Tag Archives: EDS

Pain management in the Ehlers–Danlos syndromes

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.

INTRODUCTION

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

Blood Protein Changes Linked To Aging Process

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

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 [2017] 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

New Reference Page for Headaches Related to EDS

Announcing a new Reference Page with all the articles I researched over the years to find the cause of my own headaches:

Headaches Related to EDS

I discovered that EDS can lead to 3 kinds of headaches:

  1. Intracranial Hypotension from cerebrospinal fluid leaks,
  2. Intracranial Hypertension from interference with the circulation of cerebrospinal fluid, and
  3. Cervicogenic Headaches from pinched joints in the neck

The best part is that I found simple isometric exercises to strengthen my neck and prevent both types of headaches, either by maintaining the strength of these muscles with regular neck exercises or by doing these exercises at the first sign of pain.

Using my neck muscles in these exercises seems to realign the vertebrae of my cervical spine (I can hear it “crack” sometimes and that usually eases the muscle spasm), I feel like it removes any “kinks” or blockages interfering with the Craniospinal Hydrodynamics of the fluid around my brain.

 

ADD Distractability Seems Similar to EDS Hyper-Sensitivity

ADHD Brain: Unraveling Secrets of Your ADD Nervous SystemBy William Dodson, M.D. Medically reviewed by ADDitude’s ADHD Medical Review Panel on Oct 2019

My sensory over-sensitivity from EDS seems very similar to ADD and I’ve been diagnosed with both. I wonder how many other people with EDS also suffer from such mental effects.

Attention deficit disorder (ADHD or ADD) is a confusing, contradictory, inconsistent, and frustrating condition. It is overwhelming to people who live with it every day.

The Diagnostic and Statistical Manual of Mental Disorders has 18 criteria, and other symptom lists cite as many as 100 traits.

My work for the last decade suggests that we have been missing something important about the fundamental nature of the ADHD brain.  Continue reading

Neurological and Spinal Manifestations of EDS

Neurological and spinal manifestations of the Ehlers–Danlos syndromesHenderson – 2017 – American Journal of Medical Genetics Part C: Seminars in Medical Genetics – Wiley Online LibraryFeb 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.

Continue reading

hEDS Patients Face Many Physical and Mental Challenges

Young hEDS Patients Report High Number of Physical, Mental ChallengesBY JOANA CARVALHO, MSCSept 2019

“[A]dults with EDS reported that pain, fear, stigma, and negative experiences with health care caused them to feel the most limited in their lives. We are unaware of any similar studies obtaining patient reports on what the hardest part of hEDS is for pediatric patients,” the researchers wrote.

Moreover, previous reports have shown that adult hEDS patients often experience symptoms of certain psychological disorders, including anxiety and depression, which have been found to be directly correlated with physical symptoms of the disorder (e.g., fatigue, tiredness, and pain). 

When they say “directly correlated”, they mean anxiety and depression are also symptoms of EDS. I’ve posted extensively about this connection:   Continue reading

We Have Salamander-Like Ability to Regrow Cartilage

Humans Have Salamander-Like Ability to Regrow Cartilage in JointsDuke 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.   Continue reading

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

Continue reading

Hypermobility, EDS, and Chronic Pain

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.

Continue reading