Do you have profound, debilitating fatigue with spondylitis? You’re not alone. Up to 80 percent of people with this inflammatory arthritic disease experience an overwhelming tiredness that doesn’t go away with rest or sleep.
Along with chronic pain and stiffness, fatigue is one of the most impactful — and least studied — symptoms of spondylitis. According to a 2015 study in Arthritis Research and Therapy, some 75 percent of people with ankylosing spondylitis (the most common type of spondylitis) experience fatigue so severe, it’s hard to get out of bed in the morning — or at all.
Unlike the temporary tiredness that comes from an intense workout or long workday, inflammatory fatigue is unrelenting. It gets worse with SpA flares and dramatically alters quality of life.
“Tired is my new normal,” shared one member of MySpondylitisTeam. “I’ve turned into Rip Van Winkle,” said another. “I’m so tired I could sleep on a coat hanger, just to survive,” explained a third member.
People living with axial spondyloarthritis — the umbrella term for this class of chronic conditions involving inflammation of the spine and pelvis — experience fatigue differently. Here’s how MySpondylitisTeam members describe the feeling:
While lack of energy is the primary feeling, chronic spondylitis fatigue encompasses many other symptoms, including mood-related disorders not typically associated with normal exhaustion. Symptoms of spondylitis include:
A rheumatologist can diagnose whether your symptoms are a response to overexertion or an indication of underlying disease.
Fatigue doesn’t just drain energy levels. It can also dramatically impact a person’s mood, social life, physical activity, work, and overall well-being. Here’s how fatigue affects members of MySpondylitisTeam.
Feel great one day, can’t get out of bed the next? Spondylitis flares — or uncontrolled disease activity — can cause boom-or-bust cycles that make it hard to lead a normal life. “I have sleep marathons followed by a day or two of energy,” said one member. “I embrace the good days and dread the bad,” added another. “When you flare, your body works so hard fighting inflammation, it causes exhaustion that can last days after a flare,” explained a third member.
Pain keeps many members up all night. Even after logging a few hours of sleep, many wake up tired the next day. “After nine hours, I get up, eat breakfast, then go back to bed for another three or four. Some days, I don’t get up again until 4 p.m.!” lamented one member.
Catnaps are essential, members say. “I’m a professional napper,” one member proclaimed. “I need at least two naps a day,” said another. “If I don't get a nap each day, I feel like a zombie,” said a third.
Fatigue prevents many members from doing their daily chores. “I can’t clean house or cook. I try to dust a little, then pay for it later. My husband now does 99 percent of the grocery shopping,” said one member. Another member was so exhausted, they fell asleep waiting in the parent pickup line at their son’s school. “A guy knocked on my car window to wake me,” they said. “It was so embarrassing.”
Job performance often suffers when fatigue — and accompanying brain fog — show up for work. Up to 90 percent of people with ankylosing spondylitis become work disabled over time, according to a large study on fatigue and work impairment. “I stopped scheduling morning appointments with clients because I am so tired,” shared one member. “Even if I have a long to-do list, I nap when I can, then work when I’m awake — usually a two-to-four-hour window in the afternoon.”
Many members mourn their old lives and achievements. “I used to make the Energizer Bunny look lazy, now I’m not even remotely close,” shared one member. Another lamented, “I used to be the life of the party, now that’s over.”
Others feel moody or depressed. “I usually throw a big party for my birthday and celebrate all week long. This year, I just feel sad and tired,” shared one member. “Depression seems to be common, causing constant pain, fatigue, lack of motivation, and isolation,” observed another.
Fatigue can disrupt relationships with families and friends. “I’m sick of my family asking if I’m drunk or high,” said one member. Another shared, “Can’t even get up to make a cup of tea. Family thinks I’m lazy. No friends or social life.” One frustrated member admitted, “I wanna be the fun grandma, but I’m too tired and totally drained.”
Studies have found that spondylitis presents differently in women and men. One of these differences is that women tend to report significantly higher levels of fatigue.
Learn more about how axial spondyloarthritis differs between women and men.
According to the U.S. Office on Women’s Health, women are also more likely in general to develop iron-deficiency anemia, which commonly causes fatigue. Many members of MySpondylitisTeam describe having both anemia and spondylitis. “I’ve just had blood work done again, and now I have chronic anemia. Wondering if anyone has problems with anemia? It’s so tiring.”
