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.
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ANKYLOSING SPONDYLITIS IS…

ANKYLOSING SPONDYLITIS IS…

  • 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…
  • NOT GOING TO DEFINE ME!IMG_3510
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.

Guilt, Shame, Regret, and Hate

guilt_carry-manGuilt is the mental/emotional symptom that is never addressed within the chronic illness community. We talk about it amongst ourselves in secret in our private, closed online communities, but very rarely ever address it with the outside world — our families and friends.

We feel guilty for being sick. For being a burden. For not being able to accomplish tasks that people want us to do. We feel guilt for canceling plans. For not being able to support ourselves. For not being able to support our families. Guilt for being a shell of our pre-illness selves. We feel guilt for being unreliable, undependable. We feel guilt for not being strong enough, energetic enough… Just not enough. I’ve seen women in these support groups call themselves “a low value person.” We feel guilty for not being the spouse or parent that our families deserve. We worry that they resent us and regret the vows of “in sickness and in health.”

We wonder if we could be pushing even harder, doing even more, ignoring the pain, pushing through the fatigue, even though we already feel like we are at the end of our ropes.

We avoid dating if we are single because we don’t want to burden a new person with our disease. We avoid having children because we don’t want to pass the gene on to future offspring.

We regret the friendships that we have lost because we are no longer as active and social as we once were. We regret the fact that we watch our children go through the same things as us when they are diagnosed with our illness too.experience-emotions-2

We feel ashamed of the amount of money that is spent on our health insurance, doctor’s visits, ER visits, medications, and treatments when we know that money could have been used on so many other things.

We hate that we have to ask for help on such simple things as opening a jar, tying our shoes, washing our hair. We hate that family gatherings have to take our needs into consideration. “Can’t go to the amusement park, because Jane can’t ride the rides anymore.” “Can’t go to that State Park for a hike, because Joe can’t walk that far.”

We hate that it is so hard for people to understand our illnesses. We hate that we barely understand our illnesses and what is going on with our bodies. We hate that our doctors don’t have answers or cures. We hate that we can’t predict what is going to happen. Will we have a good day or a bad day? Can we RSVP to that event? How are we going to feel on that day?

What I want people to take away from this blog, other than just the “me too… someone else gets how I feel…” I want our families and friends to realize that it isn’t just the physical symptoms of our disease that we battle every day. There are so many mental and emotional things going on inside of us. We hate feeling that we are letting you down. We hate feeling like we are a burden that you have to carry through life and take care of us. And these thoughts and feelings are just the tip of the iceberg. I didn’t even touch on the loneliness and depression that can accompany chronic illness. I’ll save that for another day.

Be gentle on us. Be forgiving and understanding. But be our cheerleaders too. Let us know that we are still loved. That we are still hug.jpgcapable and that you still believe in us.

And chronic illness warriors, be gentle on yourselves. You are fighting a battle that only you understand and only you can fight.

Fight on and Keep Kickin’ AS!

XoXo  Michelleblue-spoons-clip-art

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.

Fatigue

fatigueFatigue: extreme tiredness, typically resulting from mental or physical exertion or illness.

I haven’t been blogging or keeping up with this website, my day job, working out, or my novel writing lately. My fatigue has been debilitating. It makes it very difficult to concentrate or exert any energy or even feel motivated to do anything. I even got out of breath just trying to get dressed a few days ago.

Unfortunately fatigue is a symptom of Ankylosing Spondylitis and most chronic illnesses that people just don’t understand. People within the healthy community say things like, “Yeah I am tired today too,” or “It must be nice to take a nap.” What people who do not suffer from fatigue don’t understand is that this isn’t just being tired from not getting enough sleep the night before, or having physically exerted oneself. This is all day, everyasleep in spaghetti day, feeling like you have the flu, can barely even keep your eyes open for more than thirty minutes at a time, can’t stand up straight, might fall asleep at the dinner table face first into your spaghetti plate kind of tired.

I had my fatigue mostly under control until I was off my Enbrel back at the end of May. When that happened everything just went downhill. Of course, I am back on my Enbrel now, so everyone expects that I will be back to full power, but it takes time to build back up in your system, and sometimes even if you were full of energy the day before you won’t have any the next day. This of course goes back to the Spoon Theory.

The reason that fatigue is so prevalent amongst people with autoimmune disorders is because our bodies are literally attacking themselves. Our immune system has been tripped into thinking that there are bad foreign substances within our bodies that they must defend us against. Just like when you are sick, but this is when we are healthy. The immune system is attacking healthy cells and actually making us ill.

Fatigue is not in our heads. We are not being lazy. We don’t just need to get more sleep at night or take a nap to be refreshed. We wish we could wake up after a full night’s rest without being tired. Our bodies just have other ideas. Until there is a cure for whatever chronic illness we suffer, we will still have days, weeks, and months where we just can’t find the energy to accomplish what we desire to do.

Be patient with us and trust that we wish we weren’t tired all the time.

Gentle hugs and extra spoons to all my readers… XoXo

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