Large Spinal Study Finds Intracranial Hypertension

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.  

EDS: Description by Natl Org for Rare Disorders (NORD)

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.  

Neurological and Spinal Manifestations of EDS

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.

We Have Salamander-Like Ability to Regrow Cartilage

Humans Have Salamander-Like Ability to Regrow Cartilage in Joints –Duke Clinical Research Institute – Oct 2019

Here’s a promising development for one of the scourges of aging, osteoarthritis. Additionally, with EDS cartilage can be defective and deteriorate faster than the norm, so this could be very good news.

“Once cartilage is gone, it’s gone for good and there’s no replacement that we know of,” Luk said.

However…

Contrary to popular belief, cartilage in human joints can repair itself through a process similar to that used by creatures such as salamanders and zebrafish to regenerate limbs, researchers at Duke Health found.  

Fascia Research from the NIH

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.

1. Smooth Muscle
2. Visceral Fascia
3. Bone Tissue
4. Hormone Receptor Expression in Human Fascial Tissue

Muscle impairment in women with hEDS – Part 1

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.

The Fascial (Connective) Tissue System

Fascial tissue research in sports medicine: from molecules to tissue adaptation, injury and diagnostics: consensus statement – free full-text /PMC6241620/ – Dec 2018

The fascial system builds a three-dimensional continuum of soft, collagen-containing, loose and dense fibrous connective tissue that permeates the body and enables all body systems to operate in an integrated manner.

Injuries to the fascial system cause a significant loss of performance in recreational exercise as well as high-performance sports, and could have a potential role in the development and perpetuation of musculoskeletal disorders, including lower back pain.  

Stretching after exercise helps heal

Stretching impacts inflammation resolution in Connective Tissue – Free full text – /PMC5222602/ – Jul 2017

I’m encouraged to learn that stretching has been shown to be very beneficial for sore muscles. not before exercise, but afterward.

Abstract

Acute inflammation is accompanied from its outset by the release of specialized pro-resolving mediators (SPMs), including resolvins, that orchestrate the resolution of local inflammation.

We showed earlier that, in rats with subcutaneous inflammation of the back induced by carrageenan, stretching for 10 minutes twice daily reduced inflammation and improved pain, two weeks after carrageenan injection.  

Pain control methods used by EDS patients

Pain control methods in use and perceived effectiveness by patients with Ehlers-Danlos syndrome: a descriptive study. – PubMed – Disabil Rehabil. 2016;

PURPOSE:
The purpose of this study was to assess the pain control methods in use by patients who have Ehlers-Danlos Syndrome (EDS), a group of connective tissue disorders, and their perceived effectiveness

METHOD:
This descriptive study involved 1179 adults diagnosed with EDS who completed an anonymous on-line survey. The survey consisted of

• demographics information, 
• the Patient Reported Outcomes Measurement Information System (PROMIS) Pain-Behavior,
• PROMIS Pain-Interference, and
• Neuro QOL Satisfaction with Social Roles and Activities scales, as well as a
• modified version of the Pain Management Strategies Survey.

Neuroimaging Anxiety in Hypermobility

Neuroimaging and psychophysiological investigation of the link between anxiety, enhanced affective reactivity and interoception in people with joint hypermobility – free full-text /PMC4196473/ – Oct 2014

Anxiety is associated with increased physiological reactivity and also increased “interoceptive” sensitivity to such changes in internal bodily arousal.

Joint hypermobility, an expression of a common variation in the connective tissue protein collagen, is increasingly recognized as a risk factor to anxiety and related disorders.

This study explored the link between anxiety, interoceptive sensitivity and hypermobility in a sub-clinical population using neuroimaging and psychophysiological evaluation.