documenting and measuring your pain ankylosing spondylitis

Documenting and Measuring Your Pain

When you first start having stiffness and pain in your back or joints, you want to take something to ease the pain and go on with your life. Unfortunately, as the pain becomes more and more regular, you realize something more serious may be happening. Eventually you decide you should call the doctor to make an appointment. Before your scheduled appointment you should document and measure your pain. This documentation will help your doctor better understand your pain and symptoms which help make a proper diagnosis.

A thorough and detailed symptom diary will be invaluable to your doctor. It will help your doctor recognize the type of arthritis you may have. There are over 100 types of arthritis (Osteoarthritis, Rheumatoid Arthritis, Ankylosing Spondylitis to name a few). The information you document will help you receive the proper treatment, because what works for one form of arthritis doesn’t necessarily work for the others.

Here are some things you may want to consider when documenting and measuring your pain:

  • Where does the pain begin? Does it start in the joint itself and radiate out? Alternatively, does the pain begin in the muscles surrounding the joint without affecting the joint itself?
  • Do you have only one joint with pain or is more than one joint affected?
  • Is the pain associated with stiffness or is there simply pain?
  • Is the pain worse in the morning and then it “works itself out” as the day progresses?
  • How severe is the pain? Can you give it a rating between 1 and 10, with 10 being the worst pain you have ever experienced?
  • Your doctor will also ask you if your pain interferes with your quality of life and to what degree. Quite likely, your pain intensity will change from day to day.

Tracking your symptoms and pain each day will help tremendously. Not only will you see what activities make your pain worse, you can also see a pattern if foods you eat affect it.

Each of these items will assist your doctor in their diagnosis and choice of treatment:

  • Your activity level – Some types of arthritis will improve when you move. Others will become worse with activity. Therefore, it is important to record what type of activity level you had leading up to the pain.
  • Barometric pressure – No one fully understands how or why weather affects arthritis pain, but recognize the fact it does. Higher barometric pressure (good weather) will cause little to no arthritis pain. On the other hand, low barometric pressure (bad weather) makes arthritis pain considerably worse. Write down what the weather was like leading to your pain and on the day you experienced it.
  • Foods can also make a difference in arthritis pain. Some foods will make it worse, such as red meat, tomatoes and alcohol, and others will make it better, such as salmon, walnuts, vitamin C-rich foods and spices like turmeric and ginger. Pay attention to what foods you have eaten when arthritis flares up.
  • Your weight is the final thing to track. Whereas gaining weight will make arthritis pain worse, losing it can make it feel much better.


Also, continue to track your pain even after you receive your diagnosis and begin treatment. This will help you and your doctor monitor how well the treatment is working.

Download our custom pain tracker document here. Having a pre-created document on which to track your pain will make documenting and measuring your pain easier. When you have an appointment with your doctor, be sure to take the document or journal with you.


Keep Kickin’ AS, Warriors!

Gentle Hugs and Extra Spoons to you all!





Common Causes of Joint Pain

It has been estimated that more than 40 million Americans have joint pain, also called arthralgia, of one kind or another. The most common areas of joint pain are the knees, ankles, wrists, and knuckles, although it can occur at any joint. While there are common causes for joint pain, many people do not know what those causes are.pexels-photo-460550.jpeg

