Ankylosing spondylitis flare up

Knowing the Symptoms of an Ankylosing Spondylitis Flare-Up

Chronic back pain

An ankylosing spondylitis flare-up may cause chronic back pain over time. You may feel dull to burning pain on both sides of the lower back, buttocks, and hips. Chronic pain can last for three months or longer.

Treatment:

  • NSAIDs
  • prescription medications
  • steroid injections
  • physical therapy, such as floor and water exercises

Pain in other areas

Pain can spread to other joints over the course of a few months to years. You may have pain and tenderness in the mid to upper back, the neck, shoulder blades, ribs, thighs, and heels.

Treatment:

  • NSAIDs
  • prescription medications
  • steroid injections
  • physical therapy, such as floor and water exercises

Stiffness

You may also have more stiffness in your body over time. Stiffness may also spread to the upper back, neck, shoulders, and ribcage. Stiffness may be worse in the mornings and get only slightly better during the day. You may also have muscles spasms or twitching.

Treatment:

  • NSAIDs
  • prescription medications
  • muscle relaxer drugs
  • physical therapy
  • floor and water exercises
  • infrared sauna
  • massage therapy

Loss of flexibility

You may lose normal flexibility in some joints. Long-term inflammation in the joints can fuse or join bones together. This makes the joints stiffer, painful, and harder to move. You may have less flexibility in your back and hips.

Treatment:

  • NSAIDs
  • prescription medication
  • muscle relaxer drugs
  • steroid injections
  • back or hip surgery
  • physical therapy

Difficulty breathing

Bones in your rib cage can also fuse or join together. The rib cage is designed to be flexible to help you breathe. If the rib joints become stiffer, it may be harder for your chest and lungs to expand. This may make your chest feel tight.

Treatment:

  • NSAIDs
  • prescription anti-inflammatory drugs
  • steroid injections
  • physical therapy

Difficulty moving

Ankylosing spondylitis can affect even more joints over time. You may have pain and swelling in the hips, knees, ankles, heels, and toes. This can make it difficult to stand, sit, and walk.

Treatment:

  • NSAIDs
  • prescription medication
  • muscle relaxer drugs
  • steroid injections
  • physical therapy
  • knee or foot brace

Stiff fingers

Ankylosing spondylitis flare-ups may also spread to the fingers over time. This can make the finger joints stiff, swollen, and painful. You may have difficulty moving your fingers, typing, and holding things.

Treatment:

  • NSAIDs
  • prescription medication
  • steroid injections
  • physical therapy
  • hand or wrist brace

Eye inflammation

More than one-fourth of people with ankylosing spondylitis have eye inflammation. This condition is called iritis or uveitis. It causes redness, pain, blurry vision, and floaters in one or both eyes. Your eyes may also be sensitive to bright light.

Treatment:

  • steroid eye drops
  • eye drops to dilate the pupils
  • prescription medication

Lung and heart inflammation

Rarely, ankylosing spondylitis flare-ups may affect the heart and lungs over time in some people.

Treatment:

  • NSAIDs
  • prescription medication
  • steroid injections

Ankylosing Spondylitis: Is It a Flare?

When ankylosing spondylitis flares, pain and stiffness in the spine can worsen. Getty Images

Sign up for more FREE Everyday Health newsletters.

Back pain and stiffness are part of life when you have ankylosing spondylitis (AS), but there are times when symptoms get worse or new problems appear.

These are called flares, and your doctor can help you recognize and properly treat them to better manage your AS.

Ankylosing Spondylitis Flares: An Overview

People with AS have chronic inflammation of the sacroiliac joints that connect the spine to the pelvis, according to the Spondylitis Association of America. Back pain is the most common symptom of AS, although it’s not always the first one to appear, says Robert Goldfien, MD, a retired rheumatologist who worked at Kaiser Permanente East Bay in Richmond, California.

Flares are characterized by a worsening of symptoms like pain and stiffness. They’re typically followed by periods of remission, in which pain lessens. “Any form of inflammatory disease like AS has periods where it’s better or worse,” Dr. Goldfien says.

