by Jenny Lelwica Buttaccio, OTR/L
Updated 8/17/21

If you have a chronic illness that’s characterized by a slew of mysterious symptoms like fatigue and pain (Lyme disease, myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, long COVID), you’ve probably been told by some medical expert that you need to exercise to step up your recovery. And perhaps, like mine, your reaction was, “I want to, but how, exactly, am I supposed to do that when I’m literally too sick and tired to get out of bed most days?”

For better or worse, the mainstream medical community has long viewed the physical decline in a person’s functioning — a process known as deconditioning — as the result of not participating in sufficient amounts of physical activity or being out of shape. By default, then, if a patient fails to experience improvements in their symptoms, it’s likely a consequence of too little movement.

But things may not always be so clear-cut, and some degree of exercise intolerance can be commonly observed in people with many types of chronic illnesses. For some people, it’s not too little activity that’s holding them back from a full recovery; instead, it’s the disease process, which often affects multiple systems in the body, as the probable culprit behind the decline in function. And when a person begins to feel better, their activity levels tend to rise as well — naturally.

Although exercise has a place when it comes to chronic illness recovery, knowing when and how to do it is critical to avoid exercise pitfalls. Let’s explore both topics.

Taking a Cue from the ME/CFS Community

Is Exercise Always Possible?

The short answer? No.

For many people in the chronic illness community, exercise isn’t always possible, and in some cases, it can be downright dangerous. Take those in the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community, for whom exercise recommendations from medical professionals have sparked controversy over the years. While some clinicians recommended an exercise program — specifically graded exercise therapy (GET) — to counteract low activity levels believed to contribute to the overall deconditioning of the body, ME/CFS researchers and patients noted that increased physical activity often worsened symptoms.

In fact, a trademark symptom of ME/CFS is post-exertional malaise (PEM), a severe crash in energy and provocation of symptoms after minimal physical, mental, or emotional exertion has occurred. The length of time it takes a person with ME/CFS to recover can be several days or weeks. It’s unpredictable.

But ME/CFS patients everywhere experienced a small win in recent years when, to little fanfare, the Centers for Disease Control and Prevention (CDC) dropped their treatment recommendations for GET, acknowledging that exercise programs with the illness require an individualized approach to care for each person.

And although there’s increasing awareness about the dangers of exercise in the ME/CFS population, a cycle of exercise followed by a steep energy crash pertains to a variety of chronic illnesses. Indeed, a glance through other chronic illness groups and forums, including Lyme disease, fibromyalgia, and most recently, long COVID, showcases a bevy of patients with similar complaints of exacerbating symptoms after exercise: an increase in fatigue, problems with cognition, muscle pain, headaches, difficulty sleeping, flu-like symptoms, increased inflammation, gastrointestinal (GI) issues, neurological symptoms, and more.

Let me be clear about a couple of things: Most chronically ill people want to exercise and increase their physical activity, but many are confused about how to proceed safely after countless failed attempts and setbacks. With all the mixed messaging floating around online about exercise, how does a chronically ill person know what information to believe and what to toss aside?

Moreover, how do they know where to begin when they feel they’re ready to exercise? I have a vested interest in the answers to these questions because I’ve also grappled with how much activity is too much throughout my personal recovery with Lyme disease, ME/CFS, and COVID.

A Look at My Story

As a decade-long occupational therapist, I’ll cop to having had a conventional approach to movement and inactivity before I knew better. The well-known motto, “Move It or Lose It,” would be a fitting description for those who weren’t engaged in some form of exercise. (Thankfully, I don’t think I ever actually said that to a patient.) After all, the benefits of exercise are far-reaching and well-known, including reduced risk of blood clots, increased tissue oxygenation, improved circulation, and activated movement of lymph through the network of vessels known as the lymphatic system.

Despite knowing the advantages of having a more active lifestyle, I hit a wall when it came to moving through my struggle with Lyme and ME/CFS — I couldn’t exercise no matter how badly I wanted to or what type of workouts I tried. I’d helped hundreds of people improve their strength and stamina, but even with my professional rehabilitation experience, my body crashed for weeks after the slightest increase in the intensity of movement. For nearly two years, I was bedridden; those were the darkest and most discouraging days of my life.

