The journey from first noticing ankylosing spondylitis symptoms to an eventual diagnosis is different for every patient. Some are diagnosed quickly, for others it may take far, far longer. In the US, the average time to diagnosis is 13 years. Hopefully we can continue to reduce this delay, but currently many patients still go undiagnosed and untreated for a long time, seeking help from other physicians without ever seeing a rheumatologist.
What’s your body telling you?
The symptoms of AS can range from mild-to-moderate right through to severe. One of the most common is lower back pain, which improves with exercise and gets worse with rest. This pain can often be serious enough to wake people at night and restrict their movement throughout the day. However, back pain of this type is so often due to injury such as sprains and strains, or degenerative arthritis, that patients won’t usually suspect AS unless they’re already familiar with the condition.
Self-treatment with pain relievers such as acetaminophen and anti-inflammatories is the first step for many patients. These offer varying degrees of relief, from simply blocking the pain to helping reduce the inflammation that causes it. Physical therapy is also often tried, both by patients with unattributed back pain and those diagnosed with AS. This can be effective in reducing some of the discomfort of AS because it improves flexibility but it’s unlikely to offer a complete solution.
There will be good days and not so good days as symptoms vary, but having others around you who know your story and can provide help is often a key piece to a happy AS life
Call in the professionals
Patients usually first go to their GP with symptoms closely resembling persistent back pain. GPs see a lot of back pain but, again, will most likely suspect injury rather than AS as the cause.
With this in mind, GPs’ investigations often start with x-rays and/or simple pain relief. One of the issues with this approach is that the damage from inflammation in AS cannot easily be seen on x-rays, so scans can appear normal for years, delaying diagnosis.
To see the inflammation of AS you need to use an MRI scan,but this type of scan is both expensive and difficult to access so unlikely to be used this early. This means it’s very important for patients at this stage to ensure their GP is keeping an open mind regarding their condition, even in the presence of a clean x-ray.
In addition to their GP, patients may see a range of specialists for treatment of other conditions associated with AS. Joint involvement may need an orthopedic surgeon; eye inflammation will involve an ophthalmologist. Gastroenterologists may even be called in to help deal with possible bowel inflammation.
However varied their journeys may be, most patients will eventually end up seeing a rheumatologist like myself. We’ll take an in-depth family history and usually request blood tests, x-rays, or MRI scans to confirm the presence of AS. Once the results of these tests are back we can make a decision on the right next step - diagnosis, watching-and-waiting, or referral to another specialist.
Whatever the symptoms of your AS, your GP and rheumatologist will want to monitor your disease to make sure that it is treated appropriately and that any complications or issues with treatment are resolved swiftly.
Each patient’s journey is different because each person is different
Getting the right help
With a confirmed AS diagnosis, and alongside proper medication, tailored physical therapy comes into its own as an effective form of AS relief. A good set of ankylosing spondylitis-specific exercises that you can do at home regularly is sufficient to benefit physical function.
Support and exercise groups can also help lighten the load a little. These can often be found through local AS support organizations, patient associations or even online. Knowing that there are other people out there with the same condition, grappling with the same issues, can be very reassuring and supportive.
Whatever your AS journey, involving not just your doctors but patient groups, friends and family, even work colleagues, can be really beneficial. There will be good days and not-so-good days as symptoms vary, but surrounding yourself with people who know your story is often a key piece to a happy AS life.
This article was written by Dr Philip Robinson, a regular contributor to ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.