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.

teal line drawing of lotus flower

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 (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.

teal line drawing of lotus flower

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.

teal line drawing of lotus flower

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. 

teal line drawing of lotus flower

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.

teal line drawing of lotus flower

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.

teal line drawing of lotus flower

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.

teal line drawing of lotus flower

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. 

teal line drawing of lotus flower

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.

teal line drawing of lotus flower

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.

teal line drawing of lotus flower

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.

teal line drawing of lotus flower

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.

teal line drawing of lotus flower

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


  • 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.

Continue Reading:

Using the Force to Further Fibromyalgia Advocacy
Fibromyalgia Impact Tour Interview with Melissa Talwar Today I had the wonderful …
May is Fibromyalgia Awareness Month: How to Navigate a New Fibro Diagnosis
It’s hard to give advice for how to best treat fibromyalgia (FM) …
Interview with Linda Elsegood of LDN Research Trust
Linda Elsegood is one of my chronic illness heroines! She is the …
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 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
You’ve Gotta Be Kidding! Looking Back at Childhood Fibromyalgia Symptoms

You’ve Gotta Be Kidding! Looking Back at Childhood Fibromyalgia Symptoms

As I’ve learned more about Fibromyalgia (FMS), learning that it is considered a Central Sensitization Syndrome (CSS) which is said to not be a progressive illness, I have come to question when did FMS actually start for me.

What is Central Sensitization Syndrome?

Mayo Clinic’s, Dr. Sletten Discussing Central Sensitization Syndrome (CSS)

“Central sensitization is a condition of the nervous system that is associated with the development and maintenance of chronic pain. When central sensitization occurs, the nervous system goes through a process called wind-up and gets regulated in a persistent state of high reactivity. This persistent, or regulated, state of reactivity lowers the threshold for what causes pain and subsequently comes to maintain pain even after the initial injury might have healed.” quoted from What is Central Sensitization via the Institute for Chronic Pain.

I like to visualize the musical metaphor Dr. Daniel Clauw, a clinical researcher at the University of Michigan, uses to explain this phenomenon as an amplifier turned to its highest level at all times. “Consider the loudness of an electric guitar to represent the amount of pain a person is experiencing. Like the strings of a guitar, there are many types of sensory nerves that produce qualitatively different kinds of sensory information from the skin, muscle, and joints, but in order to hear this information, it has to be processed through an amplifier, the central nervous system. So you can get someone to have more pain by strumming the individual strings of the guitar harder and faster, but another way to increase the loudness would be to turn up the amplifier. And by increasing the level of the amplifier, all strings become louder.”

So, those with Central Sensitization have neuro-processing of pain signals that are much more sensitive than those without, leading to the feeling of pain when there isn’t any acute injury.

FM is Considered Non-Progressive

Clauw, a leading researcher of FM, states that while those living with Fibromyalgia may feel it is getting worse over time, it is not a progressive disease that in itself is spreading, causing more and more deterioration in the body. It is non-degenerative and non-fatal. However, as Clauw explains in this interview by Donna Gregory Burch in the National Pain Report, CSS pain that isn’t managed can cause those with FM to feel as is symptoms are getting worse because they, “progressively get less active, sleep worse, are under more stress and unknowingly develop bad habits which worsen pain and other symptoms.”

This understanding makes me surmise that if we “catch” CSS early, we can then address the pain signals sooner allowing the growing ramifications of ignoring the issue to be abated. Also, the theory of neuroplasticity suggests that the more we do something the deeper ingrained it is in our brain pathways. Doesn’t it stand to reason, then, if CSS is addressed early on, then we can lessen or even erase/change these pain pathways in the individual’s brain. Certainly, early management of CSS would improve the worsening symptoms for those living with Fibromyalgia.

Related Post: 

My Early Onset of CSS

Looking back, I realize I had symptoms of FM in my teens for sure, probably as far back as 10. I did not yet have the roving, all-over pain that remains for 6 or more months which is one of the main indicators doctors currently use to diagnose Fibromyalgia. For me, this didn’t start until June of 2018.

However, as more research has been done since 1974 (when I was ten-years-old), there is now evidence that there are other issues such as irritable bowel syndrome (IBS), interstitial cystitis/painful bladder syndrome (IC/PBS), vulvodynia, migraine, and temporomandibular joint disorder (TMJD) that fall into the Central Sensitization Syndrome umbrella. Often, those living with Fibromyalgia have more than one CSS they are experiencing.

My “Tummy” Aches All the Time

Interstitial Cystitis Signs and Symptoms:

  • Pain the pelvis or between the vagina and anus in women.
  • Chronic pelvic pain.
  • A persistent, urgent need to urinate.
  • Frequent urination, often of small amounts, throughout the day and night (up to 60 times a day)

As long as I can remember, I had an ache below my bellybutton, between my hipbones that were continuous. I had relatively symptom free periods once I started at age 13, but from reports my friends had of the pain they would experience during that time of the month, I concluded I had that type of ache all the time. It was especially noticeable at night, and so I would curl up on my side, sometimes placing my hands on the area to help lessen it. Pressure and heat help ease it.

