Tag Archives: EDS

Complex Chronic Pain Disorders

Complex Chronic Pain Disorders By Don L. Goldenberg, MD – Feb 2019

The pathophysiology of and approaches to 3 commonly seen pain conditions: CRPS, EDS, and SFN.

  • Complex regional pain syndrome (CRPS),
  • Ehlers-Danlos syndrome (EDS), and
  • small fiber neuropathy (SFN)

are three important and complex chronic pain disorders.   Continue reading

12 ‘Taboo’ Symptoms of Ehlers-Danlos Syndrome

12 ‘Taboo’ Symptoms of Ehlers-Danlos Syndrome – Yahoo News, syndicated from The Mighty – by Cassidy Colbert – Feb 2019

I’m encouraged to see this article about my specific painful genetic disorder discussed on Yahoo News, and that Yahoo News is syndicating content from The MIghty, an online publication filled with our stories.

When many people talk about Ehlers-Danlos syndrome, the symptoms they often focus on are hypermobile joints and elastic, velvety skin.

However, since EDS is a connective tissue disease (and connective tissue is found throughout most of the body), the condition can cause a plethora of other symptoms – some of which may be considered “taboo,” and can be more difficult to talk about.   Continue reading

Personality differences from intra‐cortical myelin levels

People With Advantageous Personality Traits Have More Nerve-Fibre Insulation (Myelination) In Key Brain Areas – By Christian Jarrett – Jan 2019

I’ve always wondered why a physical defect of connective tissue, as we have with EDS, is linked to anxiety (my life’s greatest plague after pain). This article shows that a lack of good insulation (myelin) around brain neurons can lead to distinct negative personality traits.

Researchers are getting closer to understanding the neurological basis of personality. For a new paper in the Journal of Personality, Nicola Toschi and Luca Passamonti took advantage of a recent technological breakthrough that makes it possible to use scans to estimate levels of myelination in different brain areas (until fairly recently this could only be done at postmortem).

This makes me wonder if our defective connective tissue might also lead to defective insulation around our neurons, allowing some signals to “leak” to adjacent areas. Could that explain my general “mood instability” as well? Continue reading

23 Photos of Ehlers-Danlos Syndrome Skin Damage

23 Photos That Show How Ehlers-Danlos Syndrome Affects the Skin | The MightyPaige Wyant – Dec 2018

The Ehlers-Danlos syndromes are a group of rare connective tissue disorders that include 13 different subtypes.

Though each subtype has its own unique diagnostic criteria and manifests in different ways, several of the most common symptoms those with EDS experience include joint hypermobility, skin hyperextensibility and tissue fragility. 

These are the direct result of having defective collagen (connective tissue). I was surprised to learn that any part of our body that has a shape (not liquid) must contain some connective tissue to hold it together – even our bones.   Continue reading

Physician Online EDS Education | EDS CME Modules

Physician Online Education | EDS CME Modules

The Ehlers-Danlos Society has a series of free EDS educational modules for which doctors can even earn CME credits, so it’s worth their time to take a look. EDS patients, I encourage you to make your doctors aware of this.

This free Ehlers-Danlos Syndrome CME Physician Education Program is the first online EDS course providing CME credits and covering the fundamental principles for the diagnosis, classification, and treatment of Ehlers-Danlos Syndromes and related disorders as well as associated conditions.

Any healthcare providers interested in learning more about EDS diagnosis and treatment are encouraged to view the presentations whether or not they desire the CMEs.   Continue reading

Whole family with local anesthetic resistance

Whole-exome sequencing of a family with local anesthetic resistance. – PubMed – 2016 Oct

Local anesthetics (LA) work by blocking sodium conductance through voltage-gated sodium channels.

Complete local anesthetic resistance is infrequent, and the cause is unknown. Genetic variation in sodium channels is a potential mechanism for local anesthetic resistance.

A patient with a history of inadequate loss of sensation following LA administration underwent an ultrasound-guided brachial plexus nerve block with a complete failure of the block. We hypothesized that LA resistance is due to a variant form of voltage-gated sodium channel.   Continue reading

Connective Tissue & the Brain

Connective Tissue & the BrainAugust 19, 2018 · by Emily Casanova

Connective tissue is a fibrous cell-sparse network that helps to connect, support, bind, and separate neighboring tissues from one another.

It exists in and around every organ of the body.

Probably the most recognizable forms of connective tissue are bones (calcified), tendons, ligaments, cartilage, and fats. One major component of connective tissue is the extracellular matrix (ECM), which is composed of various molecules (e.g., proteins) that give structural and communicative support to nearby cells.  Continue reading

Morphine, Narcolepsy, and EDS

I recently received an email from a reader describing a strange connection she noticed between a sleep disorder and opioids:

I thought you might find this interesting–I most certainly did.

Morphine reversed narcolepsy in mice, and a brain sample from a deceased woman–previously treated for narcolepsy, but who’d taken morphine for a bad back–showed that the morphine had caused her hypocretin (orexin)-managing brain cells grow back to the point where she had complained of even sleeping too much!   Continue reading

Gastrointestinal Manifestations in Joint Hypermobility

Spectrum of Gastrointestinal Manifestations in Joint Hypermobility Syndromes. – PubMed – NCBI

Joint hypermobility is a common, primarily benign finding in the general population. However, in a subset of individuals joint hypermobility causes a range of clinical problems mainly affecting the musculoskeletal system and, to a lesser extent, extra-articular disorders.

Joint hypermobility often appears as a familial trait and is shared by several inherited connective tissue disorders, including the hypermobility subtype of Ehlers-Danlos syndrome (hEDS) and benign joint hypermobility syndrome (BJHS/JHS).

Joint hypermobility is not just about painful joints – it’s a full-body syndrome.   Continue reading