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. 

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

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

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

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

Let’s begin a deeper dive with a disclaimer:

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

The fight or flight reflex in overdrive:

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

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

HRV – a measure of autonomic nervous system balance:

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

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

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

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

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

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

ANS balance in Fibromyalgia and Chronic Pain  

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

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

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

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

HRV Biofeedback – Monitoring Your Stress Response

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

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

Biofeedback I –  A Personal Journey

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

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

Biofeedback II – EMG Biofeedback for Muscle Tightness

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

The Halo Device and the Birth of Easeday Migraine

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

Meanwhile the field of pain and chronic disease had advanced:

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

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

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

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

CHRONIC PAIN SYNDROME– What is it?

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

OPIOIDS – Personal Opinion

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

Further reading:

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


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

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Burnt red square with clipart image of a girl experiencing head pain, bolts jetting from her head. Title in bright burnt orange

Headache a Symptom not a Synonym for Migraine

Burnt Red square with Bright orange-gold lettering stating the title : Headache is a Symptom Not a Synonym For MIGRAINE Distorted clipart face of a girl in pain with bolts of electricity coming off her head (3 images off set with fusia, lime green and orange to emphasize pain).
Bridget thinks that too often people think migraines are just excruciating headaches
but that’s just one of the symptoms.
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Interview with Bridget Walker who lives with Chronic Intractable Migraines and Spasticity Due to Brain Trauma as an Infant

At the beginning of the month, I posted about wanting to share the stories from others who are living with chronic illness. (See September is Chronic Pain Awareness Month.) To be honest, I still write as if I’m talking to the wind, so when a message popped up in my Pain FULLY Living Facebook page, I wasn’t sure what to think. I’m so glad that I responded to Bridget Walker’s message. She truly is a remarkable woman who despite severe chronic pain all her life continues to live her life FULLY by pursuing her passion.

Burnt Red square with image of a young woman with brown hair gently smiling, orange-gold font with the quote "Your story is one of your best self-advocacy tools. " Bridget Walker from beyondcoffee.info . At the bottom in small, white font painfullyliving.com .
Bridget writes a lifestyle blog for college students or young adults who live with
chronic illness or disabilities @ beyondcoffee.info

Bridget and I sat this past Sunday, me in my office and she in her Boston apartment shared with two roommates, talking over Zoom. She had just returned from her physical therapy appointment, so that is where we started our conversation. As I looked at the smiling, relaxed, healthy-looking young woman who sat in front of me, I was shocked to hear that she has been in intensive physical therapy since January after a major flare rendered her unable to walk. As we progressed into the discussion, she explained that the severe damage to her occipital lobe due to abuse in the form of shaking at five-weeks of age caused her complete blindness, severe spasticity throughout her body, and as of eight years ago complex migraine with aura and allodynia.

The Results of Shaken Baby Syndrome

An info graphic  explaining the job of the occipital lobe showing a clipart brain with the occipital lobe colored in in burnt red, on a burnt read background.  Burnt orange and white font explaining the role of sight, determining color, accessing distance, size, depth, reading, recognizing object movement, and identifying visual stimuli in order to understand the external world visually.
Due to having six separate brain bleeds at the age of 5 weeks, Bridget lost her sight.

When Bridget explained to me about the abuse she experienced as an infant, she shows empathy when speaking of her caretaker at the time as someone who, “Probably was very overwhelmed and probably didn’t have the best coping skills.” She went on to say that when they did the MRI, they found six bleeds in her brain which meant that the shaking had happened more than once. Due to having the six separate brain bleeds Bridget lost her sight and developed spasticity, a movement disorder that causes tightened or stiffened muscles and involuntary spasms. At the age of 19, she developed complex migraine with aura which they believe is genetic. “As my headache specialist explains, the TBI likely exacerbated my migraine severity, but even without the TBI migraine was in my genetic makeup.

Bridget explaining what happened when she was five weeks old.

