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
Under Pressure: Large Spinal Study Finds Intracranial Hypertension Common in ME/CFS – Health Rising by Cort Johnson | Dec 2019
This article explains how lax spinal joints in the neck can “kink” the vessels holding our cerebrospinal fluid produce common symptoms of Fibromyalgia, CFS/ME and Hypermobility/EDS.
A couple of years ago, there was hardly any discussion of spinal issues in ME/CFS. It’s become clear, though, that spinal issues are present in some patients and can even, in some instances, produce virtually all the symptoms found in this disease.
From cerebral spinal fluid leaks, to spinal stenosis, to intracranial hypertension, to craniocervical instability, the spine is now of intense interest. Continue reading
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
Ehlers-Danlos Syndrome: An Emerging Challenge for Pain Management – By Forest Tennant, MD, DrPH – Editor’s Memo – Sep 2017 – updated Feb 2020
This article was written by a doctor who specialized in chronic pain treatment until the DEA shut him down because he dared treat his patients with effective doses of opioids. He points out how our defective collagen leads to a great deal of pain in multiple bodily systems.
Until recently, Ehlers-Danlos Syndrome (EDS) was a name that elicited little relevance or urgency in the pain world.
Little did I realize that I had been treating more cases of EDS in patients who had been referred to my practice initially for more commonly recognized diagnoses such as fibromyalgia, spine degeneration, and resistant migraine. Continue reading
Cardiovascular Autonomic Dysfunction in Ehlers-Danlos Syndrome–Hypermobile Type (for Non-experts) | The Ehlers Danlos Society: The Ehlers Danlos Society – 2017
I’ve long suffered from extreme temperature swings, always feeling too hot or too cold, whipping back and forth between them unless I remained very still in a constant temperature.
Searching for a hint of what causes this and suspecting it’s related to EDS, I searched for “EDS temperature sensitive unstable” and came across this article discussing several other symptoms too, like incontinence and digestive problems, which I thought were separate issues.
What ties them all together is that they are symptoms of autonomic dysregulation, a problem I didn’t think I had. But after reading this article, I can see how this additional issue contributes to my general physical instability. Continue reading
Atlantoaxial Instability: What Happened To My Barber? – by Paul Ingraham – Apr 2017
Either atlantoaxial instability or vertebrobasilar insufficiency causes severe dizziness and vomiting after massage therapy, with lessons for health care consumers.
My barber has this story: he had an incredibly severe negative reaction to the first and last massage he’d ever had.
This is similar to my experience when I received a wonderfully skilled massage to loosen the tight muscles in my neck and upper back. After leaving the office and driving partway home, a blinding headache forced me to pull over. I had to take extra pain medication and wait almost an hour for it to take effect before I could drive the rest of the way home. Continue reading
Effect of Estrogen on Musculoskeletal Performance and Injury Risk – free full-text /PMC6341375/ – Jan 2019
Estrogen has a dramatic effect on musculoskeletal function.
Beyond the known relationship between estrogen and bone, it directly affects the structure and function of other musculoskeletal tissues such as muscle, tendon, and ligament. In these other musculoskeletal tissues, estrogen improves muscle mass and strength, and increases the collagen content of connective tissues.
However, unlike bone and muscle where estrogen improves function, in tendons and ligaments estrogen decreases stiffness, and this directly affects performance and injury rates.
This can be important for those of us with EDS or HMS (or perhaps some other connective tissue problem) because it affects tendon & ligament function by decreasing stiffness. Continue reading
Pain management in the Ehlers–Danlos syndromes – Chopra – 2017 – American Journal of Medical Genetics Part C: Seminars in Medical Genetics – Wiley Online Library
For those of us with EDS, this is a post we can show our doctors to explain all the various pains we have and to provide hard scientific evidence (from the National Institute of Health, no less) that our pain is absolutely “real”.
Because our pain moves and changes so much, we can seem a little crazy when we report all its varieties and change our reports from appointment to appointment.
Pain is common in Ehlers–Danlos syndrome (EDS) and may correlate with hypermobility, frequency of subluxations and dislocations, soft tissue injury, history of previous surgery, myalgias, and may become chronic. Continue reading
Protein Waves In Blood Linked To Aging Process: Shots – Health News : NPR – by Richard Harris – Dec 2019
Scientists know that if they transfuse blood from a young mouse to an old one, then they can stave off or even reverse some signs of aging. But they don’t know what in the blood is responsible for this remarkable effect.
Researchers now report that they’ve identified hundreds of proteins in human blood that wax and wane in surprising ways as we age.
Wyss-Coray and his colleagues report in Nature Medicine on Thursday that these proteins change in three distinct waves, the first of which happens “very surprisingly” during our 30s, peaking around age 34. Continue reading
EDS, HSD More Prevalent Than Previously Thought in UK, Study Finds – by Joana Carvalho, MSc – Jan 2020
The rare disease status of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) should be re-evaluated, as both conditions seem to be more prevalent than previously thought, a U.K. study suggests.
A nationwide Danish cohort study  had reported that EDS, a connective tissue disorder, affects 20 per 100,000 people, an incidence that falls within the scope of a rare disease according to European Union standards (less than 50 cases in 100,000 people).
However, scientists are now convinced that the prevalence of EDS and HSD could be much higher than previously thought, because many patients are initially misdiagnosed, which can skew the estimations of disease prevalence. Continue reading