Unlearning My Chronic Pain: Mind-Body Syndrome

Unlearning My Chronic Pain: Mind-Body Syndrome

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.

Title graphic with colorful, paint splattered background (blues, yellows, reds, and oranges).

Two months ago, I met for the first time with Dr. Howard Schubiner, a Michigan physician and veteran pain research scientist. He has been treating patients with chronic pain for over twenty years. We met via online video (a practice he began in reaction to the COVID pandemic). In our initial consult, Dr. Schubiner spent two hours with me, reviewing my pain history and as much of my personal history as we could fit in.

Those of you who have followed my wellness journey since developing Fibromyalgia and having to leave my teaching career earlier than I had wanted know that I have focused my efforts on rewiring my pain-filled brain. I fully believe in brain plasticity, which to me means that I can lessen the pain pathways that have developed and create new ones that lessen the impact of chronic pain on my daily life. This is what gives me hope and purpose.

Dr. Howard Schubiner has been treating chronic pain patients for nearly two decades, during which time he has been developing and refining his mind-body approach. He is recognized as a leading researcher and physician in the field of pain medicine. He has authored more than 100 publications, including an NIH-funded study on fibromyalgia for the journal PAIN. He is on the board of the PPDA, which advances the diagnosis and treatment of stress-induced medical conditions. He is now working with neuroscientists at the University of Colorado at Boulder on a neuroimaging study for people with back pain.

Past Post That Show My Journey:

This Might Hurt

Immediately after watching THIS MIGHT HURT, I emailed Dr. Schubiner to see if I could get into the program.

Facebook is stalking me! The ads I have on my “wall” tend to be a lot about chronic pain. The trailer for THIS MIGHT HURT showed up this past winter- over and over until I finally clicked to watch it. The trailer intrigued me, and so I bought the movie for personal use. However, then, I stored the link away for quite a while until I felt I was in both the right headspace and had alone time to watch the movie.

Wouldn’t you know, but I LOST my “secure link” for viewing the film. Luckily, I found my receipt email. Fortunately, the director, Kent Bassett, emailed me right back and gave me a new link. I watched that weekend for the first time.

I identified with Dr. Howard Schubiner’s patients featured in this film and was intrigued by the talk of Mind-Body Syndrome. Early on in my effort to understand why I developed Fibromyalgia, I realized that due to childhood trauma, I had lived in Fight/Flight since birth, training my nervous system to be over-amped. Dr. Schubiner’s method of treating chronic pain spoke to what I had already been doing on my own over the last three years.

The idea of having a medical doctor guiding my treatment, having a focused program led by an in-tuned, pain-educated, medical specialist made me giddy. I googled Dr. Schubiner right away, hoping to find out more.

The Patients Featured in THIS MIGHT HURT

Tony has suffered from debilitating leg pain since he was 12. In the last five years, he’s had to stop playing basketball and attending school. The dozens of doctors he’s visited can only tell him that he has Chronic Regional Pain Syndrome, which typically has no cure and no known cause. Once he turns eighteen, he is likely to be prescribed opioids. This is when he meets Dr. Schubiner.

Maureen is a writer, working on a book about the Great Lakes, an area she loves. But she suffers from severe pain in her hands that makes it hard to type and has also prevented her from getting a full night of sleep for years. After physical therapy doesn’t work, she is told that her final option is neck surgery followed by a long recovery period, during which she’d be dependent on opioids for pain management.

Kym used to ride motorcycles and worked at an auto parts supplier. But then her abdominal pain and fibromyalgia became so severe that she’s spent the last 8 years in bed rest, disabled. While she currently depends on opioids to manage her pain, and on her mother to help with the household, she hopes to return to a full life where she can play with her nieces and nephews and be of service to others.

Bio text from THIS MIGHT HURT website.

Help Near Home!

I was floored when I found out that Dr. Schubiner practiced in Michigan (where I live). I was also excited to find out that he was accepting new patients, so I sent out an email right away.

His personal response came just three days later; I was ecstatic to find out that he did in fact take my insurance. And the best part was he could see me via Video. At this point, I didn’t have my COVID vaccination, and the drive there would have been about three hours, so this was wonderful.

We set our first appointment for the end of June. Dr. Schubiner sent me 12 pages of paperwork (asking for extensive health and personal history) to send in prior to the appointment and asked that I forward any pertinent medical records to his office. Also, he asked that I purchase his workbook, Unlearn Your Pain, and read through chapter 3 before our appointment.

