Tag Archives: EDS

The Impact of Proprioception on Pain

The association between muscle strength and activity limitations in patients with the hypermobility type of Ehlers–Danlos syndrome: the impact of proprioception: Disability and Rehabilitation: 24 Jun 2016 – Free full-text article

The patients diagnosed with Ehlers–Danlos Syndrome Hypermobility Type (EDS-HT) are characterized by pain, proprioceptive inacuity, and muscle weakness, potentially leading to activity limitations.

Twenty-four EDS-HT patients were compared with 24 controls.


  • Muscle strength is associated with activity limitations in EDS-HT patients.
  • Joint proprioception is of influence on this association and should be considered in the development of new treatment strategies for patients with EDS-HT.

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Combating Wear and Tear on Our Collagen

Combating Wear and Tear on Our Collagen – University of Utah – Mar-2017

This article explains much of what causes our pain from EDS. With our defective collagen, even small stresses can cause “sub-failure damage” which accumulates until the tissue fails completely.

University of Utah bioengineers detect early signs of damage in connective tissues such as ligaments, tendons and cartilage

By the time someone realizes they damaged a ligament, tendon or cartilage from too much exercise or other types of physical activity, it’s too late. The tissue is stretched and torn and the person is writhing in pain.
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Neck Pain and Ehlers-Danlos Syndrome

Neck Pain and Ehlers-Danlos Syndrome | Pain Neck Blog – PainNeck.Com by LMatthews – December 12, 2011

Ehlers-Danlos Syndrome may be the cause of neck pain in some patients and at least three of the most common types of the disorder can contribute to chronic pain in the neck.

ligaments, blood vessels, joints, internal organs, skin, and the inter-cellular matrix are affected by the defect leading to a variety of symptoms.

it is well understood that individual experiences of the disease are extremely variable.

Most patients suffering from neck pain due to Ehlers-Danlos syndrome will also be experiencing pain in other joints of the body and a degree of hyper-flexibility that can cause them to become injured even performing fairly routine activities.

It is thought that EDS is under-diagnosed due to the overlap of symptoms with other illnesses, general aches and pains, and the complexity of the effects of the connective tissue disorder.

Chronic Pain and Joint Degeneration

The severity of the pain and the effect of this on a patients’ quality of life are variable with some requiring significant intervention to prevent serious joint damage occurring

The chronic pain which usually characterizes the disease is often reported as worsening during a patient’s lifetime, perhaps due to progressive wear and tear and damage to the joints.

Neck pain may then result from

due to vascular manifestations of Ehlers-Danlos syndrome.

Effects of Ehlers-Danlos Syndrome

Disruption to sleep and physical activity are two of the most frequently reported effects of EDS, both of which have wide-ranging ramifications for general health and well-being.

The connective tissue disorder also affects patients’ ability to study and to work, and almost half of all patients report that Ehlers-Danlos syndrome adversely affects their sex life

Hyperflexibility, Neck Pain, and EDS

Hypermobility type 3 Ehlers-Danlos syndrome is usually considered the least severe of the classifications of EDS although it is still likely to cause significant pain and disruption in a patient’s life

Dislocations and subluxations are common, occurring with even minor trauma or no apparent cause in some cases but frequently resulting in severe pain

Joint degeneration is common, as is chronic pain not connected to specific dislocations or osteoarthritis.

Patients often bruise very easily when they have Ehlers-Danlos syndrome and many have difficulty maintaining bone density, leading to the increased risk of osteoporotic fractures in later life.

Neck Pain Relief in Ehlers-Danlos Syndrome

Treating EDS involves physical therapy appropriate for the degree of disability and symptom severity in each patient.

Where mobility is affected, patients may use braces, wheelchairs, and scooters but are usually not advised to rely on crutches, canes, or walkers as these can put extra strain on the upper body.

Pain medication is often prescribed but patients may have a difficult time finding a suitable analgesic with manageable side-effects

A combination of therapies is usually beneficial in order to reduce acute suffering whilst attempting to reduce future injury or degeneration of joints. Low-resistance exercise can be helpful in maintaining the strength and stability of joints and ergonomics are very helpful in reducing strain whilst at work or study.

Spinal Stenosis, Pinched Nerves, and Neck Pain

Neck pain from Ehlers-Danlos syndrome can be a result of

  • pinched nerves in the neck,
  • muscle strains or sprains from accidental hyperextension,
  • ischaemia following damage to the vasculature in the neck and cervical spine, and even
  • fracture, subluxation, and spinal stenosis resulting from the condition.

Fibromyalgia, CFS, EDS and Neck Pain

Myofascial spasm and muscular pain is also seen in many patients, with aching joints that throb or are stiff and tender. This is particularly common in the spinal muscles and can contribute to back and neck pain

Hypermobility in the cervical spine may produce similar symptoms to those of whiplash associated disorder as the spinals structures are repeatedly exposed to excessive movements which wear down the cartilage, intervertebral discs, and bones in the spine

Neuropathy and Neck Pain in Ehlers-Danlos Syndrome

Neck pain with neuropathy is also possible in EDS, with radicular pain such as pins and needles in the arms and hands, numbness, burning sensations, and feelings of heat or cold also experienced by some.

