Estimated reading time: 7 minutesFibromyalgia and symptomatic hypermobility are often debilitating conditions and have overlapping symptoms. Patients presenting with muscular and joint pain and fatigue can frequently be diagnosed with fibromyalgia when, in fact, an Ehlers-Danlos Syndrome diagnosis might have been missed.
It is understandable – fibromyalgia is more commonly known than EDS and hypermobility. Most medical practitioners have heard of the condition and can immediately tell you it is related to widespread body pain. The same cannot be said for EDS or HSD, sadly. The awareness of the complexity of symptoms that can accompany connective tissue disorders is lacking. They are often missed or misdiagnosed – not just with fibromyalgia but with other conditions too.
In the clinic, I have seen several clients who have a fibromyalgia diagnosis. Still, when we discuss their full medical history and I observe their movement, they display symptoms akin to EDS or HSD. As a movement therapist, I do not diagnose conditions and may suggest they approach their healthcare practitioner armed with information about EDS.
Diagnosis is important to ensure clients receive the appropriate care and treatments. An hEDS diagnosis is largely dependent on a healthcare practitioner’s awareness as there are currently no blood tests available to confirm it. It is a purely clinical diagnosis.
Most of my clients come to see me because they have pain and seek to manage their EDS symptoms better. My Integral Movement Method is highly suitable for chronic pain conditions like fibromyalgia too.
We asked members of The Zebra Club community if they had a Fibro diagnosis in addition to diagnosed or suspected hEDS/HSD. 53.8% said they had both. Many of those said they were diagnosed with Fibro first and took many years to find out they had hEDS/HSD or were even told they couldn’t have EDS because they have Fibro, highlighting the importance of underdiagnosis and the need for more awareness of connective tissue disorders among medical providers.
What is Fibromyalgia?
Fibromyalgia is considered a musculoskeletal disorder that is characterized by chronic pain lasting at least three months that leads to widespread tenderness at multiple sites in the body (1). It can start as a localized pain and progress to widespread chronic pain. It is also quite common impacting up to 6.6% of people (1).
The cause of Fibromyalgia is not fully clear – but it is thought to involve a number of components including the peripheral and central nervous systems and it is associated with other neurological, psychiatric, genetic, and rheumatological factors (2).
In 2010, and later modified in 2011, the recommended diagnostic criteria based the diagnosis on 19 painful regions and a series of fibromyalgia symptom assessments or symptom severity scale scores (SSS) (3). In 2016 it was recommended that the diagnostic criteria be modified (3).
The 2016 diagnostic criteria state the patient meets the fibromyalgia criteria if the following 3 conditions are met (3).
- Widespread pain index (WPI) of greater or equal to 7 (of 19) and a symptom severity scale (SSS) score of greater or equal to 5 OR a WPI of 4-6 and SSS score of greater or equal to 9
- The Symptoms Severity Score rates 3 areas on a scale of 0 (no problem) to 3 (severe, pervasive, life-disturbing). These include Fatigue, waking unrefreshed, and cognitive symptoms. Then 1 point is added if the patient has been bothered by any of these 3: headaches, pain or cramps in the lower abdomen, and depression. The total possible is 12 points (3).
- Generalized pain: they define this as pain in at least 4 of 5 regions (not including jaw, chest, or abdominal pain)
- Symptoms have been going on for at least 3 months
- “A diagnosis of fibromyalgia is valid irrespective of other diagnoses” – In this version of the criteria you can have fibromyalgia with other conditions that cause pain (This was not the case in the 2010 criteria – we will discuss below).
Widespread Pain Index – 19 Pain Regions
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How EDS connects to fibromyalgia
The overlapping symptoms and potentially shared pain mechanisms can make correct diagnosis harder. EDS is a connective tissue disorder and fibromyalgia is a chronic widespread pain disorder, but they have many things in common. Both of these conditions have widespread pain with a myofascial component or pain in the muscles and fascia. However, they are separate conditions with different diagnostic criteria (4).
Central sensitization, which is when the nervous system becomes more sensitive to pain stimuli, is thought to be a component of Fibro (6). This has also been hypothesized to be a mechanism of pain in EDS (read more about this in our blog on Nociplastic pain).
We want to make it clear that pain that occurs as a result of sensitization is just as real and valid as other types of pain – the approach to management may just be a little different.
