If you or a loved one is living with ankylosing spondylitis, you may wonder what you can do to relieve your symptoms and prevent disease progression, as well as what your rheumatologist can do. The good news is many people are able to reduce their pain and stiffness with medication, exercise, and a healthy diet. Making some adjustments to your home and work environments and using an assistive device as necessary can also help you to be more comfortable and get around more easily.
Managing Daily Life and Complications of Ankylosing Spondylitis
Ankylosing spondylitis (AS) is a kind of chronic inflammatory arthritis that primarily affects the joints, ligaments, and tendons of your spine. Inflammation of the sacroiliac joint — the joint between the sacrum, which is located at the base of the spine, and the bones of the pelvis — is the hallmark symptom.
There are drugs and lifestyle strategies that can help you feel better and stay in the best health possible. Working closely with your rheumatologist and the rest of your healthcare team is the first step. Finding ways to feel good physically and mentally doesn’t always come easily when you have AS, but it can be done. Here we address many aspects of living with ankylosing spondylitis and how to deal with common issues.
RELATED: What Is Ankylosing Spondylitis (AS)? Statistics, Causes, Diagnosis, and More
Diet for Ankylosing Spondylitis
Although no diet or specific food has been proven to slow the progression of ankylosing spondylitis or help control symptoms, that doesn’t mean that what you eat isn’t important for your health. A balanced and nutritious diet can help you stay healthy.
- Maintain a healthy weight. Excess weight can put stress on your joints and make you less mobile.
- Keep your bones strong by consuming foods that are rich in calcium. It’s also important to include foods or beverages fortified with vitamin D in your diet, or take a supplement.
- Avoid smoking and monitor alcohol. Smoking can worsen ankylosing spondylitis, research shows, cause breathing problems, and raise the rate of respiratory infections. Alcohol can also carry some risks for people with AS because it can interfere with a variety of different medicines. Talk to your doctor about whether and how much you can safely drink.
- Cut down on saturated fat. Some research suggests that a higher saturated fat intake could be correlated with more functional limitations in people with AS.
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Exercising With Ankylosing Spondylitis
One unique (and difficult) aspect of the back pain and stiffness of ankylosing spondylitis is that unlike other types of back pain that feel better after rest, inactivity can actually increase discomfort with AS. One way to combat the stiffness in your joints and maintain flexibility is by stretching. “In general, any movement activities that don’t worsen your symptoms and keep you moving are good,” says Zachary Long, a physical therapist with Carolina Sports Clinic in Charlotte, North Carolina.
One recommended form of stretching for people with AS is a controlled articular rotation (CAR), which uses the whole range of motion in a single joint.
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Exercise doesn’t just improve your stiffness if you have ankylosing spondylitis; it’s an important part of your overall treatment, according to the Spondylitis Association of America. The best way to make sure you’re doing the proper exercises with the correct technique is to seek out a physical therapist to help you get started.
Try to make time for physical activity every day, even if it’s just for 20 minutes; consistency is the key to long-lasting benefits. When you have AS, maintaining good posture is important in all aspects of life, and that’s especially true when you’re exercising: Make sure you’re doing regular posture checks through your routine.
RELATED: 7 Exercise Dos and Don’ts for Ankylosing Spondylitis
Managing Your Prescriptions for Ankylosing Spondylitis
If you have ankylosing spondylitis, you will likely take a few different kinds of medication to address different parts of the disease.
Nonsteroidal anti-inflammatory drugs (NSAIDs) usually come in capsule or tablet form and are typically the first drug recommended for AS. NSAIDs work by reducing inflammation and pain, although they can cause gastrointestinal bleeding if taken chronically. It’s recommended you take the smallest daily dose that gives you adequate relief.
A tumor necrosis factor (TNF) alpha-blocker, also known as a TNF inhibitor or anti-TNF drug, might be prescribed if NSAIDs don’t provide relief or if side effects become an issue. These drugs work by targeting the protein that causes inflammation and must be injected or infused intravenously.
Interleukin-17 (IL-17) inhibitors are the newest medication options for AS. These self-injected drugs also prevent inflammation.
Corticosteroids may be used if you have swelling in one or more joints, though they’re not recommended if the joint swelling occurs throughout the body. Steroid eye drops are used to treat uveitis, an inflammation of the eye that affects about 2 in 5 people with AS.
