Living With Fibromyalgia and Axial Spondyloarthritis: My Story

After many years of trial and error with doctors, my axial spondyloarthritis (AxSpa) was under control with a prescription of biologics and physiotherapy. On paper I should have been sorted. Yet, pain and fatigue were there. At that time, I was struggling with poor quality sleep, light and disrupted sleep, and waking up feeling tired. During the day, I was experiencing poor concentration and low mood. The pain was diffused throughout my whole body, in the muscles of arms and legs, and in the soft tissue around the joints.

I had other symptoms, too

My mental health was not great either, feeling down of being tired and in pain on a daily basis. I would find myself exhausted after my commute to work. I had no stamina. It was hard to identify whether the physical symptoms were creating the low mood I was suffering from. Or maybe the mental health issues were there as a result of the diagnosis of AxSpa and did impact my sleep, leading to chronic pain and fatigue. Which came first: the chicken or the egg?

I was diagnosed with fibromyalgia

I recall one particular visit with the rheumatologist, I was still in pain and tired, and very little motivated in general. The consultant told me that considering the review of my AxSpa, I should not be in pain. It was then he mentioned to me that I may have fibromyalgia. I have never heard of this condition before. I had a sense of relief being told that my symptoms of fatigue, pain, and mood might be due to a secondary condition, which developed after AxSpa.

However, unlike AxSpa, he said there was no specific treatment for it. He prescribed me some medication to get a better quality of sleep and reduce the level of pain, in particular nerve pain. It has changed my sleep for the better, I could finally catch up on the lack of sleep I have accumulated. The daily pain was going down as well. That was an insight that lack of sleep could be linked to my level of pain. Getting a good night sleep became a priority!

I also needed to address my mental health

Then I decided to address my mental health. I was unsure how dealing with my mental health would impact positively on my physical symptoms of fibromyalgia. Hearing consultants, particularly a neurologist from my work, saying that symptoms of fibromyalgia reported by a patient are known to have a psychological component, upset me. I took it as if it was all in my head. Now thinking back, I did not understand what this consultant meant. Today I can say, only talking for myself, that he was right.

Through my local health community center, I managed to be referred to a counseling service. The psychologist who assessed me directed me to a specific program running at the community health center, dealing with chronic pain using CBT (cognitive behavioral therapy) and physiotherapy. It was a group work, meeting weekly over a period of two months. Each session was led by a therapist and a physiotherapist, and the time was shared between a short presentation and group talk about mental health, and a session of gentle exercise ending with relaxation and meditation. I learned different coping mechanisms for anxiety, stress, pain, and fatigue. It was just what I needed.

I am now beginning to raise awareness for those who live with both AxSpa and fibromyalgia.

It’s been a process to manage fibromyalgia

It's been a difficult and yet great learning curve to understand what fibromyalgia is and how to cope with it. I have certainly raised my awareness about how to live better with it. I can now recognize when my lifestyle is unbalanced, and my symptoms are coming back. My secret is to catch it before it gets worse, by prioritizing the sleep and regular exercise, together with some medication for the pain. Now that my symptoms are managed better, I would like to share my story with others and help others live better with fibromyalgia.