Doing Better With AS

Doing things can be difficult when you’ve got axial spondyloarthritis and fibromyalgia. Motivation is nothing compared to pain and fatigue. No matter how much I wanted to do things and move around, my body wouldn’t allow it.

Besides NSAIDs and biologics, my rheumatologist would prescribe exercise as part of my treatment regimen. This was frustrating for me because no matter how much I wanted to, I couldn’t incorporate movement into my life because of how bad my pain and fatigue were. It was only once my symptoms became more manageable that I was able to be more active.

High doses of biologics, physical therapy, slow improvements

My symptoms, largely pain and aches, only began improving when I was put on the highest dose of Inflectra (a Remicade biosimilar) and did physiotherapy. I actually started physiotherapy while I was on a lower dose of Inflectra and still found it extremely difficult to get through very low impact exercises. I was about to give up on physiotherapy because I felt like it wasn’t helping when my rheumatologist suggested upping my Inflectra dose to 600mg.

I felt relief immediately after starting the new dose. I found my pain to finally be at a level where I could get through it and get things done. My body was finally able to do simple things I had given up on. I was able to do my physio exercises. I was able to go on short walks with a walker. I was able to do more chores at home. I was able to be more present and have less brain fog. These are little things that most able bodied people take for granted but they were out of reach for me for so long.

Adapting my life and exercise routine

I still experience pain and my fatigue is the same but having pain be more manageable has helped me immensely. I still have to use my cane and walker, use a shower chair, sit to wash dishes and brush my teeth. But I can finally do some exercises or at least stretches almost everyday. I can finally wash my hair myself again. I can go on walks. I can work a part time job. I can go out and meet people. I can spend more time with my family. I still struggle to do all of these things, even with accommodations, but I am actually able to do them now.

Even when I was on a lower dose of my biologic, my pain used to average at 8-10 everyday. Now, it averages 6-8 for about 3 or 3.5 weeks and 8-10 for one week. I get inflectra infusions every 4 weeks so I only have to deal with increased symptoms for a couple of days or maximum for a week. Naturally, I prefer this to constantly being in pain with little to no relief.

I’m so thankful to have found a biologic that works. I don’t think I will ever be as functional as I was prior to experiencing AS and fibro and that’s okay. But I’m glad I can be as functional as possible for me.