Category Archives: Chronic Illness

12 ‘Taboo’ Symptoms of Ehlers-Danlos Syndrome

12 ‘Taboo’ Symptoms of Ehlers-Danlos Syndrome – Yahoo News, syndicated from The Mighty – by Cassidy Colbert – Feb 2019

I’m encouraged to see this article about my specific painful genetic disorder discussed on Yahoo News, and that Yahoo News is syndicating content from The MIghty, an online publication filled with our stories.

When many people talk about Ehlers-Danlos syndrome, the symptoms they often focus on are hypermobile joints and elastic, velvety skin.

However, since EDS is a connective tissue disease (and connective tissue is found throughout most of the body), the condition can cause a plethora of other symptoms – some of which may be considered “taboo,” and can be more difficult to talk about.   Continue reading

Personality differences from intra‐cortical myelin levels

People With Advantageous Personality Traits Have More Nerve-Fibre Insulation (Myelination) In Key Brain Areas – By Christian Jarrett – Jan 2019

I’ve always wondered why a physical defect of connective tissue, as we have with EDS, is linked to anxiety (my life’s greatest plague after pain). This article shows that a lack of good insulation (myelin) around brain neurons can lead to distinct negative personality traits.

Researchers are getting closer to understanding the neurological basis of personality. For a new paper in the Journal of Personality, Nicola Toschi and Luca Passamonti took advantage of a recent technological breakthrough that makes it possible to use scans to estimate levels of myelination in different brain areas (until fairly recently this could only be done at postmortem).

This makes me wonder if our defective connective tissue might also lead to defective insulation around our neurons, allowing some signals to “leak” to adjacent areas. Could that explain my general “mood instability” as well? Continue reading

23 Photos of Ehlers-Danlos Syndrome Skin Damage

23 Photos That Show How Ehlers-Danlos Syndrome Affects the Skin | The MightyPaige Wyant – Dec 2018

The Ehlers-Danlos syndromes are a group of rare connective tissue disorders that include 13 different subtypes.

Though each subtype has its own unique diagnostic criteria and manifests in different ways, several of the most common symptoms those with EDS experience include joint hypermobility, skin hyperextensibility and tissue fragility. 

These are the direct result of having defective collagen (connective tissue). I was surprised to learn that any part of our body that has a shape (not liquid) must contain some connective tissue to hold it together – even our bones.   Continue reading

Over Half of Fibromyalgia Patients have Spinal Defects

Clinical evidence for cervical myelopathy due to Chiari malformation and spinal stenosis in a non-randomized group of patients with the diagnosis of fibromyalgia | SpringerLink – April 2004

While patients with fibromyalgia report symptoms consistent with cervical myelopathy, a detailed neurological evaluation is not routine.

We sought to determine if patients with fibromyalgia manifest objective neurological signs of cervical myelopathy.

I had never heard of this link between fibromyalgia and cervical myelopathy so this would be consistent with the theory that many fibromyalgia patients actually have EDS, which also leads to such types of cervical problems.

It seems this excellent information from over 10 years ago has been ignored by the medical establishment.   Continue reading

Whole family with local anesthetic resistance

Whole-exome sequencing of a family with local anesthetic resistance. – PubMed – 2016 Oct

Local anesthetics (LA) work by blocking sodium conductance through voltage-gated sodium channels.

Complete local anesthetic resistance is infrequent, and the cause is unknown. Genetic variation in sodium channels is a potential mechanism for local anesthetic resistance.

A patient with a history of inadequate loss of sensation following LA administration underwent an ultrasound-guided brachial plexus nerve block with a complete failure of the block. We hypothesized that LA resistance is due to a variant form of voltage-gated sodium channel.   Continue reading

Pediatric Fibromyalgia

Pediatric Fibromyalgia – By David D. Sherry, – Cara Hoffart – 2013

This article claims to be an overview of pediatric fibromyalgia but to me, it sounds like doctors are being told to ignore the pain because it’s just psychogenic pain, generated by a psychiatric disorder.

This is how they used to treat adults with FMS too, but adults pushed back and insisted on more research and evidence. Now it’s known that fibromyalgia is a “real” physical issue which includes brain inflammation.

That only makes this article seem crueler when it insists that children with diffuse pain are suffering from a mental, not physical, problem. This whole article conflates fibromyalgia with diffuse amplified pain, which is considered a mental disorder, not a medical issue, a classic example of gaslighting: psychologically manipulating someone so that they question their memories, perception, or sanity Continue reading

Fibromyalgia patients have brain inflammation

PET scans show fibromyalgia patients have inflammation in the brain – Oct. 5, 2018 – By Serena Gordon, HealthDay News

“Finding an objective neurochemical change in the brains of people who are used to being told that their problems are imaginary is pretty important,” explained senior study author Marco Loggia.

I think this is wonderful news. The public usuallly believes that fibromyalgia isn’t a “real” condition, so our suffering from the chronic pain it causes is dismissed as “psychological”. We still can’t detect or measure the pain, but now there’s a way to objectively detect one syndrome/disease that’s causing it.

The new research used an advanced imaging test called positron emission tomography, or PET, and looked at 31 people with fibromyalgia and 27 healthy “controls” from Boston and Stockholm, Sweden.  Continue reading

Connective Tissue & the Brain

Connective Tissue & the BrainAugust 19, 2018 · by Emily Casanova

Connective tissue is a fibrous cell-sparse network that helps to connect, support, bind, and separate neighboring tissues from one another.

It exists in and around every organ of the body.

Probably the most recognizable forms of connective tissue are bones (calcified), tendons, ligaments, cartilage, and fats. One major component of connective tissue is the extracellular matrix (ECM), which is composed of various molecules (e.g., proteins) that give structural and communicative support to nearby cells.  Continue reading

Could your Fibromyalgia Actually be Ehlers-Danlos?

Could your Fibromyalgia Actually be Ehlers-Danlos Syndrome? – National Pain Report – By Ellen Lenox Smith – Oct 2018

I was diagnosed with Ehlers-Danlos Syndrome (EDS), a condition you are born with, fourteen years ago at the age of fifty-four. The physical symptoms created by EDS mimic the symptoms associated with fibromyalgia.

As a result, many of the individuals suffering from EDS have, like me, initially been diagnosed with the much more commonly diagnosed condition of Fibro. I can attest to this dynamic for over the past decade, I have had contact with many EDS patients sharing similar stories.

This happened to me too. I resisted a fibromyalgia diagnosis for years until I needed a diagnosis to justify my pain medication to my insurance company. Even at that time, I felt/knew it wasn’t right.  Continue reading

Morphine, Narcolepsy, and EDS

I recently received an email from a reader describing a strange connection she noticed between a sleep disorder and opioids:

I thought you might find this interesting–I most certainly did.

Morphine reversed narcolepsy in mice, and a brain sample from a deceased woman–previously treated for narcolepsy, but who’d taken morphine for a bad back–showed that the morphine had caused her hypocretin (orexin)-managing brain cells grow back to the point where she had complained of even sleeping too much!   Continue reading