Connect with others who understand.

sign up log in
About MySpondylitisTeam

Living With Spondylitis: Your Guide

Posted on August 30, 2021
Medically reviewed by
Ariel D. Teitel, M.D., M.B.A.
Article written by
Joan Grossman

Life with spondylitis — also known as spondyloarthritis — has many challenges that can affect your quality of life. This guide offers tips on maintaining a healthy lifestyle, reducing stress, talking with people about your condition, and keeping up with financial and family responsibilities. People with spondylitis can take steps to manage their condition proactively and have productive and fulfilling lives.

MySpondylitisTeam members frequently ask for guidance in managing the condition beyond medical treatment. “I’ve always felt positivity is key to surviving the everyday ups and downs of chronic pain,” a member said. “I am interested to hear how others are managing. I would love to learn about tools for coping.”

“I have recently been diagnosed and am feeling overwhelmed and concerned about what my future holds,” another member wrote.

Spondylitis includes a range of conditions, including ankylosing spondylitis or radiographic axial spondyloarthritis, psoriatic arthritis, and other types. Spondylitis is a chronic inflammatory condition that is considered an autoimmune disease caused by immune system dysfunction. Enteropathic arthritis is a type of spondylitis associated with inflammatory bowel disease.

Ankylosing spondylitis is a severe form of spondylitis that can cause small bones in the spine to fuse. The condition is an uncommon type of arthritis. Symptoms include pain and stiffness in the lower back and hips, neck pain, sacroiliac joint pain in the pelvis, and fatigue. The ribs can also be affected and cause difficulty in breathing. Men have a higher risk of getting ankylosing spondylitis. People who have the HLA-B27 gene also have a greater risk of developing the condition.

Although there is no known cure for spondylitis, which is a chronic disease, symptoms are typically treated with nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, corticosteroids, biologic drugs, physical therapy, and surgery in the most acute cases. Be sure to maintain your treatment plan as you follow the suggestions in this guide.

Adopt a Healthy Lifestyle

Numerous studies have shown that a healthy diet, regular exercise, a reduction in stress, and stopping smoking can improve overall health and well-being.

Diet and Nutrition

A healthy diet can improve heart health and help you maintain a healthy weight. People with ankylosing spondylitis have twice the risk of ischemic heart disease as the general population. Ischemic heart disease, also known as coronary heart disease, is caused by blocked blood vessels and can significantly increase your risk of heart attack and stroke.

People with ankylosing spondylitis also have lower levels of vitamin D and an increased risk for osteopenia and osteoporosis, which can weaken bones and is a risk factor for bone fractures. Vitamin D helps the body absorb calcium, which is important for bone strength. Talk to your rheumatologist about your vitamin D and calcium levels to find out if you should be taking any supplements. Don’t make any big changes to your diet without medical advice.

Dietary recommendations for people with spondylitis follow the principles of an anti-inflammatory diet. These include:

  • Eating foods rich in antioxidants, such as colorful fresh fruits and vegetables
  • Eating foods that have omega-3 fatty acids, such as salmon, sardines, flaxseed, and walnuts
  • Lowering consumption of sugar, salt, cholesterol, and saturated fats found in red meat and other animal products
  • Avoiding processed foods and fried foods
  • Avoiding alcohol, which can interfere with the absorption of important nutrients and may cause adverse interactions with some medications
  • Drinking plenty of water

“I went on a keto diet, which eliminated most processed food and sugars. There are lots of great recipes and food tastes great,” said a MySpondylitisTeam member. “It helps, but tough to stay on with family meals away from home. Then, it also took off some weight, which was good. Best part was I was never hungry.”

Talk to your doctor about testing for food sensitivities and make note of foods that may correspond to flares and pain.

One member discovered foods that trigger symptoms: “I have found that when I eat certain foods, I have more pain. I cannot do any artificial sweeteners. Processed foods and gluten make me feel a lot worse.”

Another member described their experience with changing diet. “I’ve been on my anti-inflammatory diet for about two weeks now. It’s no sugar, dairy, gluten, or any foods I was sensitive to on my food sensitivity panel,” they explained. “I’m also taking a high dose of curcumin, which is the anti-inflammatory found in turmeric. So far, I’ve been feeling very good. Higher energy, better mood. My pain is not completely gone, but it is definitely dampened.”

Read more about the anti-inflammatory diet for spondylitis.

Medications and Diet

Be aware that some drugs that are used in the treatment of spondylitis may affect your need for nutrients. If you take methotrexate, ask your doctor or health care professional if you should be taking folic acid or folinic acid supplements to avoid complications with your liver.