An image of the cover of Dr. Howard Schubiner's workbook, Unlearn Your Pain.
Dr. Schubiner’s workbook that I use as a part of my MBS treatment.

What is Mind/Body Syndrome (MBS)?

In chapter 2 of Unlearn Your Pain, Dr. Schubiner explains, “People with MBS do not have pathological changes in their body tissue: they have physiological changes that are reversible. That is, they have changes in blood flow, muscle tension, nerve-firing patterns, and brain-wiring patterns that create pain in the absence of tissue pathology. ”

One of the main questions Dr. Schubiner asked me is to tell him about my pain. My pain is all over, mostly deep within my muscles, but this summer, developing in my elbow and knee joints. However, as I explained, the more intense pain comes and goes and even roves to different spots on my body for no apparent reason. “This,” he explained, “is MBS. All your tests (which are extensive) don’t show any acute injury, yet you have pain. Not only that, but it moves around. That shows it isn’t due to any tissue damage.”

Dr. Howard Schubiner explains what Mind/Body Syndrome is and how and why the brain causes pain.

As he sees the wheels turning in my brain, Dr. Schubiner is quick to say, “Your pain is very real. All pain originates in the brain. The good news is that your pain isn’t damaging your body or life-threatening, and it can be reversed through retraining your Central Nervous System (CNS).”

Smiling older man wearing glasses at the tip of his nose, wearing a white doctor's coat (Dr. John Sarno).
Dr. John Sarno, author of The Mind-Body Prescription

TMS to MBS: A Little History

Dr. Schubiner began his work with MBS after training with Doctor John Sarno in New York, physician and author of The Mind-Body Prescription. Doctor Sarno first coined the term, Tension Myositis Syndrome (TMS) when describing the phenomenon he began to notice in his practice of over 50 years. He came to develop the TMS theory (more and more research now backs this up) that a person’s unconscious mind uses the autonomic nervous system (ANS) to decrease blood flow to muscles, nerves, and tendons, resulting in oxygen deprivation which causes pain.

In the article John Sarno, M.D., An American Hero: Marking a shift in how we treat chronic pain published in Psychology Today just after Sarno’s death in 2017, the author states, “The latest neuroscience research validates this. In patients with chronic pain, the body’s stress chemicals remain elevated, causing every organ system to respond in its unique way to the adrenaline and cortisol assault.”

An explanation of the work of Dr. John Sarno, Mind-Body Prescription.

Dr. Schubiner came back from his time working with Dr. Sarno to establish the Mind-Body Medicine Program at Providence Hospital in Southfield, Michigan. At the time of my first appointment with him, Dr. Schubiner had changed to a one-on-one approach, rather than the group approach that was shown in the documentary. Also, he now uses the workbook as a guide to the process.

Even though I was excited to start the program with Dr. Schubiner and had read the first 4 chapters of Unlearn Your Pain, the subtitle of the book, A 28-day Process to Reprogram Your Brain, didn’t sit very well with me. As I mentioned, I had done a lot of the work he suggests, including 9-months of EMDR Therapy. Over the past 3 1/2 years, I had studied extensively on rewiring the brain, and while I believe it can be done, I have not found it to be a quick or an easy thing to do.

A young woman (long, light brown hair hair) and man (short dark brown hair) sitting at a table.  Wearing blue denim button down shirts, they  calmly smile.
Directors of THIS MIGHT HURT: Marion Cunningham and Kent Bassett

Not An Over-night Process (At Least, Not For Me)

Dr. Schubiner was very upfront that for some, complete elimination of pain just after being educated on how pain works and what Mind Body Syndrome is. That is the case for the director of THIS MIGHT HURT, Kent Basset.

I had the opportunity to interview Kent and when I asked him the reason for his making of the documentary, he explained, “Much of the drive to make This Might Hurt came from my own struggle with arm pain and chronic tendonitis as a 22-year-old. Unable to type or even turn a doorknob, I was forced to drop out of college. Although I saw several doctors and tried physical therapy, strength training, even opioids—my pain grew steadily worse. It wasn’t until I had an insight into the role of the brain in triggering real physical pain that I was able to completely recover.” He and Marion Cunningham, co-directors, hope to make the MBS treatment for chronic pain more known and understood, and so that viewers can see firsthand the powerful transformations that can happen when people go through this intensive mind-body healing process. 