  • Physical injury is one of the most common causes for joint pain. Normally this occurs when a joint is twisted or there is heavy impact on the joint. You may also see joint injury related to sprains or strains. Torn tendons, overstretched ligaments and bone fractures can also affect joints. Whenever joints are dislocated, pain will also be present.
  • Overuse can also be the cause of joint pain. The condition chondromalacia patella, which is the degeneration of cartilage under the kneecap, is something adolescents and young adults may experience.
  • Arthritis is what most people think of when anyone mentions joint pain. There are around 100 different forms of arthritis. The two most common – osteoarthritis and rheumatoid arthritis – affect nearly 20 million people each year. Other forms of arthritis are gout, septic and reactive.
  • Ankylosing Spondylitis, Sarcoidosis, and Lupus are autoimmune diseases that affect ankylosing spondylits spine joint painthe joints. Ankylosing Spondylitis (AS) is a chronic, autoimmune disease and form of arthritis that triggers painful inflammation in the body. Most commonly AS affects the back, buttocks & pelvic region, but symptoms can spread to other joints & organs in the body as the disorder progresses. Lupus causes inflammation in the joints but can also affect the blood cells, kidneys, lungs, heart and skin. Sarcoidosis is the growth of small lumps, called granulomas, which can occur throughout the body. Common areas affected are the lungs and lymph nodes but doctors at the Mayo Clinic believe this condition also causes joint pain in the hands, wrists, elbows and ankles.
  • Chronic illnesses or infectious diseases such as Lyme disease, measles, mumps, rheumatic fever and Epstein-Barr can also affect joints. Rubella (also known as German measles), chickenpox and mononucleosis can also cause joint pain even though that is not the main effect of the disease.
  • Rickets, which is from a lack of vitamin D, is another cause of joint pain. This disease is not as common in the United States as in other parts of the world but can cause joint pain or bone softness.
  • Bursitis and tendinitis are also conditions affecting the joints. Bursitis, caused by swelling of the bursae found between the tendons and skin, can cause severe pain, especially when a person is active. Tendinitis, which is inflammation of the tendons connecting bones and muscles, also causes painful joints. This commonly affects the tendons in the heel, shoulder or wrists.osteoporosis joint pain
  • Osteoporosis is a condition where the bones become porous which can also cause joint pain.
  • Bone cancer, the growth of abnormal cells in the bones, may either originate in the bone itself or spread to them. In either case, the pain associated with bone cancer can be excruciating.

If you experience joint pain, you may not be able to determine the cause of the pain on your own. The fact that there are a number of possible causes for joint pain is why visiting your primary physician is so important when you begin experiencing constant and/or ongoing joint pain. Your physician will be able to determine the cause of your joint pain and prescribe ways for you treat it so your joint pain does not adversely affect your life.

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.





Move It or Lose It Monday – Sit and Be Fit

Move it or lose it monday sit and be fitHappy Move It or Lose It Monday, Warriors! I hope everyone had a pain-free weekend. So, we’re always talking about the need to Move It or Lose It. We know that for our bodies, sitting or laying in one spot for too long can cause stiffness amongst other problems. We need to work to keep our bodies limber and healthy. But, some days, we just can’t. Some days our mobility is too impaired no matter how hard we want to push through. Sometimes the pain or fatigue won’t even let us take a walk around the block.

This is my secret weapon on those days.

The Sit and Be Fit Program.

I’m sure you’ve probably heard about it or seen it on your local PBS station before. I have a backlog of these episodes saved to my DVR for days when I can’t perform my usual fitness activities.Sit and Be Fit

In 1985, registered nurse, MaryAnn Wilson founded Sit and Be Fit.  She got the idea for Sit and Be Fit after observing older adults in her high impact aerobics classes become injured and frustrated. Sit and Be Fit is and exercise program that is designed to address the specific needs of older adults and individuals with limited mobility. The results and reception of the program have been overwhelmingly positive.  In 1987 the first season of Sit and Be Fit was produced and aired on PBS and has been airing nationally ever since.

Sit and Be Fit is a non-profit organization committed to healthy aging advocacy. We believe everyone has the right to feel good and age well. We empower people to improve their lives through safe, effective, media-based health and wellness programming.

The Sit and Be Fit program can be done entirely while sitting down, though some moves do provide the option to sit or stand. The exercises incorporate weight and resistance training, flexibility, light cardio, and some brain and nerve training (like hand eye coordination and pattern memorization).

sit and be fit workout

Founder Michelle kicks AS with Sit and Be Fit

I personally feel good when I do the Sit and Be Fit workouts because I know that even though my body has tried to put limitations on me with pain and fatigue, I still performed some fitness activity. I worked to keep myself active and healthy.

I highly recommend every chronic illness warrior or anyone with limited mobility try out the Sit and Be Fit Program.  Add it to your arsenal of health and fitness activities. Never stop fighting for your health and mobility!

Items you may need for the workouts:

Light Weights

Exercise Ball

Resistance Bands

You can find episodes of the Programs Here. Here. And Here. Or on your local PBS Station.