How often flares occur varies from person to person. Some may experience a flare once or twice a year for a week or two, while others may experience flares once a month or so, he says.

Signs and Symptoms of AS Flares

During an AS flare you may experience any or all of the following effects.

More back pain and stiffness Many people with AS have back pain every day, but flares can cause back pain and stiffness to get worse, Goldfien says.

Other painful joints You may also experience tendinitis or joint swelling during a flare, especially in the knees and ankles, says Eric Matteson, MD, the chair of rheumatology and a professor of medicine at the Mayo Clinic in Rochester, Minnesota. Other areas of the body that may become swollen and painful include the hands, feet, heels, ribs, hips, and shoulders. An AS flare can also cause inflammation where the tendons and ligaments meet the bone, which can cause pain in the heel, the top of the shin, and the elbow, adds Bharat Kumar, MD, the associate rheumatology fellowship program director at the University of Iowa in Iowa City.

Eye problems Any time AS gets worse, such as during a flare, there’s the potential to experience a complication of the disease that affects the eyes. Take notice if your eyes are red or sensitive to light. As many as 40 percent of people with spondylitis — an umbrella term for several inflammatory diseases including ankylosing spondylitis — experience inflammation of the eye, called iritis or uveitis, according to the Spondylitis Association of America. Eye inflammation can be painful, and you need to see your rheumatologist or ophthalmologist if you develop this complication of AS, Goldfien says.

Fatigue “Fatigue is a very common symptom with inflammatory disease,” Goldfien notes, and it can get worse during a flare. It takes energy for your body to fight inflammation, and you may lose sleep because of pain. “But if you treat the inflammation, the fatigue should be better, too,” he adds.

Spinal fusion When you’ve experienced severe, frequent flares over the course of the disease, inflammation of the spine can lead to scarring of the tissue and the formation of extra bone, which can cause the spine to fuse into a curved position. But the risk of spinal fusion can be lowered with treatment to control flares and inflammation, Goldfien says.

Diagnosing and Managing AS Flares

Be sure to talk to your doctor in advance about what you should do if your AS symptoms worsen or new symptoms develop.

Goldfien recommends making an appointment with your rheumatologist anytime your symptoms get significantly worse, especially if they begin to affect your quality of life or day-to-day activities. Your rheumatologist can determine whether your symptoms are likely related to a flare or some other cause and help you manage them properly with treatment.

As of now, there are no specific tests to diagnose an AS flare, Dr. Kumar says. Other conditions that may look like an AS flare include joint infections, which can be tested for with a fluid draw from the affected joint.

If your symptoms appear to be those of a flare, the treatment your doctor prescribes depends on the severity of your symptoms, Dr. Matteson says. “Flares can be managed sometimes with nonsteroidal anti-inflammatory drugs (NSAIDs), but may also require a brief course of prednisone or sometimes joint injections.” In the case of a prolonged flare that isn’t going away, your rheumatologist may consider disease-modifying therapies, he says.

Depending on the severity of your flare, you may need to ease up on everyday activities. Temporary rest (for a couple of days) can help prevent injury to an inflamed joint, Kumar says. He adds, “Applying ice to the area can also reduce the swelling and signs of inflammation.”

Advances in treatment can help you not only manage your flares but also manage your AS over the long term. As Goldfien notes, “It’s important for people to know that there are medicines available that can be remarkably effective for this disease.”

Additional reporting by Susan Jara.

When I was officially diagnosed with ankylosing spondylitis (AS) two years ago, I’d been having symptoms for the better part of a decade. The diagnosis came at a time when I finally had health insurance and could book myself in to see a rheumatologist at one of the best hospitals in New York City. I was starting to experience more debilitating pain and fatigue, as if I needed to sleep for 20 hours a day.

Unfortunately, at the time, I was also shouldering the weight of a burdensome nine-to-five job; not only was I commuting up to 3.5 hours per day by bus (sitting in one position for hours at a time), but also the environment was rather inflexible and toxic.