I didn’t know to tell anyone about this. I didn’t have a general practitioner. I went a few times to the free clinic for various things during my kidhood. We didn’t have insurance. Also, my single parenting mom had more things to deal with then a tummy ache. It really didn’t occur to me to even bring it up until I was in my 30s. The ache was definitely escalating and started to come with urgency issues. I was diagnosed several times over the next five years with urinary tract infections. I took the antibiotics dutifully. Often though, the more extensive urine lab test results came back negative. My doctors had me finish the medicine and often the pain would subside (to a less intense level), so I didn’t question the findings.

I did finally get referred to a specialist who immediately diagnosed me with Interstitial Cystitis. All those prior “infections” were falsely diagnosed. However, 16 years ago, when I was diagnosed with IC, there was never any mention of Central Sensitization Syndrome. It was addressed by medicine, instillations of a pain-relieving solution into my bladder, and physical therapy for the pelvic floor. None of that has really changed the ache. With the diagnosis, I now know not to go into the doctor’s office for antibiotics.

Related Post:

  • Ur In Trouble: Interstitial Cystitis and Fibromyalgia

Chronic Breast Pain from an Early Age

Signs and Symptoms of Mastalgia:

  • Breast tenderness
  • Sharp, burning pain
  • Tightness in the breast tissue

I had breast pain from the get-go of breast-development that was constant like the pain in my bladder. I now know that it has a name (mastalgia), and research is showing that it too “can be an aspect of the central sensitivity syndrome and can be added to the somatic symptoms of fibromyalgia”. –2015 Research Report Can mastalgia be another somatic symptom in fibromyalgia syndrome? I’m embarrassed to say that this is an issue (that I still have) I have yet to really talk to my doctor about. It just wasn’t something we mentioned, so I thought it was just a part of being female and having breasts.

The tissue of my breasts has lumpy (hard knots) all over. Recently, I was diagnosed with dense breasts, so I have to have a special mammogram called Tomosynthesis which takes more images of the breast creating 3-D imagery, making it easier to view any abnormalities. These knots can radiate sharp pain even feeling a bit heated at times in certain spots. While I appreciate the thoroughness of the Tomo (commonly called) mammogram, it means I’m in the press longer than the usual test. When the technician asks if my breasts are painful, I laugh. Yes, always.

Related Article:

My Chest is Burning

Common signs and symptoms of GERD include:

  • A burning sensation in your chest (heartburn), usually after eating, which might be worse at night.
  • Chest pain.
  • Difficulty swallowing.
  • Regurgitation of food or sour liquid.
  • A sensation of a lump in your throat.

As a teen, I experienced burning, sharp pain in my breast bone, specifically in my sternum. Again, I never mentioned this until my husband and I moved to a new town just before I became pregnant with our daughter. We had moved all our belongings (which wasn’t a lot, but a few larger items) up three floors of narrow stairs. The sternum pain was so severe, I thought there was something going on with my heart. I couldn’t take in a full breath without sharp pain that made me not want to. I did go to the local clinic and was diagnosed with a bruised sternum due to heavy lifting. Ice, Ibuprofen, and rest was the prescription. I didn’t bring up that this is an ongoing area of pain. I knew this was a higher-level of what I normally felt, so I accepted the diagnosis.

As a teacher, I found that I lost my voice often after a break from teaching, so every fall, after winter break, etc. One parent volunteer, also a doctor’s wife, suggested that this could be due to acid reflux. When I told her about the breast bone pain, she said it most likely was GERD and that I should be seen. I followed up with a specialist who suggested medication which I took for a few years, really not experiencing any change in the sternum pain, but I did eliminate the throat irritation. Later, not liking the long-term effects of the medication, I decided to take the next step by getting the Nissen Procedure done. I wish I had not done this because it has caused more stomach issues and I still have the sternum pain and acid reflux pretty much as before.

I started that early on but really didn’t know what it was. I went through many “urinary tract” infections that ended up not being urinary tract infections when the lab results came back. I was diagnosed with IC in my mid-30’s. I also had the chest and breast pain before I was twenty. But that was associated with various exercise and hormones. The difficulty of taking a full breath (feeling like I wasn’t getting enough air started being noticeable for others to comment when I was 15 or so. GERD was diagnosed when I was in my 30’s, so I had surgery (the Nissen procedure) about 4 after years of taking daily prescription medicine. The chest pain at my sternum was attributed to that. That pain never went away with medicine or with surgery. Last November, I was diagnosed with Fibromyalgia which I have found can be linked to GERD as well.

