Understanding and Managing Fatigue in Ankylosing Spondylitis | MySpondylitisTeam

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Managing Fatigue in Spondylitis

Medically reviewed by Ariel D. Teitel, M.D., M.B.A.
Written by Kelly Crumrin and Laurie Berger
Updated on July 22, 2022

  • Fatigue is a common symptom of spondylitis (SpA) that can be debilitating.
  • Women with spondylitis are more likely to report severe fatigue than men.
  • Strategies to manage fatigue and improve energy can help improve quality of life with spondylitis.

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.

What Does Spondylitis Fatigue Feel Like?

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:

  • “I can power through pain, but this exhaustion is tough.”
  • “Tired isn’t the word. It’s run-down, lacking energy, feeling stressed, on edge, and yo-yoing through the day.”
  • “Feel dead on my feet.”
  • “Tired and brain foggy today. Another lost day.”
  • “It feels like the drain plug has been pulled, and I’m sitting on empty.”

Symptoms of Spondylitis Fatigue

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:

  • Sleep deprivation
  • Lethargy and restlessness
  • Muscle weakness
  • Brain fog
  • Apathy
  • Depression
  • Anxiety
  • Headaches
  • Frustration and anger
  • Poor memory or forgetfulness
  • Feelings of failure, lack of confidence
  • Difficulty concentrating or making decisions
  • Decreased productivity
  • Decreased interest in social activities

A rheumatologist can diagnose whether your symptoms are a response to overexertion or an indication of underlying disease.

How Does Spondylitis Fatigue Affect MySpondylitisTeam Members?

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.

Low Energy Levels

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.

Interrupted Slumber

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.

Struggles With Daily Tasks

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.”

Sleeping on the Job

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.”

Depression

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.

Strained Relationships

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.”

Spondylitis Fatigue in Women

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.

Anemia and Fatigue

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.

What Causes 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.

Inflammation

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)!”

Sleep Deprivation

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.

Medications

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.

Underlying Conditions

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.

Depression

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.

Science-Based Tips for Treating and Managing 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.

Anti-TNF Therapies

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.

Psychological Therapy

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.

Gentle Exercise

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.

Anti-Inflammatory Diet

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.

MySpondylitisTeam Member Tips for Managing Fatigue

Some members use medical marijuana or CBD to fight fatigue and exhaustion:

  • “I take edibles before bed. It gives me overnight pain relief and helps me sleep.”
  • “A CBD tincture has really helped with fatigue.”
  • “I take Enbrel plus CBD oil for pain and fatigue.”

Others find vitamins and supplements to be helpful:

  • “I found that vitamin B or D deficiency can cause fatigue.”
  • “Sublingual B12 helps a lot.”
  • “I take vitamin D whenever I feel a flare sneaking up on me.”
  • “I take vitamin B after breakfast and again at 2 p.m. for fatigue.”
  • “I’ve been drinking Patriot Power Greens for two weeks. The first day I had so much energy, I got done in eight hours what would normally take a week.”

Always check with your physician or rheumatologist before starting any new medication, supplement, or exercise program.

You Are Not Alone: Finding Support for Spondylitis Fatigue

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.

References
  1. Fatigue in Chronic Inflammation — A Link to Pain Pathways — Arthritis Research & Therapy
  2. Assessment of Fatigue in Spondyloarthritis and Its Association With Disease Activity — The Journal of Rheumatology
  3. Overview of Spondyloarthritis — Spondylitis Association of America
  4. Chronic Fatigue — Canadian Spondylitis Association
  5. Fatigue, Sleep, and Autoimmune and Related Disorders — Frontiers in Immunology
  6. Fatigue Independently Predicts Different Work Disability Dimensions in Etanercept-Treated Rheumatoid Arthritis and Ankylosing Spondylitis Patients — Arthritis Research & Therapy
  7. Anemia — Mayo Clinic
  8. Anemia of Chronic Disease in Ankylosing Spondylitis: Improvement Following Anti-TNF Therapy — Archives of Rheumatology
  9. How To Fight Arthritis Fatigue Naturally: 7 Science-Backed Tips — CreakyJoints
  10. Fatigue and Drowsiness: Everyday Exhaustion and Beyond — U.S. Pharmacist
  11. Fatigue in Spondyloarthritis: Identifying and Addressing Causes — Spondylitis Association of America
  12. Fatigue in Ankylosing Spondylitis Is Associated With Psychological Factors and Brain Gray Matter — Frontiers in Rheumatology
  13. How Does Acceptance and Commitment Therapy (ACT) Work? — PositivePsychology.com
  14. Ankylosing Spondylitis Flares: Exactly What To Do When You Have One — CreakyJoints
  15. Diet’s Effect on Spondylitis Symptoms — Spondylitis Association of America
  16. What Is the Keto Diet (and Should You Try It)? — Cleveland Clinic
  17. Low FODMAP Diet — Stanford Health Care
  18. Dehydration — Mayo Clinic
  19. Vitamins and Minerals for Energy, Fatigue and Cognition: A Narrative Review of the Biochemical and Clinical Evidence — Nutrients
  20. Correction of Low Vitamin D Improves Fatigue: Effect of Correction of Low Vitamin D in Fatigue Study (EViDiF Study) — North American Journal of Medical Sciences
  21. Understanding Differences Between Men and Women With Axial Spondyloarthritis — Seminars in Arthritis and Rheumatism
  22. Iron-Deficiency Anemia — Office on Women’s Health
Updated on July 22, 2022
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Ariel D. Teitel, M.D., M.B.A. is the clinical associate professor of medicine at the NYU Langone Medical Center in New York. Review provided by VeriMed Healthcare Network. Learn more about him here.
Kelly Crumrin is a senior editor at MyHealthTeam and leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.
Laurie Berger has been a health care writer, reporter, and editor for the past 14 years. Learn more about her here.

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