Learn More about Sit and Be Fit Here.

Are you familiar with the Sit and Be Fit Program? Have you tried it out? Tell us what you think in the comments!

Keep Kickin AS, Warriors!

Gentle Hugs and Extra Spoons to you all!

extra spoons to you all

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.
We are a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to and affiliated sites.

Prevent Stress from Causing a Flare


A couple weeks ago I asked the Kickin’As community to list the things that caused their flares. Overwhelmingly the most common response was stress. It has long been documented that stress can wreak havoc on our bodies and on our health. According to Web MD stress can cause “headaches, high blood pressure, heart problems, diabetes, skin conditions, asthma, depression, and anxiety.” In fact, I fully believe that the fact that I was living life in a state of high stress for an extended period of time is what triggered my Ankylosing Spondylitis Gene (HLA-B27) to become active when no other family members in living memory have been affected by the disease.

So obviously stress is bad for our health and the Kickin’ AS community is in agreement that it is a huge issue and trigger for our illness and sending us into flares. So, what can we do to prevent stress and limit the number of flares that we experience?

Stress Prevention Ideas:


Mediation is a simple, fast way to reduce stress, and it can be done wherever you are. Meditation is a practice that has been around for thousands of years. Meditation can provide you with a tranquil mind and deep state of relaxation. There are many different types of mediation. Three that I practice and recommend for stress reduction and fpr meditation beginners are: Guided Meditation, Mantra Meditation, and Mindfulness Meditation. You can read more about the benefits of meditation and the different varieties here. If you are interested in guided meditation you can find audio meditation recordings on Spotify and Youtube.


Yoga helps to reduce stress by:

  • Relaxing the body
  • Relaxing the mind
  • Helping you to breathe more effectively
  • Developing a connection between your mind and body
  • Helping you to understand how your mind works
  • Releasing emotional energy

Certain positions in yoga are more effective for releasing stress and tension. Find those poses here.

Exercise Regularly

In the words of the famous Elle Woods from Legally Blonde, “Exercise gives you endorphins. Endorphins make you happy. Happy people don’t kill their husbands. They just don’t.”

The endorphins created by exercise and physical activity are chemicals produced within the brain that act as natural painkillers. They also improve the ability to sleep, which in turn reduces stress. Even just five minutes of aerobic activity can begin to exhibit anti-anxiety effects within the body.

So, as we say on Mondays, Move It or Lose It! Perform some activity every day to help prevent and reduce stress.

Get Organized

Being unorganized is a huge stressor. Running late, never knowing where you are


supposed to be at what time, unable to find what you are looking for in your house – it all contributes to stress.

Some tips to get organized:

  • Get a planner or use your phone calendar to track all of your appointments
  • Plan your day the night before. Review all of your appointments, meetings, etc so you know what you need to do and where you need to be.
  • Deal with paperwork and mail right away. Don’t let it pile up.
  • Clear out clutter in your house, at your office, in your car, and in your desk. Throw away or donate what you no longer need or use.
  • Prioritize your tasks and in which they need to be done.

Read your Holy Book of Choice

For me personally, this has become an every day activity. If you are religious spend a few minutes every day reading your Holy Book of choice, or in prayer, or practicing your religion in some way. You will achieve a sense of peace while spending time with your god(s).

Take Time for Self-Care

Take time at least once every month to practice self-care, whatever this may mean to you.

Self-Care Activity Suggestions:

You can find more suggestions for self-care activities here.


Start journaling to purge whatever stress you may be carrying with you. Journaling is a great creative outlet that allows you to focus on yourself and your inner-most thoughts. Use your journal in whatever way works best for you. Write about your day, write poems, write song lyrics, collect motivational quotes or Bible verses. Draw and doodle. Write diagonal across the page instead of following the lines. A journal is meant for you. Use it how you want.

Learn to Say Noimg_9250

Stop overextending yourself. You do not have to commit to every activity or RSVP to every event. You do not have to agree to help your coworker with every project or volunteer to take on every activity that no one else wanted to be in charge of. Learn to say no. Only say yes when you know you can handle something and you WANT to attend or take part in the activity.

