Ankylosing spondylitis: "Don't stop moving and always exercise!"

Published 21 May 2021 • By Andrea Barcia

PilarCrego, a member of Carenity Spain affected by ankylosing spondylitis, tells us about her experience. From the first symptoms, to the late diagnosis and how to cope with it to make the best of the situation.

Discover her story now!

Ankylosing spondylitis:

Hello PilarCrego, thank you for agreeing to share your story with us on Carenity!

First of all, could you tell us a bit about yourself? 

I am currently retired, 77 years old and married. I have had one child and have two grandchildren. 

What do I like? Like everyone else, I like nice things, but I don't ask for much because I come from a modest background. I like going to the swimming pool to stay in shape.

You've mentioned on the forum that your symptoms showed up long before you were diagnosed. What symptoms were you having before the diagnosis? What did the doctors tell you back then?

The symptoms started when I was still very young, in my feet. They didn't hurt all the time, just sometimes as I got older. Occasionally I had flare-ups, but I didn't go to the doctor. 

At that time, going to the doctor was not accessible for everyone.

The best thing that happened to me was during pregnancy, since I had no discomfort and on top of that, I lost weight. Everything was like a dream....

At what age were you diagnosed? Why did it take so long? How did you react?

I was diagnosed in my late fifties.

It took so long because every time I had a flare-up I was referred to a traumatologist. He always prescribed me the same thing, an antibiotic that in the end did nothing for me.

One day, I was lucky enough to meet a traumatologist who recommended that I visit a rheumatologist and that's how it all started: I made an appointment and after waiting a while he received me, did the necessary tests, and the diagnosis was soon made.

For me it was a relief.

What symptoms do you have now? How do you manage them?

At the moment, the worst are my feet, they fall asleep and they are constantly swollen, also my shoulders and neck. Every season the pain changes, so it is quite difficult to control it.

How did and does ankylosing spondylitis affect your life? 

At first, I felt some relief when I finally learned the diagnosis. I learned to live with the problem, although the fact that I was not working at that time made things much easier for me. 

Now, to tell the truth, I don't leave the house much either, I am getting more and more tired, and with this pandemic, we all go out less and less.

What treatment(s) are you currently taking? 

I am currently taking 6 methotrexate pills a week, 2 folic acid, 2 sulfasalazine and 1 cortisone.

You talked about running out of your treatment last summer, was this because of the COVID-19 pandemic? How did you react? How are you coping now?  

I ran out of sulfasalazine (which is made by Pfizer), it was nowhere to be found! Now I have it again and I feel much better.

Honestly, I don't know if the impossibility of finding my treatment was due to the Covid-19 crisis or some other problem, I was told at all times that we would not be left in need.

Now I have improved a lot, although I don't know how long it will last because spring is a really difficult season for me.

Have you been vaccinated against COVID-19? Which vaccine did you get? Did you have any side effects?

Yes, today I got the second dose. I got Pfizer like everyone else my age. 

After the first dose, everything went perfectly without any symptoms. And now I don't feel anything strange either.

Do you have any advice for other members living with ankylosing spondylitis? 

I'd say that each one of us has a lucky number and we have to make do, the best thing to do is to accept your situation and live your life as best as you can. And to take care of ourselves, if there's something we should not do or take: do without.

What I would advise is don't stop moving and to always exercise. That was the first thing my rheumatologist advised me when he gave me the diagnosis. 

Any last words?  

I wish all the people who, like me, suffer from this disease, to take care of themselves and live as well as possible. 

Also, I'd like to thank Carenity for giving me the opportunity to exchange with other people with whom I have these things in common. Many people don't know about this disease and when you talk about it, they think it's something rare. 

A very special greeting to Andrea.

Greetings to all of you, Pilar R 

Many thanks to Pilar for agreeing to share her story with us on Carenity!

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avatar Andrea Barcia

Author: Andrea Barcia, Health Writer

Andrea specialises in managing online patient communities and writing health articles. She has a particular interest in the fields of neuropsychology, nutrition and sport.

Andrea holds a master's degree in... >> Learn more


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