NSAIDs can irritate your digestive tract. Some people with spondylitis may benefit from adding yogurt or probiotics to their diet to replenish microorganisms that are essential for a healthy gut. Discuss your medications and dietary considerations in detail with your health care team. Your doctor can give you a referral for a dietitian or nutritionist.

Exercise

Research shows that exercise can reduce pain and improve mobility for some people with spondylitis. Exercise has also been shown to improve mood and mental health conditions like depression and anxiety. Physical activity can improve overall health, reduce the risk for heart disease, and help you maintain a healthy weight.

For people with spondylitis, exercise can help improve posture, flexibility, range of motion, and bone strength, which may help prevent osteoarthritis. People with spondylitis have been shown to benefit from a variety of exercises that include:

  • Stretching for good posture
  • Aerobics or cardio workouts
  • Strengthening
  • Balance training

“Any exercise I can do always improves my pain and stiffness. I would say we must keep as active as we possibly can, no matter how slow we may be,” a MySpondylitisTeam member said.

“Walking helps me tremendously,” another member reported. “I use a cane and walk slowly and only do a quarter-mile round trip. But I do notice I walk much better and feel much better on my return trip. Just START!”

Talk to your health care provider about referrals for physical therapists who can provide guidance on exercises that are appropriate for you and your particular condition with spondylitis.

Stress Management

Psychological distress, such as depression, anxiety, substance misuse, and stress, occurs in people with spondylitis at a higher rate than the general population. It is associated with inflammation and can be exacerbated by an increase in disease activity. Managing mental health conditions has been shown to help reduce symptoms like pain and fatigue and increase a sense of wellness and well-being.

“Without a doubt, stress causes pain,” said one MySpondylitisTeam member. “Stress causes the body to tense up.” Another member described her struggles with depression. “My pain is getting worse. My depression is getting A LOT worse. I’m not sure I can handle too much more. I’m shutting down more and more.”

If you need help coping with stress or other mental health symptoms, talk to your doctor about a referral for stress management options, such as:

  • Cognitive behavioral therapy
  • Support groups
  • Mindfulness training
  • Exercise
  • Complementary therapies like acupuncture, tai chi, or yoga
  • Medication for depression or anxiety

Smoking

Smoking is associated with a poor outcome for people with spondylitis. Smoking is also associated with numerous adverse health conditions such as heart disease. People with spondylitis should avoid smoking.

How To Talk About Spondylitis With Family, Friends, and Co-Workers

People with spondylitis commonly struggle with how to talk about their condition with others. Here are some effective ways to communicate with family members, friends, and co-workers.

Talking To Family and Friends

Members of MySpondylitisTeam frequently express frustration regarding family and friends who don’t seem to understand what spondylitis is and how it affects the lives of those who have the condition. “I’m fed up with no one understanding the pain and difficulties of everyday life,” said a MySpondylitisTeam member. Another member responded, “Nobody gets it unless they have it, which leads to loneliness and isolation.”

Here are some tips for talking about spondylitis with loved ones and friends:

  • Provide a few concise examples of how spondylitis affects you. Avoid complicated or lengthy explanations that may be difficult to understand.
  • Let people who are close to you know when you are having a flare-up or experiencing pain or fatigue.
  • Tell others what kind of help you might need, even with seemingly simple tasks.
  • Keep family and friends updated on your treatments and how they affect you. Share a list of medications with those closest to you, in case of an emergency.

Talking To Co-Workers

Most people choose to be more discreet with co-workers about health conditions. You have a right to medical privacy at work. These tips offer ways to discuss your condition at the workplace:

  • Consider sharing information about your condition with a few co-workers you trust. They may provide support if needed.
  • Talk to a human resources (HR) administrator if you need any particular accommodations or modifications in your workplace or work schedule. Businesses with more than 15 employees are required to provide reasonable accommodations for health conditions through the Americans with Disabilities Act (ADA).
  • Before talking to a supervisor or HR manager about your condition, prepare a list of topics and questions to make sure you cover your concerns.
  • Ask your doctor to explain how accommodations may help you and share that information with your HR manager.

“I’m realizing I need to change my mindset from ‘I can’t because …’ to ‘I could if …’ so that I can gather the courage and self-compassion I need to advocate for myself,” wrote a MySpondylitisTeam member. “Whether negotiating household responsibilities or workplace accommodations, this seems like a good place to start from, for me personally.”

Family Life With Spondylitis

Family dynamics may need to be adjusted when someone has spondylitis. Household tasks can be difficult sometimes, and some customary roles may be altered. Family members may be called on for medical care and asked for more emotional support. Open communication among the family is essential so that expectations are clear among partners, children, and extended family members.