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TNF alpha blockers and IL-17 inhibitors are examples of a type of drugs known as biologics. Different from traditional drugs, biologics are genetically engineered from living organisms rather than being manufactured from specific chemical ingredients. These therapies are a type of disease-modifying anti-rheumatic drug (DMARD) that targets the immune system.
Biologics can help with the pain and stiffness of AS and may even potentially slow the progression of structural change caused by the disease.
RELATED: Biologics for Ankylosing Spondylitis: How They Work
Complementary and Alternative Medicine for Ankylosing Spondylitis
You may decide you want to try natural remedies or therapies in addition to any medication you’re taking for ankylosing spondylitis. If you’ve heard about remedies or practices that have helped improve AS symptoms for other people, talk to your doctor before you make any changes.
Back pain is the most common symptom of ankylosing spondylitis, and although it might seem counterintuitive, it can actually be at its worst when you first wake up. There are several strategies to try to relieve back pain, like stretching, exercise, massage, and even yoga.
Your standing posture makes a difference in how you feel, so check it by standing against a wall. Posture in bed is important, too. A firm mattress and a pillow that supports your neck properly are must-haves, and if possible, try sleeping on your belly for part of the night.
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Even though you might view supplements as a low-risk way to try to improve your AS symptoms, experts urge caution. Although some vitamins and supplements may be associated with benefits like strong bones or reduced inflammation, others that are marketed to people with ankylosing spondylitis, such as glucosamine and chondroitin, have no proven benefits.
Omega-3 fatty acids can help reduce inflammation in joints in people with rheumatoid arthritis, but it hasn’t been studied much in people with ankylosing spondylitis. Because people with AS have increased risk for low bone density, your doctor may recommend vitamin D and calcium supplements. Before trying any supplement for AS, make sure you ask your doctor first to avoid any potential interactions with other medication you’re taking.
RELATED: Supplements for Ankylosing Spondylitis: Are Natural and Alternative Treatment Options Safe?
There is a lot of interest in whether or not apple cider vinegar can help treat or manage ankylosing spondylitis but not much science to back it up. It doesn’t necessarily mean that apple cider vinegar has no benefit if you have AS, but it hasn’t been proven in any scientifically rigorous studies.
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Turmeric is a dietary supplement that is often used to reduce inflammation in many conditions, including types of inflammatory arthritis. The herb is derived from the rhizome (underground stem) of the plant of the same name; once it’s dried and made into a powder it can be packaged as a supplement.
Although the use of turmeric has not clearly been shown to improve symptoms of AS, there are studies that show it can have some benefits in treating overall arthritis severity and pain. If you’re considering adding turmeric to other therapies you are taking for AS, you should talk to your rheumatologist to determine what dose you should take and how you’ll evaluate its effectiveness.
RELATED: Does Turmeric Help Ankylosing Spondylitis?
Essential oils are derived from flowers, herbs, or trees and typically used in aromatherapy, a mind-body technique that may help some people deal with stress and fatigue. Most experts agree that using essential oils is very safe as long as you don’t have any type of respiratory disease, but you’ll still want to mention it to your doctor. There isn’t any evidence that essential oils can help with ankylosing spondylitis; a few small studies show benefits in people with arthritis when combined with gentle massage.
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Home Accessibility and Ankylosing Spondylitis
If you’re living with ankylosing spondylitis, there are small changes you can make around your home to make it easier for you to relax and move around safely and comfortably. Here are a few suggestions to get you started:
- Plenty of pillows and supportive chairs will help you maintain good posture and may reduce the severity of your symptoms.
- Store commonly used items where you can access them easily without bending or straining.
- Handrails and a raised toilet seat can help you stay safe and reduce the degree of bending you need to do.
Devices and Mobility Aids for Ankylosing Spondylitis
There are many assistive devices for people with AS that can help minimize the pain that doing everyday tasks can trigger. There are no hard and fast rules about what devices you need; your best bet is to talk with your doctor or an occupational therapist who can assess your symptoms and lifestyle to help you select the devices that make sense for you.
