Ehlers Danlos Syndromes – NORD (National Organization for Rare Disorders) –
This article, explaining why EDS leads to various kinds of pain, could help your doctor understand why you need such potent pain relievers.
Sometimes, doctors think only about us being extra-flexible (which many of us certainly are not anymore as our joints deteriorate with age) and forget about the wider implications of defective collagen.
The Ehlers-Danlos syndromes (EDS) are a group of related disorders caused by different genetic defects in collagen. Collagen is one of the major structural components of the body. Continue reading
Chronic pain, unmedicated and just by itself, causes measurable biological damage affecting our physical and mental health. I wish more people knew this so they’d stop assuming that “pain won’t kill you, but opioids will”.
The opposite is true: Constant pain, in addition to causing physical harm, impairs and eventually destroys your Quality of Life (see tag “suicide” for more links to chronic pain).
Chronic pain will make you wish for death, but opioids will only kill you if you take much more than prescribed.
So I decided to update the older list/reference page of posts about various kinds of Bodily Damage from Uncontrolled Chronic Pain by starting a second page:
Bodily Damage from Uncontrolled Chronic Pain Part 2 has more recent posts starting September 2017 up to December 2019
(You can also use tag ‘PAIN-DAMAGE‘ to find them all posts on this topic)
Because fascia is made from collagen, the genetic defect from EDS will often cause us problems with this tissue. It’s thin, fragile, stretches too much, and gives way too easily.
PubMed Central® (PMC) is a free full-text archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health’s National Library of Medicine (NIH/NLM).
Research on the body’s fascia (connective tissue) is finding more and more of its functions and abilities, going far beyond just “holding stuff together”. I’ve posted here the abstracts of the following 4 articles and you can decide for yourself if they’re worth reading in full.
- Smooth Muscle
- Visceral Fascia
- Bone Tissue
- Hormone Receptor Expression in Human Fascial Tissue
How can consumers interact with state medical boards? – National Pain Report – by Geoff Sims – Oct 2019
Editor’s Note: When Dr. Thomas Kline tweeted last week that it’s time for chronic pain patients to “flood state medical boards with online complaints” about being cutoff w/ the CDC and “federal drug police invalid medical excuses, we asked Terri Lewis Ph.D. for an article that shows patients how they can do it and why it might be a good idea.
Many patients do not know where to turn when they have concerns about the competency or conduct of a doctor. State medical boards are government agencies, usually housed in state Departments of Health, that are empowered to investigate complaints about doctors and, when warranted, take action against them. Continue reading
Ehlers Danlos Syndromes Toolkit– from the British “Royal College of General Practitioners” – accessed June 2019
This is an excellent resource describing the many and varied problematic symptoms of a life with EDS, including descriptions of the “lived experience”.
The Ehlers-Danlos syndromes (EDS) are heritable connective tissue disorders affecting the quality of collagen in every part of the body.
Too many people believe that EDS is only about “frequent joint dislocations”, which is what I encountered when I first researched it in the early 1990’s – and when “research” involved books and libraries. Continue reading
Media Bias/Fact Check – Search and Learn the Bias of News Media – https://mediabiasfactcheck.com
We are the most comprehensive media bias resource on the internet.
There are currently 2700+ media sources listed in our database and growing every day.
Don’t be fooled by Fake News sources. Use the search feature above (Header) to check the bias of any source. Use name or url.
Tips For Submitting Effective Comments on regulations.gov – Jan 2018
It’s not just what you say but very much how you say it that leaves an impression. The best ideas can be lost if wrapped in too many words and convoluted language.
A comment can express simple support or dissent for a regulatory action.
However, a constructive, information-rich comment that clearly communicates and supports its claims is more likely to have an impact on regulatory decision making. Continue reading
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
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
The Pain Advocate’s Corner: Demanding Patient’s Rights (contact information by category) by Celeste Cooper
Celeste has a page of links to government agencies, professional societies, advocacy organizations, publications, and advocacy groups whom we can contact with our stories.
It’s time for a reawakening of patient centered care that embraces the ethical preservation of our right to choose. It is a moral obligation of all parties that all stakeholders are part of every process when discussing the treatment of pain.
If we want change, we are obliged to share our unique individual circumstances and our life encounters. It’s time to put into words our desires, needs and rights.
The following are links to allow each of us to do just that.