See a professional therapist or counselor

Sometimes stress gets to the point that we are no longer able to handle it on our own. Seek help from a professional therapist or counselor. Having an unbiased professional to talk to and help you sort through your life is invaluable when stress has begun to run your life. Ask for help if you need it.

Perform Positive Affirmations

Retrain your brain to see the world in a more positive light with positive affirmations. Using positive affirmations will create a more positive outlook on life and provide you with a more positive image of yourself. Positive people live longer and happier lives than people who have a negative view of the world.

Check out this list of positive affirmations.

Listen to relaxing sounds and music

If you’re feeling stressed put on some music! But not just any music. Have you ever had a massage and listened to the soothing music that is playing in the background? Listen to those soothing sounds anytime, anywhere when you feel stress start to take over. Nature sounds, meditation music, spa music, relaxing piano music are all great options. You can find playlists and stations for relaxation on just about any listening app. Spotify, Pandora, Youtube, Apple Music, or Amazon Music.

Pet your animal companion

Michelle and Cooper

Author and AS Warrior Michelle with her dog Cooper

Playing with or petting an animal can increase levels of the stress-reducing hormone oxytocin and decrease production of the stress hormone cortisol.

Check out these 8 ways that your pet can help reduce stress.

Do you have more suggestions for preventing, relieving, or reducing stress? Tell us in the comments!

Keep Kickin’ AS, Warriors!

Extra Spoons to You All!


This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.
We are a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to and affiliated sites.

Move It or Lose It Monday: The Non-Workout

img_8985Welcome to Move It or Lose It Monday, Warriors! Oftentimes we want to stay active, but our bodies just won’t allow us to workout because we are in a flare or our fatigue is bad. But just because we can’t workout, doesn’t mean we can’t still be active. And on those days, it’s even more important for us to get up and move around. Or maybe you just really hate the idea of “official exercise,” but know the importance of staying active.

So here is a list of activities to stay active when you can’t workout.Housecleaning-on-cleaning-free-stock-image-and-clip-art

  1. Do housework. Performing household chores keeps you active. Gather the laundry  and load it into the wash. Sweep, dust, mop, vacuum, clean the bathrooms and the kitchen. All tasks that require movement.
  2. Garden and do yard work. Gardening is a task that is surprisingly active. Pull weeds, turn dirt and mulch, dig out holes for your plants. Get out your old push mower and run it over your lawn. Rake leaves. You will be working up a sweat in no time.
  3. Take your dogs for a walk or play a game of fetch. Dogs are great companions for staying active.
  4. Play with your children outside. Kids keep you on your toes all day long. Take them outside to run around and get in on the fun. Go to a park to swing and climb on the jungle gym. Join in on their games of tag. Hula-hoop along beside them. The activity will be good for you and for them.
  5. Play an active game on Wii or Kinect. If the weather outside isn’t conducive to outside play time, break out the video games. Sports games and dance games keep you moving.
  6. Wash your car, and I don’t mean to run it through the automated wash.
  7. Play a sport. Break out the old sports gear. Shoot some hoops. Play catch. Kick around the old soccer or kickball.
  8. Go dancing even if it is just around your house. Dancing to your favorite music is Dancing-dance-clipart-4-imagegood for the body and the soul.
  9. Take Tai Chi. Tai Chi is one of the most recommended activities for people with chronic illness and chronic pain. You can often find classes at activity centers in your town. Or get a Tai Chi DVD to follow along at home.
  10. Go for a swim. Swim some laps. Do water aerobics. Play water sports. Splash around with your kiddos. Swimming is a great activity for chronic conditions because it is very low impact.
  11. Walk to places instead of driving. Add more activity into your day by simply walking to your destination instead of driving. Walk the kids to school in the morning. Walk to work. Walk to the grocery store. Get those steps! Track your steps with a Fitness Tracker.
  12. Take the stairs instead of the elevator. Simple and easy way to gain a little more activity in your day.
  13. Stretch or do Yoga. Stretching or doing yoga keeps you loose and limber. Very important for AS Warriors!

Reminder: I am not a doctor and am not providing medical or fitness advice. I am simply sharing my experiences as an AS Warrior who is trying to live an active life, while encouraging others to stay active as well. Always consult your doctor before beginning an exercise regimen.

