Sunbreaks in Unending Storms: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole and FJ Griffitts is invaluable to both the dweller of the storm and the observer of the storm because it shows not only what to anticipate, but how to navigate through the turbulence of invisible chronic illness. In addition, this is a must-read guide for those wanting to create volunteer groups (say in their church or community) to help those living with chronic illnesses. 

Review of SUNBREAKS IN UNENDING STORMS: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole & FJ Griffitts

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

At the top, a sun rise shining through the clouds. Beneath, a orange, brown background with lightening coming from clouds over a black city scape.  The title text in white and yellow: My Review of Sunbreaks in Unending Storms: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole and FJ Griffitts

I received an ARC of this book to read this past spring; I agreed to review it, but I did not agree to any type of review.  This is not a book I would generally pick up to read, but I sure am glad that I did.  I’ve purchased my own copy to refer back to.

Teal and white drawn lotus/waterlily

Advanced Reader’s Copy (ARC)

I “met” Carole via a chronic illness blogging group, of which we’re both members. I began to read her blog posts, which are sincere and full of wisdom. Through a few comments I left on her posts, we began a dialogue. When Carole was looking for readers for the book that she and her husband Joe, referred to FJ in the book, wrote together, I sent her a message that I would love to be a reader.

However, I knew once she responded that she would be sending it to me as soon as the Advanced Reader’s Copy (ARC) was ready, I began to question if I could do it. If you follow my blog, you know that I’ve been sporadic in getting posts done. Sometimes it’s due to life getting in the way of having the time, but during this time, it was because I was really, really struggling with writing.

With Fibromyalgia, I have found the greatest thing that stops me from doing what I would like is a heavy fog that fills my brain and doesn’t let me do much more than stare into space. I was experiencing this when I received Carole’s acceptance.

Carole in a power wheelchair on a wooden bridge.  Background of clouded lightening storm with sun rise and blue skies opening up.

Chronically Delayed

After not hearing back from Carol for a few months, I forgot about my commitment. During that time, the steps I had taken to get out of my fogged-up funk, began to turn my life around. As I am writing this, I have had a good month of very little foggy brain.

In May, I received an email telling me that the ARC was ready to read. Carole was dealing with an ongoing infection that wouldn’t fully clear up, delaying the publishing process. This is all a part of Carole’s ongoing journey with chronic illness. And to be honest, she and Joe have weathered so many more storms than I can even fathom. Yet, they pushed through to publish this very insightful book that aims to give a realistic understanding of what it’s like to have chronic illness and how it impacts those around you, especially your closest companion.

Orange, yellows, black, blue colors depict a background of lightening and sun peaking through the skies.  Centter: a photo from 40 years ago of Carole and FJ, arms around each other, flanked by their two sons.

Carole and Joe (FJ)

FJ met Carole for the first time on a blind double date with friends in 1965. Two months later he asked her to marry him. During the six months apart while FJ was on temporary duty in the air force, they drew closer through sharing their thoughts on life, love, and family with letters that they exchanged. Soon after his return, they set the wedding date of July 16, 1966.

In the next few years, they became parents of two boys, Tom and Bill, while moving from military to ministry life. While they scraped by financially, Carole and FJ were focused on their family and faith. Life was FULL of love, humor, friendship, and outdoor adventures.

However, that easy, carefree life ended in September 1978 when Carole developed ongoing pain and severe weakness. Their unending storm had begun. But like so many of us with chronic illness, they didn’t expect that it would last or evolve to what it is today.

Carole went from being a very active woman, wearing many different hats, to one that struggled to even do the basics of self-care. FJ became her main caregiver alongside his job as pastor of a church. Together, they have spent 40-years in unending health storms (both Carole’s and his).

Orange, yellows, black, blue colors depict a background of lightening and sun peaking through the skies.  Center is image of the book's cover.

Book Summary

Carole and FJ and the other interviewed families who are dealing with a variety of chronic illnesses share their journeys without sugarcoating things. However, they also don’t despair and crawl into a depressive hole.  I identify with that.  Their stories are hard to witness one hardship after another, yet they also show that they still find meaning and purpose in whatever way they are able. 

Carole and FJ compare living with invisible chronic illness to the onset of unending storms. The book is divided into three sections: Explaining the Storms, Navigating Storms, and Responding to Storms.

Bringing the reader into their homes, we witness how each family finds solutions to day in day out chronic illness issues that aren’t often talked about. Through honest discussions about the emotions from both the sick family member and the caretaker, the book explores the impact of invisible disabilities on relationships with family and friends.

One section deals solely with handling the medical aspect of living with chronic illness. Through Carole’s experience, we see how someone desperately trying to figure out what’s going on can be tossed and turned around by medical providers. Her (and FJs) 40 years of experience, demonstrates how important it is to trust one’s own instincts and push for answers.

While the storms are unending and often very tumultuous, each story shows how they persevere by diving into the deepest meaning of life and its purpose. Carole and FJ’s faith is very important to them, and they share much about their experience (good and not so) in the church as Carole’s illness ramped up.  Through this, each finds sunbreaks and rainbows along the way that fortifies their resolve.

