Tag Archives: EDS

Exercise Hyped as Universal Solution to Chronic Pain

Is exercise the new snake oil? or just a dirty word? | HealthSkills Blog – by Bronnie Thompson – Aug 2020

This is a great article explaining that while exercise is generally “good for you”, it does very little to relieve pain and disability. The studies that supposedly prove this are problematic and cited more than they deserve to be.

Exercise can do all these wonderful things – help you lose weight, reduce heart disease, moderate insulin and blood glucose levels, improve your mental health, and yes! reduce pain and disability when you’re sore. (check this list out)

The claims sound suspiciously similar to the claims made by old snake oil merchants.

Qualitative researchers have often investigated how people with pain view exercise: Continue reading

Advice for Newcomers to Diagnosis of EDS

I was recently asked by Dr. Tennant’s group, the Intractable Pain Syndrome Research & Education Project:

  • What are the 6 things you’d recommend that have helped you with EDS, for someone who is newly diagnosed with EDS?
  • What would you tell them?

This is the advice I would give the newly diagnosed:

  1. The relief you initially feel at finally knowing what’s been causing you so much grief for so much of your life will quickly fade as the reality of dealing with an incurable degenerative illness sinks in.

Continue reading

EDS: Analysis of Current Treatment Options

Ehlers-Danlos Syndrome: An Analysis of the Current Treatment Options – Pain Physician – 2020

Background: Ehlers-Danlos syndrome (EDS) is a multifaceted disease that can present with a variety of types of pain.

Unfortunately, both the mechanisms and treatments for pain are poorly understood. The proposed treatments for the various musculoskeletal pain syndromes in EDS have had variable success, and it becomes much more imperative to better define and evaluate the current treatment modalities in treating this debilitating disease.

Objectives: The purpose of this study was to investigate the currently available treatment modalities for patients with EDS and their efficacies in pain and symptom relief.  Continue reading

Pain Management in the Ehlers-Danlos Syndromes

Pain Management in the Ehlers-Danlos Syndromes (for Non-experts) | The Ehlers Danlos Society : The Ehlers Danlos Society – 2017

Show this to your doctor if they think EDS isn’t painful:

Long-term (chronic) pain in the Ehlers-Danlos syndromes (EDS) appears early, is common, and may be severe. Pain may be linked to the level of joint mobility, how often joints come out of position (dislocate or sublux), how prone the person is to injury, previous surgery, muscle pain, and may become long-term.

Pain can be limited to muscles or can be more widespread and may occur over a short period or continue over long periods of time.

EDS can lead to just about any kind of pain there is: localized or widespread, dull or sharp, and last a long time or just a short while or even be intermittent. There’s an endless variety and I’m always amazed when yet another new pain makes its presence felt in a new place. Continue reading

EDS: Severe GI Symptoms, Reduced Quality of Life

Hypermobile EDS Linked to Severe GI Symptoms, Reduced Quality of Life – by Jose Marques Lopes, PhD – September 12, 2018

I’m glad to read this and see that “it’s not only me” who has constant upsets in my guts. I was having these problems even when I was still in college, long before (30 years) I found out I had EDS.

Patients with hypermobile Ehlers-Danlos syndrome (hEDS) have an increased prevalence and severity of gastrointestinal (GI) symptoms, and use more potentially damaging medications than healthy people without the disorder, according to a new study.

Studies have reported frequent occurrence of GI symptoms in patients with connective tissue hypermobility, especially in patients with hEDS.

Continue reading

Hypermobile Ehlers-Danlos – NIH GeneReviews

Hypermobile Ehlers-Danlos Syndrome – GeneReviews® – NCBI BookshelfHoward P Levy, MD, PhD. – Last Revision: June 21, 2018.

This “book,” published by the NIH, is a  good description of the medical aspects of EDS. The overview below is a quick summary.


  • Benign Joint Hypermobility Syndrome,
  • EDS Hypermobility Type,
  • EDS Type III,
  • Ehlers-Danlos Syndrome Hypermobility Type,
  • Ehlers-Danlos Syndrome Type III,
  • hEDS,
  • Joint Hypermobility Syndrome

Hypermobile Ehlers-Danlos syndrome (hEDS) is generally considered the least severe type of EDS, although significant complications, primarily musculoskeletal, can and do occur.   Continue reading

hEDS Deficit in Pain Control Mechanisms

hEDS-related Pain May Be Linked to Deficit in Pain Control Mechanisms – by Marta Figueiredo – June 2020

Pain in people with hypermobile Ehlers-Danlos syndrome (hEDS) likely is the result of an impaired pain suppression system that may lead to widespread pain, a study shows.

Well, that would certainly explain a lot!

contradict a previous theory that EDS-related pain was caused by damage in nerve fibers. Continue reading

The best treatment(s) for chronic primary musculoskeletal pain

The best treatment option(s) for adult and elderly patients with chronic primary musculoskeletal pain: a protocol for a systematic review and network meta-analysis –  free full-text /PMC6842192/ – Nov 2019

When researchers try to design studies about pain without differentiating between different kinds of pain, which I think invalidates those studies right away.

For myself, I’ve noticed several types of pain and each requires a different treatment:

  • For the pain from subluxations in joints, opioids work.
  • For my cervicogenic headaches, neck exercises work (and opioids initially).
  • For muscle spasms along the spine, muscle-relaxants are effective.
  • For the burn in muscles being used, nothing has worked.

Different pain requires different treatment, and I haven’t seen any studies about “pain” that rigorously control what kind of pain subjects have.  Continue reading

Psychiatric Disorders From Ehlers–Danlos Syndrome

Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers–Danlos syndrome or hypermobility syndrome and their siblings | BMC Psychiatry | Full Text – 04 July 2016

It looks like we inherit not only chronic physical pain but also a fourfold increased risk of both anxiety and depression.

Somehow, it makes sense to me that having a body “too loose” and being physically “unstable” would also manifest as being mentally “unstable”, that along with our physical pain, we also suffer from mental pain.


To assess the risk of psychiatric disorders in Ehlers-Danlos syndrome (EDS) and hypermobility syndrome.   Continue reading

Genetic explanation for common group of symptoms

NIH scientists uncover genetic explanation for frustrating syndrome | National Institutes of Health (NIH)

When I first read these symptoms, I immediately thought of EDS with POTS and MCAS, which is a common combination.

Scientists at the National Institutes of Health have identified a genetic explanation for a syndrome characterized by multiple frustrating and difficult-to-treat symptoms, including

  • dizziness and lightheadedness,
  • skin flushing and itching,
  • gastrointestinal complaints,
  • chronic pain, and
  • bone and joint problems.    Continue reading