Kent is very passionate about his mission to get the word out. “Since I was able to overcome my own pain, I felt an urgency to help people who are needlessly suffering. I strongly believe people should be told this option exists since for many it is transformative. Many people go to zero pain, which is really rare for chronic pain. Now there are solid randomized controlled trials showing the treatment is effective, and so we think this treatment should be on the menu that doctors discuss with their patients.”

I did it! A 5-day/4-night backpacking trip: 40-miles with a 32-pound backpack and good friends:)

3-Months Later: Final Appointment

Flash forward three months. This week was my last video appointment with Dr. Schubiner. Much like it began, it was a time of self-reflection, some words of encouragement, mindfulness exercise, advice, and kudos.

The last time we had met, I shared with him that I had been asked to go on a 5-day backpack of 40-miles on the North Country Trail at Pictured Rocks with three other women (my age and older). He knew that I had been able to regularly do day-hikes of 6-8 miles, and he knew that this was something that I both longed for and had fear of. When I had told him that I wanted to go, his exact response was, “I’m excited for you. I think you are making a good decision to go! Keep reminding yourself that you are fine and will be fine, whether you have pain or not.”

And so, I went. I purchased lightweight gear; my previous gear was 30-year-old technology. Also, I made two contingency plans in case I couldn’t keep up or make it the entire distance. Because the trail is along Lake Superior, it is in a straight line with campgrounds and sight-seeing spots that allow the drive-up spots periodically. With this in mind, I planned for 1. rest and doing my myofascial release along the way (allowing my group to go on ahead of me if need be) and 2. get a ride into town to a hotel if I had to bail from kind-hearted, car-visiting tourist (which there were plenty of).

While I won’t go into all the details (saving that for my next post which once written I’ll link here), I MADE IT! I carried a 32-pound bag, hiked an average of 8-miles a day, survived sleeping on the ground, set up and tore down my camp each day, made my own meals, and socialized for the entire week. I wasn’t a “burden” to the group, although I was generally the slowest of us four. I even led a couple of morning yoga sessions. As I’m sure you can imagine, I felt EMPOWERED. A month later, and I feel not only empowered but I know that I am able to live my life FULLY despite pain.

At our last Zoom appointment, I explained the pain that I had. The first three nights had leg lock up, lower back electrical shock pain. It was BAD! However, I did what he said. I continued slowly on: setting up my tent, making dinner, and doing myofascial release with the two therapy balls I had packed with me. By the 4th night, the electric shock that I had been getting since the spring every time I “over-did-it” didn’t happen. Neither did it happen on the 5th night. In fact, it hasn’t happened again (although it felt like it might the other day after doing a full day of yard work and 16,000 steps).

Sunrise on a sandy beach on Lake Superior; the sky has white clouds, over blue skies, with yellow, peach, pink, rising at the horizon.

Promise of Life Beyond Pain

I reported to Dr. Schubiner that I still have pain, but I know that it’s not hurting me. I know that I can make plans and live my life FULLY. “Even if I’m never pain-free, I can live like this,” I told him. He and I agreed that I know the steps to take and can continue on without our appointments. However, he let me know that I can contact him at any time for help whenever I need it.

His parting instruction was that I was ready (and needed) to start looking outside of myself, get out of working 24/7 on healing-follow my passions and focus on others again.

While I will miss talking to Dr. Schubiner, I know that I have my life back. It’s not Pollyanna, positive thinking; it’s knowing in my gut that I can create new neuropathways that override the deeply embedded pain and trauma pathways. It’s going to take time. (I was right; 28-days wasn’t meant for me.) 53-years of living in fight/flight takes a bit to undo. But, I have the hope founded in facts, the will, the support, and the know-how to get there.

I realize that this diagnosis may not resonate with you. I am sharing my journey and my own experience/understanding. I would suggest that you look into it if you have Fibromyalgia, chronic pain, etc. It can’t hurt to at least learn about it to see if it may help you. This was a difficult post for me to write. I had intended to write it soon into my connection with Dr. Schubiner. However, I also know that this can get some upset and the fear of a backlash to my experience kept me from my computer most of the summer. And so, I ask you to receive this post with that in mind. I welcome, though, an honest, caring discussion.

Recommended MBS/TMS Resources

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:

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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:

Unlearning My Chronic Pain: Mind-Body Syndrome
Those of you who have followed my wellness journey since developing Fibromyalgia …
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 …
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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.

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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.