“What am I missing? Why can’t I help myself?” I wondered. I’d nearly given up the hope that I would one day be able to participate in any physical fitness again — that is, until my body began to show signs of healing. As it turns out, I may have overlooked a critical piece of information when it came to chronic illness, exercise, and recovery: Exercise wasn’t helping me heal — not my vigorous attempts, anyway. But as I healed, I was able to increase my activity and begin to exercise again.

My 12-year healing journey has been marked by the usual cycle of setbacks and improvements that those with chronic illness come to expect. But in April 2021, I experienced a giant bump in the road when I contracted COVID-19, despite taking rigorous precautions. The simple act of walking made me short of breath and caused a level of fatigue that made me drop to the floor gasping for air. Though COVID also brought other unexpected symptoms, the fatigue and inability to exercise were familiar territories to me. But this time, I had a game plan — I went back to the principles I learned earlier in my recovery.

Although I’m not ready to crush my fitness goals at the gym just yet, with each period of improvement, I’m able to challenge my body a little bit more. Some weeks, I can exercise once or twice; other weeks, I can increase it to four or five times. No matter what type of week it is for me, I must always pay close attention to how much I’m pushing myself and the added demands I’m placing on my body.

During my recovery, I learned firsthand that exercise recommendations shouldn’t be the same across the board for every health condition. Like any individualized medical treatment program, exercise recommendations should be customized to every person’s unique set of needs. As both a patient and an occupational therapist specializing in rehabilitation, here are my best tips to get you moving again when you’re ready to try.

1. Timing is Everything.

Many chronically ill people endure a life lacking sufficient energy to adequately participate in daily activities, work, or social outings. Whether the shortage of energy stems from mitochondrial dysfunction, stealth microbes, immune dysfunction, toxins, a heightened inflammatory response, or a combination of them all, when you’re always running on empty, exercise probably doesn’t top your list of priorities.

What does this mean for people who have a diminished capacity for additional activities yet are told to exercise? Timing is key to avoiding setbacks. If you have a mild case of chronic illness or have seen significant improvements in your symptoms, you may be able to reintroduce exercise slowly. If you’d categorize your symptoms as moderate to severe, consider pressing the pause button on increasing physical activity until you’re further along in your recovery — the timing of which will ultimately be different for everyone.

2. Redefine Exercise.

No matter how long you’ve been dealing with a chronic illness, you may feel like your body has betrayed you because it can’t do what it once could; that can be a tough pill to swallow. But no matter where you’re at in your recovery, you must listen to your body and cultivate an awareness of what it’s telling you.

For people who are used to pushing their physical performance to the limits during each workout, now is the time for creating a new definition of exercise, one that supports healing rather than opposes it. If you think you’re going to hop back into your old fitness regimen, know that chances are it will lead to massive setbacks, flare-ups, and frustration.

If you’re in the throes of illness, movement that’s as gentle as breathwork or mild stretching may be enough to lessen pain and improve energy. If you’re progressing through your recovery, low-impact aerobics, like walking or swimming, or light resistance training might be helpful. But for some people, simply doing their daily activities like laundry, caring for children, or cleaning the house is the most physical activity they can tolerate.

Just know that as you heal, even if it’s one small step at a time, you’ll begin to develop trust with your body, and it will become easier to gauge a baseline level of energy that you can expect on a daily basis. Below are simplified exercises from yoga, rehabilitation, and Pilates to help you slowly and safely begin to build up your activity levels.

Breathwork

One of my preferred practices for anyone with limited mobility or who spends prolonged periods of time lying down is breathwork, particularly the percussive breathing technique associated with Pilates. Breathing has been an integral part of the Pilates method since its introduction to the United States in the mid-1920s.

