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