Some of the most helpful assistive devices for people with AS:
- Mobility aids, such as canes, crutches, and walkers
- Reachers that can help extend your grasp
- Raised seats and cushions for chairs, bed, and toilet seats
- Handrails in the bath and shower
- Custom orthotics to help with the pain of plantar fasciitis, which is more common in people with AS
- Braces and splints that can ease the stress on your joints and tendons
Many of these tools can help conserve energy, keep you from falling, and minimize painful symptoms.
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Traveling With Ankylosing Spondylitis
Although having AS may make traveling harder, it doesn’t mean you have to stay home. Planning ahead and taking care of yourself while you’re in transit will help improve your time away. It’s a good idea to see your doctor before you go to make sure you have enough of your medicines (and keep them with you, not in a checked bag, if you’re flying) and to ensure you’re up to date on your vaccinations. If you will be taking a biologic medication with you, be sure to visit the official drug website to get a travel brochure, which includes good tips about traveling with your medication.
Packing light and having bags with wheels can be lifesavers, especially if you’re traveling alone. If you have a problem with stairs, call ahead to your hotel or other form of accommodations and let them know what you need. If your medication needs to be stored in a refrigerator, make sure that your room has one.
Driving when you have ankylosing spondylitis can be difficult, but there are ways you can make it as comfortable as possible. Avoid twisting or bending too much, which can be painful. One way to do that when getting into the car is to first sit down on the seat with your knees pointing out of the car, and then pivot on your seat to bring your legs in.
Pillows for your back and neck can make you more comfortable and keep your posture upright while in the car. It’s also important to take breaks if you’re taking a longer trip. Try not to sit still for longer than 30 to 40 minutes at a time, as it may cause significant discomfort, says Tara Perry, an occupational therapist at Keck Hospital of the University of Southern California in Los Angeles. Do some stretching and walking to break things up, suggests Perry.
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Finding Doctors for Ankylosing Spondylitis
Because ankylosing spondylitis can impact your health in a variety of ways, it’s important to assemble a team of specialists to help you manage AS and your overall health, including, most likely, a rheumatologist. Rheumatologists specialize in treating musculoskeletal disease and systemic autoimmune conditions that affect the joints, muscles, and bones. This specialist will treat and prescribe medication for your AS, as well as refer you to other specialists you may need because of your condition, possibly including some of the following:
Physiatrist or Physical Therapist These experts can help you maintain your mobility with exercise, stretches, and core strengthening training. Physical therapy is strongly recommended by the American College of Rheumatology as part of AS treatment, and it can help with your symptoms.
Cardiologist Because ankylosing spondylitis is associated with a higher risk of heart attack and stroke, you may need a consult with a cardiologist.
Gastroenterologist Inflammatory bowel disease sometimes accompanies AS and is best handled by a GI doctor.
Dermatologist Some people with ankylosing spondylitis are also diagnosed with psoriasis, a chronic skin condition.
Eye Doctor Uveitis, an inflammation in one or both of your eyes, can occur in up to 40 percent of people with AS. It’s important to see your eye doctor if symptoms such as redness, sensitivity, vision issues, or eye pain occur.
Registered Dietitian Although there’s not a diet specific to ankylosing spondylitis, it’s important to follow a well-balanced diet and maintain a healthy weight.
Mental Health Professional According to the National Institute of Mental Health, people with chronic medical conditions have a higher risk of depression. A psychologist, psychiatrist, or other mental healthcare professional can help you cope.
Pharmacist A pharmacist can help you with all aspects of your medication, including dosing and administration, potential side effects, and drug interactions.
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Your Mental Health and Ankylosing Spondylitis
Ankylosing spondylitis can increase your risk for depression, especially when you’re first diagnosed. Pain can be a big factor in mood disorders; it can make sleeping difficult, which can be both a cause and an effect when it comes to depression.
Working with your doctor to develop and stick to a treatment strategy for AS is important. Part of that plan should include self-care, such as exercise, sleeping well, and seeking a mental health professional if your feelings of sadness or lack of pleasure for life persist.
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Managing stress is especially important when you have ankylosing spondylitis. Not only will keeping your stress level down improve your mental state, there’s evidence that stress can make AS symptoms, including pain, worse. Experts believe that stress activates inflammatory responses and hormones that can potentially lead to worsening symptoms or even a flare.
Putting strategies in place for staying stress-free when you have ankylosing spondylitis can help you navigate through the pain and unexpected events that each day can bring. Take time to breathe, slow down, and enlist the support of others when you start to feel overwhelmed.
