What You Need to Know About Fibromyalgia

Five Foot Two, a new Netflix documentary which chronicles Lady Gaga’s battle with fibromyalgia, has cast a new spotlight on the chronic pain condition.

Just days before the documentary premiered, the pop singer announced she was postponing the European leg of her world tour, citing that the severe pain she is experiencing has “impacted her ability to perform.”

Despite the recent increase in awareness, confusion about fibromyalgia persists.

We asked Dr. Noel So, a Denver-based physical medicine and rehabilitation physician, to address some common questions about the condition:

What is fibromyalgia?

Fibromyalgia is a chronic pain condition which is caused by an increased response from the nerves when stimulated. And it’s not just chronic pain. People with fibromyalgia may experience other symptoms like migraines, poor sleep, irritable bowel or bladder syndrome, depression or anxiety.

What causes fibromyalgia?

Fibromyalgia is usually characterized by an over-activation of the sympathetic nervous system.

What does that mean?

Think of it like this: your sympathetic nervous system is your fight-or-flight response and your parasympathetic nervous system is what relaxes you.

When you’re on your feet all day, working or hitting some traffic, your sympathetic is a little up. When you sit down to digest a meal, your parasympathetic kicks in and it goes down. When you get ready for an afternoon meeting, it goes up. When you go to sleep, it goes down.

For people with fibromyalgia, there was likely a major stressful event or series of stressful events that revved up the sympathetic system significantly so that, when the parasympathetic system kicked in, it was unable to properly regulate the nerves and bring it back down.

So how does this lead to the chronic pain people experience?

When you’re stuck with an over-activated sympathetic, your body is in fight-or-flight mode all the time, so your senses are much more heightened. For instance, when your sympathetic is activated, your pupils dilate so you can take in more light. The hair on your arm stands up to enhance your sense of contact. And, instead of needing to activate what might normally be five muscle fibers in a major muscle group, now you’re activating 20 to do the same thing.

If you were to reach out and lightly touch someone, it shouldn’t be painful. But because the nerves are so heightened, it amplifies that response and it gets processed as pain. Overtime, because the body is trying to be smart and take shortcuts, it becomes easy to activate the pain with even the slightest physical contact.

What does it feel like to have fibromyalgia?

I don’t have fibromyalgia so I can’t tell you firsthand what that feels like, but I can tell you that my patients describe it as exhausting. They’re tired. If your body was constantly feeling like it was being attacked and you’re always having to be on guard, you can imagine that would be exhausting. Mentally exhausting, physically exhausting, feeling defeated. Yet because you don’t have a cast or you’re not using a walker or some other visible signifier of this pain, you’re expected to have a smiling face on. So feeling dismissed is not uncommon.

How do you treat fibromyalgia?

One of the best tools we have for any kind of chronic pain is cognitive behavioral therapy, which involves guided techniques and meditation to help facilitate reorganization of those areas of the brain that are contributing to chronic pain memory and response.

I also discuss with all my patients the benefits of antidepressants in chronic pain, not because I don’t think they have pain but because of the pathophysiology of how the brain develops.

Serotonin is one of the brain’s natural neurotransmitters that helps with pain responses. When you’re depleted in serotonin, not only do you have less of this neurotransmitter to dampen the pain response, but it also contributes to depression and some other anxiety-inducing regulations.

Is there any physical treatment that helps?

Fibromyalgia is different for everyone. Some of my patients might say: “Oh, I would never get a massage – that would feel like torture to me.” Other patients might say: “Yeah, I think massage is great – it really does help my fibromyalgia.”

If your muscles are constantly tight because the blood is ready to run or fight (as a result of being stuck in that fight-or-flight mode), sometimes those muscles can become dysfunctional. So those patients seem to respond well to massage or myofascial relief techniques.

Ice is an anti-inflammatory which works really well on bursa – little fluid-filled sacs around the bony prominences in your body. When your muscles become dysfunctional those bursas can get inflamed, and ice is best remedy in that situation.

Putting heat on the muscles helps them to relax and loosen up versus always staying tight. If your sympathetic system has caused a dysregulation of your blood vessels, it can feel like your hands or limbs are cold. In that case, heat can feel good and open up those blood vessels.

We know that the best thing we can do for fibromyalgia is to move and exercise.

And I understand that it can be hard to do that when you’re in pain, but the key is submaximal exercise and submaximal effort – doing some exercise without wiping yourself out.

It doesn’t have to be anything extravagant. For instance, there was a very large study demonstrating that tai chi can significantly reduce the pain in fibromyalgia patients. Those are just very slow and intentional movements incorporated with meditation and deep breathing.

You normally only breathe into the upperpart of your lungs. So when you take that deep – what we call a yogi breath – you actually activate the receptors that are only located in the bottom part of your lung called the J receptors. Those receptors actually activate your parasympathetic system. So that’s why sometimes when you’re feeling kind of worked up, if you just take a nice, deep, big breath, you feel better.

Is there anything else people should know about fibromyalgia?

There’s often a stigma with fibromyalgia where patients feel like they’re being dismissed or misdiagnosed — they must think it’s just in my head because they want me to see a psychologist. And that’s not true. When we recommend these things that may seem unrelated on the surface, it’s not that we’re being dismissive about pain. The physiology of chronic pain is complex and we know that these methods are effective in helping to relieve pain.

Dr. Noel So is a physical medicine and rehabilitation physician at HealthONE’s Presbyterian-St. Luke’s Medical Center, an affiliate of HCA Healthcare.