Orange, yellows, black, blue colors depict a background of lightening and sun peaking through the skies.  Center, image of Carol in a wheel chair being pushed by her son down a path through a field.

What Stood Out to Me

I love how the book is woven together with the metaphor of storms/weather. Carole and FJ each tell sections of the same story from their own point of view, the person living with chronic illness and the caregiver. Then they also incorporate a third-person narrator who kind of looks in and gives a scene, giving the reader the feeling they are witnessing the story for themselves. 

I really enjoyed the opening text/quote to each chapter and how they gave insight into the upcoming chapter. The only thing I wish they would have added would be some photos to make the stories become even more real.  Some of the things they share seem almost too impossible for a person/a couple to bear.

I kept hoping for one of those magical endings, which I knew wouldn’t happen because I met Carole through her blog. If you know Carole from her posts, then you know her story to a degree already. However, I learned so much more about all she has gone through and is still dealing with.  Yet, she still publishes posts, and she and her husband wrote this book.  

The last chapter for HOW to deal with chronic illness (and how caretakers and those who want to help can realistically do that) is the crux that most readers will want to jump to. I found it very insightful and practical.

While the topic of faith is an integral part of this book, I found Carole and FJ’s approach to be understanding and inclusive. Allowing someone like myself, who might bristle at the talk of Christianity, to not feel disconnected.

My Recommendation

Sunbreaks in Unending Storms: Understanding Invisible Disabilities, How to Thrive There, and How to Help is invaluable to both the dweller of the storm and the observer of the storm because it shows not only what to anticipate, but how to navigate through the turbulence of invisible chronic illness. In addition, this is a must-read guide for those wanting to create volunteer groups (say in their church or community) to help those living with chronic illnesses. 

You can find this book in both paperback and e-book Amazon: Sunbreaks in Unending Storms by Carole and FJ Griffitts. If you would like to connect with Carole via her blog, check out: Navigating The Storms: Thriving in the Midst of Invisible Disability and her new website: Sunbreaks Books.


Thank you for visiting my blog today. I am committing to posting once a week by Friday.  However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.



Continue Reading:

Interview with Linda Elsegood of LDN Research Trust
Linda Elsegood is one of my chronic illness heroines! She is the …
HRV and Fibromyalgia: What’s Your Heart Rate Variability?
In an attempt to better my pacing and monitor the quality of …
Men’s Health Awareness Month: Living With Fibromyalgia
During June, Men's Health Awareness Month, I have interviewed Chris Hamilton, newly …
teal line drawn waterlily with teal lettering of the title and motto
Interview with Linda Elsegood of LDN Research Trust

Interview with Linda Elsegood of LDN Research Trust

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

Linda Elsegood is one of my chronic illness heroines! She is the founder of LDNRESEARCHTRUST.ORG. Her wellness journey and discovery of the use of Low Dose Naltrexone (LDN) for her progressive Multiple sclerosis is nothing less than miraculous. Instead of going on with her life that LDN gave her back, she began a crusade to make LDN more known and provide training for both health care professionals (doctors, pharmacists, veterinarians, dentists, etc) and patients who live with a wide variety of chronic illnesses.

Linda’s LDN Experience and Founding the LDN Research Trust

As a young mother of two, Linda was a wonder woman. She worked full-time as a bank manager in addition to running her household. She admits, at that time, she took her health for granted.

December of 2000, a sudden phone call from her father changed everything. He told her that her mother had had a major heart attack. She rushed to the hospital, staying up 48 hours straight to care for her mother. Fortunately, her mother survived, but it meant that Linda (an only child), had that additional responsibility put on her. She also had to go straight back to full-time work.

Linda began to have unusual issues: utter fatigue, facial numbness, double vision, lost hearing in her left ear, and then, lost the ability to move. After several tests (MRIs, lumbar punctures, etc.), they diagnosed her with having MS. Treatment with steroids caused some unusual issues. She gained a lot of weight and her face went fully red. The numbness on her left side spread all over her body, yet it felt like she was on fire or pricked by tiny needles. Foggy brain took her over; English became like a second language. She began to talk slowly, which made it seem like she had had a stroke.

Sleep was her saving grace which at this time period, she’d sleep almost all day. During sleep, she didn’t feel the pain that she was experiencing whenever she was conscious. Things deteriorated more and more through 2003. At her next appointment, her neurologist told her that she had secondary progressive MS. He showed her out the door as he told her there was nothing more he could do for her.

“I felt like he had said, go home and die quietly. You’re an embarrassment,” Linda shares. “I couldn’t take how everyone looked at me because they couldn’t do anything to help me. So, I got the pills. I thought that my family and everyone would understand if I took them. They could then go back to living their lives. I couldn’t participate in anything. I felt like a complete failure.” However, thinking about who would find me, I realized it would be my 15-year old daughter who was taking care of me: bathing me, feeding me, brushing my hair who would find me. “I just couldn’t do that to her.”

On the many trips to the bathroom that I made (losing all bladder and bowel control), she would search on the Internet because she felt that there must be others out there in her situation. That’s when she found Low Dose Naltrexone. Those that reported taking it all said that there was nothing to lose; if it doesn’t help at least it won’t hurt.

