If you're reading this, you likely know that ankylosing spondylitis (AS) is a form of inflammatory arthritis that primarily affects your spine. While this condition can feel overwhelming, understanding how to manage it effectively can make a tremendous difference in your daily life. This guide will help you have more informed conversations with your healthcare providers and take control of your health journey.
What is ankylosing spondylitis?
Ankylosing spondylitis is more than just back pain – it's an autoimmune condition where your immune system triggers inflammation in your spine and other joints. Ankylosing spondylitis is a form of inflammatory arthritis that primarily affects the spine, though it can impact other joints and organs throughout the body. It belongs to a group of conditions called axial spondyloarthritis, which mainly affects the axial skeleton – your spine and sacroiliac joints.
The condition typically begins with inflammation in the sacroiliac joints, where your spine meets your pelvis, and can gradually progress up the spine. Over time, this inflammation can lead to the formation of new bone, potentially causing some vertebrae to fuse together – a process that medical professionals call ankylosis.
Ankylosing spondylitis is part of a larger family of conditions called spondyloarthritis (SpA). Think of spondyloarthritis as the parent category, with several related conditions under its umbrella. The main difference lies in how and where these conditions affect your body:
Spondyloarthritis comes in two main forms:
1. Axial Spondyloarthritis, which primarily affects your spine and sacroiliac joints. This category includes: (a) Non-radiographic axial spondyloarthritis (nr-axSpA): Early stage where damage isn't visible on X-rays, and (b) Ankylosing Spondylitis: Advanced stage where structural changes are visible on X-rays
2. Peripheral Spondyloarthritis, which mainly affects your arms and legs.
Ankylosing spondylitis is essentially a more specific and advanced form of axial spondyloarthritis, where the inflammation has led to visible changes in your spine's structure. Understanding this progression helps explain why early diagnosis and treatment are so crucial.
What are the potential contributing factors for AS onset?
Recent research has deepened our understanding of AS. While the exact cause remains unknown, we now know that genetic factors, particularly the HLA-B27 gene, play a crucial role. Environmental factors and your gut microbiome composition have also been identified as potential contributors to the condition's development and progression.
Living with ankylosing spondylitis (AS) can feel overwhelming, but understanding your condition is the first step toward taking control of your health journey. This guide will walk you through what AS is, how it affects your body, and most importantly, how you can manage it effectively to maintain your quality of life.
What are early symptoms that could be Ankylosing Spondylitis?
One of the most challenging aspects of AS is that its early symptoms can be subtle and easily mistaken for other conditions. Key signs to watch for include:
- Lower back pain and stiffness, especially in the morning or after periods of inactivity
- Pain that improves with movement and exercise
- Fatigue that seems disproportionate to your activity level
- Pain and stiffness in other joints, particularly the hips and shoulders
- Inflammation in the eyes (uveitis), which affects up to 40% of people with AS
- Morning stiffness and low back pain, often begins in the late teen years, which is often ignored at this age, but should be considered
How is Ankylosing Spondylitis diagnosed?
Getting an accurate diagnosis is crucial for proper treatment. Your provider will look at your symptoms history (if possible, keep a symptoms journal that includes pain level, duration and other notes for each date that you have symptoms to make it easier to see patterns). Medical history, family history and tests will also be done. Here’s what you can expect:
- Detailed medical history and physical examination, including:
- Checking spinal mobility
- Measuring chest expansion
- Testing neck, hip and shoulder movement
Note: In a virtual exam, your provider will ask you to do some of these movements close to the camera, or to move the camera so that they can observe as you are moving your spine, chest, hips and shoulders.
- Advanced imaging techniques, including MRI with specific protocols for detecting early inflammation, such as:
- X-rays to check for sacroiliac joint changes
- MRI to detect early inflammation
- CT scans for detailed bone structure
- Blood tests for inflammatory markers (ESR and CRP) and other antibody tests to rule out similar conditions
- Genetic testing for the HLA-B27 gene
- Assessment of symptoms using validated screening tools
Does AS look similar to other conditions?
Getting an accurate Ankylosing spondylitis diagnosis can be challenging, because several conditions share similar symptoms. Here's how doctors differentiate AS from other conditions:
Back Pain:
- AS pain typically improves with movement
- Mechanical pain usually worsens with activity
- AS causes morning stiffness lasting over 30 minutes
- Primarily affects smaller joints first
- Usually symmetric (affects both sides equally)
- Different pattern of joint involvement
Fibromyalgia:
- Affects multiple tender points throughout the body
- Doesn't show inflammation markers in blood tests
- Doesn't cause structural changes in joints
Diffuse Idiopathic Skeletal Hyperostosis (DISH):
- Affects older populations more commonly
- Different pattern of bone formation
- Usually doesn't cause inflammation
Now That I've Been Diagnosed, What Are My Treatment Options?
Managing Ankylosing Spondylitis requires a comprehensive approach that combines different treatments to control inflammation and maintain mobility. Here's a detailed look at your options.