Parenting With Spondylitis

Parents with spondylitis may struggle when lifting a baby or small child. Meeting the challenges and demands of parenting can also be difficult when struggling with pain or fatigue.

“There’s so much guilt about me not being able to be the ‘soccer mom’ that I’m supposed to be — running around taking them to all kinds of sports and activities. I do as much as I can, but definitely not as much as I’d want to,” wrote a MySpondylitisTeam member about managing parenting.

Discuss your concerns with your spouse and older children, and determine how you can share parenting and family responsibilities. Reach out to extended family or friends if you are a single parent with spondylitis and need help with young children. You may want to seek outside help with managing household tasks and child care.

Working With Spondylitis

Research shows that psychological, social, and disease-related factors can affect work for people with spondylitis. Talk to your supervisor or HR administrator about workplace accommodations that may make work more comfortable, such as:

  • An ergonomic workspace
  • A modified or flexible schedule
  • Rest breaks
  • The option to work from home

You can find more information on accommodations that are supported by the ADA by consulting this resource on accommodations for people with arthritis. You can also talk to your health care providers about a referral for an occupational therapist.

Disability Benefits for Spondylitis

If you cannot continue working due to spondylitis and have been out of work for more than one year, you may be eligible for government disability benefits. Spondylitis is among the qualifying conditions to receive disability benefits, according to the Social Security Administration.

If you determine that disability benefits may be right for you, you will need to work closely with your doctor to verify any limitations you are experiencing with spondylitis.

Read more about getting disability benefits with spondylitis.

Paying for Medication

Medical advances in recent decades have produced more effective treatment options like biologic disease-modifying antirheumatic drugs (DMARDs) and synthetic DMARDs like methotrexate. At the same time, these developments have led to an increase in drug costs. For people with spondylitis, paying for medication can be prohibitive if insurance does not provide adequate coverage.

MySpondylitisTeam members frequently express frustration about the costs of treatment. “The fact these meds cost so much is ridiculous,” a member wrote. Another member said, “I just looked up the drug costs with my insurance and the cost is around $5,000 per month (my copay would be about $700 per month). Ouch.”

Be sure to explore all of the public and private health insurance options that you may be eligible for if you need help paying for your spondylitis treatment:

If the above options are not available to you, or if they do not provide adequate coverage, you may find resources within your state that provide additional support to help cover treatment costs. Some of the programs include:

A Medicare advisor or social worker can provide guidance on these programs to help you offset the costs of spondylitis treatments.

Learn more about how to reduce your medical bills.

Traveling With Spondylitis

When traveling, people with spondylitis can take practical steps to make travel more pleasant while managing pain. Whether visiting family, traveling for leisure, or taking a business trip, here are some tips that may help make traveling easier and more enjoyable:

  • In the weeks leading up to a trip, increase your stamina by walking more.
  • Find walking shoes that are comfortable and wear padded socks.
  • Carry a cross-body satchel with a padded strap for daily items.
  • Try not to overplan days, and take time to rest when needed.

When planning a trip, talk to your health care team to be sure your trip won’t interrupt your treatment plan. Take time to review what medications or supplies you will need when traveling, and organize essentials well in advance of your departure date.

Talk With Others Who Understand

On MySpondylitisTeam, the social network for people with spondylitis and their loved ones, more than 68,000 members come together to ask questions, give advice, and share their stories with others who understand life with spondylitis.

Are you living with spondylitis? Do you have questions or tips to share about living with the condition? Share your experience in the comments below, or start a conversation by posting on your Activities page.

