AxSpA Pain Management

First of all, managing pain is different for everyone.

During my journey, I quickly learned there is a lot of trial and error when it comes to pain management. What works for me might not work for you and what doesn’t work for me might work for you! Always talk to your doctor first.

Medication

Taking the medication that your doctor has prescribed is the first step in pain management. Often, the first types of medications you try will not work, it takes time finding the right meds for you.

I began trialing different types of NSAIDS at the beginning of my journey. As my pain was so intense when I was trying these, they did not help. Fortunately, as my pain can somewhat be controlled now, on bad days I will take a NSAID when needed and they do help.

Knowing when you need to take your meds is vital. Whether that is a daily occurrence or just when you feel like your body needs it. Of course, discuss this with your doctor first.

I suffer a lot from neck, shoulder, and upper back spasms. I take diazepam for this. As you may know, this is a highly addictive drug, so I use this sparingly and only in emergencies. I learned how to listen to and understand my body. When the spasms become debilitating and last for long periods of time, I will take one, or half of one depending on the severity of the spasm. I feel it is important to respect these drugs and understand how they affect your body, in an effort to get the balance right. A little bit of knowledge can go a long way!

I have spoken with my doctor about this previously and she helped me come up with a plan on when and how to take my medication.

I also inject two monthly injections of Cosentyx. This is the second biologic drug that I have tried. Like I said, pain management has a lot of trial and error.

Heat

My body loves heat. I constantly use hot water bottles. Every day I use 3 at a time, one for my lower back and tailbone, one for the middle of my back, and one for my shoulder blade area. I bring all these out with me on car rides or if I'm visiting someone's house (pre-covid).

I also use microwavable heat packs, two in fact. These provide comfort and help my neck and shoulders.

I have a hot bath nearly every night with Epsom salts, this helps to relax my muscles, body, and mind. Increasing my chances of a good night's sleep.

I have backup heat pads that I can plug in and I use them if I'm at my desk doing college work or if no one is at home to refill my hot water bottles as I can't lift the kettle.

Of course, everyone is different, and using heat may not be for you. I’ve noticed many people get relief from topical creams. I tried ‘Deepheat’, my body did not like this. I broke out in a rash from this. But I am happy that I tried this as at least now I know that it is not for me.

Cold

My body HATES ice. When I use ice, it makes my pain worse and causes me to tense up.  I tried a topical cream called ‘Biofreeze.’ Again, this was not for me. This topical made my spasms a million times worse. But I have heard great reviews from people who use and love it.  Many people use ice packs or even have ice baths!  Once again, everyone is different.  This may or may not work for you.

Editor's note: You can read more pain tips from Ali in Part 2 of her article!