Tag Archives: EDS

hEDS Deficit in Pain Control Mechanisms

hEDS-related Pain May Be Linked to Deficit in Pain Control Mechanisms – by Marta Figueiredo – June 2020

Pain in people with hypermobile Ehlers-Danlos syndrome (hEDS) likely is the result of an impaired pain suppression system that may lead to widespread pain, a study shows.

Well, that would certainly explain a lot!

contradict a previous theory that EDS-related pain was caused by damage in nerve fibers. Continue reading

The best treatment(s) for chronic primary musculoskeletal pain

The best treatment option(s) for adult and elderly patients with chronic primary musculoskeletal pain: a protocol for a systematic review and network meta-analysis –  free full-text /PMC6842192/ – Nov 2019

When researchers try to design studies about pain without differentiating between different kinds of pain, which I think invalidates those studies right away.

For myself, I’ve noticed several types of pain and each requires a different treatment:

  • For the pain from subluxations in joints, opioids work.
  • For my cervicogenic headaches, neck exercises work (and opioids initially).
  • For muscle spasms along the spine, muscle-relaxants are effective.
  • For the burn in muscles being used, nothing has worked.

Different pain requires different treatment, and I haven’t seen any studies about “pain” that rigorously control what kind of pain subjects have.  Continue reading

Psychiatric Disorders From Ehlers–Danlos Syndrome

Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers–Danlos syndrome or hypermobility syndrome and their siblings | BMC Psychiatry | Full Text – 04 July 2016

It looks like we inherit not only chronic physical pain but also a fourfold increased risk of both anxiety and depression.

Somehow, it makes sense to me that having a body “too loose” and being physically “unstable” would also manifest as being mentally “unstable”, that along with our physical pain, we also suffer from mental pain.

Abstract

To assess the risk of psychiatric disorders in Ehlers-Danlos syndrome (EDS) and hypermobility syndrome.   Continue reading

Genetic explanation for common group of symptoms

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

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.   Continue reading

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.   Continue reading

EDS Requires Aggressive High-Dose Pain Therapy

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 EDS

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

Massage Harmful for Atlantoaxial Instability

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

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