How Do You Say It?
Ankylosing Spondylitis is pronounced many different ways which is why most people just call it A.S.
I was told to prounounce it as ankle-low-sing spon-da-lie-tiss. It really is an atrocious sounding word which is why it makes me think of the Mary Poppins song, Ankylosing Spondylitis-expialidocious. I go around the house singing this and it lifts my spirits right away.
When I was diagnosed with A.S. I turned to the internet to find information to help me understand what I was dealing with. I spent multiple hours searching sites that really helped me learn and helped me connect with other people who have this disease. What I wanted was some ideas on how to make the regular daily activities easier and more managable. There are a lot of sites out there that want to sell you things to make you better. I am not selling anything. Just sharing my story to help encourage others to live a Victorious Life despite physical challenges.
Here is an article in my local paper, featuring me, discussing the shortage of rheumatologists. Coming Up Short, The Deseret News (2003).And this article features me, discussing the fact that young people get arthritis too. Arthritis Can Strike Young Too, The Deseret News (2004).
A.S. stands for Ankylosing Spondylitis. Ankylosing meaning stiff or rigid. Spondyl refers to the spine, and itis means inflammation.
It is a chronic, inflammatory, auto-immune disease affecting the spine and other joints such as the hips, knees and shoulders. It is also a rare type of arthritis (similar to rheumatoid) that most people have never heard about.
Who does it affect?
I seldom tell people it is a form of arthritis because they automatically think you have to be an older person to have it.
A.S. usually starts when a person is in their young twenties, often in their sciatic area. Usaually before they are 35. Mine started when I was 19.
After reading on the Net, I have realized many people have had it since their early twenties but are not properly diagnosed until they have had it 20-40 years. Doctors are not educated enough to relate the common symptoms to A.S. and often mis-diagnose it as slipped disc, sciatica problems, or common back pain.
How is it Diagnosed?
It depends on your health history a lot and what other problems you might have. There is not a specific blood test that will tell you you have Ankylosing Spondylitis. It is a combination of things that must be considered before a diagnosis can be made.
1. The first thing to check is to have an arthritis blood panel. They can check if you might have another arthritis or can rule the other arthritis types out.
2. At the same time they should test for the HLA-B27 gene. This gene does not mean you have the disease. It only means you are more likely to have the disease. This gene is hereditary. The parent you got the gene from does not necessarily have the disease either. My dad and little sister have the gene but neither of them have the disease.
Most people who have the gene never get A.S., however most people who have A.S. have the gene.
3. They will often test your S.E.D. rate wich tells them how much inflammation is in the blood stream. If the rate is higher than normal it does not mean you have the disease, it just tells the doctor you have a high amount of inflammation which is often related to A.S. being a chronic inflammatory disease.
4. The Dr. should take x-rays of the area in pain. Many times this is the sacroiliac joints surrounding your tail bone and your lower back. Rheumatologist should study your x-rays to determine any changes in the tissue surrounding your joints caused by inflamation. Many times these tissue changes will not appear in the early stages of the disease. If the disease has progressed some fusion can be noticed through careful examination.
What Causes A.S.?
The cause is a debated issue. Many say there is no known reason people get it other than the fact they carry the HLA-B27 gene. Through research it is shown that there is usually something that happens to trigger the disease to start.
The two most common causes are either from an injury or a major infection such as food poisoning. These are such different reasons for the disease to start but both are believed to be true. The cause of the onset is different for every person. I had a major case of food poisoning about six months before I had symptoms. But I also was doing construction for two of those six months. For that reason I can not tell if my onset came from the infection or an injury from working.
What are the Symptoms?
Chronic pain and stiffness in the lower back and hip area.
Flare ups of pain usually occur after periods of inactivity, early in the morning, or after a long day of sitting at work.
More joints become affected as the disease progresses. Shoulders, knees, ankles, rib cage and the entire spine can be affected. Fusing between the joints can happen causing less mobility. The chest bone and rib cages could fuse causing a loss of normal chest expansion making it hard to breath.
For this reason people with A.S. are told not to smoke.
Many times your sciatic area acts up with intense pain. (This is the area deep in your bum, near your tailbone.) Usually one side is affected more than the other. The inflammation may seem like a deep burning sensation. Sometimes I get relief by applying more pressure to the pressure point in that area, or I apply the ice pack for 10 minutes to numb it.
Iritis, an eye infection occurs in 1/4 of A.S. patients. Your eye gets red and puffy from inflammation. It is usually painful to look at bright lights. If this happens go to the doctor, or eye doctor as soon as you can. Iritis can cause permanent eye damage if not treated. My doctor gave me cotizone drops. They cleared it up in a couple of days.
Is there a Cure?
Currently there is NOT a cure for A.S. The Spondylitis Association of America is conducting a family study to learn more about the disease to help find the cause and cure.
What things help?
HOT SHOWERS ~ to warm your muscles and joints anytime of the day
YOGA ~ I have a video for daily stretching and days when I can't go outside to exercise
HOT TUB ~ Before & After I do water aerobics
FOAM ROLL ~ Ask your physical therapist if you can take one home. It strengthens your back, stomach, and legs and gives you a nice massage.
MASSAGE THERAPY ~ Make sure your therapist understands A.S. and what pressure points to avoid if you are having a flare up.
WEIGHTS ~ stregnthen your muscles so your joints won't have to work as hard.
N.S.A.I.D.s ~ I hate to take medicine more than anyone but at least now I can move. Before I started taking anti-inflamatories/pain killers I couldn't move. Now I do have days where I don't even think about having A.S.
POSTURE ~ Stay straight so your bones fuse straight as the disease progresses.
Women with A.S.
Much of the research shows men have A.S. much more than women.
