We've all had back pain at some point in our lives, right? If you bend over a little wrong or lift a heavy object, the pain will go away in a couple of days. But... sometimes this back pain is not that simple. It can be the beginning of a bigger problem that has been bothering you for years and cannot be properly diagnosed. Today we're talking about one such condition. That's Ankylosing Spondylitis, or AS for short.
What is Ankylosing Spondylitis (AS)?
Simply put, Ankylosing Spondylitis (AS) is a long-term, inflammatory type of arthritis that primarily affects your spine . What happens is that the body's immune system mistakenly attacks the joints in your spine. Over time, this inflammation can cause the vertebrae in your spine to fuse together, reducing flexibility and leading to a stooped posture.
Some doctors say that diagnosing this disease is like looking for a needle in a haystack. There are several reasons for that.
Why is AS so difficult to diagnose?
Studies have shown that it usually takes 7-10 years from the time AS symptoms start to a correct diagnosis. Imagine how long that is! The main reasons for this are:
- Back pain is common: As we mentioned earlier, back pain is very common. Therefore, many people think that it is normal and ignore it.
- Delay in X-ray reports: In AS, damage to the sacroiliac joints of the spine and pelvis only becomes apparent on an X-ray after the disease has progressed somewhat.
- Symptoms vary: AS affects each person differently. Some people only experience back pain, while others may also experience problems with their eyes, heels, and other joints.
- Lack of a single test: There is still no single blood test or scan that can 100% confirm that this is AS.
This table will help you understand the difference between normal back pain and pain caused by AS.
| Characteristic | Mechanical Back Pain | Back pain in AS (Inflammatory Back Pain) |
|---|---|---|
| The pain is the greatest. | After work, at the end of the day | In the morning and at night, especially after rest |
| When you rest | The pain is decreasing. | Pain and stiffness increase. |
| Exercise/Movement | The pain may increase. | Pain and stiffness decrease |
| Morning Stiffness | Lasts less than 30 minutes | Lasts more than 30 minutes (often more than an hour) |
Lives spent amidst misdiagnoses...
When we hear the experiences of people living with this disease, we understand the seriousness of this issue even better.
Don's story: "It's like the eyes are blind, but the eyes are visible"
It took Don 7 years to get the diagnosis. But looking back, he feels like it took him 30 years. When he started having knee pain at age 10, everyone called it "growing pains."
But around the age of 40, his life took a scary turn. That was when he developed uveitis , an inflammatory eye condition that can be a serious complication of AS. "I literally lost my sight. I could only see shapes, and I was very sensitive to light. It was like I was blind, but not really blind," Don says.
Although ophthalmologists couldn't find the cause, they speculated that it might be "some kind of autoimmune disease." With no clear answer, Don put that aside. After years of seeing more than 30 doctors and being treated for everything from cancer to neurological conditions, it was finally discovered that he had AS after seeing a rheumatologist.
Charis' story: "It's not a disease that only affects men"
Charis was raised by her mother. Her father had AS. "I didn't even know the name of the disease. But I knew I wouldn't get it, because it was a 'male disease,'" Charis says.
This is a misconception among many people. While it was previously thought that AS only affected men, the latest data shows that women are also affected by the disease at a significant rate.
Charis had been suffering from knee and other joint pain since she was young, but she thought it was some other problem when she played sports. A doctor told her it was anxiety. But Charis didn’t believe him. She thought the symptoms were similar to her father’s. Finally, after asking her father, and following his advice, she went to a doctor and was diagnosed with AS.
About 80%-95% of AS patients have the gene called HLA-B27 . This can be inherited from parents to children. However, not everyone who has this gene will develop AS, and it is also possible to develop AS without this gene. Therefore, this cannot be determined by genetic testing alone.
Charis describes her feelings as follows:
"Depression and chronic disease are like cousins, they always hang out together."
The long journey to a diagnosis can be emotionally draining. So if you're going through something like this, don't hesitate to talk about it and seek the help of a mental health professional if needed.
Why do doctors miss AS?
One reason for this is the limited time available to see patients. "Just 15 minutes with a patient is not enough," says one specialist. To diagnose a complex disease like AS, you need to listen carefully to what the patient is saying and ask the right questions.
Also, the symptoms of AS sometimes resemble those of other diseases. For example:
- Pain in the buttocks and heels
- Psoriasis, a skin disease
- Digestive system diseases such as Crohn's disease or ulcerative colitis
If a general practitioner (GP) has not seen many AS patients in their practice, they may not suspect AS when they see these symptoms. This is why it is very important to see a rheumatologist if you have long-term back pain, especially if it is worse in the morning.
The good news is that doctors are now more aware of the symptoms of AS than ever before. Also, there are new treatments (such as biologic therapies) that are very effective in controlling the disease. So you don't have to suffer like you used to. The most important thing is to diagnose the disease in time and start the right treatment.
Take-Home Message
- If you have had back pain for more than 3 months, don't ignore it.
- If your back pain is especially severe in the morning, worsens when you rest, and decreases when you walk or exercise, it could be a symptom of AS.
- Be aware of morning stiffness in your back and joints that lasts more than half an hour .
- In addition to back pain, if you have symptoms such as redness or pain in the eyes (uveitis), heel pain, or swelling in other joints, tell your doctor.
- Talk to your general practitioner about your symptoms. If necessary, ask for a referral to a rheumatologist .
- Don't give up the fight until you get a proper diagnosis. The most important thing is to listen to your body.
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