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Managing Fatigue in Spondylitis

Updated on April 27, 2018

Article written by
Laurie Berger

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.

What Does Spondylitis Fatigue Feel Like?

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:

  • “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.”
  • “Pain all day, every day! It’s exhausting.”

Symptoms of Spondylitis Fatigue

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:

  • 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 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:

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.

Daily Task Struggles

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.”

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 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.”

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 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.”

What Causes Spondylitis Fatigue?

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.

Inflammation

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

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.

Sleep Deprivation

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.

Medications

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.

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. Be sure to share all of your symptoms with your doctor.

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

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:

Anti-TNF Therapies

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.

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, 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.

Sleep Hygiene

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.”

Anti-Inflammatory Diet

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.

MySpondylitisTeam Member Tips for Managing Fatigue

Some members use medical marijuana or cannabidiol (CBD), where legally available, 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 2 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, psychological therapy, 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 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.

References

  1. Fatigue in chronic inflammation — a link to pain pathways — Arthritis Research & Therapy
  2. Fatigue in Spondylitis — Spondylitis Association of America
  3. Overview of Types of Spondylitis — 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 — Creaky Joints
  10. Fatigue and Drowsiness: Everyday Exhaustion and Beyond — US 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? — Positive Psychology
  14. Ankylosing Spondylitis Flares: Exactly What to Do When You Have One — Creaky Joints
  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

Laurie has been a health care writer, reporter, and editor for the past 14 years. Learn more about her here.

A MySpondylitisTeam Member said:

Prayers for you. I too have chronic pain both legs, hips etc
I hope you have a good day. THANK YOU for sharing

posted about 2 months ago

hug (1)

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