She printed out all the information and ended up finding a doctor who supported her taking it. Luckily, she found someone who would prescribe it. Within three weeks, the fog that stopped her from functioning lifted. She began to get back her functioning and could once again participate in life.

Linda realized that there would be others out there that could use this help. She started the non-profit LDN Research Trust in 2004 and has since impacted lives all over the world (mine for one).

I am so thankful for Linda’s wellness journey, healing, and willingness to devote her life to helping others through educating and promoting Low Dose Naltrexone.

Linda’s interview in her own words: https://vimeo.com/90316823

My LDN Story: Interview with Linda Elsegood: Part 1

I contacted Linda through her website, ldnresearchtrust.org, just at my one-year anniversary of taking LDN. Here is my interview. You can imagine that I was very awestruck and nervous meeting someone I view as a Rockstar, but Linda made me feel very at ease. She also assured me that my story would be helpful to others. It is a great honor to play a small part in the work she does to get the word out about LDN.

My LDN Story: Interview with Linda Elsegood: Part 2

Just a few weeks after my first interview, I had to reach out to Linda again. She had helped me find my best dosage and timing of 4.5mg twice daily (on waking and around 4pm). After Linda mentions this (at the end of our first talk), I began to research it, buying her LDN Book 2 which I highly recommend.

The LDN Story: low dose naltrexone documentary

This was one of the first videos I watched to help me understand the history of LDN and why/how it works.

Resources Found on ldnresearchtrust.org

There are so many helpful resources on the website as well as in the LDN Facebook Group.

Thank you for visiting my blog today. I am committing to posting once a week by Friday.  However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.

My granddaughter says, “Sharing is Caring”;)





Further Reading:

Review of SUNBREAKS IN UNENDING STORMS: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole & FJ Griffitts
Sunbreaks in Unending Storms: Understanding Invisible Disabilities, How to Thrive There, and …
HRV and Fibromyalgia: What’s Your Heart Rate Variability?
In an attempt to better my pacing and monitor the quality of …
Men’s Health Awareness Month: Living With Fibromyalgia
During June, Men's Health Awareness Month, I have interviewed Chris Hamilton, newly …
teal line drawn waterlily with teal lettering of the title and motto

Grey background on top 1/2 with red heart and white EKG lines going through. Title font in black: HRV and Fibromyalgia: What's Your Heart Rate VAriability

HRV and Fibromyalgia: What’s Your Heart Rate Variability?

Grey background on top 1/2 with red heart and white EKG lines going through. Title font in black: HRV and Fibromyalgia: What's Your Heart Rate VAriability

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

As is the case for every person living with Fibromyalgia, we were diagnosed by our symptoms and process of elimination. This means we have pain all over the body (also referred to as widespread pain), sleep problems, fatigue, and often emotional and mental distress lasting for more than three months. We also have undergone several tests, exams, and imaging to rule out other issues.

What this means is that all our tests, imaging, and physical exams give no indication that something is wrong, yet we experience symptoms that are very real and interfere with our daily functioning. For me, that interference was so severe that I had to leave my teaching career well before I had wanted to.

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Heart Rate Variability (HRV)

In an attempt to better my pacing and monitor the quality of my sleep, I purchased a FitBit Charge 3. During the first six months, I had the premium app option. I was able to see the change in my heart rate after meditation or after a stressful phone call. It was towards the end of my free time, that I found my HRV measurement.

I had never heard of HRV, so I looked into it. Googling, Healthy heart rate variability by age, I found an article on WOOP.com (a similar device to a Fitbit). They indicate that for a woman my age an average range should be anywhere from 30s-50s. I range 15-25… That got me wondering. Is this the ONE physical indicator that shows I’m not well?

One Doctor’s Use of HRV to Help Treat Chronic Pain

It was on LinkedIn that I met Dr. Pete Lillydahl. He posted several articles about chronic pain and HRV. He also noticed my approach to wellness, rewiring my pain-filled brain. Through those common concerns, we began a conversation.

I’ve been very fortunate in this regard. I’ve met several people online that have helped me progress in my wellness journey, and Dr. Lillydahl has opened my understanding as to what my HRV numbers mean and has also given me hope that I am on the right path to improving the function of my Autonomic Nervous System (ANS) through the brain training I’ve already started.

Grey and red background. Grey on the top half features a red heart with white EKG heartbeat lines. WHAT is Heart Rate Variable? is in black font.

I know that the PFL Community will be intrigued by all that Dr. Lillydahl has to share on his use of HRV in treating chronic pain and illness. But first, let me tell you a bit about him.

He was born and raised in Milwaukee, Wisconsin. After graduating from Duke Medical School,  Dr. Lillydahl worked at a clinic in Kenya for 6-months and then spent the next 5-years in training for a career as an Otolaryngologist – Head and Neck surgeon, better known as an ear, nose, and throat doctor. He practiced ENT in Boulder, Colorado for the next 36-years, retiring in 2016 to work on the Easeday Migraine app which was released last January in the Apple app store and soon to be released in Google Play.