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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. 

teal line drawing of lotus flower

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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Dark blue background with purple circles in top right and bottom left. Light Aqua font for title: Men's Health: Living With Fibromyalgia. Under, a light blue circle with cartoon drawings of 5 different looking men

Men’s Health Awareness Month: Living With Fibromyalgia

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.

We all know the stereotype of men when it comes to their health. They are less likely than women to visit a doctor and to downplay or neglect to report their symptoms when they do. I hate stereotypes. Yet, they tend to stem from some truths.

So, I will only talk about the men I know personally. Unfortunately, even my husband and son fit the above stereotype. When I raise a concern, like my husband stopping of breathing during the night, I’m met with jokes and the implication that I’m overreacting or don’t know what I’m talking about.

We even discussed this on Father’s Day. We talked about how our culture still promotes the “masculinity myth” of being tough and independent, not needing help. In the WebMD article, Timothy Smith, professor of psychology at Brigham University explains, “Cultural beliefs, such as toughness, develop for a reason,” he said. “Decades ago, when our economy depended predominantly on manual labor, the ability to continue working despite (problematic) physical conditions benefited families dependent on that labor.”

“Cultural beliefs, such as toughness, develop for a reason,” he said. “Decades ago, when our economy depended predominantly on manual labor, the ability to continue working despite (problematic) physical conditions benefited families dependent on that labor.” -Tim Green, Brigham Young University #MensHealth #Fibromyalgia

It’s concerning that men are dying on average 5-years sooner than women in 2020 whereas in 1920 women were only living on average 1-year longer than men.

Men and Fibromyalgia (FM)

Recently, I was able to talk to Chris Hamilton, a man living with Fibromyalgia. I met Chris through the Facebook Group, Fibro Connect. I immediately appreciated his honest and often humorous responses to questions and posts in the group.

He is a father of two grown children, living in Florida with his wife and working full-time in the procurement department of one of the Big Four Accounting Firms.

Before Fibro, Chris was physically very active participating in Tough Mudders and marathons.

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that  circle frame photo with Chris running in a marathon wearing a lime green baseball cap, lime green long-sleeved shirt and black shorts.

I’m happy to share Chris’s story. He represents a man who is outgoing, physically active, successful in his career and family life, yet he did go to the doctor to find out what was going on. But, unfortunately, so many men choose to stay silent with chronic pain or, worse, are met with disbelief or indifference from family, friends, and even doctors.

While Chris is new at living with Fibromyalgia, I sense in him a strong commitment to live as FULLY as he’s able. His symptom experience reflects my own in that the pain is something we can usually manage, but the brain fog and fatigue are what really bring us both to a halt.

Chris focuses on exercising and eating healthily to mitigate the FM symptoms. In fact, he’s running again. Already, he has signed up for three half marathons for this coming winter!

Please, welcome Chris to the PFL Community:)

Line drawn aqua lotus, symbol of Pain FULLY Living

A Mayo Clinic research report first published in 2012 stated that “The discrepancy between the number of people reporting fibromyalgia symptoms and the number actually diagnosed with the condition was greater among men… Twenty times more men appeared to have fibromyalgia based on their survey response than had been diagnosed.” What are your thoughts?  What is your own experience?  What would you say to a man living with constant pain all over but who hasn’t sought a diagnosis?

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that  a quote in white font. Large light aqua commas before and after quote.

I’d love to see more inclusion. I keep seeing studies about such and such a number of women. It feels exclusionary. More than that, though, if there are differences between men and women, it might add to our knowledge and show useful patterns.

Guys, especially in the west, aren’t supposed to be weak–not that women are. But the inability to provide and take care of things is so central to masculinity that the toll is as emotional as physical–and guys aren’t good at the emotional part. Among the few guys with Fibro I interact with online (and that’s very surface level), there seems to be a lot of anger and resentment–at the condition, at the people who don’t believe them (sometimes including spouses and family members), and at their inability to do what they believe they’re supposed to do. It strikes at the heart of manhood similarly to the inability to be a mom might strike at women. But I think women are much better at showing vulnerability and getting help than men. 

To a guy who has pain and hadn’t gotten it diagnosed, I’d say it could be Fibro, that it’s not a woman’s disease, and that knowing is better than not knowing. 

I’d also say that there’s no more shame in this than in needing glasses to see. You didn’t choose this, and you didn’t make it up. 

Finally, I’d say to guys–and really to anyone, exercise as much control as you can. Take every win possible–and recognize it as such. 

Line drawn aqua lotus, symbol of Pain FULLY Living

What was life before (and then after) FM? 

