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 →
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
I posted this information in 2017, but I think it’s worth another look. It gives a good overview of what patients with this connective tissue disorder have to deal with.
Below is a collection of PubMed articles discussing 6 (there are many more) different medical problems that people with EDS have to deal with.
Local anesthetic failure in joint hypermobility syndrome ; Alan J Hakim, Rodney Grahame, Paul Norris, and Colin Hopper; J R Soc Med. 2005 Feb; – full-text PMC article Continue reading →
Neurovisceral phenotypes in the expression of psychiatric symptoms | Autonomic Neuroscience | Review ARTICLE |February 2015 (modified repost from 2/6/16)
This review supports what I’ve long suspected: it’s not just my body that’s hypermobile, but my emotions as well. There’s evidence that collagen disorders affect much more than joints due to the altered biochemical properties of this protein that’s ubiquitous in our bodies.
This review explores the proposal that vulnerability to psychological symptoms, particularly anxiety, originates in constitutional differences in the control of bodily state, exemplified by a set of conditions that include Joint Hypermobility, Postural Tachycardia Syndrome and Vasovagal Syncope.
Research is revealing how brain-body mechanisms underlie individual differences in psychophysiological reactivity that can be important for predicting, stratifying and treating individuals with anxiety disorders and related conditions. Continue reading →
Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms – Br J Psychiatry. 2012 Jun – free full text /PMC3365276/
This is not a new article, but a thorough scientific survey of the brain differences seen in people with hypermobility (which is usually undiagnosed EDS). This was the beginning of my understanding that EDS is not just a physical issue, but also affects our minds.
To me, it makes sense that the same instability (lack of balance, tendency to extremes) found in our bodies would also be represented in our brains/minds.
Joint hypermobility is overrepresented among people with anxiety and can be associated with abnormal autonomic reactivity. Continue reading →
Exercise Tests Suggest Autoimmunity Causes the Exertion Problems in Chronic Fatigue Syndrome, Fibromyalgia and POTS – Health Rising – by Cort Johnson | Aug 16, 2017
Researchers and doctors get interested in ME/CFS in different ways. Many have a personal connection, but for David Systrom, a pulmonologist, it was all about demand.
He didn’t seek chronic fatigue syndrome patients out – quite the contrary. When Systrom was given control of a clinical cardiopulmonary lab, he started doing invasive cardiopulmonary exercise tests (iCPET’s) on people with exercise intolerance.
Invasive Cardiopulmonary Exercise Testing (iCPET) Continue reading →
This article goes into great detail outlining the consequences of hypermobility syndromes in children, causing chronic pain, significant disability, and a reduction in quality of life.
When flexibility is not necessarily a virtue: a review of hypermobility syndromes and chronic or recurrent musculoskeletal pain in children – 2015 Oct – free full-text PMC4596461
Chronic or recurrent musculoskeletal pain is a common complaint in children.
Among the most common causes for this problem are different conditions associated with hypermobility Continue reading →
Orthostatic Intolerance and Postural Orthostatic Tachycardia Syndrome in Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome, Hypermobility Type: Neurovegetative Dysregulation or Autonomic Failure? – Biomed Res Int. – Feb 2017 – free full-text PMC article
Joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type (JHS/EDS-HT), is a hereditary connective tissue disorder mainly characterized by
- generalized joint hypermobility,
- skin texture abnormalities, and
- visceral and vascular dysfunctions,
- also comprising symptoms of autonomic dysfunction.
This study confirms the abnormal cardiovascular autonomic profile in adults with JHS/EDS-HT and found the higher baroreflex sensitivity as a potential disease marker and clue for future research. Continue reading →
Autonomic Dysfunction and Fatigue – Alan Pocinki MD – notes from a 2015 presentation
These are notes from a 2015 presentation given by Alan Pocinki, a well-known EDS specialist. The format is not pretty, but the information is discernable, so I’ve left it exactly as written.
Cardio Vascular Dysregulation
- POTS- Postural Tachycardia Syndrome
- OH- Orthostatic Hypotension
- NMH- Neurally mediated hypotension (vaso-vagal syncope, neuro-cardiogenic syncope, delayed orthostatic hypotension)
- OI- Orthostatic Intolerance
What We Know About Cardiovascular Dysregulation Continue reading →
Recognizing postural orthostatic tachycardia syndrome : Journal of the American Academy of Physician Assistants
This article describes the pathophysiology, clinical presentation, differential diagnosis, diagnosis, and management of postural orthostatic tachycardia syndrome (POTS), a potentially debilitating autonomic disorder that can have many causes and presentations.
POTS can be mistaken for panic disorder, inappropriate sinus tachycardia, and chronic fatigue syndrome.
Clinician suspicion for the syndrome is key to prompt patient diagnosis and treatment. Continue reading →