A red background with a heart frame centered, featuring Pete and his son standing in front of the Rocky Mountains.
Dr. Pete Lillydahl and his son (Easeday collaborator) in Alaska.

Thank you, Dr. Lillydahl, for agreeing to help me and the PFL readers understand what Heart Rate Variability is and how it can be a helpful indicator to monitor our health.

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How did you become interested in heart rate variability and chronic pain?

While practicing medicine in a multispecialty group, it was hard not to notice that patients who had a stress component to their illness were bounced around from referral to referral and test to test without anyone addressing the underlying mood issues.

I had been exposed to biofeedback in the 80’s when Boulder was a national center for its development. Over the years, biofeedback would be well-shown to help such illnesses as migraine disease, tension-type headaches, and TMJ syndrome, but insufficient reimbursement kept it on the back burner. 

When heart rate variability biofeedback became popular in recent years as an athletic training method, its advantages over other forms of biofeedback for treating illness were clear:  Heart rate variability biofeedback requires just the camera of a smartphone and an accompanying app. With no extra hardware, people with chronic pain conditions can treat the neurological imbalances that often drive chronic disease. And they can do it in the comfort and privacy of the home.

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What is your treatment approach?

A headache is not just a headache – it’s an indication of a whole-person problem. As with any of the chronic pain syndromes that so often accompany migraines and headaches, the most successful treatment plans take a biopsychosocial approach.

So-called “integrative plans” use not just medications, but whatever logical and evidence-based therapies that work best for any particular individual. Behavioral therapy, lifestyle modifications, sleep optimization, appropriate exercise, hands-on physical therapy,  massage, and many other scientifically backed methods may all be part of the plan.

teal line drawing of lotus flower

What is Heart Rate Variability (HRV)?

To simplify, heart rate variability is a measure of your body’s relaxation response. Put slightly differently, HRV  is a measure of the body’s resilience to life’s inevitable challenges and stresses. Over months or years, higher HRV scores indicate better health. 

We’ll get deeper into the science later, I’m sure, but I was reminded of a newspaper cartoon last week that showed two scientists in a lab, with one asking the other, “Why can’t you discover anything that’s easy to explain on a talk show?”  

A Wall Street Journal Cartoon: Line drawing/black and white of two scientists in a lab talking: "Why can't you discover anything that's easy to explain on a talk show?"

That’s been the problem with popularizing heart rate variability as an objective measure of both wellness and illness. Fortunately, public awareness of HRV is growing. 

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How is HRV measured?

HRV is calculated from detecting your pulse or heartbeats, but HRV is not simply how fast your heart is going.

When you breathe in, your heart beats faster. When you breathe out, your heart beats more slowly.  Your HRV score represents that CHANGE in heart rate during a respiratory cycle. Your heart rate variability reflects your body’s ability to put the “rest and digest” brakes on your “fight or flight” reflex after an emergency has passed.  Again, high HRV is good.

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For those living with chronic pain, what role do you think HRV might play?

You can use your HRV score to monitor your overall physical and mental state of health. In addition, doing heart rate variability biofeedback-assisted relaxation training can increase your HRV scores over time. In other words, you can use HRV to increase your resilience to stress.

High heart rate variability correlates with good cardiovascular health, longer lifespan, less inflammation, and better immunity along with other aspects of better general health.

Low heart rate variability correlates with migraine disease, increased inflammation, chronic pain syndromes, autoimmune diseases, anxiety/depression, and many other aspects of chronic illness. 

In chronic pain syndromes, the fight or flight reflex is never adequately toned down. You can imagine how exhausting being in a constant state of emergency could be.

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How can we best keep track of our HRV? What should we be looking for?

HRV may be calculated from a chest strap or other appliance recording your EKG. In a more convenient way, HRV also may be determined from your pulse. Using the pulse rather than the EKG allows devices such as finger clips, wristwatches, ear clips, etc. to serve as HRV monitors.

Probably the easiest way to follow HRV is by using your smartphone camera to read your pulse and using an associated app such as Easeday to calculate and record your HRV score.  At any given time you can see how your HRV is responding to relaxation training sessions, moods, and life’s events.  

Ideally, a pain app also includes a breathing pacer and information regarding HRV, including its use in treating chronic pain conditions. The Easeday app provides these, along with a headache diary, and relaxation training techniques.

Any improvement in HRV, either in real-time during a relaxation training session or long-term over months is good. Long-term decreases in HRV, on the other hand, may indicate illness, increased inflammation, mood changes, etc.

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Are doctors at all concerned with a person’s HRV?

They’re becoming concerned, but there’s always a lot of inertia in medicine as busy providers just try to get through their day. 

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Should they be more concerned?

The importance of monitoring heart rate variability in sickness and in health first came to the attention of psychologists in the 1980’s.  Physicians became more aware when the well-respected Framingham heart study showed that HRV correlated with both cardiovascular health and longevity.

If the burgeoning scientific literature on HRV is any indication, doctors in academic centers are now aggressively exploring the possibilities of adding HRV biofeedback to the treatment of many chronic diseases.

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What does HRV show them beyond the usual health data points such as blood pressure, weight, blood work, etc.?