I was always missing my exercise and doctor’s appointments because it was so far from my doctor’s office and the place where I do hydrotherapy. On top of everything, I’d lost two family members back to back and signed a contract to write a book, “Light Magic for Dark Times.” Ironically, the book was about trauma recovery, creativity, regeneration, and healing rituals and practices.

While writing, because of the grief and exhaustion, I was in a seemingly endless flare-up. My hips were always locked, my back hurt at a level nine every day without fail, my brain fog was out of control, I always had costochondritis, and all I did was worry — that I’d miss my bus to work, about my health, and about advocating for myself at work.

Throughout this time, I applied the techniques I was writing about in my book to my own life. I was being mindful with my body and food, taking time to create daily rituals of mindfulness and breathing, stretching at regular intervals, journaling through the dark moments, and creating a sanctuary in my space with objects that empowered and relaxed me. Being mindful about creating time to breathe and slow down deeply helped me.

Long story short, the stress was still absolutely insurmountable. I became depressed, lost, and sleepless. About a month before my book came out, I chose to leave my job. I couldn’t do the commute every day and sacrifice my health and sanity. I had the privilege of falling back on my skill set as a writer and editor, so I became a full-time freelance writer (and now am working on my second book as well as writing for several outlets). I’m happier than I’ve ever been (even if, you know, I’m a little broker than I was).

The lessons I learned were loud and clear:

We cannot push our bodies to the breaking point.

People with AS simply cannot push themselves to limits that they cannot take. At some point, everything breaks and you end up losing yourself in the pain and powerlessness. Balancing AS means knowing when to stop. But when you never get a chance to stop, something has to give. It’s so important to realize that we have to make adjustments to our lives to prevent living at a perpetual breaking point.

We have to change our lives to accommodate our health.

Sometimes we have to do the hard thing — leave or change jobs for something easier, closer, or more flexible. Sometimes we have to have uncomfortable conversations, ask for help, seek resources for support, and say no to opportunities. In the end, what we end up changing could better our lives and make space for even more opportunities and moments of joy — those that fit our lives.

Stress impacts chronic illness and pain levels.

Stress is undeniably and deeply linked to pain. According to a recent study, stress and chronic pain are intrinsically linked — and it also is linked to additional issues such as depression, alcohol abuse, or weight gain. The stress hormone, cortisol, is especially our enemy. According to Healthline, here’s how it works with AS:

“Stressful situations may also unknowingly worsen symptoms of AS. Stress triggers the release of stress hormones like cortisol and adrenaline, which send your body into fight-or-flight mode.

“This increases your blood pressure and heartbeat, and stress hormones stimulate your immune system to release cytokines (a chemical in your body that causes inflammation). Chronic stress can keep your body in an inflammatory state and worsen AS.”

I can’t tell you to quit your job or move to a new house or city, because our situations are all unique and have many complex variables. If you can’t uproot in major ways, please consider finding small ways to implement self-care into your day at daily intervals. You deserve to be happy and at peace.

***

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.

Ankylosing Spondylitis Flares: Exactly What to Do When You Have One

Flares unfortunately come with the territory of managing chronic arthritis like ankylosing spondylitis (AS). AS is an inflammatory disease that primarily affects the spine and sacroiliac joints (which connect the spine to the pelvis); it can also impact other joints such as the ankles, knees, and neck, as well as cause inflammation of the entheses, which are connective tissues where tendons and ligaments attach to bone.

People with AS tend to have chronic lower back, pelvic, and hip pain that comes and goes; during a flare, it can feel significantly more intense and debilitating. Research indicates that flares in AS are very common. One study found that AS patients had about one flare a month; each flare lasted about two weeks. Another study found that 70 percent of AS patients reported a flare in any given week.

“Sometimes I literally wake up and I am in flare,” AS patient Tanya Greatorex told us on Facebook.

AS flares are physically awful, but they can also be just as emotionally taxing. In one study, researchers found that 75 percent of patients reported emotional symptoms, such as depression and anger, during an AS flare.

