Exploring Fibromyalgia: Is It My AS or Something New?

I have been back on Humira for 6 months now, which is the same drug that had put me into remission for 8 years. Of course, I was not assuming after going back on it that my pain would diminish quickly—I knew I had to be patient and allow time to do it’s thing.

I have been incredibly patient with both my pain and myself during this process. High pain days would come and go, and I would simply say to myself, “Trust the process.” Unfortunately though, the high pain days haven’t left and nothing has changed. Over the course of the last 6 months, I have been left questioning where exactly this pain is stemming from now.

Did I become resistant to Humira?

My rheumatologist had warned me that sometimes going off of Humira for a prolonged period of time and then returning back to it could cause your body to become resistant, but my hands were tied and I had to take the risk.

Eventually, once my infection had cleared, I had gone back on it but a year had passed and my pain had become consistent. Ever since I have been struggling to manage my pain, and now that I am at the 6 month mark with Humira, my rheumatologist and I decided to increase my Humira to once a week to see if things improve. We also discussed the possibility of my pain coming from somewhere else, like fibromyalgia.

Is my ankylosing spondylitis still active?

We’re now on a mission to figure out if my AS is even active at all. Not only has my pain become persistent, but so has my chronic fatigue and other symptoms that I have developed. I mentioned to her how I get into huge states of stimulation overload—how I have to use earplugs to cope with noise, or use sunglasses when I am sensitive to the light because of how bad my fatigue is.

We also discussed how sometimes my pain feels unfamiliar. I’ve had AS for almost 17 years now and have become very intuitive with how it affects my body, or when I’m about to flare. With my pain this last year, sometimes I feel as though it’s a different type of pain coursing throughout my body. This also leads me to question if that may be fibro as well.

Could fibromyalgia be causing my symptoms?

My rheumatologist sent me for bloodwork to check on my inflammation levels, and as suspected they came back incredibly normal. I am still currently waiting to schedule an MRI to check on my back to confirm if my AS is active or not, but with these other symptoms it’s hard to tell what is what.

Throughout this journey, the Instagram community has been so generous and supportive in both validating my feelings as well as informing me on their own experiences. I’ve heard stories of other AS warriors being diagnosed with fibro and vice versa. I’ve had those with fibro tell me that a lot of my symptoms—the fatigue, body pain, noise and light sensitivities—could all very well lead to a fibro diagnosis.

Living with chronic pain my whole life has made this experience very confusing, but it has also made me so in tune with my own body that I always know when something isn’t right. Only time will tell.