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How Ankylosing Spondylitis Can Affect Your Relationships
If you’ve been living with ankylosing spondylitis, you know there’s really no part of your life that the condition doesn’t touch. Whether it’s work, travel, eating, or sleeping, everything requires an extra layer of attention. Relationships are no exception; forging and maintaining strong relationships when you have AS takes planning, open communication, and patience, both with yourself and your loved ones.
Your Family Relationships
Although your family may be supportive, there may be many aspects of ankylosing spondylitis that they have a hard time understanding. Because there is no big outward change that occurs when you have AS, at least initially, they may think you’re exaggerating the pain or fatigue you’re feeling.
Try to explain what ankylosing spondylitis is to your family as well as how it feels in your body. You might even bring them along to your next rheumatologist appointment so that they can learn more about your condition.
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Your Friendships and Ankylosing Spondylitis
It can be difficult to maintain or forge new relationships when you have a chronic condition like ankylosing spondylitis. When symptoms like pain and fatigue flare up, it can make you want to hole up alone until you feel better. Although this is a perfectly reasonable response, it can also lead to feelings of isolation that can impact your overall health.
You might think that friendships and socializing are best when they happen organically, but the truth is you’ll probably have to plan ways to get together with people. Taking a group exercise class or picking up a new hobby, like painting or cooking, can expose you to new potential friends.
Why Ankylosing Spondylitis Can Make You Feel Isolated — and What to Do About It
You might crave contact with other people who have ankylosing spondylitis, which can be difficult given that the disease is relatively rare. Social media can be a good way to start. There are Facebook groups devoted to AS, and the Spondylitis Association of America has free message boards where you can post questions and comment on other posts. Depending on where you live, you may be able to find an in-person support group for people with ankylosing spondylitis.
RELATED: 5 Ways to Get Involved in the Ankylosing Spondylitis Community
Your Romantic Relationships and Ankylosing Spondylitis
Whether you’re still in your “honeymoon phase” or are in a long-term relationship, ankylosing spondylitis can make it hard for you to stay emotionally and physically close. To avoid being overwhelmed by the demands of AS, it’s important to be aware of issues you may face.
Make sure you communicate as much as possible — about your condition and what you do and don’t need help with. It’s important to be flexible, too; you may have to replace more taxing physical activities with gentler ones that you can enjoy with your partner.
Family Planning With Ankylosing Spondylitis
Until recently, there wasn’t much information about the risks and challenges that ankylosing spondylitis poses in pregnancy. In the past few years, however, a few small studies have shed light on what women with AS can expect, including increases in disease flare-ups. The healthier you are when you get pregnant, the better your outcomes are likely to be. If possible, discuss your plans for pregnancy with your rheumatologist to ensure your disease activity is stable enough to give you the greatest chance at a healthy pregnancy. Self-care, always important in pregnancy, is even more important when you have ankylosing spondylitis: Adequate sleep, eating healthfully, and getting exercise need to be part of your daily routine.
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Sex Life With Ankylosing Spondylitis
The symptoms of ankylosing spondylitis can make having sex more challenging. Although research suggests that sexual dysfunction is more common in people with a diagnosis of AS than in the general population, many people with the condition have a healthy and satisfying sex life. “If sexuality was an important part of your life before your diagnosis, you should continue to find ways to enjoy sex,” says Mitchell Tepper, PhD, MPH, a sexuality educator for people with disabilities and their partners.
RELATED: Enjoying a Healthy Sex Life With Ankylosing Spondylitis
A big part of sexual enjoyment when you have ankylosing spondylitis is communicating with your partner and being open to trying new props and positions to help you be more comfortable. Finding ways to please your lover can improve your relationship and build your self-confidence, says Dr. Tepper.
If it’s distressing or uncomfortable for you or your partner to address some of these issues, you may want to consult with a sex therapist who can give you strategies that you both feel good about.
Back pain, a common symptom of ankylosing spondylitis, is often an obstacle to good sex. There is no “one way” to have sex when you have back pain; the ideal position might depend on what type of back pain you have. Researchers have actually used infrared and electromagnetic motion capture systems to measure spine movement during sex to help determine the most pain-free ways to have intercourse.
