it takes longer to get off the ventilator, it affects whether a person can go home or needs to go to inpatient rehabilitation, and whether they fully recover and return to normal, full functioning after they leave the hospital.

Prolonged Bedrest with Conditions Managed at Home: We know very little about it when the person becomes ill and then is on prolonged bedrest at home. It is reasonable to assume that the body reacts to prolonged bedrest pretty much the same, whether the person is in the hospital, a nursing home or at home.

What is deconditioning?

The body's response to prolonged bedrest creates changes of most of the organ's and systems. These changes are called "deconditioning". However, there are 2 systems that are affected within days and create changes that lead to or worsen orthostatic intolerance. as noted by Dr. Winkelman1, they are

  • Deconditioning changes to the cardiovascular system
  • The changes in the cardiovascular system include:
    • an increase in heart rate,
    • a decrease in blood volume,
    • a decrease in the heart muscle, size and strength ,
    • a change in the blood pressure sensor cells in the neck (they send messages to the brain which sends messages out to the heart, the blood vessels and the hormone system.

  • Deconditioning changes to the muscles
    When some people talk about "deconditioning" they are talking more about the affect on the muscles of the body. With prolonged bedrest, the heart muscle is affected in just a couple of days, and the muscles of the legs (calves and thighs), then the muscles of the abdomen/back, and last, the muscles of the arms. The following changes happen to the muscles:
    • Loss of muscle bulk (The muscles shrink in size. Example - you lose the bulge in the biceps! ),
    • Loss of strength of the muscles (They become weaker - it's harder to lift things or get up out of a chair)
    • Loss of endurance (Endurance is how long you can do an exercise. You can't carry things as long)
    • There are differences in muscle changes between men and women because the muscle fibers are different.

For more information, go to Bedrest for details . There's more about how bedrest affects orthostatic tolerance at Bedrest & OI.

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Why hasn’t anyone talked to me about all this before?

Most of us know more about the things we deal with everyday. Physicians are no different. Physicians know about the most common things they take care and the things that are written about in the medical journals for their specialty. We learn about unusual things when someone writes about it in a journal we read. Or, we learn about something when someone comes in to the office who has something new. We would look it up to see what we can find.

Most physicians are aware that being in the hospital in bed causes "deconditioning" - meaning the person will get weaker, have problems with endurance and walking and lose some of the ability to take care of themselves. It is known that this is especially true for older patients.

However, physicians are not necessarily as familiar with all the ways bedrest can affect a person. This is especially true for physicians who mostly take care of patients in the office. They are not familiar with the details about what happens with prolonged bedrest in the hospital because they don’t take care of a lot of patients who have it.  Many of those patients see specialists. And - most patients seen in the office don't spend a long time in bed.

There are a few exceptions - like people who have infectious mononucleosis or Chronic Fatigue Syndrome or Fibromyalgia. Many of the physicians treating CFS and POTS have been talking about the link between bedrest and orthostatic symptoms. Physicians like Drs. Peter Rowe, Phillip Low, Julian Stewart, Charles Lapp and other have been talking about orthostatic intolerance, POTS, CFS, OI and bedrest. But the word has not gotten out to a lot of physicians or people with CFS, Fibromyalgia, or POTS.

More physicians are talking about it now so hopefully, more information will get out to people who have OI.

There are 2 types of health professionals who know more about how the body changes with bedrest – doctors and physiologists who do research on space travel and doctors and other health professionals who take care of patients in the ICU. To read more about those experiences, check out Space Flight and OI

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  1. Winkelman, Chris RN, PhD, CCRN ACNP. Bed Rest in Health and Critical Illness: A Body Systems Approach. AACN Advanced Critical Care: 2009; 20(3); 254-266. Abstract.
  2. Lee et al. Aerobic exercise deconditioning and countermeasures during bed rest. Aviation, Space, and Environmental Medicine January 2010;81(1): 52.63. Abstract.
  3. Hargens AR, Richardson S. Cardiovascular adaptations, fluid shifts, and countermeasures related to space flight. Respir Physiol Neurobiol. 2009 Oct;169 Suppl 1:S30-3. Epub 2009 Jul 15.Abstract.
  4. Brower, RG. Consequences of bed rest. Crit Care Med. 2009 Oct;37(10 Suppl):S422-8.Abstract.
  5. Rowe, Peter.General Information Brochure on Orthostatic Intolerance and Its Treatment. June 2010. Accessed from http://www.cfids.org/webinar/cfsinfo2010.pdf. Accessed May 28.2012.
  6. Rowe, Peter. Managing Orthostatic Intolerance. Webinar. September 1, 2010. Hosted by CFIDS Association of American. Accessed June 1, 2012.  Written material.  Slides PDF.   Video.
  7. Lapp, Charles. Treating CFS & FM: The Stepwise Approach. Webinar - CFIDS.org. May 20, 2010. Video. Slides. Slides with notes. Last Accessed June 30, 2012.
  8. Low PA, Sandroni P, Joyner and Shen W. Postural Tachycardia Syndrome (POTS). J Cardopvasc Electrophysiology 2009; 20:352-358.  Abstract.  Article PDF
  9. Stewart JM. Chronic fatigue syndrome: comments on deconditioning, blood volume and resulting cardiac function.Clin Sci (Lond). 2009 Oct 19;118(2):121-3. Abstract. Article.

Author: Kay E. Jewell, MD
Page Last Updated: September 13, 2012