Doctors are progressively acknowledging the prominent role of inflammation in chronic disease. The well-documented correlation of high HRV with low inflammation has raised the prospect of treating not just cardiovascular disease, but such illnesses as fibromyalgia, chronic pain syndrome, diabetes, autoimmune disease, and chronic fatigue syndrome with anything that increases HRV.

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What’s holding up progress with getting HRV in broader usage?

Several factors are probably at work involving both healthcare providers and their patients.

Old practice habits do change in healthcare, but sometimes very slowly. Progress in the fee-for-service model has been greatly impeded by the incentivization for treating illness instead of promoting wellness.

Again, the fact that the concept of HRV is somewhat harder to understand than many other measures has probably slowed its adoption even amongst health care providers. 

For those experiencing chronic pain, the need to accept a degree of self-responsibility for the prevention and treatment of chronic illness isn’t always as well received as prospects of a pharmaceutical cure. 

Realistically, if there were quick fixes for chronic disease conditions, there wouldn’t be any chronic disease conditions.

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Are there ways to improve HRV?

Yes. Your HRV baseline can be increased through biofeedback, meditation, exercise, lifestyle modifications, cognitive behavioral therapy, and other therapies.

It’s been said that you can’t improve what you can’t measure. In the scientific literature, HRV has come to be the gold standard to measure the balance in your autonomic nervous system.  

In simpler terms, your HRV is an indicator of your ability to go from a fight or flight mode to a rest and digest mode. Increasing that ability is well worth anybody’s effort, but in particular, it’s a key step in escaping the chronic pain trap.” Dr. Pete Lillydahl

In simpler terms, your HRV is an indicator of your ability to go from a fight or flight mode to a rest and digest mode. Increasing that ability is well worth anybody’s effort, but in particular, it’s a key step in escaping the chronic pain trap.

teal line drawing of lotus flower

I’ve read that there are general ranges that one should expect to be in if healthy, but that it’s very individual.

 HRV scores vary so much with age, overall health, medications, time of day, meals, coffee, alcohol, body position, mood, etc. that comparing yourself with other people (especially those younger than yourself) is not a good idea. 

What is important is the change you can make in your own HRV score.  You may see the change in real-time during a relaxation session, such as slow-paced belly breathing, but also with some effort, you can observe long-term trends in your baseline HRV over weeks, months or years.  

To see long-term trends in your HRV, you should try to take a daily 5-minute baseline HRV reading before doing any relaxation exercises. Ideally, this baseline recording would be taken at the same time each morning, under the same circumstances in relation to meals, medications, body position, coffee, activities, etc.

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Does it matter what you think about during HRV biofeedback relaxation training?

Anyway you chose to occupy your mind during an HRV session is OK, except that negative thoughts are taboo – They should be dismissed unemotionally as you return your attention to your present surroundings.  As you know, that’s called mindfulness. 

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Any more thoughts you would like to share about HRV or treating chronic pain?

Actually, lots of them for those having the time or inclination to take a deeper dive. For those who have read this far, thank you for your attention and best wishes on the road to recovery from any chronic health conditions you’re experiencing.

Red Background with white EKG lines going through the center.  A photo of Dr. Pete Lillydahl is placed center; he's smiling wearing a white shirt and blue sweater vest and stethoscope

For those interested in a deeper dive into HRV, how do you want to start?

Let’s begin a deeper dive with a disclaimer:

A few hundred thousand patient encounters in my private medical practice doesn’t make an academic study. Hopefully, though, clinical experience along with help from the academic literature can inform some carefully drawn conclusions about the relationship between chronic pain, the autonomic nervous system, and heart rate variability. None of the following is intended to be controversial.

The fight or flight reflex in overdrive:

Practicing as an ear, nose, and throat doctor in an over-achieving community of professors, scientists, high techies, extreme athletes, etc., I saw a disproportionate number of patients whom you might judge as being wound up too tight, too much of the time. 

 To be more scientific, let’s call the stereotypical Boulderite “sympathetic dominant” in recognition of the fact that in the type A individual, the sympathetic (fight or flight) half of the autonomic nervous system tends to be dominant over the parasympathetic (rest and digest) half.

HRV – a measure of autonomic nervous system balance:

Roughly speaking, think of the sympathetic (“fight or flight”) half of your autonomic nervous system (ANS) as being an accelerator and the parasympathetic (“rest and digest”) half of the ANS as being the brakes. A good balance between the two translates into a healthy response to life’s inevitable stressful events. 

The balance in the autonomic nervous system between the sympathetic accelerator and the parasympathetic brakes shows up in many ways in terms of bodily function. One normal physiologic event is that your heart beats faster during inhalation (a sympathetic event) and more slowly during exhalation (a parasympathetic event). That difference in heart rate during a respiratory cycle is referred to as heart rate variability, or simply HRV. Your HRV score is a measure of your brain applying the parasympathetic brake on your heart rate by way of the vagus nerve.  The vagus nerve, however, also innervates essentially all your other internal organs as well. Your heart rate variability, therefore, may be thought of as a general indicator of the balance in the autonomic nervous system as it regulates your bodily functions.  