Others report being diagnosed with pernicious anemia, an autoimmune disorder in which the body can’t make enough healthy red blood cells. More women than men are diagnosed with pernicious anemia.
Read more about how anemia can worsen spondylitis fatigue.
Fatigue is typically caused by factors including inflammation, underlying health conditions, medication side effects, the stress of coping with a chronic condition, and poor lifestyle habits.
Studies have shown that uncontrolled disease activity is the primary driver of fatigue in inflammatory arthritis. In spondylitis, inflammatory proteins called cytokines are released, producing fatigue. One member called it a vicious cycle: “Pain makes us exhausted; exhaustion creates pain that fogs our brain. One symptom leads to another (and back again)!”
More than 50 percent of people with SpA have a sleep disorder, such as sleep apnea, according to the Canadian Spondylitis Association. Lack of sleep can increase pain, causing more sleeplessness that leads to more pain. “For two to five weeks, I can't sleep at all. Then, I sleep for a solid week, waking every hour for 10-30 minutes. After that I’m back to not sleeping again,” shared one MySpondylitisTeam member.
Watch rheumatologist Dr. Ashira Blazer give advice on how to manage fatigue with spondylitis.
Certain drugs prescribed for spondylitis can cause or worsen exhaustion. Doctors often prescribe corticosteroids, such as prednisone, to control SpA flares. These medications can cause fatigue-promoting side effects, such as anxiety and sleeplessness. Pain medications and antidepressants can also contribute to low energy levels.
Some members of MySpondylitisTeam report fatigue from disease-modifying antirheumatic drugs (DMARDs) prescribed to reduce inflammation and slow spondylitis progression. “My fatigue appeared once I started methotrexate. Now it’s hard to function throughout the day,” said one. “Humira made me feel awful and increased my fatigue. I hope to start with a new rheumatologist soon and pray my fatigue can be treated,” said another.
Since fatigue in spondylitis can have so many factors, speak to your doctor about determining what’s causing your fatigue and how best to manage it.
Fatigue is often an indicator of underlying disease. Studies have shown that up to 40 percent of people who reported chronic fatigue symptoms to their doctors were later diagnosed with fibromyalgia, diabetes, Parkinson’s disease, lupus, or another medical condition. Share all of your symptoms with your doctor to make sure you receive screening tests as appropriate. Getting underlying conditions diagnosed and treated can help improve fatigue and other symptoms.
People with chronic pain are more likely to suffer from depression than the general population. Whether it was preexisting or caused by the stress of fighting a chronic condition, depression can lower energy levels, disrupt sleep, and cause exhaustion. Pain and depression also feed on each other, further worsening fatigue.
Although there’s no cure for spondylitis fatigue, recent studies have found that medication, lifestyle changes, and other pain management strategies can help control inflammation and improve quality of life.
According to Frontiers in Medicine, biological DMARDs, such as anti-tumor necrosis factor inhibitor (anti-TNF) medications, reduce fatigue in 35 percent of people with SpA. Some antidepressants have also shown promise, meriting further study of mood-regulating drugs for energy management.
Alongside medication, interventional therapies — such as mindfulness-based stress reduction, cognitive behavioral therapy, and acceptance and commitment therapy — have proven effective in treating depression, anxiety, and fatigue in SpA.
Exercise, which releases feel-good chemicals in the brain, is a natural fatigue fighter. It also feels better than resting for people with spondylitis, so it’s recommended that you keep moving.
Restorative yoga, tai chi, swimming, walking, stretching, and other gentle physical activities are other forms of exercise recommended for people with SpA. Start slow, then gradually increase your distance, time, or pace. Physical activity can also help you sleep better.
No diets can eliminate fatigue, but adopting an anti-inflammatory diet may help you feel better. This nutritional approach includes fruits, veggies, whole grains, legumes, and other energy-boosting foods.
Some members use medical marijuana or CBD to fight fatigue and exhaustion:
Others find vitamins and supplements to be helpful:
Always check with your physician or rheumatologist before starting any new medication, supplement, or exercise program.
By joining MySpondylitisTeam, the social network and online support group for those living with spondylitis, you gain a support group more than 85,000 members strong. Managing fatigue is a popular topic.
How does fatigue affect your daily life? Do you have any tips for managing fatigue with spondylitis? Share in a comment below or start a conversation on Activities. You'll be surprised how many other members have similar stories.