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 two 4-legged kids. I use my remaining energy to run 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 personal stories along with my own notes.

Patients’ Experience With Opioid Tapering

Patients’ Experience With Opioid Tapering: A Conceptual Model With Recommendations for Clinicians – free full-text article from Journal of Pain – Feb 2019

I found this an interesting read because it describes different ideas and experiences with tapering. I’m encouraged because it’s only a part of a larger study collecting data on the outcomes of opioid tapers, data we desperately need to hold the CDC accountable for the misery and deaths its guideline caused.

Abstract:

Clinical guidelines discourage prescribing opioids for chronic pain, but give minimal advice about how to discuss opioid tapering with patients.

We conducted focus groups and interviews involving 21 adults with chronic back or neck pain in different stages of opioid tapering.   Continue reading

Comment on Opioid Limits to HHS Task Force

This was published in the National Pain Report as What I Told the U.S. Government About Pain, but in case you didn’t see it, here it is:

I just have so much to say about this governmental intrusion into our medical care that I couldn’t figure out what to write. So, I decided to comment on just one facet of this ridiculous “war on opioids”: standardizing opioid milligrams prescribed for pain.

I believe we can leave numerous comments, starting with a fresh form each time so I may write another. Just to give you ideas, here’s the comment I left:


I’m writing to urge that you please don’t let the government set standard opioid dose limits for individual patients. Opioids are my only means of relief from a painful connective tissue disorder.   Continue reading

Mindfulness Research’s Huge Problem

Mindfulness research’s huge problem with uninformative control groupsby James C Coyne – June 2016

Are enthusiasts protecting cherished beliefs about the power of mindfulness from disconfirmation?

Do any advantages of mindfulness training disappear in a fairly matched cage fight with a treatment of comparable frequency and intensity?

Finally, a more thorough look at the research indicates that mindfulness is more a placebo response than a treatment. It makes no sense that it’s recommended by medical experts in the place of effective medication.  Continue reading

Study: Opioid cessation and chronic pain

Opioid cessation and chronic pain: perspectives of former opioid users. – PubMed – NCBI – Pain. Jan 2019

From what I can tell, these were voluntary tapers and people were asked why they wanted to stop taking opioids and what they perceived as barriers to that process. I sure wish I had access to the full study…

Current guidelines for addressing opioid cessation in the context of chronic pain management recommend that opioids be discontinued if the risks outweigh the benefits.

However, few studies have focused on understanding opioid cessation from the perspective of individuals with chronic pain.    Continue reading

Paraplegic Drug User Victim of Involuntary Commitment

How a Paraplegic Drug User Became a Victim of Involuntary Commitment by Christopher Moraff – Feb 2019

New laws make it easy for anyone accused of having an addiction problem to be committed if they don’t agree to whatever treatment is recommended for them.

Involuntary commitment for people accused of having an addiction and not actively participating in treatment for it is becoming more common as more laws are being passed to make this legal.

Barely a day passes on my beat without my meeting someone with a harrowing story about the impact of zero-tolerance drug policies on their lives. But few of these stories have impacted me personally as much as that of a young man I’ll call “Jay.”

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A patient’s opposition to the anti-opioid movement

A patient’s opposition to the anti-opioid movement – KevinMD.com – Mar 2019

I wrote this essay for the doctors’ blog, KevinMD.com. My original title was “California’s Death of Sanity Project” as I criticize what’s called the “California Death Certificate Project”.

It’s bad enough that they are prosecuting doctors for prescription they are writing now, but this project goes up to three years into the past, looking for any opioid prescription to a person who overdoses, even years after they received the prescription, even if the overdose was from fentanyl or a combination of multiple illicit drugs.

As I end my essay:

Trying to stem illicit opioid overdose deaths by mandating restrictions on opioids for patients in pain is only a cruel experiment fueled by ignorance and fear.

— Read on www.kevinmd.com/blog/2019/03/a-patients-opposition-to-the-anti-opioid-movement.html

The Real “Death Panels”: Oregon Medicaid

The Real “Death Panels”: Oregon Medicaid planned to cut off opioids to chronic pain patients | Tarbell – By Art Levine – Mar 2019

At the height of the Tea Party and Republican campaign against the Affordable Care Act, the GOP raised a false alarm about “death panels” that would purportedly kill the disabled based on a subjective judgment and “pull the plug on Grandma.”

But to real grandmothers like 60-year-old Wendy Morgan, who has suffered excruciating back and neck pain in the wake of two botched surgeries, degenerative disc disease and severe pain from MS for decades, there’s now a genuine death panel:  the Oregon Health Authority’s pain and evidence committees.

They were slated on March 14 in Salem to finalize mandated opioid cut-offs to zero for Medicaid patients with chronic back and neck pain conditions, plus fibromyalgia.   Continue reading

Defining Your Story As a Patient Advocate

Defining Your Story As a Patient AdvocateBy Barby Ingle, PNN Columnist – Jan 2019

When honing your message, start with deciding what you want to talk about.

Sometimes it is important to go wide and broad when talking about chronic pain, but other times it’s important to discuss your most pressing experiences with a specific disease or challenge.

Defining the issue that’s important to you is key.

You must be able to explain your point of view and back it up with data and science that is relevant and recent.

Even though this is important, the anti-opioid zealots never present data or proof for their viewpoints, yet they are being listened to much more than pain patients. Continue reading

Treating chronic pain can restore normal brain function

Effective Treatment of Chronic Low Back Pain in Humans Reverses Abnormal Brain Anatomy and Function | Journal of Neuroscience – Free full-text article – May 2011

Though also not new, this study is a follow up on an earlier post: Brain abnormalities are Consequence Not Cause of pain (2009). The article below contains dozens of links to further information.

Abstract:

Chronic pain is associated with reduced brain gray matter and impaired cognitive ability.

In this longitudinal study, we assessed whether neuroanatomical and functional abnormalities were reversible and dependent on treatment outcomes.     Continue reading

Raising Alarm on Oregon Force-Tapering Opioids

Pain and Addiction Leaders Raise Alarm on Oregon Force Tapering Opioid Proposal – by Sean Mackey, MD, PhDMar 2019

On Mar 14th, the Oregon HERC Task Force was going to vote to make a rule for Medicaid requiring all opioids to be tapered to zero except in a few very narrowly defined cases.

At the last minute on the morning of the vote, HERC said they were postponing the vote due to a conflict of interest they had “just learned about”. That’s a pretty flimsy excuse because the membership and the whole process of this group have been driven by conflicts of interest (of the alternative medicine community) and a vast ignorance of medicine, pharmacology, and reality.

The extreme nature of this proposal has reached a level of such preposterous cruelty that protest by medical professionals is now required to preserve some limits on the government’s practice of medicine.

…it became clear that there are times when people of good conscience cannot blindly allow bad policies to move forward unchallenged.    –Sean Mackey, MD, PhD

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