Patient Blogs | Ankylosing Spondylitis
'My Body Froze as I Tried to Get Up': How Strange Symptoms Led to a Surprising Diagnosis

It seemed like any other weekday morning: My alarm clock rang, I slapped the off button, threw off the covers, and turned to my side to roll out of bed -- but I couldn’t move.

My body froze as I tried to get up. 

I recalled thinking, ”Why can’t I move?!” and then I freaked out. After about 15 minutes of lying still, I was slowly able to move and sit up in bed. I was relieved and thought perhaps I had just slept funny. It didn’t occur to me that something could be seriously wrong -- I was only 26 years old!

As the years went on, I slowly developed a limp on my left side. It was the tiniest limp. But it progressed and got worse.

I went to my family doctor, but he didn’t know what the cause could be.

In 2000, a family friend, who happened to be a doctor, suggested I see a rheumatologist.

After an examination, the rheumatologist said she’d like to order blood tests because she suspected that I may have a particular type of arthritis called ankylosing spondylitis. She thought it unlikely though because the disease is more common in men.

But guess what?

I hit the autoimmune disease "lottery."

I was relieved to finally have a name for the unexplained pain I had experienced for years, but I really didn't know what AS was. 

I learned what I could about AS. But since information was limited back in those days, I had to rely on doctors for assistance and treatment.

Now that we live in the age of Google, information is readily available at our fingertips.

If you’ve been recently diagnosed, the first thing I would tell you to do is learn all you can regarding your disease. Knowledge is power. I continue to research regularly. Also, don’t rely exclusively on your doctor to provide the answers. Be a health partner with your doctor. It also helps to become a detective like Sherlock Holmes. 

Just as Sherlock Holmes starts at the scene of the crime and works backwards to determine what took place, you also need to investigate what could be going on with your body on a deeper level. Medications can help, but they’re more of a Band-Aid and not a true solution.

Secondly, take responsibility for your health. No one else is going to give you the care and attention that you need and deserve other than you. We live in a fast-paced world that places so much pressure on us to pay bills, pay for a mortgage, or take care of kids. So self-care takes conscious effort -- slow down, connect with nature, and start taking consistent care of yourself.

Lastly, keep in mind: Your doctor provides the diagnosis, but your prognosis is totally in your control. I thought for the longest time that I was a victim to the pain and thought I would never get better. But then I started to ask myself questions by looking within.

You can choose to see your chronic disease as an opportunity to dive deep into self-discovery. The pain is happening for a reason, so listen, really listen to what it’s trying to tell you. Ask questions such as:

  • Where does pain occur in my body? 
  • What types of foods or events trigger pain? 

I bet you could recite everything about your favorite celebrity -- what they eat, places they vacation, and all their family members' names. But how well do you know YOU? What are your values? What are your health goals? What have you always wanted to be but were too afraid to try?

I believe that the chronic pain that we experience can either be an excuse to stay a victim or an opportunity to embark on a healing journey of self-love and acceptance. The choice is up to you.


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Lovaine Cohen

Lovaine Cohen

Diagnosed since 2001

Lovaine Cohen has lived with ankylosing spondylitis for over 20 years. A chronic pain coach, Lovaine helps women reduce pain with her Holistic Healing Method program and shares pain management and anxiety tips on her blog and on Instagram. Her loves include her two children in their early 20s, a rescue husky named Stella, and her husband of 28 years. Connect with Lovaine on Instagram.

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