But with gentle exercise, stress management, listening to your body and the right medication treatment plan, you can get through these periods of flare-up. “You can’t prevent AS once it exists, but you can help to manage it and help prevent the long-term consequences,” says physical therapist Maura Daly Iversen, PT, DPT, SD, MPH, FAPTA , a spokeswoman for the American Physical Therapy Association (APTA). Here’s what to expect from ankylosing spondylitis flares, and how to deal with them.

Types of AS Flares

Based on patient surveys and self-reported experiences of flares, researchers characterize two main types of ankylosing spondylitis flares: localized and generalized.

  • Localized flares are when symptoms affect one primary area, causing pain, immobility, and fatigue.
  • Generalized flares are more severe and may affect multiple parts of the body. In addition to the above symptoms, they also include flu-like illness (fever, sweating); hot, burning joints; muscle spasms; and more sensitivity.

One study on AS flares found those who experienced generalized flares appear to have a more severe and active disease even when not in flare.

Ankylosing Spondylitis Flare Symptoms

Back pain and stiffness

As with many types of inflammatory arthritis, a flare is marked by the increase of normal disease symptoms. “If a patient experiences worsening joint or back pain lasting for more than a few days, then it is likely a flare,” says rheumatologist Joan Appleyard, MD, an assistant professor of medicine in the Division of Immunology, Allergy, and Rheumatology department at the Baylor College of Medicine in Houston. As Greatorex told us, AS pain is often worse first thing in the morning because you haven’t moved around much all night so your joints stiffen up. (Read more about how to manage back pain at night from ankylosing spondylitis here.)

Fatigue

As the AS flare takes its toll, you might feel completely wiped out. “With the fatigue it brings about, I find I nap a couple of times a day,” Greatorex says.

Pain in other joints

Although the pain might be centralized in your lower back, it can also affect other joints during a flare. “With AS you can have enthesitis, or an inflammation of the insertion of the tendon onto the bone, typically at your ankle joint or at your knee joint,” Iversen says. You may also have neck pain or pain in your rib cage — known as costochondritis — as well.

Depression

In one study, 75 percent of patients noted that emotional symptoms such as depression were part of their flare symptoms. Chronic pain can be mentally as well as physically debilitating.

Fever

Fever can be part of AS flares, but if you do have a fever, make sure you call your doctor, as it could be something else. “Systemic symptoms such as fever could signal an underlying infection,” Dr. Appleyard says. “Patients taking biologics are at increased risk of infection and should seek medical attention immediately if they have a fever or other symptoms of infection such as chills, sweats, or weight loss. Never assume that these symptoms are due to a disease flare.”

Causes of AS Flares

In a study on AS flares, patients reported “the main perceived triggers of flare were stress and ‘overdoing it,’” Dr. Appleyard says. “Keep in mind ‘stress’ may mean both physical stress, such as an illness, or emotional stress. Excess fatigue may also trigger a flare.”

Unfortunately, beyond that experts don’t really know what causes AS to flare. “We really truly don’t understand all of the aspects of the inflammatory component,” Iversen says. “Environmental triggers are less clear than in for example, rheumatoid arthritis.”

How AS Flares Are Diagnosed

Doctors rely on individual patients’ experiences to determine if AS is flaring. “You should notify your doctor if your symptoms are out of the ordinary or more severe than your usual disease activity,” Dr. Appleyard says.

However, “there are objective ways to assess disease activity and functional ability in patients with AS, such as the BASDAI and the BASFI .”

These questionnaires measure the major symptoms of AS (fatigue, spinal pain, joint pain or swelling, inflammation of tendons and ligaments, morning stiffness) and the patient’s ability to cope with everyday life. “Rheumatologists use these measurements to help determine disease activity and to assess response to treatment,” Dr. Appleyard says.

In addition, AS “symptoms as a whole are related to increased levels of certain cytokines in the blood,” Dr. Appleyard says. Blood levels of these substances are closely correlated with the activity of the disease, she says.

You can use our ArthritisPower app to track your symptoms and disease activity and share your results with your doctor.

