4 Reasons Why Fibromyalgia May Be More Harmful Than You Think

What is fibromyalgia? Is it a disorder, a syndrome, an autoimmune disease, or a neurological condition? Is it a result of carrying too much extra weight? I certainly don’t agree with the last one, but unfortunately, many doctors are quick to blame all sorts of pain on being overweight.

Fibromyalgia can often be a misdiagnosis

Fibromyalgia is hard to describe because it has not been well characterized in the medical community. In fact, according to the Mayo Clinic, the only criteria necessary for a diagnosis is widespread bodily pain in 4 regions of the body for at least 3 months.¹

Doctors might dismiss fibromyalgia

How many diseases do you think can cause widespread chronic pain? I’d wager there’s a great many – and lupus is one of them. I had a gamut of tests run in 2015 and ended up being diagnosed with fibromyalgia. But now, looking back at the blood work and symptoms, I know I should have been diagnosed with lupus. The doctor was too quick to apply the fibromyalgia label. I suffered for another 2 years before finding out I had lupus and starting treatment.

Fibromyalgia is supposed to be a diagnosis of exclusion – the disease you arrive at when you’ve exhausted all other options. A doctor should sift through all the possible diagnoses to make sure nothing is missed before moving on to fibromyalgia.

But that’s not what is happening to patients. Sometimes this means a more dangerous and cruel disease, such as lupus, has escaped notice and isn’t being treated. This can cause real damage to a person’s body. While fibromyalgia is certainly harmful on its own, active lupus can damage organs quickly and cause irreversible harm.

Many doctors do not like to treat fibromyalgia

When I was told I had fibromyalgia the doctor flat out blamed it on my excess weight and anxiety issues. I sat there, feeling intimidated, looking at my swollen sausage fingers, wondering how extra weight and anxiety could cause such extreme symptoms like joint pain and swelling, difficultly breathing (pleurisy), and coma-like fatigue.

I felt dismissed. He acted like the pain was entirely my fault. It messed with my head. Was I doing it to myself? Did I just need to eat better and learn how to cope with my anxiety?

I wish that someone had told me that it was the opposite. My physical pain and suffering were only exacerbating my ability to eat well and deal with stress. Treating my underlying disease was the best way to reverse my course.

Fibromyalgia treatments are not great

Once fibromyalgia was in my medical file I started having all sorts of problems. Doctors would refuse to see me or take me seriously. They would tell me to do yoga, lose weight, eat better, go to therapy, improve my sleep habits, and so on. They were basically saying, you need to fix yourself and I don’t need to be involved.

Even after I had proof of an autoimmune disease I still had doctors refusing to treat my symptoms as anything other than fibromyalgia.

4. There aren’t great treatments available.

The first thing you are likely to hear after “you have fibromyalgia” is your options for antidepressants. I tried 3 different ones before refusing to take them for pain because they weren’t helping. Some doctors will only use antidepressants or perhaps anti-seizure drugs (such as Lyrica or gabapentin) to treat fibromyalgia.

Many people can’t tolerate those medications or find that their side effects only add more problems instead of resolving them. Even if you truly only have fibromyalgia, you still have real pain and you deserve real treatment for that pain. Without pain relief, it is sometimes not possible to start functioning well again and make lifestyle changes that can help. Pain can be cyclical; pain can lead to lack of sleep which leads to more pain which leads to less movement which leads to more pain… you get the idea.

Don't give up on your lupus-fibromyalgia journey

If you’ve been diagnosed with fibromyalgia and you think there’s more to your story, don’t stop looking for answers. Keep taking your symptoms, especially any new ones, to a doctor that will listen. Fibromyalgia is harmful all on its own, but letting it hide another disease from view can be dangerous.