Do you have other ideas to stay active without “working out”? Tell us in the comments.

Keep Kickin’ AS!

Gentle hugs and Extra Spoons to all!


We are a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to and affiliated sites.

Move It or Lose It Monday – Get Those Steps

move it or lose it monday get those steps

Welcome to Move It or Lose It Monday, AS Warriors! This is a new blog series where we will be encouraging you to be active with Ankylosing Spondylitis. We will be posting work out reviews, workout motivation, and tips and tricks to become more active.

First, we need to post an advisory that I, the author, am not a doctor and this website is not run by healthcare officials. Therefore, we at are not providing medical advice or care, nor are we providing fitness advice. We are simply sharing our experiences as AS Warriors trying to live active lives while encouraging others to do the same. Always consult your doctor before beginning an exercise regimen.

Today we are starting out with the most basic fitness movement. Walking. It is recommended by the American Heart Association that adults get a minimum of 10,000 steps per day to maintain good health. If you work a desk job or are on disability 10,000 steps can be surprisingly hard to achieve unless you make achieving those steps a priority. Get those steps!

Here are some things you can do to reach your 10,00 step goal:

  • Take your dog for a walk.
  • Park further away from your destination.
  • Walk around the track at a nearby school or park.
  • Play outside with your with ankylosing spondylitis
  • Walk on a treadmill.
  • Get moving on an elliptical.
  • Go for a stroll around the neighborhood with your significant other.
  • Go hiking.
  • Walk around the mall.
  • Take the stairs instead of the elevator.
  • If the weather is bad outside walk laps around the inside of your home instead of walking outside.
  • March in place while watching your favorite show or movie.
  • Walk to your destination instead of driving.
  • Go dancing.
  • Take a short walk during your lunch break.

These are just a few ways that you can get more steps in during the day to help you stay active with Ankylosing Spondylitis. I highly recommend investing in some form of fitness tracker, such as a FitBit.

The more we move the longer we will be able to move. Staying active helps keep off or take off weight that can negatively affect our joints and spine and it keeps us fit and flexible.

Post your workouts on Instagram and tag us with #activewithankylosingspondylitis and #kickinas to join the movement to Kick AS!

Keep Kickin’ AS, Warriors! Go get those steps!

Extra Spoons to you all!

extra spoons to you all

We are a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to and affiliated sites.

It’s Okay Not to Be Strong Every Day

img_8253As a woman, and especially as a woman who battles a chronic illness, I have this overwhelming need to appear strong and appear like I have it together every day. I know that many of you can relate to this. A need to be strong for the people around you and a need to project this air of confidence, capability, and good health.

If you’re like me, you want to make sure that you make everyone else feel good. You check on them. You want everyone else to be okay. You don’t want your illness to affect the people around you, so you put on a charade. You say you feel fine even when you don’t. You go out and participate in activities even when you don’t really feel up to you it. You take care of everyone and everything even though you can barely take care of yourself and are barely holding everything together.

But we don’t have to be strong all the time. We don’t have to do everything ourselves. It is okay to not be okay. It is okay to not be strong all the time. It is okay to be real with the people in your life and tell them that it’s not a good day if you’re feeling bad. Chronic illness is not something that we can just pretend doesn’t affect our lives and we shouldn’t have to.

Ask for help. Listen to your body. Be honest about how you are feeling. Rest when you need to. Take care of yourself. Put yourself first once in a while. Rely on the people in your life who love you and are willing to be there for you.

Remember it is okay not to be okay. It is okay to not be strong every single day. Remember this the next time you’re about to tell someone you are fine when you are really in pain.

Keep Kickin’ AS!

Gentle Hugs and Extra Spoons to You All.


How to Survive the Holidays with a Chronic Illness

Holidays are stressful enough without having a chronic illness. And just getting through a regular day with a chronic illness is difficult enough without the added stressors of the holidays. So here is your Holidays with a Chronic Illness Survival Guide.


