My Experience With AS and Fibromyalgia
Before being diagnosed with AS, I was unaware of the comorbidities that came along with it. When I was diagnosed, I knew I checked all of the boxes, but there were still a few symptoms that didn’t completely align with AS.
My fibromyalgia symptoms
While I had the typical AS symptoms of lower back pain, hip pain, fatigue, and brain fog, there were a few other symptoms that were questionable. In the very beginning, I experienced a phenomenon where I felt like I constantly had to stretch my arms. On multiple occasions, I broke down in tears, begging God to make it stop, and to get me out of this body. It was completely maddening and a really hard feeling to put into words. I also experienced lightening-like shocks throughout my body and tingling and numbness in my legs and feet. From what I had read, these were not typical AS symptoms. I began to think that maybe something more was going on.
Treatment for AS
I was put on Humira immediately following my AS diagnosis. I knew the risks, but I was ready to take my body back. Within the first month, I noticed my brain fog and fatigue start to dissipate. As the months went on, symptom after symptom seemed to subside, but there were still a few that lingered.
I had horrible pain that shot through my legs around the clock. My left foot continued to tingle and go numb, and I experienced widespread muscular pain and weakness. If I overexerted myself, my body would tremble and twitch for hours on end. A trip to the ER and multiple (clear) MRI's later, I decided it was time to consult with my doctor about what was going on.
After discussing these lingering symptoms with my doctor, we agreed that there was probably more to this than just AS, and I was put on Cymbalta. Cymbalta is an antidepressant, but is also used to treat nerve pain related to fibromyalgia. Within 4 hours of taking my first dose, the pain was completely gone. I was ecstatic and a little bit in disbelief.
Unfortunately, that night I experienced severe side effects including insomnia, nausea, and vivid dreams. I gave it a few more days, but the side effects just got worse. What this did do, though, was confirm that I did indeed suffer from fibromyalgia on top of ankylosing spondylitis.
Living with fibromyalgia and ankylosing spondylitis
Since my fibro diagnosis, I have been able to differentiate the pains between the two conditions. Nerve pain and arthritic pain are two completely different pains. Nerve pain for me tends to be a burning, throbbing, but sometimes constant, dull, but sharp ache that could probably drive a person to insanity. This is usually accompanied by severe, widespread muscle weakness.
Arthritic pain is more localized, and more of a sore, dull ache accompanied by stiffness and tenderness. I would say the worst part of living with these two conditions together is that when one flares up, the other tends to follow suit. For example, for the past 4 weeks, I have slowly begun to notice my AS flaring up. This week, the pain in my spine and hip really peaked. I'm now experiencing muscle weakness in both legs and tingling in my shins. I feel like I'm trudging through quicksand just to make it to the kitchen. It can make for some really hard days and restless nights.
If you have been diagnosed with both fibromyalgia and ankylosing spondylitis, I would love to hear from you! What do you find most challenging about living with the two? What helps you most when it comes to pain and fatigue? Let me know down in the comment box below.
Do you use the word disability to describe your AS?