Treatment for Ankylosing Spondylitis Flares

Medications

“NSAIDs such as ibuprofen or naproxen help to address inflammation,” Dr. Appleyard says. “Occasionally steroid medications such as prednisone, which are potent anti-inflammatories, are used for severe flares not responding to more conservative measures.” NSAIDs are considered first-line therapy for people with ankylosing spondylitis; biologic drugs are typically recommended after people don’t get relief from taking NSAIDs.

If you find your AS flares are getting worse, lasting longer, or occurring more frequently, this could indicate you would be a good candidate for biologic medication or perhaps need to try a different kind of biologic medication to help prevent future flares from occurring.

Gentle exercise

“With ankylosing spondylitis, you actually feel better with exercise than you do with rest, so when patients begin to feel a flare coming on it’s really important to keep moving,” Iversen says. “You just need to do it in moderation and you need to really pay attention to the signals from your body.” Try tai chi, modified yoga, the elliptical machine, walking, range-of-motion exercises, even just stretching or deep breathing. Swimming and hydrotherapy are also well-tolerated, she says.

“I try to find a balance between rest and gentle exercise to keep my joints moving, even if all I can manage is some stretching while lying in bed,” Greatorex says. Short bits of exercise spread through the day are all that’s needed, Iversen says.

Heat or cold therapy

“Although there isn’t a lot of empirical data on the impact of ice or heat, many patients like warmth and some people really love cold — there’s no harm in using either heat or ice,” Iversen says. Dr. Appleyard suggests a heating pad or a hot bath or shower; in the morning, the warmth may help loosen up stiff joints.

Transcutaneous electrical nerve stimulation (TENS)

Although this sounds a little scary, Iversen says this device can be prescribed by your PT. “We call it an adjunct therapy that helps to modulate pain,” she says. TENS manages the pain of a flare by blocking the nerve signals to the brain. Although it hasn’t been scientifically proven to be effective, it’s safe as long as you are instructed on how to properly use it.

Tips on Coping with AS Flares

Prepare for a flare

When it comes to AS flares, an ounce of prevention is worth a pound of cure. Although you can’t actually stop a flare from striking, you can make sure to keep up with your exercise plan to better handle them. Strength training, aiming for proper posture, stretching, and endurance exercises for cardiovascular health will put you in better shape for when a flare strikes. Try these daily stretches for ankylosing spondylitis.

“I recommend my patients try to incorporate things that would promote spinal extension and rotation of the spine, and work on hip and knee strength,” Iversen says. You can work these techniques into your daily living. For example, take regular breaks from sitting at your computer, use a standing desk, and stretch out on your stomach propped on your elbows instead of sitting on the floor when playing with your kids, she suggests.

Develop your own pain management techniques

In addition to taking pain medication or steroids as needed, try employing mind/body techniques such as meditation to cope with AS pain. Certain exercises such as tai chi and even deep breathing (which helps promote chest expansion) also have benefits when it comes to the mental component. “Focusing on parts of your body that don’t feel pain and integrating breathing exercises into your meditation with maybe beach sounds or music will really help people to feel more relaxed and reduce the anxiety associated with having discomfort,” Iversen says.

Create time for rest in your routine

Is it important to know your limits and ask for help when you need it during a flare — or even before. “If I have warning and I can feel it coming on for a while beforehand, I slow down and take it easy,” Greatorex says. “Resting is a huge part of a flare for me. My husband takes over the housework, the shopping, driving where necessary.”

Manage stress and mental health

In addition to mind/body strategies for pain management, be sure to address other mental aspects of the disease. “Learn stress reduction techniques, and some patients find support groups helpful,” Dr. Appleyard says. Educating yourself about your disease and talking with your doctor ahead of time about what to do when you have a flare can help take away some of the unknowns.

When in the middle of an AS flare, Greatorex says, “the biggest thing though, as hard as it is, I remind myself that this too shall pass.”

Keep Reading

  • Back Pain at Night: When It’s a Sign of Ankylosing Spondylitis
  • What Is Sacroiliitis, and How Does It Affect Arthritis?
  • How AS Affects Women Differently

First in a series.