Dress for Comfort

Sure there will be family pictures and selfies and surprise snapshots, but dress for your comfort. If you know that tags, tight jeans, wool, turtlenecks, etc. cause you irritation don’t wear them. Opt for something that is stylish and comfortable like leggings and a cute flowy top or these comfortable and stylish options for men. If you know that you are cold or warm natured or that your mom tends to keep her house an uncomfortable 80 degrees, dress accordingly.

Be Prepared to Fight the Cold and Germs

tissues and hand sanitizerIt may be the holiday season, but it is also cold and flu season. Bring along pocket sized hand sanitizer and tissues. Also, fight the cold weather and any drafty houses with scarves, gloves, and layered clothing. Cold air, drafts, and germs are a chronic illness warrior’s mortal enemy.

to do list clip artPlan Ahead

Planning ahead can take a lot of the stress out of the craziness of the holidays. That extra stress can undoubtedly lead to a flare. Have a plan and a to-do list to keep you organized and on schedule. Invest in a planner!

Rest Up

And while you are planning, schedule in some down time to allow yourself to rest. Down time will actually allow you to slow down and enjoy the time with your family and friends so much more. If you know you have a big event that will use up a bunch of spoons, try to rest more the day before.

Ask for Help

It’s common to have trouble asking for help, but it is a necessity for a Spoonie to survive the holidays.

If you find yourself hosting the holiday festivities go potluck and ask everyone to bring a dish or two.

Ask for help cleaning up afterwards.

Enlist a friend or two to help with wrapping gifts. Put on some holiday movies or music, pop open your favorite bottle of wine (or whatever beverage doesn’t worsen your symptoms) and make a day of it.

Pace Yourself and Be Realistic

During the holidays we want to say YES! We want to be involved in all the fun activities, How to Survive the Holidays with a Chronic Illness pace yourselfbut we need to be realistic and pace ourselves. If your mailbox is flooded with invites, don’t say yes to all of them if you know that it will wear you out and send you into a flare. Don’t sign up for every Holiday fun run, every Caroling excursion, don’t volunteer to sew all of the costumes for the Christmas play, and volunteer to go on the hike to cut down the Christmas tree. Limit and pace yourself to ensure that you can enjoy the events that are the most important to you.

Shop Online

Avoid the crowds and long lines that can do a number on our bodies and emotions by shopping for gifts online. Save yourself the physical pain and maintain your sanity.

Bring Your Own Food

How to Survive the Holidays with a Chronic Illness Bring Your Own FoodIf you’re going to someone else’s house to stay for the holidays or holiday meals bring along your own food if you have special dietary restrictions. It will keep you healthy and you will avoid a flare up if you maintain your diet. Let the host no ahead of time that because of your health needs you will bring your own meal. Your host will undoubtedly understand and appreciate the heads up. And they will be grateful that you didn’t expect them to cater to your specific needs.

Listen to Your Body and Don’t Feel Guilty

As always, the most important survival tip is to listen to your body. Take time to care for yourself and your body’s needs. Rest when you need to rest. Eat the foods that make your body happy. Don’t feel guilty if you can’t stay up late chatting with family. Don’t feel guilty if you need to sneak off for a quick nap before you holiday meal. Taking care of yourself is always priority number one, even during the holiday mayhem!

Do you have more tips to help us all survive the holidays with our chronic illnesses? Leave your tips in the comments.

Happy Holidays, Warriors!

Keep Kickin’ AS!

Extra Spoons to You All!spoons-19.png

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.
We are a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to and affiliated sites.

Possible Complications of Ankylosing Spondylitis

Ankylosing Spondylitis (AS)is a chronic, autoimmune type of arthritis that triggers ankylosing spondylitis backpainful inflammation in the body. Most commonly, AS affects the back, buttocks, and pelvic region, but symptoms can spread to other joints and organs within the body as the disorder progresses. Also note, that this disorder affects every individual differently and in some cases the symptoms can begin in the peripheral joints (joints not located in the spine such as knees, ankles, wrists, fingers, etc). Uncontrolled inflammation can contribute to other complications throughout the body ranging from mild to severe and disabling.

