Does Fibromyalgia Get Worse?

Or is there Hope for Improvement?

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Question: My fibromyalgia symptoms just seem to be getting worse every year. I'm really worried that I will continue to go downhill and lose what abilities and quality of life I have left. Is fibromyalgia a progressive disease? Does it always get worse, or is there hope for getting better?

Answer: Fibromyalgia is not generally considered a progressive disorder, but in some cases it does get worse over time. It's not, however, a condition with a predictable course.

In most people, fibromyalgia symptoms go through flares (when symptoms are severe) and remissions (when symptoms are minimal or absent). Some people find successful treatments that dramatically reduce the severity of their flares as well as making them fewer and farther between.

Some people get to a point where they consider themselves "cured" or say their fibromyalgia is "reversed." My personal preference is to call this a long-term remission. That's because a lot of people who get to a symptom-free or nearly symptom-free place do have symptoms return at some point down the road.

Several years ago, I went into a long-term remission that lasted several years. Then, developed severe pain from an overlapping condition and it re-activated my fibromyalgia. Fortunately, I've been able to find treatments that have put me back in a good place, with mild symptoms and very few of them. Still, my cognitive dysfunction and fatigue can really kick up when I'm under a lot of stress or if I over-exert myself.

However, some of us aren't able to find treatments that work well, or treatments may stop being effective after a while. In those cases, symptoms may remain about the same long-term or they may get worse.

For a long time, some experts have said that about a third of us with this condition make significant improvements, another third stay the about same long term, and the remaining third see significant increases in their symptoms.

In 2018, we finally got some published research on the long-term prognosis of fibomyalgia. It's not a huge study, but it does provide us with some numbers, at least. The study, which was published in the medical journal Clinical Rheumatology, followed up on people with primary fibromyalgia (meaning it wasn't caused by another pain condition) 26 years after their diagnosis.

Researchers sent a questionnaire to those people and received answers from 28 of them. Of those 28:

  • Three people (11 percent) reported complete healing
  • The other 25 said that, except for pain and ache, their symptoms had generally become less severe
  • Overall condition and self-reported functional ability did not appear to deteriorate
  • Nearly a quarter of them said they'd had at least one symptom-free period lasting for at least a year
  • The symptom of sleeplessness increased the most over time

Meanwhile, other researchers are working to establish profiles for different sub-types of fibromyalgia. This condition varies greatly from person to person and so does the effectiveness of treatments. Most experts believe that's because we have multiple types that need to be treated differently.

One example of this is a study published in the journal Rheumatology. The researchers looked at almost 500 people with the condition and came up with five different profiles determined by symptoms and their severity. Once sub-types like these are better established, we may be able learn more about the prognosis of each individual profile and what factors influence how things progress or improve.

A Word From Verywell

Unfortunately, that's about as well as we can answer the question right now. As research progresses, though, we should learn more about the "typical" course of this condition and how to improve our odds of making real improvements.

Also, remembering that we're learning more about the causes of fibromyalgia and how to treat it all the time. We have more options than ever. The best thing we can do is keep experimenting with treatments and management techniques until we find what works best for us, and hope that researchers keep making progress.

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