By practicing a coordinated breathing technique, you’ll improve your lung capacity, boost circulation, and enhance mobility and flexibility of the ribcage and spine — two areas of the body that tend to become rigid with a lack of movement. You can do the following breathwork exercise while lying down, sitting, or standing:

• Gently place your hands on the sides of your ribcage; your hands serve as a tactile cue as to where you should direct your breath.
• Inhale through your nose and focus on filling your lungs with air. Your hands should expand with the breath while your belly remains still. Note that you might also feel your ribcage expand across your back, too, as you comfortably fill your lungs with air.
• Then, exhale the air through your nose and picture yourself wringing the stale air out your lungs. You’ll likely notice that your hands move back towards the midline of your body.
• Repeat the cycle until you have a good handle on the concept of expansion and contraction of your ribcage.
• Next, you’ll increase the difficulty of the breathing exercise. Take 5 small inhales through your nose to fill your lungs with air, followed by 5 small exhales out of your mouth. Once again, the trick is to expand and contract your lungs and avoid filling your belly with air. This is percussive breathing, and the better you get at it, the more you’ll notice there’s a cadence to it.
• Not everyone can do 5 small inhales and exhales right off the bat, especially if your lung function is significantly compromised like mine was after contracting COVID. Start with where you’re at — instead, maybe you can do 3 inhales and exhales.
• The eventual goal of percussive breathing is to complete 10 cycles of inhales and exhales; this is an adaptation from a Pilates abdominal exercise known as the hundreds, but we’re focused on the breathing portion of it to start. (If you’re interested in seeing the progression of the hundreds into the abdominal exercise, view this video by openfit.)

Passive and Active Range of Motion (PROM and AROM)

Range of motion refers to the amount of movement you have in each joint. If you’ve been dealing with chronic illness for an extended time, and your activity level has diminished, your joints and muscles have likely lost some degree of flexibility and mobility, and your range of motion has lessened.

One starting point to stretch your muscles is with PROM exercises, in which someone else moves your upper and lower extremities through a variety of planes of movement. The goal of PROM is to gradually improve a person’s range of motion, not induce pain. This may be an appropriate level of movement for you if you require help from a caregiver for most daily activities. Here are helpful documents for PROM of the arms and legs.

On the other hand, AROM means that you’re the one moving your joints through different planes of movement. For any activity you complete yourself, you’re using AROM, which could be as simple as brushing your teeth or as complicated as being an acrobat. For some people, AROM in a lying, seated, or standing position is the best choice for their stage of recovery.

Where do you begin? Shoot for one to two sets of 10 repetitions. If you can hit that mark, you might be able to add a light, 1 to 2-pound hand weight when doing the exercises. For descriptions, Advocate Aurora Health offers basic guidelines for the upper and lower body, but these movements could be modified for those who must lie down or for those who want to stand up for a greater challenge.

Restorative Yoga

This gentle form of yoga is excellent for anyone recovering from a chronic or acute illness or injury. It’s known to have a calming effect on the nervous system and release tension from the body. When done correctly, it doesn’t place strain or pain on the body.

To aid your ability to completely relax in a pose, it’s useful to have a few props handy to increase comfort, such as yoga blocks, a blanket, or a pillow. The therapeutic benefits of restorative yoga are due to its ability to decrease blood pressure, lower stress hormones like cortisol, and connect the mind to the body.

If you’re ready for this level of exercise, here are a few videos to get you started:

• Gentle Yoga for Relaxation by Melissa West
• Spoonie Yoga for Chronic Pain + Fatigue by Sleepy Santosha Yoga

If you’re looking for other restorative exercise options, qigong, NIA, and the Feldenkrais Method all provide a range of movements that incorporate breathwork, facilitate a mind-body connection, reduce stress, and improve posture and balance. As an added benefit, all of these exercises can be adapted to fit your activity tolerance.

Pilates

We talked about the breathing aspect of Pilates, but let’s go a little deeper through this method of movement. Unlike many forms of exercise, Pilates emphasizes the quality of movement over quantity. In other words, it’s better to complete movements with proper form and alignment than to feel the burn. Additionally, Pilates emphasizes increasing strength in the “powerhouse,” a core group of muscles that includes the abdomen, back, hips, glutes, and pelvis.