All I can say about that is don't let the doctors try to tell you you DON'T have it just because you're a woman.
I think they need to do new research because it sure seems like there are a lot of women I have heard from that have A.S.
Their stories are all over the internet, just like mine.
There are some differences in the severity of the disease between the two sexes. Men usually do have more severe symptoms, but women have a lot to deal with too. The issue of having children is one many women ask. Sure, many women with A.S. have had babies, and healthy babies at that. The issue is with taking your medication during pregnancy to have pain relief. Some kinds you can take for a while during pregnancy but you should not be taking any while breastfeeding. This forces women to make a decision to live with pain for a while without having that quick relief. Some women also have to have c-sections because their hips have fused and could brake during delivery. You have a 50% chance of passing the HLA-B27 gene to each of your children but it is not necessary to have them tested because it is not an indicator they will actually have the disease. It is good to continue exercising during pregnancy to keep mobile and relieve stiffness. Bed rest can make your symptoms worse.
Doctor Education
Make sure you consult your doctor before deciding to have children, or making changes in your treatment or medication. But then again I have had to educate most of my doctors because they know so little. It is up to us to find out as much as we can so we can share it with our doctors. They often do not have the time, or motivation to research A.S. By sharing info with them and encouraging them to search the internet and other resources they have we will be able to help ourselves and future patients.
MY STORY
I wrote this 12 years ago when I was initially diagnosed:
"What are you doing here?" The old women ask me every Tuesday and Thursday as I try to relax in the hot tub during physical therapy. All the older people are there doing water aerobics and exercises to help their bad backs and rehabilitate after hip replacements. At 22, I am the youngest one around. By looking at me they think I am a normal healthy young woman. That's the same way everyone else looks at me. They can't see me in the mornings being helped out of bed by my husband who also has to put my socks and shoes on for me. They can't see that every night I go to bed I can not pull the blankets to cover my shoulders. If my husband is still awake he will cover me, but many nights I lie awake being cold and in too much pain to sleep. Every time I sneeze the pain shoots straight to my tailbone.
What they can't see is that my hip joints have fused to my sacroiliac joints and the rest of my joints through my back, neck, and shoulders are slowly fusing together eventually into what they call bamboo spine. To accommodate the constant pain in my hip I started to limp. I had to do something to stop the pain. I could not bare it any longer.
I went to a chiropractor first because I had no idea what was wrong with me. Every time he worked on me the pain got worse. He said that was normal but after a while it should get better. I went to him for a year and nothing got better.
I decided to try my general doctor who was maybe 30 years old. Through her mustache and braces she told me she had no clue what was wrong with me and sent me to get a CT scan which showed a herniated disc in my lower back. She ordered physical therapy and I complied. They didn't know how to help me because I would feel okay when I went to an appointment. The excruciating pain happened as flare-ups at different times. They didn't know what to do with me.
Finally my mother-in-law said that she was surfing the web and found a medical site that let her search for symptoms and she found a disease that matched my symptoms exactly. Ankylosing spondylitis.
We went to a new general doctor to propose the idea that I could have this disease. She said it was unlikely but would run the necessary tests just in case. They took blood samples and x-rays. I have the HLA-B27 gene. Check #1. My s.e.d. rate, showing inflammation was 67, which should be under 20. Check #2 The x-ray of my hips was examined by a rhuematologist. He showed me where my hips have fused and showed me a normal persons x-ray to see the difference. Check #3.
My doctor sent me to see another rhuemetologist to get started on a treatment plan. He had a hard time believing I has A.S. He said, "I usually see boys with this, are you sure your doctor said the test was positive?" ("Yes! Just because I'm a girl does not mean I don't have it contrary to popular belief.") I showed him the x-rays and did everything I could to prove it to him. He finally realized I wasn't going to give up.
He put me on N.S.A.I.D.s (anti-inflammatory medication) right away. As everyone else I tried about four types in the first six months before finding one that worked well enough with the least amount of side effects. Currently I am taking Indocine, and Cytotec to protect my stomach. I only took children's chewable tylonol before. I hated medicine and could never swallow the pills whole. Now I depend on them for relief and can't imagine going back to living without them. I Most the things we deal with is a pain in the butt, literally, but I am greatful that we do have something to help relieved the pain. I now have days where I don't think about A.S. at all.
The rhuemetologist ordered more physical therapy, which is when I started swimming with the oldies.
I asked my family to be tested for the HLA-B27 gene. My dad has it so I know I got it from him. He does not have the disease however. My little 14 year old sister has the gene also. She has been having joint problems and inflammation problems but the doctors say she is too young to diagnose yet. We just have to watch out for more symptoms as she gets older to catch it early. Not that it can be cured ever but at least she will not have to wait 30 years to find out as many of you have had to. Doctors need to be more aware of this disease so they can catch it in others and help them. I can't imagine going longer than the two years I did to find out what I had. I plan to work on a separate web page dedicated to doctor education for A.S. in the next year. I am studying Public Relations at the University of Utah and plan to start my own campaign to educate Chiropractors, Physical Therapists and general practitioners about A.S. so they can diagnose patients more quickly.
I do not plan to let A.S. take control of my life. For the first year after I was diagnosed I felt lost. I wanted to know everything I could to help myself. I have spent so many hours on the net learning about this disease. Now I am ready to start helping others who are dealing with this disease. It all comes down to supporting each other. I wish each of you the best in dealing with A.S. and hope we can all help each other and our families through this challenge.
Update: April 2012
I ended up training for the Arthritis Foundation marathon in Dublin Ireland in 2001. I had to keep myself moving and not let this beat me. I still got stiff joints and had a lot of inflammation. I had to stay on top of taking my medication and keep moving, either by aerobic exercise or at least stretching daily.
