Category Archives: Chronic Illness

New Clinical Fibromyalgia Diagnostic Criteria

This document from the Fibromyalgia Network gives an excellent template for the diagnosis: Continue reading

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Joint Hypermobility Associated with Anxiety

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

Hyperalgesia in With Hypermobility and EDS

Generalized Hyperalgesia in Children and Adults Diagnosed With Hypermobility Syndrome and Ehlers‐Danlos Syndrome Hypermobility Type: A Discriminative Analysis – Scheper – 2017 – Arthritis Care & Research – Wiley Online Library – Pediatric Rheumatology – Free Access – August 2016

The phenotypes of hypermobility syndrome (HMS) and Ehlers‐Danlos syndrome hypermobility type (EDS‐HT) are characterized by generalized connective tissue laxity and connective tissue fragility.

Due to the compromised structural integrity of connective tissue, individuals with HMS/EDS‐HT are assumed to be more prone to injury and consequent disability.

Yes, the above sums up the situation with EDS perfectly.   Continue reading

Does The Rare Disease EDS Plague Fibromyalgia?

Does The Rare Disease EDS Plague Fibromyalgia? – February 23, 2018 – By Celeste Cooper

hEDS = EDS hypermobile type, previously known as EDS type III or joint hypermobility syndrome.

According to the National Organization for Rare Disorders (NORD), there are many Ehlers Danlos Syndromes and related disorders caused by different genetic defects in collagen. We will focus on the most common type of Ehlers-Danlos syndrome in this article.

this type of EDS can co-occur in fibromyalgia and myofascial pain syndrome even though it is thought to be a rare condition. Fibromyalgia and EDS also share connections you might not have considered.  Continue reading

Frustrating things about being chronically ill

The most frustrating things about being chronically ill – Toni Bernhard, JD | November 22, 2017

This piece focuses on frustrations that are unique to those with ongoing health issues.

I’ve experienced all of them as a result of being chronically ill with a debilitating illness that settled in after I contracted what appeared to be an acute viral infection in 2001.

Here are nine things I find most frustrating about being chronically ill — in no particular order of intensity; that depends on the day!   Continue reading

In My Chronic Illness, I Found a Deeper Meaning

In My Chronic Illness, I Found a Deeper Meaning – The New York Times – Jan 18 – by Elliot Kukla

I’m not usually a fan of “I accepted my pain, so it got better” stories because they so often reach an overly optimistic and, to me, unrealistic, outcome. But this essay paints a far more realistic picture of what acceptance might look like and how it could be nurtured.

…I had discovered that I was no longer trusted by my doctors about my own body or experiences.

I reported odd, terrifying and sudden physical changes; they recommended cognitive behavioral therapy and Weight Watchers. I felt exiled from the world of the well, isolated by thick walls of suspicion.   Continue reading

Specially Timed Signals Ease Tinnitus Symptoms

Specially Timed Signals Ease Tinnitus Symptoms in First Test Aimed at the Condition’s Root Cause – Dec 2017 – Michigan Medicine – University of Michigan

This isn’t pain-related, but I know many of us suffer from tinnitus too. I also found it interesting because it shows the potential of various neurostimulation treatments that target brain activity.

Millions of Americans hear ringing in their ears — a condition called tinnitus — but a new study shows an experimental device could help quiet the phantom sounds by targeting unruly nerve activity in the brain.

In a new paper in Science Translational Medicine, a team from the University of Michigan reports the results of the first animal tests and clinical trial of the approach, including data from 20 human tinnitus patients.  Continue reading

Surprise: No Two Neurons Are Genetically Alike

Scientists Surprised to Find No Two Neurons Are Genetically Alike – Scientific American

The past few decades have seen intensive efforts to find the genetic roots of neurological disorders, from schizophrenia to autism. But the genes singled out so far have provided only sketchy clues.

There are several other places to look for the missing burden of risk, and one surprising possible source has recently emerged—an idea that overturns a fundamental tenet of biology and has many researchers excited about a completely new avenue of inquiry.   Continue reading

What a Doctor With Chronic Illness Wants People to Know

12 Things a Doctor With Chronic Illness Wants People to Know | The Mighty – Feb 2017 – 

I’ve written this article to help educate those who want to learn about chronic illness.

It is written from my perspective, that of a doctor who treated patients with chronic illness for many years, and who spent five years of my life homebound due to chronic illness.

I want to spread awareness so that friends, family, employers, coworkers, and health care professionals can better understand chronic illness.   Continue reading