References:
  1. Ankylosing Spondylitis — Mayo Clinic
  2. Overview of Types of Spondylitis — Spondylitis Association of America
  3. Lifestyle Medicine: The Health Promoting Power of Daily Habits and Practices — American Journal of Lifestyle Medicine
  4. Cardiovascular Risk in Ankylosing Spondylitis and the Effect of Anti-TNF Drugs: A Narrative Review — Expert Opinion on Biological Therapy
  5. Coronary Heart Disease, Myocardial Infarction, and Stroke — A Public Health Issue — Centers for Disease Control and Prevention
  6. Vitamin D Levels in Patients With Ankylosing Spondylitis: Is It Related to Disease Activity? — Pakistan Journal of Medical Sciences
  7. Diet's Effect on Spondylitis Symptoms — Spondylitis Association of America
  8. Foods That Fight Inflammation — Harvard Health Publishing
  9. Physical Activity in Ankylosing Spondylitis: Evaluation and Analysis of an Ehealth Tool — Journal of Innovation in Health Informatics
  10. Exercise for Mental Health — Primary Care Companion to the Journal of Clinical Psychiatry
  11. Exercise — Spondylitis Association of America
  12. Acute Mental Health Service Use Is Increased in Rheumatoid Arthritis and Ankylosing Spondylitis: A Population-Based Cohort Study — Therapeutic Advances in Musculoskeletal Disease
  13. Effect of Mindfulness-Based Stress Reduction vs Cognitive Behavioral Therapy or Usual Care on Back Pain and Functional Limitations in Adults With Chronic Low Back Pain: A Randomized Clinical Trial — JAMA
  14. A Truly Complementary Approach: A Qualitative Exploration of Complementary and Alternative Medicine Practitioners' Views of Treating Ankylosing Spondylitis — Musculoskeletal Care
  15. Smoking and Outcome in Ankylosing Spondylitis — Scandinavian Journal of Rheumatology
  16. How To Explain Arthritis to Family and Friends — CreakyJoints
  17. Working With Arthritis: 6 Changes You Should Make To Keep Your Career on Track — CreakyJoints
  18. Patients and Relatives Coping With Inflammatory Arthritis: Care Teamwork — Health Expectations
  19. Parenting With Arthritis — CreakyJoints
  20. Impact of Ankylosing Spondylitis on Work in Patients Across the UK — Scandanavian Journal of Rheumatology
  21. Working When You Have Arthritis — Arthritis Foundation
  22. A to Z of Disabilities and Accommodations — Job Accommodation Network
  23. Medicare and Medicaid Programs — Arthritis Foundation
  24. Damn It, I’m Going! | Traveling With Arthritis — Arthritis National Research Foundation
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.
Joan Grossman is a freelance writer, filmmaker, and consultant based in Brooklyn, NY. Learn more about her here.

A MySpondylitisTeam Member said:

Hey, Patricia, just waited 5years and three denials. Some attorneys refer you to Call disability advocates. Some go on your award. Some want money if you can afford. Make some calls many calls It's… read more

posted 21 days ago

hug

Recent articles

There are multiple treatment options for those with spondylitis that have been approved by the...

Alternative Treatments for Spondylitis

There are multiple treatment options for those with spondylitis that have been approved by the...
The Centers for Disease Control and Prevention (CDC) has recommended Pfizer COVID-19 vaccine...

COVID-19 Vaccine Boosters and Additional Doses for People With Spondylitis: Current Guidelines

The Centers for Disease Control and Prevention (CDC) has recommended Pfizer COVID-19 vaccine...
During the COVID-19 pandemic, MySpondylitisTeam will provide summaries and links to articles of...

COVID-19 and Spondylitis Essential Updates

During the COVID-19 pandemic, MySpondylitisTeam will provide summaries and links to articles of...
Managing pain is an essential part of living with spondylitis, yet many people with the condition...

Have You Been Treated Like a Drug Seeker While Living With Spondylitis Pain?

Managing pain is an essential part of living with spondylitis, yet many people with the condition...
In its advanced stages, ankylosing spondylitis (AS) can lead to a condition that is sometimes...

Bamboo Spine in Ankylosing Spondylitis

In its advanced stages, ankylosing spondylitis (AS) can lead to a condition that is sometimes...
Symptoms of spondylitis (also called spondyloarthritis) can increase during periods of high...

Managing Spondylitis Flare-Ups

Symptoms of spondylitis (also called spondyloarthritis) can increase during periods of high...
Spondylitis is an umbrella term that refers to a spectrum of related diseases also known as...

Is Spondylitis an Autoimmune Disease?

Spondylitis is an umbrella term that refers to a spectrum of related diseases also known as...
There’s no official diet for people with spondylitis, but many members of MySpondylitisTeam...

Snacks for Spondylitis: Ideas for Quick and Easy Bites

There’s no official diet for people with spondylitis, but many members of MySpondylitisTeam...
If you frequently experience chest pain with spondylitis, you’re not alone. Chest pain is a...

Chest Pain and Spondylitis

If you frequently experience chest pain with spondylitis, you’re not alone. Chest pain is a...
Living with spondylitis, a type of inflammatory arthritis, comes with a long list of symptoms....

Memory Loss and Spondylitis

Living with spondylitis, a type of inflammatory arthritis, comes with a long list of symptoms....
MySpondylitisTeam My spondylitis Team

Two Ways to Get Started with MySpondylitisTeam

Become a Member

Connect with others who are living with spondylitis. Get members only access to emotional support, advice, treatment insights, and more.

sign up

Become a Subscriber

Get the latest articles about spondylitis sent to your inbox.

Not now, thanks

Privacy policy
MySpondylitisTeam My spondylitis Team

Thank you for signing up.

close