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
Hot? Cold? Haywire? What dysautonomia feels like. | The Ehlers Danlos Society – Oct 2018
We asked our Ehlers-Danlos Society social media community, “What does your dysautonomia feel like?” We received over 100 responses…
Our community shared stories of unrelenting fatigue and debilitating brain fog. We heard about weakness, racing hearts, and frustration. An overwhelmingly common experience was the feeling of a body out of control; feeling too hot or too cold constantly—or even both at the same time.
Here’s what our community had to say: What dysautonomia feels like
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
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
Neurological and spinal manifestations of the Ehlers–Danlos syndromes – Henderson – 2017 – American Journal of Medical Genetics Part C: Seminars in Medical Genetics – Wiley Online Library – Feb 2017
This research review makes it very clear that people with EDS suffer a great deal of pain from the neck up, that EDS is a physically disabling condition, and that its effects are multi-systemic.
This is the article I will present to the new doctor that is taking over from the wonderful doctor who has been prescribing me sufficient opioid pain medication for the last 10 years. They work in the same medical group and this new doctor has on occasion refilled my opioid prescriptions when my regular doctor wasn’t available, so I hope she will continue doing so.
Just reading this review crushes any hope I’ve had of ever “getting better” because there are so many physical issues that arise when our body structures are held together (or rather, not held together) by defective connective tissue.
Hypermobility, the Ehlers-Danlos syndromes and chronic pain. – PubMed – Clin Exp Rheumatol. 2017 Sep-Oct;
This is yet another scientific paper adding to the evidence of how painful EDS (and other connective tissue disorders) can be.
Chronic widespread pain is a common complaint among individuals affected by generalised joint hypermobility.
In the absence of other conditions that cause chronic pain, these individuals are usually diagnosed with joint hypermobility syndrome (JHS). JHS is a multifactorial trait with a strong genetic basis, but no specific genetic markers.
It takes psychological flexibility to thrive with chronic illness | Aeon Essays
…approximately a third of adults suffer from multiple chronic conditions, wreaking untold havoc on healthcare systems and economies across the globe. …as a clinical psychologist, I see many people trying to navigate the daily vagaries of chronic afflictions.
The underlying factor for all of them, however, is that, in the absence of a cure, people want to live the best life they possibly can, regardless of their affliction or disability. Continue reading
Muscle mass, muscle strength, functional performance, and physical impairment in women with the hypermobility type of Ehlers‐Danlos syndrome
This is a continuation of the previous post of Part 1, and picks up at the “Discussion” section:
This study demonstrates severely reduced quantitative muscle function and substantial impairment in physical function in patients with EDS‐HT compared to age‐ and sex‐matched controls.
muscle pain and muscle fatigue were omnipresent in the patient group, increased remarkably due to the muscle strength tests, and decreased very slowly after each test. Continue reading
Muscle mass, muscle strength, functional performance, and physical impairment in women with the hypermobility type of Ehlers‐Danlos syndrome – Rombaut – 2012 – Arthritis Care & Research – Wiley Online Library
Objective: To investigate
- lower extremity muscle mass,
- muscle strength,
- functional performance, and
- physical impairment
in women with the Ehlers‐Danlos syndrome hypermobility type (EDS‐HT).
This is exactly what I’ve been searching for: a study on muscle problems in EDS. Finally, I found some explanation of all the odd issues I’ve had with my muscles over the years. Continue reading