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Medications for Ankylosing Spondylitis
There are a variety of medication options for ankylosing spondylitis; you and your doctor should decide together which therapy is best for you. The three main types of medication prescribed for AS include the following:
NSAIDs Nonsteroidal anti-inflammatory drugs (NSAIDs) are often the first drug treatment your doctor will prescribe. These drugs can reduce inflammation and pain. Common NSAIDs include indomethacin (Indocin), ibuprofen (Motrin, Advil), and naproxen (Aleve, Naprosyn).
TNF Alpha-Blockers Tumor necrosis factor (TNF) alpha-blockers are biologic drugs that target a specific protein that causes inflammation. Currently there are five TNF alpha-blockers approved by the U.S. Food and Drug Administration (FDA) for use in AS:
- adalimumab (Humira)
- certolizumab (Cimzia)
- etanercept (Enbrel)
- golimumab (Simponi)
- infliximab (Remicade)
These drugs are injected or infused intravenously.
IL-17 Inhibitors IL-17 inhibitors are the newest type of medication approved to treat ankylosing spondylitis. These drugs are also biologics that work to target interleukin-17A, a protein that can activate inflammation in the body. Although this is a normal process, the number of interleukin-17 producing cells is higher than normal in people with AS. There are two approved IL-17 inhibitors for ankylosing spondylitis, secukinumab (Cosentyx) and ixekizumab (Taltz autoinjector). Both these drugs must be self-injected under the skin with a prefilled syringe or injection pen. Additionally, a class of drugs called Janus kinase inhibitors has also been approved for treatment of AS.
Money Matters: The Cost of Living With Ankylosing Spondylitis
The direct and indirect costs of treating ankylosing spondylitis are significant. Many of the new drugs can be costly, and your symptoms may make it more challenging to earn a living. It’s estimated work disability affects 10 to 20 percent of people with AS, according to a study published in Arthritis and Rheumatism. Even if you’re able to work, the pain and fatigue that can come with ankylosing spondylitis can make you less productive.
Medication Prices for Ankylosing Spondylitis
Drugs for ankylosing spondylitis can cost more than $20,000 a year, causing some people to stop taking the medication or switch to a lower-than-recommended dose. The good news is that there are programs available to help defray costs if you’re willing to do the legwork.
“Most of the drug companies have programs to subsidize costs, and most offices and medical centers have somebody to assist patients,” says James T. Rosenbaum, MD, division chief of arthritis and rheumatic diseases at Oregon Health and Science University in Portland.
RELATED: Affording Your Ankylosing Spondylitis Medication
People who have successfully managed to keep their medication costs in check have one thing in common: They use all the resources available. Find out what help is available to you by asking your doctor, your insurance company, your pharmacy, and even other people with ankylosing spondylitis or another condition that might require similar medication to what you are taking.
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Managing Your Work Life With Ankylosing Spondylitis
Although the pain and fatigue that come with ankylosing spondylitis can make working difficult, staying at your job can help keep you healthier, both mentally and physically. If you’re beginning to struggle at work or you want to plan ahead before it becomes a problem, meeting with an occupational therapist can help. These experts are trained to help you decide if and when to tell your employer about your condition, as well as what kinds of accommodations might help you be more productive.
Don’t be overly concerned about the potential cost of the changes or tools you might need for your job; according to a survey conducted by the Job Accommodation Network, employers typically spend an average of $500 for accommodations — not a high price when you consider the cost of recruiting, hiring, and training a new employee.
If you have a job that is more physically challenging, you may want to consider exploring a different profession that you can do if your AS progresses.
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If you’re employed full-time, there’s a chance that you spend more hours at work than you do at home. If you have ankylosing spondylitis, you may feel you have no alternative but to push through the pain in what’s often a “one-size-fits-all” office environment. Not true: There are many inexpensive and relatively simple changes that will benefit your health and your company’s bottom line. Little things like how you position your keyboard or the addition of a footstool can help you be more comfortable.
Can You Apply for Disability if You Have Ankylosing Spondylitis?
Some people with ankylosing spondylitis choose to leave their job and collect Social Security disability benefits (SSDI). SSDI is a cash benefit for people who have worked long enough and paid enough Social Security taxes to have “insured stats.” The ankylosing spondylitis has to be severe enough to keep you from working a full eight-hour day, five days per week. There are screening tools to help you know what you might qualify for, as well as a calculator to help determine your monthly benefit.