Possible complications are:

  1. Fatigue – Fatigue and tiredness is one of the most common symptoms of Ankylosing Spondylitis. The cause of the fatigue is the higher levels of inflammation within the body and the body’s constant fight to try to keep the inflammation under control. Fatigue is often labelled patients as the most debilitating of their symptoms. Some have described the Fatigue to be similar to the fatigue that accompanies the flu. However, unlike the Flu, you do not recover from AS in just one or two weeks. TNF-inhibitors prescribed by rheumatologists as well as regular exercise can help to lighten the load of the immune system, thereby relieving the fatigue and improving the patient’s quality of life.
  2. Reduced flexibility – as with most kinds of arthritis, AS patients can experience reduced flexibility in some or all of their affected joints. The damage to joints caused by inflammation can restrict the movement of muscles and joints as the disease progresses. With AS patients, a Yoga-Poses-to-Help-Ankylosing-Spondylitis-03-722x406particular concern is that this will happen within the spine and that the spinal vertebrae will begin to fuse in the lower back, causing a permanent slumped forward position. In some cases, this can lead to permanent disability. It is important for AS patients to maintain an active life to promote and encourage their joints’ continued flexibility. Consult your physicians for approved exercises and stretches to maintain and increase flexibility safely.
  3. Eye Problems – It is important for AS patients to maintain regular check-ups with ophthalmologists as inflammation can spread to the eyes. Inflammation of the eye can be a symptom of Uveitis or Iritis, depending on the exact location of the inflammation within the eye. Let your doctors know if you experience eye redness, light sensitivity, eye pain, blurred vision, see spots, or experience unusual puffiness around the eyes. Ophthalmologists are medical doctors and you can use your regular medical insurance for their visits. Ophthalmologists will do thorough examinations of your eyes to ensure that you maintain proper eye health and they can monitor the affects that Ankylosing Spondylitis may have upon your eye health and vision.
  4. Social and Employment Problems – Ankylosing Spondylitis can affect a person’s social and public life as it progresses. AS can limit the type of work a person can do, especially when it comes to physical labor. Some AS patients may be able to work a full 40-hour week, some can only tolerate a few hours a day, and others may not be able to work at all, depending on how advanced their AS is and the jobs that they are expected to perform. Depending upon the AS patient’s limitations, they may eventually need to file for disability. AS patients should learn and focus proper sitting and standing posture, and take frequent stretching breaks if they spend a large portion of their time seated at a desk to prevent any further damage. Taking breaks to move around and stretch will prevent joints from locking up or becoming stiff. This also helps to keep the blood flowing and can assist with fatigue. It can grow increasingly difficult for people with AS to get out and socialize as their energy gets depleted from daily tasks. Chronic pain can be isolating as people experiencing the pain are less likely to visit friends. This isolation can lead to depression. Joining support groups, socializing online, and working to maintain friendships and relationships can feel draining, but it is important to do so in order to maintain your mental and emotional health.
  5. Gastrointestinal Disorders – AS inflammation can spread to the intestinal tract causing stomach pain and digestive issues. Symptoms of inflammation within the intestinal tract include: stomach pain, stomach ulcers, diarrhea, constipation, and problems digesting. In severe cases, Ankylosing Spondylitis patients can also develop Irritable Bowel Syndrome, Crohn’s Disease, or Ulcerative Colitis. It is important to discuss any of these symptoms with your doctor. They may provide you with dietary advice to limit the symptoms of these disorders.
  6. Osteoporosis – Osteoporosis is a medical condition in which the bones become brittle and fragile from loss of tissue. The bone becomes less dense than normal osteoporosis_s1_bone_densitywhich leads to the bones being weak and prone to breaks and fractures. When this disease develops in the spines of Ankylosing Spondylitis patients (caused by the severe inflammation within their body) it increases their risk for spinal injury. AS patients frequently develop Osteoporosis, even in the early stages of the disorder.
  7. Increased risk of heart disease – Cardiovascular problems that Ankylosing Spondylitis may contribute to include:
    1. Aoritis- Aortitis is inflammation of the aorta, and it is representative of a cluster of large-vessel diseases that have various or unknown etiologies. While inflammation can occur in response to any injury, including trauma, the most common known causes are infections or connective tissue disorders. Inflammation of the aorta can cause aortic dilation, resulting in aortic insufficiency. Also, it can cause fibrous thickening and ostial stenosis of major branches, resulting in reduced or absent pulses, low blood pressure in the arms, possibly with central hypertension due to renal artery stenosis.
    2. Aortic Valve Disease – Aortic valve disease is a condition in which the valve between the main pumping chamber of your heart (left ventricle) and the main artery to your body (aorta) doesn’t work properly. Aortic valve disease may be a condition present at birth (congenital heart disease), or it may result from other causes.
    3. Conduction problems – Your heart’s rhythm is its pace or beat. Conduction is the progression of electrical impulses through the heart which cause the heart to beat. You can have a conduction disorder without having an arrhythmia, but some arrhythmias arise from conduction disorders.
    4. Ischemic Heart Disease – Ischemic heart disease is also known as coronary artery disease or “hardening of the arteries.” Cholesterol plaque can build up in the arteries of the heart and cause “ischemia,” which means the heart is not getting enough blood flow and oxygen. If the plaque blocks an artery, a heart attack can result.heart
    5. Cardiomyopathy – Cardiomyopathy is a condition where the heart muscle is abnormal. The main types of cardiomyopathy include dilated, hypertrophic and restrictive cardiomyopathy. Cardiomyopathy makes it harder for your heart to pump and deliver blood to the rest of your body. Cardiomyopathy can lead to heart failure.

