As ankylosing spondylitis (AS) patients, it’s hard for us to get the information we need to properly understand and manage our condition. Ankylosing spondylitis symptoms present in different ways with each person. It’s difficult for doctors to diagnose and even more difficult for them to offer general advice that’s helpful for all patients. That’s why, with the help of some fellow people with AS, I’ve composed a list of useful things to know when you’ve just received an ankylosing spondylitis diagnosis.
That women find it harder than men to get diagnosed
Most women eventually diagnosed with AS will start their journey by being told that AS is much more common in men. In my experience, AS in women presents differently than in men. There needs to be more education on ankylosing spondylitis in women in my opinion.
That women may suffer worse pain in joints other than the spine
For me, this is exactly how I presented to my first rheumatologist, and was initially diagnosed with a different condition. He actually said, “Even though you are HLA-B27 positive, you do not have ankylosing spondylitis, you have fibromyalgia”. There were other warning signs too - for example, a history of AS in my family. However, the fact that I was a woman and was presenting with pain in many joints but not those which would typically indicate AS, was enough to point him in the wrong direction. It took a second opinion, ruling out fibromyalgia, before I finally got my diagnosis.
Most wish their doctors had been more proactive from the initial diagnosis
I certainly fall in this category! Time is NOT on our hands. It’s very important to start treating AS immediately so that you can effectively manage the disease and what it is silently doing to your body. I was misdiagnosed, so my treatment didn’t start right away and I feel that’s harmed my case. My disease has been very hard to get under control – I don’t mean ‘in remission’ or cured, just simply managed.
That you will not be pain free, but that you can manage your pain
At first it’s hard to understand that the pain will never go away, it just changes from day to day or even minute to minute. You may think you are having a great day with less pain and then, while you’re sweeping your floors, BAM…it hits like you’ve been stabbed. Pain from AS doesn’t disappear, it needs managing in some way - whether that’s medication or simply rest.
AS is a long journey
The numerous symptoms, old and new, and the many specialists you’ll need to see may make your disease feel like a full-time job – that’s certainly how I feel. Your disease will continually change because it is attacking your body from the inside where you can’t see.
That you should expect fatigue, both mental and physical
This is not “oh, I’m a little drowsy” tired, this is “I’m walking in concrete and cannot move” tired. The kind you only experience with a chronic illness. Add to this the mental fatigue of AS; where it’s just exhausting to hear one more new symptom or attend one more doctors’ appointment.
That you shouldn’t feel afraid to ask questions
Maybe doctors are thinking they do not want to scare or overload you with information at the initial appointment. For whatever reason, you may not get all the facts you want immediately. and you’ll probably just go home and immediately search ‘ankylosing spondylitis’ anyway. Ask questions and get answers at every appointment so that you’re getting all the information you need from the doctor who’ll be treating you.
Managing AS is a team effort
When you’re diagnosed with AS, you will not see just a rheumy for treatment. You will need a team of doctors, all of whom are very familiar with AS and how it affects you. For me, my team is a primary care doctor, rheumy, ophthalmologist, neurologist, orthopedic physician, dermatologist, allergist/immunologist and gastroenterologist – all of whom give me the support I need.
That you will probably feel you know more about AS than most of your doctors
You’re likely to spend hours trying to find out everything you can about AS. Since your own research is so focused you may sometimes know things about the condition that your doctors, who study many diseases and not just AS, may not. Autoimmune diseases can overlap in their symptoms, making it hard for doctors to quickly narrow things down.
That it was going to be OK
It won’t be easy. AS is a fight and the fight can feel overwhelming at times. However, having a great support system in place will help you get through it, help you be OK.
I can’t stress this point enough. Your support system is vital. Support can come from many places; doctors, family members, even other AS patients. If you’re really lucky, you may find a rheumy that really goes above and beyond. I found that this sometimes requires trying a few different options before finding that right doctor for you. I didn’t click with my first rheumatologist but I knew in my heart that I just needed another opinion and a correct diagnosis. Now I’m on my third rheumy and she’s been awesome!
As for family support on my journey, I have a brother who has AS and already had both hips replaced and my daughter is HLA-B27 positive and showing early signs, so both understand what I’m experiencing. The greatest support I have is my husband who helps me tremendously! I am very fortunate to have a family who helps, supports and wants to know what is going on with me constantly. If you don’t have any of these, then I’d suggest looking on-line. There are great AS support communities where you can gain knowledge and help through these communities as well as lending support to others who are suffering.
For me, I still think the best advice I can give is to stay positive. Sometimes this can be very hard, but I think our state-of-mind also helps in this life-long journey. That’s why you’ll always see me end every blog or article with this thought - AS has my body, but NOT me!
This article was written by Meloni Thompson, a regular contributor at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.