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Hypermobility and EDS

Checked: 23-02-2022 by Rob Adams Next Review: 22-02-2024

Overview

Joint hypermobility is a common condition and can often be diagnosed and managed in primary care. The vast majority of people with hypermobile joints do not require onward referral and can be reassured.

Guidelines have been developed involving rheumatologists from UHBW and NBT, physiotherapists and geneticists (see section below).

Who to Refer

'Generally the advice should be to demedicalise and reassure. There should be very few situations where referral to rheumatology would be useful.’ Emma Clark (consultant rheumatologist at NBT)

Please see the Bristol & Bath guidelines for management of adults with isolated musculoskeletal hypermobility (updated Jan 2022)

To help clinicians decide whether an adult with musculoskeletal hypermobility requires further investigations or onward referral for identification of an underlying collagen abnormality please see the Bristol & Bath guidelines for onward investigation/referral for adults with musculoskeletal hypermobility (October 2016).

Red Flags

Personal history of:

Aneurysm
Dissection of artery
Spontaneous pneumothorax
More than 7 long bone fractures
Obstetric history of uterine rupture

Family history of:

Unexplained sudden death before aged 50
Thoracic aneurysm or dissection
At least 2 relatives (one of them 1st degree) with aneurysm or dissection at any age
More than 7 long bone fractures in a close relative

Examination findings of:

Cardiac murmur
True cutis laxa

What to do before referral

Use the Beighton score (1) to establish if a patient has hypermobility.

Review the red flags and guidelines in the Who to Refer section above. If there are red flags, consider referral for an echocardiogram or to clinical genetics or the congenital heart disease clinic as indicated..

If referral is not indicated then provide reassurance and encourage physical activity. See the general Physical Activity Guidelines from the government. The Patient leaflet for people with Fibromyalgia also has some useful advice and lists local resources.

If symptoms persist then manage pain with simple analgesia and consider a referral to a physiotherapist initially. If further advice or support is necessary then please consider the following options:

Fibromyalgia guidelines
Pain services page
ME/CFS services - only use this service if their referral criteria are met.
Psychological support: See NHS Talking Therapies

HSD and EDS

If Hypermobility spectrum disorder (HSD) or Ehlers Danlos syndrome (EDS) is suspected then see the EDS diagnostics page on the Ehlers Danlos Society website which includes a link to the Beighton score and other diagnostic criteria. There is no genetic test for EDS. If HSD or EDS is diagnosed then please manage symptoms according to the Bristol & Bath guidelines for management of adults with isolated musculoskeletal hypermobility (updated Jan 2022) or see links to fibromyalgia or pain services as above.

Referrals to clinical genetics are very rarely required and should only be made if there are red flags as indicated in the Bristol & Bath guidelines for onward investigation/referral for adults with musculoskeletal hypermobility (October 2016).

Services

There are no specific services available in BNSSG for management of patients with Hypermobility or Ehlers Danlos syndrome.

The specialist service for patients with hypermobility that used to be provided in Bath is no longer available.

Resources

(1) Assessing Joint Hypermobility - The Ehlers Danlos Society (ehlers-danlos.com)

Efforts are made to ensure the accuracy and agreement of these guidelines, including any content uploaded, referred to or linked to from the system. However, BNSSG ICB cannot guarantee this. This guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, in accordance with the mental capacity act, and informed by the summary of product characteristics of any drugs they are considering. Practitioners are required to perform their duties in accordance with the law and their regulators and nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.

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