Patient Stories: Living With Ankylosing Spondylitis
There’s no sugarcoating it: Living with ankylosing spondylitis is hard. Although a diagnosis of AS may help you finally make sense of your symptoms and begin treatment you need, it can also shake your identity to your core. Even if living with AS changes many aspects of your life, it doesn’t have to make you “smaller” or keep you from achieving your goals.
Dan Reynolds: Imagine Dragons Frontman Shares How He Manages Ankylosing Spondylitis
Dan Reynolds, lead singer of the band Imagine Dragons, first went public with his diagnosis during a concert in Leeds Arena in West Yorkshire, England. “I have ankylosing spondylitis,” Reynolds told the crowd. “It’s an autoimmune disease, and I’ve never spoken about it because, frankly, I’ve been embarrassed. … You basically turn into an older person with arthritis at a young age and your joints can fuse together, and it’s a pretty scary thing,” he said.
It took many years for Reynolds to finally get diagnosed and even then, finding the right combination of medication, nutrition, and exercise took a lot of trial and error. The married father of four credits his doctor, healthy eating, and yoga for helping him to continue to thrive and rock on.
RELATED: Prioritizing His Personal Health, Dan Reynolds Can Handle Ankylosing Spondylitis
Charis Hill: Fashion Model, Passionate Advocate for Ankylosing Spondylitis
Charis Hill chalked up much of the pain, injuries, and slow recovery to being a college athlete who pushed to the limit. It wasn’t until Hill was laid out by an upper respiratory infection that Hill finally found the root of the symptoms: ankylosing spondylitis, a condition Hill shared with her estranged father.
Now Hill is an advocate for people with disabilities through her work as a model and blogger. “To me, raising awareness is so important because if I can affect even 10 people, that’s 10 people who will interact better with people in pain, and will pass on that knowledge. I know I’m doing something that is changing people’s lives,” says Hill.
Success Stories: People Who Overcame the Challenges of Ankylosing Spondylitis
The pain and physical symptoms of ankylosing spondylitis can make even the most resilient person want to give up on some days. There are many people with the disease who are somehow able to push through those feelings and pursue their dreams. People with ankylosing spondylitis are novelists, athletes, mothers, and most importantly, fighters.
Clinical Trials for Ankylosing Spondylitis
Clinical trials are an important part of determining if a drug, device, or other form of therapy is safe and effective. People with ankylosing spondylitis are needed to participate in studies so that new and better treatments can be approved and made available to everyone.
How to Find a Clinical Trial
Although there are some potential risks involved in taking part in a clinical trial, there are many safeguards in place to protect participants. The U.S. National Institute of Health (NIH) keeps a database of the privately and publicly funded clinical studies, including those for ankylosing spondylitis.
What to Consider Before Joining a Clinical Trial
Clinical trials require different levels of commitment. Some may require very little, whereas others may involve frequent trips to a healthcare facility to get MRIs or blood tests. Although participating in a trial may give you access to a new treatment for ankylosing spondylitis that’s not available anywhere else, there’s also a chance you could be given a placebo, or dummy treatment. It’s important to find out as much as you can about what will be asked of you and discuss the pros and cons with your family and friends.
Latest News and Research on Ankylosing Spondylitis
According to a paper published in September 2018 in F1000 Research, there have been new advancements in understanding AS in the last three years. Investigators have identified genes and molecules that have demonstrated a role in the development of ankylosing spondylitis, and experts are beginning to investigate the role of the gut in the condition.
Editor’s Picks: Best-Of Roundups
The pain of ankylosing spondylitis isn’t always isolated to your back and spine; many people with more severe AS have foot and heel pain, too. One way to help minimize the discomfort is choosing the right shoes. Select shoes that have more heel padding to decrease pressure across the spine. You may want to consider slip-ons, so you don’t have to bend over to put on or tie your shoes.
RELATED: Best and Worst Shoes for Ankylosing Spondylitis
Reading about how others cope with the challenges of living with various forms of arthritis can be informative and also help you to know you’re not the only one who sometimes struggles.
When the editors at Everyday Health review any product or service — even a blog! — rest assured that we use our Wellness Code to determine what items to feature, based on their potential to improve your wellness.