Shared symptoms of fibromyalgia and hypermobility
Fibromyalgia and EDS share many symptoms including (2, 3,6):
- Chronic pain – this is often generalized and widespread in both conditions (5)
- Gastrointestinal issues – issues like IBS and gastroparesis
- Autonomic Dysfunction including POTS
- Headaches and Migraine
- Fatigue – this can be persistent and debilitating in both conditions
- Sleep disturbances (6)
- Anxiety and depression – both conditions are associated with higher rates of these symptoms probably due to the chronic nature and impact of quality of life (7).
Both Fibro and EDS are more common in women (6). Some differences were discovered in a systematic review of published studies. They state hEDS is more prevalent in children, whereas Fibro is more common with increasing age (2).
Recent findings on the EDS and fibromyalgia overlap
There have been some studies on the overlap between these two identifying a high rate of overlap.
- Hypermobility was found in 64.2% of patients in a study group of women with Fibromyalgia (n=93) compared to 21% in non-fibro controls based on the Beighton score (8).
- Hypermobility was found in 46.6% of women with Fibromyalgia (n=118) compared to 26.6% of non-fibro controls based on the Beighton score (9).
- In patients diagnosed with hEDS/HSD, 56.5% also had a fibro diagnosis (6)
A study specifically looking at whether there was symptom overlap between those diagnosed with Fibro and EDS found that having both Fibro and hEDS/HSD resulted in worse symptoms than just hEDS/HSD. They also found that the only symptoms that didn’t overlap (that they assessed) between the Fibro and hEDS/HSD groups included subluxations, dislocations, sprains, poor wound healing, stopping sports due to injury, and migraine (6).
Distinguishing fibromyalgia symptoms in hypermobility disorders
There does seem to be some controversy about whether you can have both EDS and Fibromyalgia. The updates to the diagnostic criteria reflect this.
According to Soloway et al., a fibromyalgia diagnosis must exclude other causes of widespread pain like infections, neurologic disorders, rheumatoid arthritis, lupus, and, according to them, Ehlers-Danlos Syndrome, Hypermobility spectrum disorder, and other connective tissue disorders. They claim connective tissue disorders are often misdiagnosed or “incorrectly include a misdiagnosis of fibromyalgia (10).”
Others readily say Fibromyalgia and EDS can occur together, and fibromyalgia may be a part of the presentation of EDS (6). In fact, the 2016 diagnostic criteria was updated by a group of specialists to include the point that you can have Fibromyalgia with other conditions – but specified that if they have Fibromyalgia, it is not meant to explain all of a patient’s medical conditions (3).
One study by Dacre Knight’s research group that looked at the overlap between the two found that symptoms are worse in people with both hEDS/HSD and Fibro compared to just hEDS/HSD. They hypothesized that fibromyalgia may be occurring secondary to EDS in response to an additional “environmental hit” like a serious infection, or trauma (physical or psychological) (6).
Both conditions have specific diagnostic criteria as mentioned above – while widespread chronic pain is a component of both. The main distinguishing thing between these two is the presence of hypermobility due to alterations in the connective tissue.
Ultimately, whether or not you can have both, or what impact this would even have on your treatment plan is a discussion best had with your medical provider.
Chronic fatigue in EDS and fibromyalgia patients
As we know, fatigue is common in EDS and fibromyalgia, and some of us can also have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
There is disagreement about whether ME/CFS chronic fatigue and Irritable bowel syndrome patients meet the diagnostic criteria for Fibro, while others see it as an overlap between similar but different conditions or that perhaps both conditions just exist in the same space (3).
Dr. Jessica Eccles points out in a recent study that underdiagnosis of hEDS/HSD can exacerbate symptoms and complications, including autonomic dysfunction, fibromyalgia, and ME/CFS (7). In this study, people with a diagnosis of ME/CFS and Fibro were recruited. Her group found that there is a large overlap between both ME/CFS and fibromyalgia and that 81% of the study set met the Brighton criteria for hypermobility (7). They conclude that there are high rates of misdiagnosis or underdiagnosis of hypermobility in people with ME/CFS and/or Fibro.
Managing overlapping symptoms of EDS and fibromyalgia
Both conditions are going to require a multi-disciplinary approach. With the complexity, it is unlikely there will be one thing that solves all issues, and a collaborative team is essential.
