The Link Between Fibromyalgia and Ehlers Danlos Syndrome

There may be a connection between Fibromyalgia and Ehlers Danlos Syndrome (EDS). Both are associated with chronic pain and can profoundly affect quality of life. Let’s define both conditions briefly before we dive in.

What is Fibromyalgia?

Fibromyalgia is a syndrome of chronic widespread musculoskeletal pain that is accompanied by sleep disturbances, depression, fatigue, and multiple other symptoms. Many factors are involved in the development of Fibromyalgia. But Fibromyalgia is classically described as a pain-processing problem, with amplification and hypersensitivity to pain. Low grade inflammation and a hyperactive stress system have gained attention as principal contributors to Fibromyalgia as well.

What is Ehlers Danlos Syndrome?

The Ehlers Danlos Syndromes (EDS) are conditions that affect the connective tissue —the tissue that supports the body organs and holds the body structures together. There are 13 types of EDS, and each type has different symptoms. Most people with EDS have joint instability (hypermobility) and pain, especially those with hypermobile EDS (hEDS), the most common type. Sometimes a person with symptoms does not meet all the strict criteria for the diagnosis of hEDS and is diagnosed with hypermobility spectrum disorders (HSD). For this discussion, we will put hEDS and HSD together (hEDS/HSD).

Based on those definitions, one could think that Fibromyalgia and EDS can be easily distinguished from one another, but that’s not the case in real life.

How can Fibromyalgia and EDS be related?

Fibromyalgia and hEDS/HSD are not the same, but many patients can have both. As such, at the clinic, it’s important to assess patients with EDS for Fibromyalgia and patients with Fibromyalgia for EDS.

Are people with EDS prone to Fibromyalgia? Does Ehler Danlos cause Fibromyalgia?

People with EDS are more likely to get Fibromyalgia. Research suggests that hEDS/HSD may lead to Fibromyalgia. This is supported by the fact that hEDS/HSD are usually diagnosed at an earlier age than Fibromyalgia. The overlap is such that more than half of patients (56%-88% seen on studies) can have both hEDS/HSD and Fibromyalgia.

What are the similarities between EDS and Fibromyalgia?

EDS and Fibromyalgia show great similarities. Symptoms in common include widespread pain, fatigue, migraine, headaches, temporomandibular joint disorders, sleep disturbances, gastrointestinal issues, autonomic dysfunction, anxiety and depression. In addition, both conditions are more commonly seen in females. Due to these similarities, EDS may be misdiagnosed as Fibromyalgia.

Pain in EDS vs Pain in Fibromyalgia

Pain in hEDS is usually moderate to severe and occurs in multiple sites. In a study, all participants with hEDS reported pain. Of these, most had a “progressively worsening pain”. Even so, people with fibromyalgia have shown higher scores for perceived severity and intensity of pain than people with hEDS/HSD.

What is the difference between EDS and Fibromyalgia?

Certain symptoms, things that happened in the past, and the way symptoms have progressed over time can provide clues to help differentiate Fibromyalgia from Ehlers Danlos.

For example, fragile skin, poor wound healing, and easy bruising are commonly seen in EDS but not often in Fibromyalgia. On the other hand, Fibromyalgia may occur after an infection or a traumatic event as opposed to EDS where symptoms start at a younger age with no specific events at onset.

Joint hypermobility (being “double-jointed”) is characteristic of EDS, whereas stiffness is more likely seen in Fibromyalgia. But this can get confusing because people with EDS can go stiff over time. This is why we need to go back in time to see how everything started. For example, the diagnosis may point to EDS in people who were very flexible or had repeated joint dislocations during childhood. We may also want to see if there is family history of dislocations, EDS, or Fibromyalgia.

Are EDS or Fibromyalgia Hereditary?

The Ehlers-Danlos syndromes are hereditary. Genetic testing can help confirm EDS, but the most common type, hEDS/HSD, does not have an identified gene yet.

Fibromyalgia tends to run in families. Many factors contribute to Fibromyalgia and genetics seems to be one of those factors. There is no genetic testing for Fibromyalgia.

Could both EDS and Fibromyalgia be part of the same disease spectrum?

EDS and Fibromyalgia are currently classified as separate diseases. But we could keep an eye and open mind as we learn more about each disease and see how research unfolds.

Establishing a diagnosis for hEDS/HSD and for Fibromyalgia requires time, a thorough history, physical exam, and workup with laboratory and/or imaging studies. Although both conditions share more similarities than differences, it is possible and crucial to establish an accurate diagnosis so patients can have the most appropriate management.

Could you have EDS, Fibromyalgia, or both?

If you have symptoms that may suggest hEDS or Fibromyalgia and you are still trying to figure it out, we’re here to help. Reach out today to schedule your complete evaluation at Getting Well Physiatry in Orlando, Central FL.

References inserted as links within the text.