What is Hypermobility Spectrum Disorder? In this post I share what it is, prevalence, symptoms, and my experience with it.
This is a fairly in depth post, if you’d like the PDF version (which includes more detail), get it here.
Hypermobility Spectrum Disorder (HSD) is a connective tissue disorder where joints, tendons and ligaments are more flexible than normal, leading to pain, dislocations, and instability.
It also leads to a range of other symptoms. Being a spectrum, it ranges from asymptomatic to extremely problematic. It becomes a disorder when it causes considerable problems.
Hypermobile Ehlers Danlos syndrome (hEDS) is a genetic connective tissue disorder with additional diagnostic criteria – including fragile tissues, skin hyperextensibility and is usually more severe than HSD.[1] Though there appears to be a growing number of researchers and physicians who would combine both hEDS and hypermobility spectrum into one condition.
Prevalence of Hypermobility Spectrum Disorder
It is estimated that around 3% of people, worldwide, have hypermobility disorders.[2] But it is under recognized and underdiagnosed. Men and women both get hypermobility disorders, with women having a higher chance, “According to Castori and Hakim, generalized hypermobility may be observed in the joints of 2–34% of males and 6–57% of females”[3]
Hypermobility can be widespread, peripheral or restricted to certain joints.
Symptoms of Hypermobility Spectrum Disorders
- Chronic joint pain
- Muscle pain and spasms
- Chronic back and neck pain
- Neuropathic pain
- Increased risk of injury like sprains and strains
- Fatigue – including from minimal exertion
- Brain fog/cognitive dysfunction
- Dysautonomia including postural orthostatic tachycardia syndrome (POTS)
- Low blood pressure
- Chest wall pain
- Shortness of breath
- Stomach/gastrointestinal issues
- Food sensitivities/intolerances
- Getting sick more easily/immune involvement
- Menstrual irregularities, including painful periods
- Urinary/bladder issues
- Headache or migraine
- Sleep issues
- Easy bruising
- Skin hyperextensibility
- Stretch marks, not related to weight gain
Sometimes these conditions can cause problems with your eyes, heart or blood vessels.
Overlapping conditions
It sounds familiar to those with fibromyalgia and ME/CFS, there is a lot of overlap and they are often misdiagnosed as each other. “Eccles et al. found that 81% of fibromyalgia patients (n = 64) were hypermobile based on Beighton scores but only 18% were diagnosed with hEDS based on the 2017 diagnostic criteria” [see 2]
My Experience
The word “hypermobility” had come up a few times in recent years – some 20 years after my first symptoms manifested. After being dismissed by a rheumatologist in 2023, I left it alone. The chiropractor was helping me to manage my subluxations and my strength training routine (micro though it is) was contributing to less pain.
One appointment with my chiropractor I noticed that she talked about my hypermobility like it was a known fact. I asked if I was hypermobile in my than just my pelvis. She said yes. She believed it was the underlying cause of all my symptoms.
I went home and researched hypermobility. Going through all of the Ehlers Danlos Society resources on the symptoms and treatments for hypermobility the lightbulbs were clicking on. Every symptom made sense. More than fibromyalgia ever had (I had been questioning that for so long). I went to my doctor, who’d been seeing me for a few years, and told her my findings. Rather than referring me on or fobbing me off, as I half expected, she went through all of it with me. All of the diagnostic criteria, everything.
And she agreed. I have hypermobility – suspected hypermobile Ehlers-Danlos Syndrome. But the kick is that rheumatologists are the only public specialty that could manage hypermobility, but they are not currently taking referrals for it. They are so under resourced that they must focus on what they can treat. So I have that question mark while I wait to go back and be referred to a private rheumatologist and then see them.
Treatments and What Next
However that turns out, it’s all making so much sense. The right label makes such a difference in making informed decisions and improving my quality of life.
As for treatments – we treat by the symptom. So other than trying to protect my joints (and noticing how often I’m treating them poorly) it’s the same management plan.
I’m working on my next book, but as I am living the story still, it’s hard to say when I will complete it. Please do stay up to date with the journey. Grab my free Yoga Nidra Guided Meditation and join the newsletter list to get loads of resources to support you with chronic pain, fatigue and insomnia.
This is a fairly in depth post, if you’d like the PDF version (which includes more detail) get it here.
References
[1]Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. Am Fam Physician. 2021 Apr 15;103(8):Online. PMID: 33856176.https://www.aafp.org/pubs/afp/issues/2021/0415/p481-s1.html
[2] Fairweather D, Bruno KA, Darakjian AA, Bruce BK, Gehin JM, Kotha A, Jain A, Peng Z, Hodge DO, Rozen TD, Munipalli B, Rivera FA, Malavet PA, Knight DRT. High overlap in patients diagnosed with hypermobile Ehlers-Danlos syndrome or hypermobile spectrum disorders with fibromyalgia and 40 self-reported symptoms and comorbidities. Front Med (Lausanne). 2023 Apr 25;10:1096180. doi: 10.3389/fmed.2023.1096180. PMID: 37181352; PMCID: PMC10166812. https://pmc.ncbi.nlm.nih.gov/articles/PMC10166812
[3] Ituen OA, Anieto EM, Ferguson G, Duysens J, Smits-Engelsman B. Prevalence and Demographic Distribution of Hypermobility in a Random Group of School-Aged Children in Nigeria. Healthcare (Basel). 2023 Apr 11;11(8):1092. doi: 10.3390/healthcare11081092. PMID: 37107926; PMCID: PMC10137997.