Autonomic Nervous System (ANS) Balance in Health and Illness:

In a normal, healthy individual, the parasympathetic (rest and digest) half of the ANS is dominant over the sympathetic (fight or flight) half, except when special effort is required.   A higher HRV indicates a state of mental and physical rest and recovery. A lower HRV indicates a system in overdrive. A low HRV score is totally appropriate during acute challenges and emergencies. Under such circumstances, you both hit the accelerator and take your foot off the brake. 

Again, in the long run, higher baseline heart rate variability is associated with better cardiovascular health, longer life span, lower inflammation, and better health in general. Lower baseline HRV correlates with chronic pain, headache disorders, inflammation, anxiety, and depression.

A red background with a heart frame centered, featuring neurons of the autonomic nervous system (ANS).

ANS balance in Fibromyalgia and Chronic Pain  

People with fibromyalgia, as well as those experiencing the chronic pain syndromes that so often accompany it, tend to have relatively low HRV scores.  In the long run, their sympathetic nervous system isn’t adequately braked down. Feeling fatigued may result from always be in a fight or flight mode.

Being in a perpetual state of vigilance is primarily due to the weakness of the parasympathetic brake rather than to the strength of the sympathetic accelerator. In fact, over time, the sympathetic nervous system tone may also be reduced in chronic pain states such as fibromyalgia. It may be a hypersensitivity to what stress hormones are produced that keeps the system in a state of sympathetic dominance.

The good news is that parasympathetic tone can be increased by behavioral techniques such as an appropriate exercise program, a healthy sleep regimen, and relaxation training among other therapeutic modalities. 

The ability of the nervous system to return to normal function is referred to as “neuroplasticity” and may be observed on fMRI scans of the brain. 

HRV Biofeedback – Monitoring Your Stress Response

Seeing is believing. It’s motivating to be able to monitor progress objectively as well as symptomatically. Rising HRV scores are a measure of increasing the ability to put the brakes on the fight or flight reflex. 

Red background with heart frame featuring a biofeedback wrist band and smartphone.

Biofeedback I –  A Personal Journey

Over the course of a 36-year career, it would have been hard not to have noticed the relationship of such conditions as  TMJ/MPD syndrome, non-sinus related facial pain, bothersome tinnitus, most dizziness, most vocal disorders, chronic rhinosinusitis, and asthma (to name a few) to autonomic imbalance.

The body in general and the nervous system in particular just needs a rest now and then to stay healthy.  This basic principle of wellness came home first hand when I developed back spasms every late evening, negotiating our clinic’s new electronic medical record system.  To relieve these painful spasms, I rubbed my back against the doorknob to my office until the pain was relieved enough to return to work.

Biofeedback II – EMG Biofeedback for Muscle Tightness

Eventually, I tried what had worked well for my TMJ patients who were willing to make the effort – biofeedback.  On the internet, I bought a $150 muscle tension detecting device called Antense 2.   It was an electronic headset-like apparatus that informed me with an alarm when my forehead was too tight and needed to take some deep breaths and relax.  This technique is called EMG biofeedback-assisted relaxation training.  It worked great for my back.

The Halo Device and the Birth of Easeday Migraine

Upon retiring, we (BioTrak was co-founded by myself, my son and three other engineers) formed a company to make an electronically updated EMG headband called Halo to diagnose and treat bruxism (tooth clenching) in specific, and muscle tension in general. The Halo prototype worked great, but by then the investment community had moved on from devices to apps. No investment – no product on the shelf.

Meanwhile the field of pain and chronic disease had advanced:

  1. The prominent role of inflammation in most chronic diseases was identified and acknowledged.
  2. The regulatory function of the autonomic nervous system over inflammation was discovered.
  3. HRV had become accepted in the scientific literature as the gold standard for measuring autonomic function.
  4. Technology had advanced so that the user’s pulse could be detected with the light in a smartphone camera.  From that input heart rate variability could be calculated by an algorithm built into a smart phone app. 

In a separate development,  Dr. Dawn Buse, a renowned behavioral therapist specializing in headaches and chronic pain believed in what we were doing and produced the relaxation training content for us.  For us, the headache was a user-acceptable entrance into the sensitive subject of mood and its role in sickness and health. 

Easeday Migraine with HRV biofeedback is the result of this journey.  Version 3  of Easeday was released in the Apple app store in January. An Android version is planned for this fall pending funding.

red background with heart frame in the center featuring hand/shoulder/hips/leg highlighted as if in pain

CHRONIC PAIN SYNDROME– What is it?