For people with chronic illnesses, Pilates is worth considering because it consists of a vast array of exercises that develop strength, coordination, concentration, balance, and endurance, which can be adapted to your individual needs. You can perform it at home simply using a mat, or you can participate in group classes online, at gyms, and studios. Pilates also has several machines unique to this method of exercise that can facilitate low-impact resistance training. Note that Pilates isn’t just for women — men can experience the same benefits of this exercise method.

If you’re new to Pilates, here are two introductory mat videos that can help you learn the basics:

• At Home Beginner Pilates Workout: Pilates Workout for Beginners by GymRa
• Beginner Pilates Mat Workout by Linda Fit Pilates Plus

3. Consider Physical or Occupational Therapy.

I may be slightly biased when it comes to the important role I believe physical (PT) and occupational (OT) therapy play in helping people gain strength, mobility, and independence, and lessen pain. Physical and occupational therapy services are often thought to be a crucial part of recovery for older adults, but they can be a lifeline to anyone at any age who finds that the do-it-yourself approach to regaining strength and expanding the range of daily activities can be a challenge. Rehab services can also help those who feel like they’ve reached a plateau in their physical recovery.

What’s the difference between physical and occupational therapy? Both disciplines often work together to help a person achieve the best possible outcomes, but you can see a PT or OT individually as well. Physical therapists are licensed healthcare professionals who diagnose and treat a wide range of physical issues related to gait, mobility, balance, pain relief, cardiovascular function, injury, and a variety of acute and chronic diseases.

Occupational therapists are also licensed healthcare professionals, but they promote greater independence through the therapeutic use of daily activities (or occupations). OTs approach rehabilitative care from a holistic perspective, assessing how an illness or injury might impact a person’s mind, body, and spirit.

For those who have insurance, you’re likely to get PT or OT services covered — in some cases, you may be able to get both covered. The number of times you can see a rehab professional depends on factors like your insurance carrier, your diagnosis, whether you use an in-network provider, and the rate at which you progress during treatment sessions.

If you’re homebound, therapy services can be provided to you in your home, which is called home healthcare. If you have access to a clinic, you can typically find services at outpatient rehabilitation clinics, too. Of course, if you’re hospitalized for an acute illness or injury, therapy services could also be part of your hospital stay.

In some states, to utilize therapy services, you may need to obtain an order from your doctor. In other states, however, physical and occupational therapists may have “direct access” to patients, meaning a physician referral isn’t needed to seek care. Your insurance provider or the clinics in your area can help you figure out whether you need a physician’s order.

Some of the diagnoses you might pursue therapy for include deconditioning, pain management, cognitive dysfunction, balance issues, decreased mobility, or adaptive equipment evaluation. You and your therapist will establish short-term and long-term goals, and you’ll work together to achieve them over a specific amount of time. Don’t underestimate the value of working with professionals — they can be an asset to you and your recovery.

4. Take Rest Days

Regardless of where you fall on the healing continuum, every program you implement — whether it’s a self-guided home exercise program or rehab — should include rest days. Even gentle exercise can place physical stress on your body and lead to inflammation, so you want to nurture it by allowing it plenty of time to repair itself.

If you’re still battling a barrage of symptoms, you’ll need more rest days in between days of exercise. But over time, you might be able to increase your activity levels to every other day, or even daily.

Final Thoughts

Although you can’t plan for every hurdle you might encounter, understand that a slow but consistent effort is vital to rebuilding your strength and nurturing your body. As you begin to increase your activity levels, remember not to measure your progress up against others. We all have different bodies, and we’ll heal at the pace and speed that’s appropriate for us. Ultimately, comparing ourselves to others usually winds up discouraging us along the way.

Finally, above all else, find activities that give you a sense of joy and decrease your symptoms. In the long run, that’s the wisest decision you can make to improve your health and wellbeing.