In the clinic, I treat the person. If that person has fibromyalgia, hEDS, fibromyalgia, and hEDS, fibromyalgia and suspected hEDS, or any other combination – I am going to be looking at a whole-body approach regardless.
I work with some very complex cases with multiple diagnoses, so it is a case of really understanding where the client is coming from, understanding their unique needs, and what we can start working on straight away.
As both conditions have chronic pain as a large part of the symptomology, I tend to start there.
- Combine gentle movement therapy with other treatments you enjoy. Acupuncture, gentle massage, and hydrotherapy are some examples that may work.
- Physical therapy – joint stabilization and muscle tone can help both
- Calming of the nervous system to work on central sensitization. Breathwork and relaxation are great ways to start this process.
- Pain education – I often spend time helping people understand pain mechanisms. Dr Russek wrote a great blog series on the types of pain.
- Pacing to support fatigue management – this includes implementing pacing techniques for energy conservation. The Zebra Club members can find excellent discussions on Pacing by OT Jo Southall and Exercise Physiologist Emily Cochrane in our Resources section.
- Sleep hygiene – working on establishing a regular sleep pattern and investigating for possible sleep apnea if appropriate.
- Autonomic dysfunction can be addressed by working with a cardiologist or autonomic neurologist. Hydration and Salt are often recommended – but please work under the guidance of a specialist. Compression garments can help circulation.
- Gastro issues – dietary adjustments may be needed. Speak with a registered professional like Lorna Ryan for proper guidance.
- Mindfulness and stress reduction – living with a chronic condition can have impacts on our mental health. Relaxation exercises, meditations, and mindfulness techniques can be very helpful.
Here is a great gentle workout that is great for chronic pain and soothing the nervous system.
FAQs
Can Ehlers-Danlos Syndrome (EDS) cause fibromyalgia?
It is not known to directly cause fibromyalgia. However, there is significant overlap in symptoms and people with EDS are often diagnosed with fibromyalgia.
Can EDS be mistaken for fibromyalgia?
EDS can be mistaken for fibromyalgia, particularly if the patient is not assessed for hypermobility. However, you can have both EDS and fibromyalgia diagnoses based on the 2016 Fibromyalgia diagnostic criteria.
Can lifestyle changes help reduce symptoms of both fibromyalgia and hypermobility?
Yes, changes can make a difference in reducing symptoms of both EDS and fibromyalgia. Consider changes to regular, gentle exercise, physical therapy, pacing, diet, sleep, and stress management.
Literature Review by Catherine Nation, MSc, PhD
Works Cited
- Alsiri, et al. (2023) The concomitant diagnosis of fibromyalgia and connective tissue disorders: A systematic review. Seminars in Arthritis and Rheumatism.
- Navarro-Pimiento & Vergara García. (2024) Ehlers-Danlos Syndrome and Fibromyalgia: Beyond Pain and Fatigue: A Systematic Review. Revista Salud Bosque.
- Wolfe, et al. (2016) 2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria. Seminars in Arthritis and Rheumatology.
- Chopra, et al. (2017) Pain Management in the Ehlers–Danlos American Journal of Medical Genetics Part C (Seminars in Medical Genetics).
- Molander, et al. (2020) Ehlers–Danlos Syndrome and Hypermobility Syndrome Compared with Other Common Chronic Pain Diagnoses—A Study from the Swedish Quality Registry for Pain Rehabilitation. Journal of Clinical Medicine.
- Fairweather, et al. (2023) High overlap in patients diagnosed with hypermobile Ehlers-Danlos syndrome or hypermobile spectrum disorders with fibromyalgia and 40 self-reported symptoms and comorbidities. Frontiers in Medicine.
- Eccles, et al. (2021) Beyond bones: The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification: an observational study. Clinical Medicine.
- Ofluoglu, et al. (2006) Hypermobility in women with fibromyalgia syndrome. Clinical Rheumatology.
- Sendur, et al. (2007) The frequency of hypermobility and its relationship with clinical findings of fibromyalgia patients. Clinical Rheumatology.
- Soloway, et al. (2024) Fibromyalgia Review: Remembering What it is and Differentiating What it is Not. Journal of Clinical and Medical Images.
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