  • Acute (nociceptive) pain may persist for weeks, months or years, but chronic pain syndrome is not the same as long standing or recurrent acute pain. It involves mood issues that need to be dealt with as well as pain issues. Feelings of helplessness and hopelessness, sleep disturbances, and a reduced feeling of pleasure are very much part of chronic pain syndrome. 
  • Chronic pain makes the mood worse. Low mood makes pain tolerance worse. This is the vicious cycle of chronic pain syndrome.
  • It is possible but uncommon to find an anatomic or pharmaceutical cure for any acute pain component that in turn breaks the chronic pain cycle by itself.
  • There are both mood and anatomic factors playing a role in chronic pain syndrome that must both be addressed to restore the best quality of life possible under the circumstances. This whole-person approach acknowledges the biopsychosocial nature of chronic pain.
  • The best results for escaping the vicious cycle of chronic pain syndrome come from integrating some combination of an appropriate pharmaceutical regimen with behavioral therapy, lifestyle modifications (including exercise, sleep optimization, and positive social interactions), meditation, counselling, a therapy involving human touch, pets, music therapy, hobbies, and whatever else has some reasonable logic or evidence basis behind it.
  • The first step in escaping the chronic pain cycle is self- empowerment. Taking responsibility for as much of the treatment and prevention as possible should replace the dead end of feeling like a helpless victim waiting to be cured. Unfortunately, that wait could be long.
  • Chronic pain syndromes such as migraine disease, chronic daily headaches, TMJ/MPD syndrome, fibromyalgia, chronic neck, back, shoulder, and pelvic pain are called co-morbid, meaning they tend occur together and must have some reason for doing so.
  • Tinnitus, irritable bowel syndrome, asthma, chronic rhinosinusitis, psoriasis, anxiety, insomnia, chronic fatigue, depression, panic disorder, and many other conditions are often included as chronic pain syndromes because of their tendency to be co-morbid with the syndromes involving mostly  pain. Many of these conditions are exacerbated by stressful events, raising the possibility that resilience to stress is a key feature in their causes and solutions.
  • Chronic pain syndromes have other things in common:
    • Central sensitization: the inability of the brain to appropriately screen out sensory input such as milder pains, sounds, bright light, itching, odors, etc.
    • A low grade inflammation readily detectable with blood studies.
    • A persistence of the fight or flight reflex after a threat has passed.
    • Low heart rate variability (a measure of the body’s ability to put the brakes on the fight or flight reflex)
    • Characteristic abnormal (but reversible) findings on fMRI scans of the brain.

OPIOIDS – Personal Opinion

In the short run, opioids may be very effective at both relieving acute (nociceptive) pain and elevating mood. They often do this at an unacceptable price, however. Among other drawbacks, in the long run, opioids prolong and intensify the pain by suppressing the effect of endorphins -the body’s own system of naturally occurring, non-addictive analgesic chemicals. Endorphins compete for the same tissue binding sites as opioids. While people who have become dependent on opioids may need to judiciously continue them to function, the wisdom of starting chronic pain patients on opioids must be questioned. Any therapeutic modality that reduces the need for opioids should be considered in the treatment plan for chronic pain conditions.

Further reading:

Have you ever checked your HRV pattern? What do you think of its potential in monitoring our health and focus on improving it?


Thank you for visiting my blog today. I am committing to posting once a week by Friday.  However, as you know, my new normal means that sometimes I have to listen to my body, and I cannot follow through as planned. Thank you for your understanding.


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teal line drawn waterlily with teal lettering of the title and motto

Image of me, brown hair and glasses, peaking from a novel that I'm reading to my class.

What’s Wrong with Me? Fibromyalgia Diagnosis-Part 2

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

If you haven’t read What’s Wrong With Me? Fibromyalgia Diagnosis-Part 1, please click to read first.

Me, in bed looking ill. The top of my head is covered with a cold, wet teal washcloth. I'm wearing glasses and hoody sweatshirt that says GRANDVILLE.

The path to figuring out what was going on was not straightforward. Unfortunately, both the doctors and I only ever looked at one issue at a time. When what was needed, was to look at my whole self (mind and body)to figure out WHAT’s WRONG WITH ME? #fibromyalgia #newdiagnosis #ThisIsFibro

Quick Fibromyalgia Diagnosis

First off, bless my doctor. My husband and I had fairly recently moved to a small town, bordering on the “boonies” of Michigan. I had just switched to having him as my general practitioner the year before the roving pain had begun.

After my recent diagnosis of ADD in the spring of 2018 just before our trip out to California, here I was, once again, sitting in his office in tears. I could tell that he thought I was just a stressed-out mess, but I tried my best to explain that this is all something new. He brought up the term Fibromyalgia, but he admitted he didn’t know much about it. I hadn’t even heard the term before.

He ordered thorough blood work and an appointment with an immunologist. All tests came up with normal results-no issues. My fears of the Big-C were alleviated.

Teal line drawing of a lotus on white

In True Teacher-Fashion

Being the teacher and learner, I am, I began to research all things Fibromyalgia. I found some good information and some that were pretty detrimental. One really helpful website has been fedupwithfatigue.com by Donna, who explains her own journey-first with Fibromyalgia and then with the additional diagnosis of Lyme Disease. She has spent a lot of time researching and then sharing with fairly impartial information that is backed up by dependable research. It was her Fibro 101 page that connected me to all sorts of helpful information.

Me, brown hair and glasses, peaking out from the novel THE SEVENTH WISH which I was reading to my 6th grade  Reading Workshop classes.

Saved Up Sick Days

Meanwhile, things at work had gotten impossible. On December 7, 2018, I called in sick. This was not a usual thing for me. And in fact, after officially announcing my retirement for May 31, 2019, I planned on getting a nice lump sum of money for all my sick days.

