Management of chronic pain in Ehlers–Danlos syndrome: Two case reports and a review of the literature – journals.lww.com – November 2018 – Part 1
I have a lot to say about this long article, so I’m going to break it into 3 separate posts:
Ehlers–Danlos syndromes (EDSs) are a heterogeneous group of heritable connective tissue disorders involving defective collagen synthesis.
Patients with EDS are prone for chronic myofascial pain, apart from other comorbidities.
Although the initial pathology is commonly nociceptive, progression of EDS leads to neuropathies and central sensitization of pain signals. Continue reading
Common Tragedies Of Lax Joint Syndromes: Broken Hearts, Fallen Men, And Loose Women | Consultant360 | 02/23/15 (reposted from 2015)
This is an excellent and thorough overview of the numerous additional problems in addition to joint laxity found in EDS and other Connective Tissue Disorders (CTDs):
Joint laxity syndromes can cause many nonspecific and variable symptoms, even among patients with the same condition, making diagnosis difficult.
Many patients see numerous specialists before receiving a proper diagnosis, as many healthcare providers are only familiar with the more extreme forms of the disease (eg, Marfan syndrome, osteogenesis imperfecta) despite milder variants being more prevalent. Continue reading
Facing medical uncertainty, doctors tell patients it’s all in their heads – By Elizabeth Cohen, CNN – December 21, 2018
When 7-year-old Bailey Sheehan arrived at a hospital in Oregon partially paralyzed, a doctor said the girl was faking her symptoms to get her parents’ attention because she was jealous of her new baby sister.
Those of us with invisible painful syndromes regularly encounter this attitude from medical professionals. When a doctor cannot find some tangible “proof” of our pain, they jump to the conclusion that our problems are mental.
But that doctor was proved wrong when an MRI showed that the girl had acute flaccid myelitis or AFM, a polio-like disease that’s struck hundreds of children since 2014.
What I find frightening and even immoral is that doctors are never reprimanded, rebuked, or in any way penalized for this atrocious conduct, not by their peers, their employers, or medical boards. Continue reading
PET scans show fibromyalgia patients have inflammation in the brain – Oct. 5, 2018 – By Serena Gordon, HealthDay News
“Finding an objective neurochemical change in the brains of people who are used to being told that their problems are imaginary is pretty important,” explained senior study author Marco Loggia.
I think this is wonderful news. The public usuallly believes that fibromyalgia isn’t a “real” condition, so our suffering from the chronic pain it causes is dismissed as “psychological”. We still can’t detect or measure the pain, but now there’s a way to objectively detect one syndrome/disease that’s causing it.
The new research used an advanced imaging test called positron emission tomography, or PET, and looked at 31 people with fibromyalgia and 27 healthy “controls” from Boston and Stockholm, Sweden. Continue reading
Could your Fibromyalgia Actually be Ehlers-Danlos Syndrome? – National Pain Report – By Ellen Lenox Smith – Oct 2018
I was diagnosed with Ehlers-Danlos Syndrome (EDS), a condition you are born with, fourteen years ago at the age of fifty-four. The physical symptoms created by EDS mimic the symptoms associated with fibromyalgia.
As a result, many of the individuals suffering from EDS have, like me, initially been diagnosed with the much more commonly diagnosed condition of Fibro. I can attest to this dynamic for over the past decade, I have had contact with many EDS patients sharing similar stories.
This happened to me too. I resisted a fibromyalgia diagnosis for years until I needed a diagnosis to justify my pain medication to my insurance company. Even at that time, I felt/knew it wasn’t right. Continue reading
Our Neglect of Chronic Pain Has Left Many Without an Identity – Oct 2018 By Scott McKinney Ph.D.
The opioid epidemic is in the news on just about every television and radio show.
Our regulators debate, campaign, and vote on issues around controlling borders and over-regulating Physicians, yet no one is talking about the typical mom, dad, husband, or wife that deals with chronic pain issues.
As the regulatory broom sweeps our nation, normal and functioning, people are being brushed away by a straying bristle. The, now common story, of a person dealing with chronic pain goes something like this: Continue reading
Identifying Central Sensitization May Not Tell the Whole Story by Charles E Argoff, MD – Sept 2018
Though this article addresses only chronic pelvic pain (CPP), I believe it can be generalized across many other painful disorders of unknown cause.
Levesque et al. describe in this edition of the Journal their development of a consensus-based tool using the Delphi process to assist in establishing clinical criteria of central sensitization in chronic pelvic pain and perineal pain (CPP).
However, the very premise that the authors make—“The concept of central sensitization may allow better understanding and management of patients with chronic pelvic pain (CPP), which is why we decided to elaborate a clinical evaluation tool designed to simply identify central sensitization in pelvic pain”—as the only important neural mechanism in CPP is itself unproven. Continue reading
EDS diagnosis for general practitioners – Alan Spanos MD Clinical Associate UNC School of Medicine Chapel Hill, NC – January 2018
Joint Hypermobility: Diagnosis for Non-Specialists
This article describes how physician generalists can make useful working diagnoses of most patients with hypermobility syndromes, and proceed with effective treatment for them.
It is primarily written for physicians. Individuals who suspect they may have a hypermobility condition may wish to read it through, and have their primary care practitioners use it to make a diagnosis. Continue reading
This document from the Fibromyalgia Network gives an excellent template for the diagnosis: Continue reading
Ehlers-Danlos Syndrome or Disease? – Journal of Syndromes – Published in Avens Publishing Group, May 2016
Although first described in 1892 by Tschernogobow in Moscow, the medical history of Ehlers-Danlos syndrome (EDS) begins with Edward Ehlers’s description in 1900 in Copenhagen.
Several avatars would come to stymie its identification to this day, despite its frequency, and foster confusion with other pathologies.
The first of these is the description by Alexandre Danlos (1908), who particularly emphasized a sign: excessively stretchable skin which would become solidly anchored in the minds of doctors who, even today, use it to rule out the diagnosis if it is not found. Continue reading