This is a long answer (sorry).

My actual diagnosis was in February of this year (2021), but I crashed in a humongous way back in 2015. I was on a Project from Hell™ at work, and I was in, by far, the best shape of my life. For my birthday in October 2014, I ran 17 miles. But I got up on February 16 and did a challenging workout but not hard, yet I was nauseated.

From there, I crashed hard. I got so I couldn’t cross the living room without stopping to rest. For few days, I worked from bed because a very good friend was the only other person on the project, and I’d have left her alone to deal with it. I was diagnosed with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome).

Then, after almost exactly seven months, it went away. Looking back, I think it was Fibro, but the pain was never an issue.

Then to Now

I never regained the shape I was in after that episode in 2015, but I did complete a half marathon last February. I had to nap a lot in the evenings. My diet was better than in my twenties, but not by much, and I was inconsistent with exercising, largely because I overdid it and kept getting injured.

After my diagnosis this February, I got the Mayo Clinic book and devoured it. I decided that there were changes I wanted to make to my life anyway–specifically around diet–and now I had to make them. 

In 2015, I kind of allowed everything else–being sick, work, whatever else–dictate terms. It was a horrible year, so I decided I wasn’t going through that again. Now, I’m much more careful about what I eat, but not nearly perfect. I track everything. I’ve moderated the exercise. I do something for at least half an hour a day, even when I feel horrible. 

I’ve actually lost a decent amount of weight as a result and fit in a lot of clothes for the first time in years. I’ve also worked to modify my approach to stress. Again, it’s asserting control over what I can influence and deciding whether something’s important enough to make me crash. I’m not accomplished at that yet, but I’m headed in the right direction.

Line drawn aqua lotus, symbol of Pain FULLY Living

What caused, if you know, the chronic pain and when did it start?

My mom and sister have Fibromyalgia, and the research seems to indicate it could be hereditary. I can’t think of any early childhood trauma, beyond the normal. I was under a lot of stress in 2015, and this past year’s been stressful for everyone, but I can’t identify a specific trigger for the Fibromyalgia symptoms I have now.

In December of 2020, I started having really severe bone pain out of the blue, all over my body, enough that I was missing work and not doing much of anything. I had one afternoon just before I got diagnosed where it was a 9 out of 10 much of the time–and I had to get work done, or so I felt. (Turned out the sun would’ve come up the next morning if I didn’t, so lesson learned.)

The pain, mostly vanished after I knocked off the Coke Zero. I miss it, but I like being pain free a lot more than I like Coke Zero.

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How were you diagnosed?

I’m so fortunate in this regard.

I didn’t see my doctor right away, but having all over bone pain is a big enough deal to make me go pretty quickly. I gave it a couple of weeks, then made an appointment with my primary care. She recommended that I see a rheumatologist, and there was the one I had good experience with previously in 2015, so I chose to go see him. The big wait was to get in to see him, which took four or five weeks.

At the time, it seemed like forever. As you might imagine, my brain went to town on the ambiguity about what was wrong. I was afraid I had bone cancer, and it metastasized or something. When I finally got in for my appointment, the doctor asked me some questions about my symptoms, and then started poking me in the tender spots, asking if it hurt.

It wasn’t comfortable, but it wasn’t exactly painful. He told me that if I were a woman, I’d be jumping through the ceiling and that I had Fibro. (I’ve since read that pain tends to be more pronounced in women). It was about two months between when the pain started and when he gave me the Fibromyalgia diagnosis.

Getting the diagnosis was almost a relief, especially after reading the Mayo book, which gave me a starting point to manage the Fibro symptoms that I was experiencing.

Relative to other people, I was incredibly fortunate to be diagnosed so quickly. My quick diagnosis and relatively mild case make me really humbled by the people who manage to go on day after day for decades without any real relief. In my book, those people are warriors.

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What is your day like living with chronic pain?

What is your pain level generally?

Pain is usually between 2-4, but the fatigue is higher and the brain fog is annoying as hell. It’s no fun forgetting what you’re talking about in the middle of a sentence. That’s scary, too. Alzheimers? If I have to chose, I’d take Fibro over that every day and twice on Sunday.

Does it impact what you do during the day?

Most days not until after work. Evenings can be tough for me. Late afternoons are a chore sometimes.