When I first started having symptoms of ankylosing spondylitis (AS), I was in my mid-20s which is right in the middle of the age range of when most people receive a diagnosis. How fun! I was doing things that most people that age do. I’m not ashamed to admit that I was partying, staying out late, and eating whatever the hell I wanted. I had a particular penchant for — wait for it — half-and-half lattes.

I didn’t work out very much, either. I was disconnected from my body’s needs and indulged in bad food and alcohol while running on little sleep. I was also attending grad school, working full-time, and in a relationship that was, well, toxic.

My body sensed the crash before I did. Too much stress, work, and fun, too many sleepless nights. I was constantly pushing myself past my limits. It was as if the disease, which is immune-mediated, crept out of hiding when I was at my most vulnerable.

I never thought “burning out” would happen to me. I believed I would always be perfectly healthy. I was a doer, a maker, a creator. I was an engine. In short, I was burnt out, and my first AS symptom was the proof.

One day I woke up with one bright, red, and extremely painful eye. When I say “pain,” it was like hot daggers piercing through my eyeball. I locked myself in my bathroom with the lights off as light worsened the throbbing pain inside my skull.

My sight was blurred. I felt as if I were being punched and burned at the same time. On the brink of collapse, I hobbled into my local optometrist’s office. He said I had contact burn.

While I knew it could not be contact lens burn, I took some drops and left. This was my first experience with uveitis.

At that time, doctors began to represent — ironically — a barrier to my wellness. A short time later when I complained of feeling tired, foggy-brained, and weak, my GP told me to eat better and work out more.

The uveitis became chronic. One eye was frequently flaring and getting worse with each flare. I finally saw an ophthalmologist. He took one look at me (sobbing and about 40 years younger than the other patients in his waiting room) and pulled me into a dark room. He fed magical steroid drops into my eye, and after about an hour, I felt human again. The war raging inside my head had quieted, but my eye was still red. Uveitis, he explained, doesn’t “just happen.” The inflammation was coming from somewhere.

Over the next few years, I was tested for several diseases: sarcoidosis, Lyme disease, and rheumatoid arthritis, to name a few. I had none of them. No one was checking the boxes for ankylosing spondylitis because I experienced none of the most common symptoms: back pain, stiffness, and gastrointestinal issues. I was tired and my eyes flared, but it wasn’t enough. I became a mystery.

Then, one day I was talking to my dad when he mentioned having AS. Although he had daily aches and pains, his symptoms weren’t severe. I researched tests for AS and found information about the HLA-B27 gene. I visited my doctor and demanded that I be tested. The results were positive but inconclusive: The HLA-B27 gene is associated with AS, but you can be HLA-B27 positive and not have AS — and you can have AS and not be HLA-B27 positive.

I was about 27 at this time and I still had no back pain, which is one of the diagnostic criteria for AS.

Next: Part 2—I am hit by symptoms including stiff joints and fatigue.

Have comments or questions? You can always contact me at www.twitter.com/lisamariebasile or on Instagram at www.instagram.com/lisamariebasile.

***

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.

The Anatomy of a Pain Flare-Up

I wake up on Monday morning knowing something isn’t right. You see, after living with chronic illness for most of my life, I’ve come to know my body very well. I’ve been feeling a flare-up of my arthritis coming on for weeks, and somehow, until now, it has stayed at bay. I know from experience that today will be my last day of significant productivity, so I head into work.

The first thing I do when I get to my desk is e-mail my doctor, who is located three hours away. It wasn’t until university that I found a doctor who took the symptoms of both my anxiety and arthritis seriously, so there is little that will stop me from seeing her. Lucky for me, we are able to keep in contact via Ontario’s video telemedicine service, so she is fully up to speed on how I’ve been feeling lately. I tell her a flare-up is coming on, and I’ll likely need documentation for my employer stating the need for at least the week off. I nearly cry when she e-mails me back, saying she knows how frustrated I must be, and suggests I pick up some good food on my way home from work. She reminds me that when there’s not much we can control, it’s helpful to focus on the things we can control, like keeping ourselves well-fed, which at least will help with not making things worse. She sends me a copy of the letter she has written to my employer, and lets me know she will fax it first thing on Tuesday morning.