No Really, My Tummy is Upset All of The Time

The symptoms of Irritable Bowel Syndrome (IBS) typically include:

  • Cramping
  • Abdominal pain
  • Bloating and gas
  • Constipation
  • Diarrhea

I’ve only just been diagnosed with Irritable Bowel Syndrome (IBS) after going back for pelvic floor therapy this past spring. I have had some symptoms of IBS to some degree since I was in my teens getting noticeably worse in my 30s. As a teen, I would have days of diarrhea whenever I had my period. Then, in my 30s, I began to also have weeks of constipation, causing major stomach pain. However, I had attributed the frequent constipation to the IC and GERD prescription medicine which are known to affect the digestive system. Especially the prescription for urgency relief causes constipation, so I took fairly large doses of Metamucil to off-set it. It wasn’t until recently when I was off all medicine that would cause diarrhea or constipation, that I realized it’s an issue that comes “naturally” to my system.

In the article, A Closer Look at the Interrelationship of Fibromyalgia and GERD, Dr. Don Goldenberg states, “Clinicians should be more alert to the possibility of this association. For pain practitioners, routinely asking FM patients about any problems with irritable bowel and repeated reflux would be a very good start.”

Childhood Diagnosis of Fibromyalgia

Children can be diagnosed with FMS. In Mayo Clinic’s article on Juvenile Fibromyalgia, “Estimates suggest that juvenile-onset fibromyalgia affects 2 to 6 percent of school children, mostly adolescent girls. It is most commonly diagnosed between ages 13 and 15.” However, they look for the traditional symptoms of wide-spread pain lasting for 6-months or more, sleep disturbances, fatigue, brain fog, anxiety, and depression.

However, with what we know now, I feel that doctors should be more alert to patients presenting with other, long-term CSS issues. Looking at patients’ background for possible trauma-causing events that are suspected causations to Central Sensitization Syndromes such as surgery, accidents, major illnesses, and home-life instability that rate on the Adverse Childhood Experiences (ACE) evaluation tool.

A New Paradigm is Needed for Diagnosing FM/CSS:

What if we looked at the whole picture? What if we caught the CSS in it’s beginning? Wouldn’t that allow for major positive changes in the care of such a patient? It seems like the result would be curbing the severity of Fibromyalgia and the comorbid CSS issues.

To do this, doctors need to be more thoroughly educated about Central Sensitization Syndromes. They also need to be trained to look at the person as a whole. Not just the physical issues that are presenting (often only looked at one at a time), but of the whole of the person.

What is your experience with FM symptoms and comorbidities? When did you have the onset? When were you diagnosed? What has been your experience with the progression of FM symptoms?

My granddaughter says, “Sharing is caring!” 🙂

Thank you for visiting my blog today.

I am committing to posting once a week on Fridays. However, as you know, my new normal means that sometimes I have to listen to my body and am not able to follow through as planned. Thank you for your understanding.

Going from PAINfully Living to PainFULLY Living

Due to spending the week in Arizona visiting my mother-in-law, I didn’t get to write a new post. I’ve decided to repost my first blog entry with a few updates this week. I have two other posts in the works, so see you again next week Friday.

This is the beginning of
my journey with fibromyalgia. It’s been
one of many ups and downs, turns and twists,
but ever moving forward, living
my life as FULLY as I can.

June (2018), as my husband and I drove across the country from Michigan to California in our Ford Escape, I began to notice a change in me. It wasn’t quite a new thing, but a new intensity and duration. My muscles ached deep, deep within me, gnawing from the inside out.

This is the beginning of a major life change, a journey of sorts that has birthed a new self. It’s been hard (almost impossible at times) and is ongoing; however, I have come to be thankful for what it’s brought me to.

Why I Have Chosen to Tell My Story Publically

Being a teacher and a lover of learning, I have done a lot of research. Seeking insight, knowledge, and help from every place I could find it. This blog is to share my path on this journey. One: Just so I can have it recorded somewhere. Two: Hopefully help others through this sharing.

I have come to witness and understand that Fibromyalgia comes in many forms with a variety of symptoms and a variety of ways that people choose to handle it. I have learned from others’ stories; however, no one that I’ve encountered has taken the path I’ve been on. I feel that by sharing what I’ve gone through and am going through might give insight to someone else. I don’t think anyone will have the same path as you, so gleaning from many, may lead you in the direction you will want to go.

I have chosen to accept the pain by managing it as much as possible. Sounds easy, right? Just manage it. This blog will go into the details of how my life has been impacted, some of the possible reasons Fibromyalgia developed in me, and how I am managing it. I have gone from PAINfully Living to painFULLY Living since my diagnosis in November (2018).

I will share as best as I can through my words the raw truths that I’ve been living with. I don’t want to sugar coat anything. Fibromyalgia is an all-encompassing, chronic disorder: physical, emotional, and mental. To share my path will mean sharing it all. It will be cathartic for me and hopefully helpful to some.

As of today (2/21/20), it’s been a bit over a year since my diagnosis. I have learned so much about myself in this journey. I have learned a lot about how fibromyalgia affects me and what does and doesn’t help me live FULLY despite its presence. I continue on the path, open to what it brings me. Thank you for coming on this journey with me.

What journey are you on currently? Do you find it helpful to reflect and share your story? Do you find connection learning of others’ paths and choices?

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

Click link Subscribe to Pain FULLY Living Weekly Posts by Email