Crash days (as I call them) are different. They come and go, randomly. There’s no seeming pattern. Right now, I’m in a flare where my pain that’s lasted a week already. My pain is usually in the 1-3 range and right now it’s between 4-6. To be honest, I panic a little because I’m afraid it’s going to stick that way. This crash is different, because for me usually, it’s fatigue and malaise, not more pain.

In terms of how I handle flare days, it depends on how bad I am. If I can manage it, I work. I try really hard to get full days in, but if I run into a series of bad days in a row, I’ll just take the rest–a sick day or part of a day during the week, or just a couch day on the weekend. I have no idea what causes them, but if I knew, they would never happen. This Fibro-thing kind of does what it wants.

Controlling What I Can

What I can, I work to control. So, I’ve focused on my diet and exercise.

My diet is a lot cleaner than it used to be, but I still need to work on cleaning it up more consistently. I eat a lot more veggies, that’s for sure.

I’ve exercised every day since I was diagnosed. Haven’t missed one. It’s not that long (19 weeks today), but I’ll walk for at least half an hour when it’s really bad. This morning I ran five miles, but I’m feeling a fair amount of pain.

Even when I got my butt kicked by the COVID vaccine, I didn’t miss a day. Part of that was the luck of the timing, though. The bad part of my reaction to the vaccine didn’t happen until the late morning of the day after I received the shot. The symptoms cleared up by the following evening, so I could exercise despite my reaction that caused amplified Fibromyalgia symptoms.

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Has It Impacted Your Relationships?

Because I became ill (and diagnosed) while COVID was at its peak, things for me aren’t much different than they are for everyone. COVID distancing built a little wall between me and those outside of my home. I love connecting with friends to play virtual Cards Against Humanity once a week, but because it’s in the evening, it’s hit and miss for me. About half the time, I just can’t play because I’m not up to it. Often I leave early even when I do show up due to feeling too fatigued and foggy to continue.

I’ll say my wife has been amazing about it, and given the family history, I get a lot of support from my parents and sister. I’m also blessed in that the people I work with and for have been amazing, too. That support is so big in this wellness journey. I don’t know how I’d manage without them.

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that  a quote in white font. Large light aqua commas before and after quote.

Do you have a doctor(s) that knows how to help you live your life fully?

No, unfortunately. My primary care and my rheumatologist are both supportive, yet they don’t how to guide me in my day to day management of symptoms. I’m strongly considering hiring a health coach who knows about Fibromyalgia.

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that a quote in white font. Large light aqua commas before and after quote.

How has life with chronic pain affected your working life and finances?

I let the people I work with know, but I haven’t had to miss enough work that it’s made a difference. That said, it could all change tomorrow. And on bad days, I worry that I won’t make it to retirement.

Due to my job, I’m really blessed to have great insurance. So, I haven’t struggled with costs from doctor’s appointments and the like.

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that a quote in white font. Large light aqua commas before and after quote.

What do you do to manage your pain?

The most important thing for me has been eliminating Aspartame. I try to eat reasonably and get my sleep. I think exercise helps, too.

The hardest part is keeping a positive mindset. I wasn’t a super positive person to start with, so this is an area where I have to really concentrate. It all works together–which is why I’m considering a coach so that I can be better.

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that a quote in white font. Large light aqua commas before and after quote.

Do you have any advice for others who live with chronic pain?

That answer has changed. At first, it would’ve been to educate yourself. But there’s so much information out there and not a solid basis of one approach over another that I’ve backed away from that. For instance, most of what I’ve read says leafy greens are the best–and then the anti-copper approach says they’re the worst. 

Also, I’m reluctant to advise because I’ve been so fortunate in my circumstance. I got diagnosed quickly. I’m getting all kinds of support. My case is relatively mild. I can’t advise people whose lives are a living hell and who don’t have all the support I have currently.

If I had to say something, it would be to figure out what you can control and be unyielding in controlling it. Listen to your body. And find someone to listen to you, even if it’s a Facebook group or something like that. And guard your mindset because it’s the key.

I know everyone is different, but my approach has been kicking Fibro’s ass every chance I can get. Anytime I accomplish something hard, whether it’s a long run (which I’m blessed to do–usually 6-8 miles) or getting through an afternoon that’s really bad, it’s a win. I’m inclusive in my definition of winning.

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that  circle frame photo with Chris smiling. He's wearing a Mets baseball cap and behind him is a crucifix hanging on one wall and Mets stadium on the other.
Me recently. Captures my Mets fandom and my faith, which is important in this battle.” -Chris Hamilton

While I’m not concerned about my husband and son having Fibromyalgia, I am concerned for their heart health and other issues. How can we, as a society and health care system, get our men to be open in seeing the doctor and getting help when needed? How can we help men living with Fibromyalgia find more support and acceptance?