Medications:
1. First-Line Treatments:
- NSAIDs (like ibuprofen or naproxen) to manage pain and inflammation
- COX-2 inhibitors for those who can't tolerate traditional NSAIDs
2. Advanced Treatments, if the first line treatments do not work, or stop working:
- Biological DMARDs (TNF inhibitors or IL-17 inhibitors)
- Traditional DMARDs like sulfasalazine for peripheral joint involvement
- Corticosteroid injections for specific problem areas
3. Physical Therapy:
- Customized exercise programs
- Posture training
- Manual therapy techniques
- Water therapy
4. Lifestyle medicine, which can be used on its own or as part of a full treatment plan alongside medication and PT – including but not limited to the below:
- Restful sleep
- Stress management
- Movement therapy
- Social connection
What lifestyle changes can be part of my treatment plan to help my body heal itself?
Living with AS affects different aspects of your life, but with the right approach, you can have many more good days than difficult ones. Here are some ideas for lifestyle modifications you can consider talking with your provider team about:
- Maintaining good posture during daily activities
- Using ergonomic furniture and supports during your work day
- Following an anti-inflammatory diet
- Practicing stress management techniques
- Getting adequate sleep on a supportive mattress, with a pillow under your knees while sleeping on your back
Which supplements will help my Ankylosing Spondylitis the most?
While supplements shouldn't replace prescribed medications, some may help support your overall health and manage symptoms. Always discuss supplements with your healthcare provider before starting them:
- Vitamin D: Essential for bone health and immune function
- Omega-3 fatty acids: Help manage inflammation
- Turmeric/Curcumin: Natural anti-inflammatory properties
- Magnesium: Supports muscle and nerve function
- Supporting Supplements:
- Calcium: Important for bone health, especially if you're taking corticosteroids
- Vitamin B complex: Helps with energy levels and nerve function
- Probiotics: Support gut health and immune function
What types of exercise and movement do you recommend to do at first to help with better mobility and to manage the pain?
Exercise isn't just beneficial for AS – it's essential. Here's a comprehensive look at how to incorporate movement into your life safely and effectively, with suggestions for types of exercise and how often to do them:
Daily Flexibility Routine (15-20 minutes) – Start your day with gentle stretches targeting key areas:
1. Spine Mobility:
- Cat-cow stretches: 10 repetitions, moving slowly
- Gentle spinal twists while seated: Hold for 30 seconds each side
- Wall angels: 10 repetitions, focusing on posture
2. Hip Flexibility:
- Hip flexor stretches: Hold 30 seconds each side
- Figure-4 stretches: Hold 30 seconds each leg
- Gentle hip rotations: 10 circles each direction
3. Chest and Shoulder Mobility:
- Doorway stretches: Hold 30 seconds
- Shoulder blade squeezes: 10 repetitions
- Arms circles: 10 forward, 10 backward
Cardiovascular Exercise (20-30 minutes) Get your heart rate up 3-5 times per week if possible:
Choose low-impact activities that keep your heart healthy without stressing your joints:
- Swimming or water aerobics
- Stationary cycling
- Walking on even surfaces
- Elliptical training
- Modified yoga or tai chi
Strength Training (2-3 times per week) – No equipment needed, unless you want to buy resistance bands to help.
Focus on maintaining muscle strength without overloading your joints:
1. Core Stability:
- Planks: Start with 15 seconds, build up gradually
- Bird dog exercises: 10 repetitions each side
- Dead bug exercises: 10 repetitions each side
2. Lower Body:
- Wall sits: Start with 20 seconds
- Bodyweight squats: 10-15 repetitions
- Step-ups: 10 each leg
3. Upper Body:
- Wall push-ups or modified push-ups
- Resistance band rows
What is the potential impact of Ankylosing spondylitis to my daily life?
Living with AS means making some adjustments, with the mindset that you will still maintain an active and fulfilling life. Living with AS isn't just about managing physical symptoms. The emotional and psychological aspects of chronic illness deserve attention, too. Here's are some areas to think about how you want to approach them, with the help of your healthcare team:
Work Life:
- Communicate with your employer about necessary accommodations
- Take regular movement breaks
- Modify your workspace for optimal ergonomics
- Consider flexible working hours to manage morning stiffness
Physical Activity:
- Modify exercise routines as needed
- Listen to your body and pace yourself
- Find activities you enjoy that don't aggravate symptoms
- Build in rest periods between activities
Social Life:
- Be open with friends and family about your needs
- Plan activities during your better hours
- Have backup plans for high-symptom days
- Join support groups to connect with others who understand
Daily Tasks:
- Use assistive devices when needed
- Organize your home to minimize bending and reaching
- Plan ahead for high-energy tasks
- Break larger tasks into smaller, manageable parts
Managing Flares:
- Recognize early warning signs
- Have a flare management plan ready
- Know when to contact your healthcare provider
- Keep track of triggers and patterns
What are some ideas for how to cope with the anxiety and uncertainty that comes with the AS flares and symptoms from day to day?