It is important to take preventative measures to reduce the risk of cardiovascular problems. Though this applies to every individual, not just AS patients. Regular exercise and a healthy diet should be included as part of the treatment plan for Ankylosing Spondylitis. It also helps to avoid tobacco use and maintain a healthy weight.

  1. Amyloidosis – Amyloidosis is a rare disease that occurs when a substance called amyloid builds up in your organs. Amyloid is an abnormal protein that is usually produced in your bone marrow and can be deposited in any tissue or organ. Amyloidosis can cause symptoms such as weight loss, water retention, tiredness, and in some cases tingling of the hands and feet.
  2. Cauda equine syndrome – This extremely rare condition is a bony overgrowth caused by inflammation. It leads to pressure and swelling at the end of the spinal cord. The swelling can compact the nerves in the lower part of the back. If left untreated Cauda Equine Syndrome can lead to paralysis.

There are links provided within this blogpost to provide more information for some of these listed complications. Please consult your health practitioners with any questions or concerns you may have.  It is important to be your own health advocate when you have a chronic illness. You know your own body better than anyone and you know when there is something that is off, wrong, or not working the way it should.

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.



  • an autoimmune disease.
  • not curable.
  • genetic.
  • more common than multiple sclerosis, cystic fibrosis, and Lou Gehrig’s disease combined.
  • more than just a bad back.the spoon theory
  • not just a man’s disease.
  • a heartbreaking diagnosis.
  • referring to my energy as spoons.
  • a daily battle against my own body.
  • worrying about pushing my body too hard or too little.
  • pretending not to be in pain.
  • a pain in the butt.
  • weekly injections.
  • monthly treatments.
  • having a whole pharmacy of medications in your purse.
  • getting exhausted and out of breath after walking from one room to another.
  • feeling pain in places on your body you didn’t even know could feel pain.
  • sleepless nights.Ankylosing Spondylitis Pre-Existing condition
  • being given unsolicited health advice by people who mean well but have never even heard of AS.
  • a pre-existing condition.
  • a chronic illness without a cure.
  • taking a bath because you don’t have enough energy to stand for a shower.
  • feeling like a burden.
  • canceling plans or not making them in the first place because of your ever-changing health.
  • unpredictable flares.
  • a lifetime of doctors’ appointments and treatments.
  • feeling like you got hit by a truck, but pretending like you are okay.
  • being told “You don’t look sick!”
  • being told “It’s all in your head.”
  • hearing people say, “My back hurts too.”
  • hoping you don’t pass the gene on to your children.
  • missing out on social events.
  • never knowing if your pain is from moving too much or too little.
  • getting glared at for parking in the handicap spot because you don’t look handicapped.
  • a pain in the neck, and back, and butt, and ankles, and knees, and ears, and hands, etc, etc, etc…
This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.