Here are a few resources I suggest checking out:

Line drawn aqua lotus, symbol of Pain FULLY Living

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.

Line drawn aqua lotus, symbol of Pain FULLY Living



Never Let Anyone Else Minimize Your Experiences
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Blue background with clipart images of medical bag, brain, pills, syringe, research scientist; white font for title

Advocacy In Action: Lobbying for the Fibromyalgia Community

Blue background with clipart images of medical bag, brain, pills, syringe, research scientist; white font for title

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.

I’m energized and worn out at the same time at the closing of this month of May. This month, Fibromyalgia Awareness Month, had me hopping with more posts than my normal one-a-week, interviews and unforeseen advocacy work. As Melissa Talwar of Support Fibromyalgia Network explains, “Fibromyalgia awareness is good, but it only gets us so far. We need to advocate to get more consistent information out there, to further quality research into its etiology and pathology, and to promote better treatments that are recognized by the health and insurance systems.”

PUSHING PAST MY COMFORT ZONE

Writing is my forte. I can better express myself through writing. Since developing Fibromyalgia, it has become even more true. This is because I am able to take the time I need to look up the words that I can’t think of in the immediate moment.

In my job as a teacher, I was a natural at talking in front of my students, until I wasn’t- due to fibro fog hitting so hard that I couldn’t communicate thoughts in any fluent, coherent way. While I did many talks and trainings for colleagues and parents, I had never felt comfortable doing it.

Then, at my last presentation, where my fellow educator and I were to talk about how to incorporate technology in the classroom, I totally floundered. (I didn’t realize this was the onset of Fibromyalgia.) That last public speaking experience has left a deep fear of getting in front of groups.

So, when I was asked to do a live video interview to talk about my journey with Fibromyalgia Impact Tour, I was very nervous. I prepared by having a cheat sheet written on a big white board sitting in behind my computer. In addition, I had sticky notes for names and terms on my desk so that I could easily get them should I blank.

Melissa made the interview so natural that I didn’t get nervous. Much different than standing in person infront of a group.
I ended up feeling really enlivened by the experience and much more confident.
I did use my cheat notes and had to refer to the sticky note name and term cues now and then, but overall I felt like I was able to be off the cuff and fluent.

STRETCHING MY ADOVACY REACH

Talwar invited me to be a Michigan advocate on Fibromyalgia Advocacy Day, 5/11/2021. She and her teammates at Support Fibromyalgia Network have organized a grassroots effort to reach out to state representatives.

Grassroots Advocacy Movement

The very first advocacy day took place on Capitol Hill in September 2019. “Patients, advocates, clinicians, and caregivers met on Capitol Hill for advocacy-education and then attended over 54 meetings to educate their legislative representatives about supporting critical Fibromyalgia medical research, education programs, and accessibility to alternative pain care,” stated Talwar.

Many chronic illnesses have formal lobbying organizations. In a research report from The American Journal of Medicine, they summarize that, “There are sizeable disparities in the health care lobbying expenditures of various interest groups.” Talwar’s lobbying efforts is a grassroots movement. She explains, “We sometimes forget that we do have the power to change things. As a Fibromyalgia patient, we may feel defeated as most of us struggle to survive. A successful campaign is a joint effort that requires numerous people and tools to reach critical mass. By participating in the process, it allows your voice to be heard and it does make a difference!”

The second Fibromyalgia Advocacy Day at the Capitol happened in March, 2020, just as COVID-19 pandemic was becoming apparent. Talwar and her cohort expanded their efforts with proclamations, regional meetings, and town halls.

This year, with the Pandemic making the in person meetings impossible, Talwar had to come up with a way to conduct the advocacy presentations with the state lawmakers and their constituents who live with Fibromyalgia. She did this by organizing video/conference call gatherings. This was how I was able to participate.

Four Successful Meetings

In preparation, I was given a crash course in advocacy as well as information about the state representatives and senators’ offices. They provided live video conference times to get guidance from and ask questions of those who had participated in the past two years.

The day ahead, I wrote out my story, asking my husband for input. He asked, “What’s your goal in what your sharing?” I went back to my time-lined narrative and changed it around a bit. “I want to make an impact on them as to just how much Fibromyalgia has impacted my life, making my story an example of what this illness does to the 10 million US citizens who live with it.