Nerve conduction studies are not commonly used during diagnosis and the nerve fibers may be normal in patients with the pain and altered sensation originating instead from spinal nerves that are pinched by 

Neck pain and headache are not uncommon and are thought to be caused by

  • tension in the neck muscles,
  • reduced circulation to the head and neck through vascular damage and blood vessel compression, and
  • possible dysfunction on the temporomandibular joint (the jaw).

Managing EDS

Where neck pain is caused by Ehlers-Danlos syndrome, patients are likely to require physical therapy, pain medications, and assistive devices as well as regular check-ups to monitor the progression of the condition.

Pain medications are thought to be underprescribed in cases of Ehlers-Danlos syndrome and physicians are advised to tailor medication to the subjective experience of patients rather than simply taking objective findings into account.

Neck Pain Relief for Patients with Ehlers-Danlos Syndrome

Patients may be given the best chance of managing their symptoms effectively when their condition and all direct and indirect effects are taken into consideration.

Treatment of neck pain from Ehlers-Danlos syndrome needs careful management in order to reduce the risks of nerve damage and spinal cord compression.

Am J Genetics: Special Issue: The Ehlers-Danlos Syndromes

The American Journal of Medical Genetics devoted it’s March 2017 Special Issue to Ehlers-Danlos Syndrome.

This page is a copy of the Table of Contents from the Journal with links to each article.

American Journal of Medical Genetics
Special Issue: The Ehlers-Danlos Syndromes:

  • Reports from the International Consortium on the Ehlers-Danlos Syndromes – 
  • March 2017
  • Issue edited by: Brad T. Tinkle, Fransiska Malfait, Clair A. Francomano, Peter H. Byers

Issue Information

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Pain and Ehlers-Danlos Syndrome (EDS): A Guide

Pain and Ehlers-Danlos Syndrome (EDS): A Guide – Joint Issues – from ehlersdanloscontemplations.wordpress.com

Why Write About Pain

Pain is debilitating. Pain can permeate many aspects of our lives. Pain can change the course our life takes and cause long-term psychological effects. We all deal with chronic pain in a way that we tailor to our individual circumstances.

My hope is that this article helps you to find your own path for dealing with your individual pain and to encourage you to make informed decisions and ask questions when something isn’t working for you.   Continue reading

2017 EDS articles – free full-text PDFs

American Journal of Medical Genetics Part C: Seminars in Medical Genetics

The PDFs below were taken from the American Journal of Medical Genetics Part C: Seminars in Medical Genetics Supplement to the American Journal of Genetics – Hypermobile EDS

Issue Information: Table of Contents, Volume 175C, Number 1, March 2017 (pages 1–2)


The international consortium on the Ehlers–Danlos syndromes (pages 5–7)
Lara Bloom, Peter Byers, Clair Francomano, Brad Tinkle, Fransiska Malfait and on behalf of the Steering Committee of The International Consortium on the Ehlers-Danlos Syndromes   Continue reading

Theories About Cause of EDS Pain

Below are 2 PubMed articles insinuating that EDS pain is due to central sensitization or general extreme pain sensitivity.

I still insist that EDS pain is mechanical (due to lax tissues) and/or biochemical (because cell walls are also made from our defective connective tissue). However, we cannot know if the amount of pain we feel is in “normal” proportion to the nociceptive stimuli we experience.

The question is: do we have more pain than average or are we just more sensitive to average pain?

In the “good old days”, before I had to take pain medication around the clock, I seemed extremely pain sensitive. Even a wrinkle in the bedsheet would become painful if laid on it too long.   Continue reading

2017 EDS International Classification

2017 EDS International Classification – Finally!

As part of this work, the terminology of joint hypermobility and related disorders is summarised and a group of hypermobility spectrum disorders is proposed.

For further information please visit the links below:


EDS: Less Strength and Worse Proprioception

The association between muscle strength and activity limitations in patients with the hypermobility type of Ehlers–Danlos syndrome: the impact of proprioception: Disability and Rehabilitation: Vol 0, No 0 – 24 Jun 2016 – free full-text article

The patients diagnosed with Ehlers–Danlos Syndrome Hypermobility Type (EDS-HT) are characterized by pain, proprioceptive inacuity, muscle weakness, potentially leading to activity limitations.

In EDS-HT, a direct relationship between muscle strength, proprioception and activity limitations has never been studied.

The objective of the study was to establish the association between muscle strength and activity limitations and the impact of proprioception on this association in EDS-HT patients.   Continue reading

Headaches common with EDS

I’ve noticed an interest in headaches on this blog, so I’ve collected a sample of posts covering different types of headaches to which people with EDS are susceptible.

The looseness in the joints of our neck can cause problems:

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