Living with Fibromyalgia and AS

When you live with ankylosing spondylitis, the pain is constant. Not to mention the brain fog, extreme fatigue, stiffness, trouble sleeping, and more. Many people who live with AS also live with fibromyalgia -- and the symptoms are very similar. Fibromyalgia can cause many of the symptoms that AS causes, and living with both conditions can be debilitating.

Ankylosing spondylitis and fibromyalgia: a lot in common

Fibromyalgia and AS have a lot in common. They are both rheumatic diseases. Rheumatic diseases cause inflammation in your body, especially in your joints, tendons, muscles, and bones.² They can both cause widespread pain, sleep troubles, depression, digestive issues, brain fog, and fatigue.^{1, 2}

Both AS and fibromyalgia can be hard to diagnose. Their symptoms are often misunderstood or ignored. Sometimes, people are diagnosed as having one condition, when they really have the other. It’s especially common for women to be diagnosed with fibromyalgia when they really have AS.² And many people live with both. In fact, our 2019 In America Survey showed that 35 percent of respondents live with AS and fibromyalgia.

It’s a lot to cope with

We asked our We asked our Facebook community to share what it’s like living with both fibromyalgia and AS. Here's what they said: to share what it’s like living with both fibromyalgia and AS. Here's what they said:

"Fibro is a mystery condition. As in, will this be the day for severe light or sound insensitivity? Can I walk today? When will there be a break in flares, at least ease up? Oh, don't forget the days we feel like we've been dragged behind a car."

"I have both of those diagnoses and I'm just in pain 24/7. My pain is usually at a 6/10. That is my "norm". Some days it is better, some not so much."

"It's painful but taught me to appreciate the small things and good days. It's scary because it is very unpredictable and it is expensive because I can not run my business the way I should."

"These 2 conditions are physically, mentally, and emotionally draining."

"I never have a day with no pain."

"My muscles hurt like I’ve run a marathon. My joints hurt like they need to be oiled and my back hurts like it’s broken. My skin hurts to the touch and feels bruised 24/7. My hands stay swollen and my mind is fog city."

Ways your doctor can help

It can be hard to get a straight forward diagnosis. If you have been treated for AS but feel that your symptoms are not improving, ask your doctor if fibromyalgia may be a factor. Similarly, if you’re being treated for fibromyalgia but are experiencing AS-like symptoms, ask your doctor.

Many people who have both AS and fibromyalgia may need different medications than someone with just one of those conditions. AS is usually treated with NSAIDs or biologics. Fibromyalgia is often treated with medications for nerve pain.³ People with both conditions may need to take both biologics and nerve pain medications, for example.

Lifestyle changes

Certain lifestyle changes may help improve some of your symptoms. These can include:

• Exercise. Many people with both AS and fibromyalgia find that exercise can help improve their pain levels and mood, as well as improve their sleep. Start slow with low-impact activities, such as walking, stationary biking, or yoga. It’s important to listen to your body and only go as far as you can.
• Meditate. Incorporating meditation or mindfulness into your day-to-day life may help improve your pain levels. There are many apps and online videos available to help guide you through a meditation. Or simply sit in a comfortable position and listen to your breath.
• Improve your sleep (or try to). While this is easier said than done, sleep can play a very important role in mood and pain regulation. It can be helpful to stop drinking caffeine early in the afternoon. It can also help to read or listen to relaxing music before bed instead of looking at your phone or another screen. If pain is getting in the way of your sleep, your doctor may be able to help.

If you have found something that helps with your fibro and AS, please share in the comments below.

This article was originally published on our sister rheumatic community, AnkylosingSpondylitis.net.