I had four meetings. The first was with Dr. Jerome Seid (Congressional Fellow) for Sentator Jacky Rosen of Nevada. My partner presenter, is a Nevada native who lives with Fibromyalgia among other conditions. She actually took the video conference while in a hospital bed! She had thought about bowing out, but as she was on the upswing, she felt it would be an impactful and realistic moment for the senator’s representative to witness. Being she is also a therapist, she blew me away with her talk. The doctor was very interested in our stories and even asked me questions about my experience.

He then asked what we would like for him to emphasize with the senator. We shared our concern that the CDC and NIH have very outdated information on Fibromyalgia posted on their websites. In addition, the two don’t even have consistent information. We also requested that he emphasize the need for more research into the cause of Fibromyalgia and how it works so that better treatments and accepted protocols can be developed. I was very encouraged because he said that he had concerns about a family member possibly having Fibromyalgia and he was very supportive in all we were asking for.

The next three meetings were with a Michigan House Representative, Brenda Lawerence and Senators Debbie Stabenow and Gary Peters. The legislative aides were attentive and asked good questions. They also gave us advice as to how to continue to grow the advocacy momentum.

My last meeting started at 3pm. I had been up and actively presenting since noon. When it came to my time to give my spiel, I felt the fibro fog roll in. The presentation that had been smooth the past three times was now choppy and muddled. Instead of pushing through, I stopped and acknowledged what was happening. That took away my embarrassment, and I felt, left a tangible example of what we were explaining.

“Congress represents all of us. If we want more research and the cure (for Fibromyalgia), we will need to fight for it. The NIH needs to do more for Fibromyalgia research and we must let our representatives know!” -Support Fibromyalgia Directory #FibromyalgiaAwareness #AdvocacyInAction #NIH #fibromyalgia

PRESERVING THE RIGHTS TO A FULL LIFE

“Congress represents all of us. If we want more research and the cure, we will need to fight for it. The NIH needs to do more for Fibromyalgia research and we must let our representatives know!” Bringing awareness, encouragement, and helpful information has been the focus of my blog painfullyliving.com. I have gone from not even hearing the word before to becoming someone who is advocating for the ability to FULLY live one’s life despite having Fibromyalgia.

This new focus is giving me purpose and igniting my imagination. When I first was brought down and forced to lose the only way of life I knew, I couldn’t invision being a needed member of society or even my own family. Now, I feel that I can add to this grassroots movement. There is much to be done, but we can nibble away at it-TOGETHER!

If you are at all interested in participating in some small way, contact me or go to Support Fibromyalgia Directory to get connected. You may feel that you have nothing to give or skill to contribute. However, I would say that just being you, sharing whatever you have that doesn’t deplete you, will most assuredly be welcomed and needed.

Teal line drawing of a lotus on white

THANKING THOSE THAT ADVOCATE FOR US

I so appreciate all the ingenuity, time, and spoons that have gone into Fibromyalgia Advocacy all year long. Much of it is behind the scenes that no one will ever really comprehend. To these feisty advocates, I sincerely THANK YOU!

Those Sentators and Representatives nationwide who took the time to listen to our stories and our asks, I thank you for your committement and time. I look forward to future collaboration to bring about positive change in the lives of those living with Fibromyalgia. THANK YOU for acknowledging and supporting us!

Additionally, to all those who go about sharing their stories, whether just to family and friends or to the wider blogging or social media world THANK YOU! You are bringing about positive change in your little niche which impacts the wider culture.

And finally, THANK YOU to all the friends, family, and care givers who support loved ones and patients who have developed Fibromyalgia. It is a frustrating, confusing chronic illness. Your love, support, understanding, and encouragement brings hope and purpose to our lives.

Fisbromyalgia Advocates:

“#Fibromyalgia is one of the most common chronic pain conditions…affects 3-6% of the world’s population.” – National Fibromyalgia Association #FibromyalgiaAwareness #AdvocacyInAction

What are your thoughts about formally advocating for better living with Fibromyalgia? Why do you think it’s still so missunderstood and lacks priority when “Fibromyalgia is one of the most common chronic pain conditions…affects 3-6% of the world’s population”?


The format for this post is thanks to A Chronic Voice linkup. This month, the topics were Pushing, Stretching, Preserving, and Thanking. Each writer takes the given topics and gives them their own spin. Check out these wonderful writers at March 2021 Linkup (scroll past the prompts to find the linked up posts).



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