An Update on Keegan’s Fibromyalgia Journey

It’s official! Keegan’s doctor diagnosed him with fibromyalgia. To those of you who haven’t seen my previous post, I had been worried about additional diagnoses Keegan may have. After all, it’s traumatic to watch one’s spouse go through pain, surgeries, and many treatments.

The constant “what ifs” become a habit, and it’s tough to know when the diagnoses and symptoms will settle down. So, I wanted to write this piece as a follow-up to explain a bit more about what it was like for Keegan to become formally diagnosed, his treatment, and tips for anyone who may also be wondering about fibromyalgia and AxSpa.

Some background on Keegan’s AxSpa and chronic pain

Keegan’s chronic pain started over 10 years ago. I don’t remember a version of Keegan without pain. He was diagnosed with AxSpa at 24 and had a total double hip replacement at 28. It felt like all of this happened so fast and so slow at the same time. Despite having successfully been treated by Humira, he continued to have high levels of chronic pain, even outside of a flare-up. And the pain wasn’t consistent with other pain he had previously in his life.

During the worst of his AxSpa around 23, he was bedridden. (I had to buy a walker for him!) The pain at that point was deep, in his joints, sometimes an ache and sometimes a sharp pain. I remember movement simultaneously causing him pain and relieving pain. It was hard to know when to walk and when he should rest.

How treatment for AxSpa shined a light on his fibromyalgia

What we found was that once the AxSpa settled down thanks to Humira and the osteoarthritis in both hips was gone thanks to the double hip replacement, a new pain was at the forefront. It was a numbing, tingling pain. Something that contrasted with the deep ache of a flare-up. Or even the sharp pain of osteoarthritis. Plus, his pain never seemed to correlate with a flare-up. Sure, it got better and worse, but it all just felt like it didn’t add up.

So, he asked his doctor about a possible diagnosis

It was only 6 months ago that he brought these new symptoms up with his rheumatologist. (We had just moved and it took a while to establish a new doctor after moving.) His rheumatologist reiterated what we already knew: it’s hard to diagnose fibromyalgia based on symptoms. But, if he treated Keegan for fibromyalgia and it made a difference, the doctor knew that he had a diagnosis. If he didn’t react to the medication, then it was something else or part of AxSpa.

Keegan went on a low dose of Cymbalta to see how he reacted. He called the doctor back a few weeks after starting to let them know it did make a difference. They bumped Keegan up to the typical dosage of Cymbalta, and it made a big difference. No more tingly hand pain. No more random shooting pain down his legs.

What advice do we have for those curious about a fibromyalgia diagnosis?

It’s hard to be your own advocate when it comes to pain. What Keegan found most helpful when talking to his doctor was:

• Describing the pain, location, and how it didn’t coincide with his AxSpa pain
• Keeping a log of the pain, and anything that made it better or worse
• Bringing up how long the pain had been around (it started much after his AxSpa diagnosis)
• Discussing other pain management techniques Keegan had already tried or was already a part of his routine (ex: medical marijuana, exercise, meditation)

For those of you out there with chronic pain—-Keegan literally feels you. And know we know it’s not just his AxSpa, but also fibromyalgia. It’s a tricky disease, but I’m so glad he’s found another tool for his toolbox.