Author Archives: Zyp Czyk

About Zyp Czyk

Until I was disabled by the progressive pain and fatigue from Ehlers-Danlos Syndrome and Fibromyalgia, I was a high tech IT maven at Apple and Yahoo. I live in a rustic cabin in the redwood forests of the Santa Cruz Mountains just up the hill from Silicon Valley with my wonderfully supportive husband and 4-legged kids. I use my dwindling energy to write an informational blog about "Living with Chronic Pain from EDS & Fibromyalgia". I publish daily updates with selected excerpts of news, research, treatments, tips, support, and a few personal stories along with my own notes.

Opioid supply crunch for U.S. coronavirus patients

Exclusive: Opioid supply crunch for U.S. coronavirus patients prompts appeal to relax limits – Reuters – Dan LevineApril 2, 2020

U.S. doctors running out of narcotics needed for COVID-19 patients on ventilators are asking the federal government to raise production limits for drugmakers, according to a letter seen by Reuters, after national quotas had been tightened to address the opioid addiction crisis.

It’s becoming ever more clear that the DEA has become an unacceptable impediment to healthcare delivery. They have no business regulating the practice of medicine when their purpose is the enforcement of the latest prohibition against an essential medicine.

The U.S. government sets annual limits on how much tightly regulated narcotics can be produced by pharmaceutical companies, and then allocates portions to various manufacturers.   Continue reading

Chronic Pain in Brain: Structural and Functional Changes

Chronic Pain: Structural and Functional Changes in Brain Structures and Associated Negative Affective States – free full-text article /PMC6650904/ – Jul 2019

This is an extremely thorough article covering many aspects of chronic pain. I’ve tried to cover only key parts and avoid lengthy descriptions of scientific details. After each section, I show a link to the complete section with all its details.

Abstract

Chronic pain is a condition in which pain progresses from an acute to chronic state and persists beyond the healing process.

Chronic pain impairs function and decreases patients’ quality of life.

In this review, we summarize the results of previous studies, focusing on the mechanisms underlying chronic pain development and the identification of neural areas related to chronic pain.   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

Managing pain in the age of opioids

Managing pain in the age of opioids – by Greg Johnson – Feb 2020

This author seems to believe the propaganda that pain patients all having opioid use disorder, but I can ignore that because he makes another important point: if we had true access to a wide variety of treatments for pain care, opioids might be less necessary for some people sometimes.

However, many non-prescription treatments require repeated sessions, raising the costs for insurance companies who much prefer paying for a bottle of monthly generic opioid pills instead of weekly therapy sessions for a lifetime.

By now, I expect everyone who can do without opioids has been tapered, along with countless others who cannot do without and are hunkering down waiting for this country to regain its senses and stop this misdirected, ineffectual, and cruel prohibition of pain medication.  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

How to find doctors still prescribing opioids

I received what I believe to be excellent advice from Richard A “Red” Lawhern for anyone looking for doctors still prescribing opioids:

I very often receive inquiries from patients who have been deserted by their doctors due to concerns for malicious persecution by DEA, DoJ, State Medical Boards or State drug enforcement authorities.

It is hard these days to find any doctor who is taking on new patients for the treatment of chronic pain. But a medical professional associated with the Alliance offered this insight: talk to your local independent pharmacist and ask which doctors they know who may be treating patients for pain.   Continue reading

More information not always better for decisions

When more information may not lead to better decisions | National Institutes of Health (NIH)March 3, 2020

Every day we use information about cause and effect to help make decisions. With advances in machine learning, computers are now able to turn data into sophisticated models of causation.

These models have the potential to help inform the choices that people make in their daily lives. However, it’s unclear how well people can use such models to make real-world decisions.

To me, this is about the difference between data, like raw numbers, and real information, like how the numbers interact with each other (causation, influence, etc.)  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

Managing pain in the era of the opioid crisis

How do we manage pain in the era of the opioid crisis? – Rita Agarwal, MD | Meds | October 2, 2019

Here’s an example of another doctor who understands that the so-called “opioid overdose crisis” has nothing to do with prescription opioids or pain patients.

“6 in 10 Kids Got Opioids After Tonsil Surgery, Study Says.”
So screams the headline from The Daily Beast.

“In the midst of the opioid crisis, doctors sent many kids home with oxycodone and hydrocodone,” it goes on to say. Another example of scaremongering and sensational headlines, or is this something we should still be concerned about?   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