Knowing I’ll be out of the office for at least the week, I catch up on e-mails, complete some tasks on my to-do list and e-mail my staff to let them know I’ll be out of the office. I go to the bank, and on my way home, I pick up some take-out. After quickly eating, I jump in the shower, as I don’t know when I’ll be able to again. I’m asleep by 10:30 p.m.

I’m up most of the night with pain. I take some painkillers, prop myself up with pillows in an attempt to alleviate some pain, and put something mindless on the TV. My bed becomes my whole world. I can’t lift my hands up to brush or wash my hair, or to change my shirt. I get up to go to the bathroom, and to bring food back into my bed. I order a lot of take-out. I watch the money drain from my bank account and my work e-mails pile up. I worry about what people at work think. I worry about my friends getting frustrated with me disappearing. I worry about money. I worry this flare-up will never end. I worry my chronic illness will cause me to lose my job. I mourn the loss of my young adulthood, the missed nights on the town, the hikes I couldn’t go on, the dates I don’t have the energy to keep. I feel isolated.

I am 26 years old. I am living with chronic, invisible illness. I will not let it define me. I will not let self-pity envelop me. Sometimes my limitations are suffocating and all-encompassing. But I must remember and repeat: this too shall pass, this too shall pass, this too shall pass. All I can do is take things one day at a time. But sometimes, it’s OK to acknowledge and accept the obvious.

This day sucks.

We want to hear your story. Become a Mighty contributor here.

Image via contributor

What Are Your Ankylosing Spondylitis Flares Telling You?

Disease flares are par for the course when you live with the back pain and stiffness of ankylosing spondylitis, but research has shown that frequent, severe flares may indicate a more active underlying condition that could necessitate aggressive treatment.

Ankylosing spondylitis, also called AS, is considered an autoimmune disease, which means your immune system attacks your own joints and tissues, causing lower back pain, stiffness, and inflammation. Like other autoimmune diseases, it’s typical to experience flares followed by periods of remission. Scientists have found that the severity of ankylosing spondylitis flares can vary greatly from person to person.

“A flare usually signifies a change in disease activity,” says David Pisetsky, MD, chief of rheumatology at Duke University Medical Center in Durham, N.C.

AS Flares: What’s Normal?

There’s no objective way to define or measure an AS flare, according to Dr. Pisetsky. Sometimes flares will require little more than some extra non-steroidal anti-inflammatory drugs (NSAIDs). In other cases, a severe flare may indicate that you need a stronger treatment. For example, some people may need more aggressive biologic drugs that target proteins involved in the inflammation cascade if their AS worsens. These drugs have serious side effects and are usually prescribed only for those with severe cases.

“A flare does not mean a change in therapy,” Pisetsky says. “It depends on what kind of therapy a person is currently taking. We ask, ‘Is this flare a sustained change in disease activity that would prompt a change in therapy?’”

Eric L. Matteson, M.D, chairman of the division of rheumatology and a professor of medicine at Mayo Clinic in Rochester, Minn., agrees. “Flares can be mild, and you know they will pass with a little extra NSAIDs or steroids,” Dr. Matteson says. “But if it lasts too long, you may need a change of treatment.”

Most people with AS know when they’re having a flare, Matteson says. But, experience will help you distinguish a true AS flare from something that acts like a flare. For instance, back pain that causes weakness or numbness in a leg or that feels better when you rest is uncharacteristic of an AS flare and could be disc-related, Matteson says.

Frequent and severe flares have been linked to depression. A new study from the French Society of Rheumatology, which involved 200 people with AS, found that nearly two-thirds of the participants with high disease activity showed signs of severe depression. Talk to your doctor and discuss diagnostics and other forms of treatment if you’re feeling depressed.

About the author

Leave a Reply

Your email address will not be published. Required fields are marked *