That wasn’t meant to be. After a weekend in bed, I couldn’t go in on Monday, then Tuesday, then Wednesday… I contacted my personnel director who let me know that I could go on long-term leave. “You have enough days saved up to cover the rest of the year and some.”

Teal line drawing of a lotus on white

Long-term Leave Turns Permanent

So, after my GP wrote a letter, I began what I thought would be a month or two of self care before returning to teaching. But the days came and went. I spent a lot of time in bed. I hurt. I was exhausted.

Fortunately, I was invited to a yoga Breathwork session in a nearby town. The yoga studio was friendly, and the owner/main teacher focused her classes on healing and growing. I began to slowly learn about breathing techniques and slow, focused, healing movement.

Yet, at the end of April, it was evident I couldn’t go back. Even if I was doing well, the hour drive there and back and the intense energy output the 8 hour day required, wouldn’t allow me to do the self-care protocol that was slowly helping me to have better days. So, with my 55th birthday that May and 32-years under my belt, I filed for retirement, letting go the goal of teaching for years to come.

Teaching Benefits

During the months I had off, I viewed my job as one of self-care and healing. I had an appointment to meet with a pain specialist in the city health system an hour away. However, when I looked up her focus, it only talked about chronic pain due to car accidents and the like. I didn’t feel like she would be a good fit.

So, I searched the word fibromyalgia on the hospital’s website. One article came up. As I read it, Fibromyalgia Myths and Facts, I recognized the health provider’s name. I had taught all three of his wonderful children and worked with his wife for years!

Teal line drawing of a lotus on white

Social Connections

Being I was friends with his wife on Facebook, I messaged her right away. Soon after, he responded. He told me of a multi-dimensional chronic pain program at the rehabilitation program in the city. He explained that I would be interviewed for 3-4 hours to determine if I had Fibromyalgia. Then, if accepted, it would be a 10-week program with 2-3 4-6 hour sessions per week. I would meet with a pain specialist medical doctor, a pain psychologist, a physical therapy, and an occupational therapist.

Naively, I thought that I would get in within a couple of weeks. Then, go through 10-weeks of training and get back to teaching. The program, however, was in high demand. (Not surprising since now I know that 20% of Americans live with chronic pain.) So, I was able to start the program in June.

Good-bye, Not On My Terms

This was the hardest thing I had to do-give up control of my classroom after 32-years of teaching. As desperate as I had become, I knew it was what I had to do. Luckily, a wonderful, young teacher who had just spent the first half of the year teaching 6th grade in our district was available for the long term job.

The way I ended my teaching career was not at all the way that I had planned. In the end, I did feel good that I had passed on all of my classroom set up, my lesson plans and created materials, taught her how to teach with technology (which has ended up being very helpful the last two years), and donated to several classrooms my classroom library of 2, 500 books.

Teal line drawing of a lotus on white

What has your journey been to discover what’s wrong? The more we share with one another, I believe the better the process of diagnosis will get for others. The fact that doctors tend to treat one issue at a time not looking at the whole person is one that is slowly changing for the better. More and more the mind/body connection is being acknowledged.





teal line drawn waterlily with teal lettering of the title and motto
LIne drawing of a lotus in rainbow colors; white font for title

Using the Force to Further Fibromyalgia Advocacy

As you probably have guessed, I am not a trained medical health professional. What I am is a mom, a mimi, a retired teacher, a lover of nature and of music, as well as, someone living with chronic illnesses. I share my journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult with your doctor before trying anything new.

Fibromyalgia Impact Tour Interview with Melissa Talwar

Today I had the wonderful experience of talking with Melissa Talwar of Support Fibromyalgia Network. She’s an inspiration in that she is relentlessly connecting Fibromyalgia Advocates to bring better understanding and better living with FM.

I was pretty nervous. Minutes before this, I realized the outlet that I had my charge cord plugged into was not powering my laptop, meaning it would shut down midway through our talk. Once I finagled the cord to the other plug by ripping it out of the cord ties I had it in, I clicked on the link with only a few minutes to show time (at 1pm EST). However, the link said my video and microphone wasn’t hooked up. Luckily, it dawned on me that to practice, I had used my computer camera, so turning it off allowed them to connect our video conference link. Whew!

Photo of my inner forearm laying on my computer keyboard, white coffee cup behind it.  On my forearm is an outline of a lotus flower done in purple and teal colored lines and dots.

May the 4th Be With Us

Melissa made me feel at ease right away and I got totally into our talk. Her opening comment about May 4th and the force brought a smile to my face. I am passionate in sharing my journey and what I’ve learned. Melissa reinforced that it’s important that we do this. I can’t wait for 5/11/2021 when I get to talk to a state representative via Zoom to advocate for awareness and changes at the government level; this is organized my Melissa and her organization. I’ll keep Padme in mind as I share my story.

The video is 46 minutes in length. We cover a lot in that time, but for me the time flew. Then, after, Melissa and I talked for another hour. Feeling invigorated by the connection and renewal in my purpose. Thank you, Melissa.

Other Resources:





teal line drawn waterlily with teal lettering of the title and motto