Advice for Newcomers to Diagnosis of EDS

I was recently asked by Dr. Tennant’s group, the Intractable Pain Syndrome Research & Education Project:

• What are the 6 things you’d recommend that have helped you with EDS, for someone who is newly diagnosed with EDS?
• What would you tell them?

This is the advice I would give the newly diagnosed:

1. The relief you initially feel at finally knowing what’s been causing you so much grief for so much of your life will quickly fade as the reality of dealing with an incurable degenerative illness sinks in.

Pain Management in the Ehlers-Danlos Syndromes

Pain Management in the Ehlers-Danlos Syndromes (for Non-experts) | The Ehlers Danlos Society : The Ehlers Danlos Society – 2017

Show this to your doctor if they think EDS isn’t painful:

Long-term (chronic) pain in the Ehlers-Danlos syndromes (EDS) appears early, is common, and may be severe. Pain may be linked to the level of joint mobility, how often joints come out of position (dislocate or sublux), how prone the person is to injury, previous surgery, muscle pain, and may become long-term.

Pain can be limited to muscles or can be more widespread and may occur over a short period or continue over long periods of time.

EDS can lead to just about any kind of pain there is: localized or widespread, dull or sharp, and last a long time or just a short while or even be intermittent. There’s an endless variety and I’m always amazed when yet another new pain makes its presence felt in a new place.

EDS: Severe GI Symptoms, Reduced Quality of Life

Hypermobile EDS Linked to Severe GI Symptoms, Reduced Quality of Life – by Jose Marques Lopes, PhD – September 12, 2018

I’m glad to read this and see that “it’s not only me” who has constant upsets in my guts. I was having these problems even when I was still in college, long before (30 years) I found out I had EDS.

Patients with hypermobile Ehlers-Danlos syndrome (hEDS) have an increased prevalence and severity of gastrointestinal (GI) symptoms, and use more potentially damaging medications than healthy people without the disorder, according to a new study.

Studies have reported frequent occurrence of GI symptoms in patients with connective tissue hypermobility, especially in patients with hEDS.

Neuroinflammation and Cortisol Issues

Could Neuroinflammation Be Triggering the Cortisol Issues in ME/CFS and Fibromyalgia? – Health Rising – by Cort Johnson | Jun 18, 2020

More than any other substance, cortisol demonstrates how integral a role the stress response plays in the functioning of our body.

Our main stress hormone, cortisol is best known for the role it plays in jacking up our fight or flight system, but this versatile substance also

• affects our metabolism,
• tamps down inflammation,
• regulates blood pressure,
• affects glucose levels, and even
• impacts our sleep/wake cycle.

Unfit for Work: The startling rise of disability

Unfit for Work: The startling rise of disability in America | Planet Money – By Chana Joffe-Walt – March 2013

This may seem like a strange article to post for someone who’s on disability themselves. However, I know there are many, many people out there scamming our disability system, sometimes for eye-popping amounts.

• Scammers are the ones that give the impression that helping supposedly disabled people is a pointless waste of money.
• Scammers are the ones that will cause the system to go bankrupt.
• Scammer are the ones who cause our own painful conditions to be doubted and denied (for both disability and opioid treatment).

Yet we are the ones who have to shoulder the blame because we’re accused of being such scammers, both in disability claims and in getting opioids for our chronic pain. 

What is a cytokine storm?

What is a cytokine storm? – By Amber Dance – Apr 2020

As Covid-19 cases fill the hospitals, among the sickest and most likely to die are those whose bodies react in a signature, catastrophic way.

• Immune cells flood and attack the lungs they should be protecting.
• Blood vessels leak;
• the blood itself clots.
• Blood pressure plummets and
• organs start to fail.

Such cases, doctors and scientists increasingly believe, are due to an immune system gone overboard — so that it harms instead of helps.  

Vitamin D and COVID-19—Prevention or Therapy?

Vitamin D levels appear to play role in COVID-19 mortality rates: Patients with severe deficiency are twice as likely to experience major complications — ScienceDaily – May 2020

Vitamin D can only help if you start with a deficiency. It has little effect if you already have enough of it in your body.

After studying global data from the novel coronavirus (COVID-19) pandemic, researchers have discovered a strong correlation between severe vitamin D deficiency and mortality rates.

The researchers noted that patients from countries with high COVID-19 mortality rates, such as Italy, Spain and the UK, had lower levels of vitamin D compared to patients in countries that were not as severely affected.  

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.  

Why smart people believe coronavirus myths

Why smart people believe coronavirus myths – BBC Future – By David Robson – Apr 2020

This shows that intelligence alone doesn’t provide immunity from hoax messaging, and reminds me not to get lazy and just follow my “hunches”.

We’ve debunked several claims here on BBC Future, including misinformation around how sunshine, warm weather and drinking water can affect the coronavirus.

The BBC’s Reality Check team is also checking popular coronavirus claims, and the World Health Organization is keeping a myth-busting page regularly updated too.

I find it sad that it’s come to this: a global science-based agency having to use precious time and energy defending its actions against myths that can be dispelled so easily. 

Exiled from the world of the well, isolated by suspicion

In My Chronic Illness, I Found a Deeper Meaning – The New York Times – Jan 2018 – 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 excellent 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 think this distressing experience is common to all people with invisible and externally undetectable illness, especially when reporting chronic pain.