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.

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Pain Warriors: Civil Rights for Our Time

Pain Warriors: ‘A Civil Rights Movement for Our Time’ — Pain News Network – By Pat Anson, PNN Editor – May 25, 2020

A long-awaited documentary about chronic pain in North America is shining a light on the other side of the opioid crisis – how chronic pain patients and their doctors have been marginalized and persecuted in the name of fighting opioid addiction.

“Pain Warriors” is being released by Gravitas Ventures. It is available for streaming on Vimeo, iTunes and Amazon Prime or on DVD.

The 80-minute film takes an intimate look at the lives of four chronic pain patients and their loved ones, including an 11-year old boy living with cancer pain and a doctor who nearly lost his medical license due to allegations he overprescribed opioids.
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Common colds train immune system to recognize COVID

Common colds train the immune system to recognize COVID-19 | Live Science – By Rachael Rettner – Senior Writer – Aug2020

This existing immune system “memory” may explain why some people have milder COVID-19 infections.

Previous infections with common cold viruses can train the immune system to recognize SARS-CoV-2, the virus that causes COVID-19, according to a new study.

The study, published Aug. 4 in the journal Science, found that immune cells known as T cells that recognize common cold coronaviruses also recognize specific sites on SARS-CoV-2 — including parts of the infamous “spike” protein it uses to bind to and invade human cells.   Continue reading

Lower Back Pain Can Improve After Hip Replacement

Lower Back Pain Can Improve After Total Hip Replacement, by Hospital for Special Surgery July 2020

A new study by researchers at Hospital for Special Surgery (HSS) in New York City reveals that symptomatic lower back pain resolved in 82% of patients after total hip arthroplasty (THA) and identifies which patients are more likely to have their back pain resolved. This study is available online as part of the AAOS 2020 Virtual Education Experience.

This is another example of “everything is connected to everything else” theory. It seems obvious that any asymmetry in the pelvis or hips would affect how we walk and an uneven gait would then stress the low back.

“For patients, it is important to know that hip and spine arthritis often coexist, and the majority of the time, an individual’s back pain is better after hip replacement surgery,
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How pain affects focus and attention

Here are three scientific articles about the effect of “pain” on brain functions, like focus and attention, proving that the “sensation of pain” we feel is a very “real” physiological state, not a psychological issue.

Pain Affects Visual Orientation: an Eye-Tracking Study – PubMed – Feb 2019

Because of its unique evolutionary relevance, it is understood that pain automatically attracts attention.
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The HPA – Immune Axis in the Brain

The HPA – Immune Axis and the Immunomodulatory Actions of Glucocorticoids in the Brain – free full-text /PMC3978367/ – Front Immunol. 2014;

In response to physiological and psychogenic stressors, the hypothalamic–pituitary–adrenal (HPA) axis orchestrates the systemic release of glucocorticoids (GCs).

By virtue of nearly ubiquitous expression of the GC receptor and the multifaceted metabolic, cardiovascular, cognitive, and immunologic functions of GCs, this system plays an essential role in the response to stress and restoration of an homeostatic state.

GCs act on almost all types of immune cells and were long recognized to perform salient immunosuppressive and anti-inflammatory functions through various genomic and non-genomic mechanisms.   Continue reading

COVID worsens shortage of hospital opioids

Special Report: COVID deepens the other opioid crisis – a shortage of hospital painkillers – Reuters – Lisa Girion, Dan Levine, Robin Respaut – June 2020 

The DEA, an agency of law enforcement without a medical purpose, controls the amount of opioid medication manufactured by giving several companies strict quotas to produce each year. Because the DEA has no ties to or knowledge of medicine, they react purely to police agency reports of illicit opioids.

They still don’t understand that overdoses are from street opioids, not medication, so they want to keep reducing the opioid medication supply in a misdirected effort to reduce overdoses from street drugs.

As opioid pills and patches fueled a two-decade epidemic of overdoses in the United States, hospitals faced chronic shortages of the same painkillers in injectable form – narcotics vital to patients on breathing machines.   Continue reading

Dogs can identify COVID in humans

Scent dog identification of samples from COVID-19 patients – a pilot study | BMC Infectious Diseases | Full Text – Research article, Open Access – July 2020

With our search for solutions to the current health crisis focused only on cutting edge science, we sometimes forget to reevaluate older, simpler remedies that could be repurposed or improved quickly to use while we wait for a better technological solution.

Background

As the COVID-19 pandemic continues to spread, early, ideally real-time, identification of SARS-CoV-2 infected individuals is pivotal in interrupting infection chains.

Volatile organic compounds produced during respiratory infections can cause specific scent imprints, which can be detected by trained dogs with a high rate of precision.  Continue reading

EDS: Analysis of Current Treatment Options

Ehlers-Danlos Syndrome: An Analysis of the Current Treatment Options – Pain Physician – 2020

Background: Ehlers-Danlos syndrome (EDS) is a multifaceted disease that can present with a variety of types of pain.

Unfortunately, both the mechanisms and treatments for pain are poorly understood. The proposed treatments for the various musculoskeletal pain syndromes in EDS have had variable success, and it becomes much more imperative to better define and evaluate the current treatment modalities in treating this debilitating disease.

Objectives: The purpose of this study was to investigate the currently available treatment modalities for patients with EDS and their efficacies in pain and symptom relief.  Continue reading

About Wearing a Mask…

I was blogging about an article, Does Wearing a Mask Protect Me?, and found myself getting angrier and angrier about all the propaganda (deliberate lies) we’ve been fed about how to protect ourselves from COVID.

“It’s been a real deficiency in the messaging about masking to say that it only protects the other,” said Charles Haas, an environmental engineer and expert in risk assessment at Drexel University.

“From the get-go, that never made sense scientifically.”

That’s exactly what I’ve been thinking all along, it seems so obvious.  Continue reading