Living with a chronic condition like AS affects not just your physical health but your emotional well-being too. Understanding and addressing the emotional aspects of AS is just as important as managing the physical symptoms.
Your emotional journey with AS might include periods of frustration, anxiety, or uncertainty about the future. These feelings are completely normal and valid. Many people with AS experience what medical professionals call "grief cycles" as they adjust to their diagnosis and learn to navigate life with a chronic condition.
Building emotional resilience takes time and support. Here are some effective approaches to maintaining good mental health:
- Professional Support: Working with a mental health professional who understands chronic illness can provide valuable tools for managing stress and anxiety. They can help you develop coping strategies specific to your situation and teach you techniques for managing pain-related stress.
- Mindfulness and Stress Management: Practicing mindfulness can help reduce stress and improve pain management. This might include meditation, deep breathing exercises, or gentle yoga. These practices can help you stay present and reduce anxiety about future symptoms or progression.
- Support Networks: Connecting with others who understand your experience can be incredibly powerful. Consider joining AS support groups, either in person or online. These communities can provide practical advice, emotional support, and a sense of belonging. Your family and close friends can also be valuable allies in your journey, especially when you help them understand your needs.
If I am a woman and want to get pregnant after my AS diagnosis, what are some things to consider before a pregnancy?
If you're thinking about starting or expanding your family, know that many people with AS successfully navigate pregnancy and parenthood. Here are some areas to consider at key times.
Before Pregnancy: Schedule a preconception consultation with your rheumatologist to discuss medication adjustments. Some AS medications need to be stopped before conception, while others are safe to continue. This planning phase is crucial for both prospective mothers and fathers with AS.
During Pregnancy: AS symptoms can change during pregnancy – some people experience improvement, while others might have increased symptoms. Your healthcare team will monitor you closely and adjust your treatment plan as needed. Regular communication with both your rheumatologist and obstetrician is essential.
After Delivery: Planning for postpartum support is crucial. Consider:
- How to manage baby care while protecting your joints
- Arranging help for physically demanding tasks
- Strategies for handling fatigue
- Maintaining your AS management routine while caring for your newborn
Genetic Considerations: While AS has a genetic component, having AS doesn't mean your children will definitely develop it. Genetic counseling can help you understand more about inheritance patterns and make informed decisions.
Looking Ahead: Research and Hope
The field of AS treatment is rapidly evolving. Current research focuses on:
- New biological treatments targeting specific inflammatory pathways
- The role of the microbiome in disease progression
- Personalized medicine approaches based on genetic profiles
- Novel physical therapy techniques incorporating technology
Remember that while AS is a chronic condition, it's one that can be managed effectively with the right approach. Stay informed about your condition, work closely with your healthcare team, and don't hesitate to advocate for yourself when needed. Rheumission is here to help, whether to answer questions you may have, or to see you for an initial diagnosis or second opinion.
To learn more about our Rheumission approach to care, please visit the Why Rheumission section of our site, or book a 15-minute intro call with one of our providers. Our approach is to help you get back to being you, with more joy and less pain. We will listen to you and co-create a plan that works for where you are now, and where you want to be. We are always here for you.
About the Authors
Dr. Micah Yu is an integrative rheumatologist who incorporates complementary medicine with traditional rheumatology. He is quadruple board-certified in Rheumatology, Internal Medicine, Integrative Medicine and Lifestyle Medicine. He obtained his MD from Chicago Medical School and holds a Masters in Healthcare Administration and Biomedical sciences. He completed his internal medicine residency and rheumatology fellowship at Loma Linda University in Southern California. He is a graduate of the Andrew Weil Integrative Medicine Fellowship at the University of Arizona. In addition, he is certified in functional medicine through the Institute of Functional Medicine. He has a very unique perspective on autoimmune disease and arthritis, as he is both a patient with arthritis and physician. Dr. Yu was diagnosed with gout at the age of 17 and later diagnosed with spondyloarthritis as well. He is able to understand his patient’s medical problems from a patient perspective. The foundation of his practice is to combine allopathic medicine with complementary medicine. He works with his patients to come up with a treatment plan that not only fights the disease, but also is aligned with his patient’s goals. In addition to Rheumission, Dr. Yu is on social media under @MYAutoimmuneMD educating about autoimmune diseases and integrative medicine.
Jill Ryan is a seasoned Rheumatology Physician Assistant with over 30 years of experience and a strong commitment to patient care. She worked at Dartmouth Health System as a Rheumatology Physician Assistant for 24 years, and prior to that role, as an Internal Medicine Physician Assistant for 8 years. Jill is deeply passionate about caring for patients and guiding them on their wellness journeys. With training in integrative medicine, she focuses on holistic approaches that empower individuals to manage autoimmune diseases effectively, believing in the importance of patient education and developing personalized care plans that promote overall health and well-being.
Note: This information is for informational purposes only. No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition or treatment and before undertaking a new healthcare regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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