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Do you have profound, debilitating fatigue with spondylitis (SpA)? 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.
Next to chronic pain, fatigue is one of the most challenging — and least studied — symptoms of spondylitis, according to the Spondylitis Association of America. Some 75 percent of those with ankylosing spondylitis (AS), the most common form of the disease, struggle with 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, arthritic 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.
The experience of fatigue with axial spondyloarthritis (AxSpA), the umbrella term for this class of chronic conditions involving inflammation of the spine and pelvis, is different for everyone. Here’s how MySpondylitisTeam members describe the feeling:
While lack of energy is the primary feeling, spondylitis fatigue encompasses many other symptoms, including mood-related disorders not typically associated with normal exhaustion. They include:
A rheumatologist can diagnose whether your symptoms are a response to overexertion or an indication of underlying disease.
Fatigue not only drains energy levels, it can also dramatically impact 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, she fell asleep waiting in the parent pick-up line at her son’s school. “A guy knocked on my car window to wake me,” she 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 the largest longitudinal study to examine 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 is not only challenging for members of MySpondylitisTeam, it also disrupts 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.”
Fatigue is typically caused by one or more 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 unmanaged disease activity is the primary driver of arthritic fatigue. The body uses energy — in the form of proteins called cytokines — to fight the disease, much the way it would battle a virus or flu. 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)!”
Anemia and fatigue are common complications of ankylosing spondylitis. When cytokines are released, they decrease levels of healthy red blood cells that carry oxygen to the body’s tissues, making you feel tired and weak.
Studies show that more than 50 percent of people with SpA have a sleep disorder (such as sleep apnea). 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 which I’m back to not sleeping again,” shared one MySpondylitisTeam member.
Certain drugs prescribed for spondylitis can create or worsen exhaustion. Corticosteroids such as Prednisone — which are often prescribed to control SpA flares — can cause fatigue-promoting side effects, such as brain fog, 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). “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.
Talk to your doctor about how to balance medication benefits and potential side effects or whether to consider alternative medications.
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. Be sure to share all of your symptoms with your doctor.
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.
While 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. They include:
Researchers have found that biological therapies, such as anti-TNF (tumor necrosis factor inhibitor) drugs, 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, according to arthritis website Creaky Joints. Restorative yoga, tai chi, swimming, walking, stretching, and other gentle physical activities are recommended for people with SpA. Start slow, then gradually increase your distance, time, or pace. Physical activity can also help you sleep better.
Good sleep hygiene — avoiding caffeine before bedtime, creating a calm sleep environment, and blocking out light or noises — is important, too. If tossing and turning persists, ask your rheumatologist to prescribe gentle medication to help you drift off. One member of MySpondylitisTeam shared her own natural antidote for insomnia: “I mentally go through my wardrobe and plan or put together different outfits. It’s a bit crazy, but it calms my mind and puts me to sleep.”
No diets can cure or treat fatigue, but adopting an anti-inflammatory approach may help. That includes fruits, veggies, whole grains, legumes, and other energy-boosting foods. “I'm on a keto diet, and I don't feel as tired as I did,” said one My SpondylitisTeam member. “My doctor recommended a FODMAP diet for another condition, but it has also helped with spondyloarthritis fatigue,” shared another. Drinking plenty of water prevents dehydration, which can also cause fatigue.
Some members use medical marijuana or cannabidiol (CBD), where legally available, 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, psychological therapy, 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 46,000 members strong. Fatigue is one of the top 10 most discussed topics.
Here are some of the hundreds of conversations that have taken place on MySpondylitisTeam about fatigue:
How does fatigue affect your daily life? Has your rheumatologist found the right medication to manage your symptoms? What helps you successfully get through each day? Share your tips and experiences in a comment below or on MySpondylitisTeam. You'll be surprised how many other members have similar stories.
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