As we talked, Bridget told me that she could identify with the all over body pain that I experience daily. It is because one of the side-effects of the complex migraines she suffers is called Cutaneous allodynia which is pain over all her skin and especially her scalp. “Many times people think that I’m cold or aloof because I don’t want to be touched or hugged,” she confided. “It’s not that, it’s just I really don’t like being touched; it causes me pain.”

Despite living with chronic pain all the time and the worry of a migraine literally taking her down for days, she continues to pursue her love of learning. She’s finished her Bachelor’s degree with a secondary special education focus and is now attending college in Boston to get two master’s degrees: Masters in Education in Vision Rehabilitation Therapy and the second in assistive technology. She would love to work for a rehab hospital or a VA hospital to help veterans who could benefit from assistive technology.

Bridget explains why she didn’t go into the special education classroom after getting her degree.
Her focus has changed to helping others learn to live FULLY while dealing with brain injury or loss of sight.

Interview Questions and Answers

I had sent Bridget questions ahead of our conversation; however, with this being my first ever interview, I totally went off the cuff and didn’t look at my questions. Luckily, I recorded our Zoom meeting (with her permission), and have been able to take a few audio clips. I feel that listening to Bridget tell her own story is very impactful.

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Thanks for reaching out to me. How did you find my post about wanting to share other’s chronic pain stories?

Bridget talks about how sharing our stories can help to eliminate the stigma that our culture puts on us
and even the internal stigmas we put on ourselves when living with chronic pain.

I’m still very amazed that others are responding and being impacted by what I’m putting out into the world through my blog and other social outlets. I told Bridget that I feel I’m writing to the wind. So, having her reach out, really made me feel great. On her blog beyondcoffee.info, she has the quote “Your story is one of your best self-advocacy tools.” This, I believe, is so true. Bringing awareness through sharing our stories will positively change the culture in so many ways by bringing overall awareness and understanding. I have found friends through sharing my story, and this has given me a sense of community. I’ve learned so much about pain management and have received so much encouragement that all is not lost because of living with chronic pain from others sharing their own journeys. Sure, we may be preaching to the “choir” but there are a few others that are touched each time we do.

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What does your illness really mean, in terms of your day-to-day living?

Bridget tells of her first migraine with aura at the age of 19 and the impact it has had on her life.

After we had spoken for an hour and a half, we called it quits. However, I realized that I hadn’t asked her some key questions so we’ve been communicating through messenger. Bridgett explains what life with complex migraines is like as a graduate student who has to meet deadlines. “I have to take everything day by day. On my good days, I try to get as much done as I can. When you are an individual with a chronic illness, you don’t have the luxury of procrastinating. There have been plenty of times where I will start an assignment and think I could continue it tomorrow, but tomorrow comes and I lose the next five days to a severe migraine attack.” She goes on to say that her professors have been pretty accomodating. Also, after her previous educational experiences, she knew to push for strong accommodations right at the start of her graduate career. “I had a very direct conversation with my accommodations coordinator about the unpredictability of chronic illness. She didn’t really understand me, and when I said I had Migraine Disease, she was quick to tell me that I couldn’t get any accommodations for my ‘headaches.'” However, to say that Bridget has “headaches” is a gross understatement.

Understanding that her accommodations coordinator didn’t understand how debilitating her migraines are, Bridget did not hesitate in informing her that migraine is really a disease of brain function, and a headache of my attacks is just one symptom. “It gave me a great opportunity to inform her of symptoms like transient aphasia, vision changes, and numbness or tingling down one side of the body.”  By the end of their conversation, Bridget was able to receive accommodations for assignment submissions and frequent breaks.

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You have multiple chronic issues: body spasticity, cutaneous allodynia, and complex migraines, can you explain the type of pain you experience?

Bridget explains how her complex migraines affects her body her whole body.

“It stops you in your tracks,” Bridget explains about her migraines. Her symptoms include tingling down the right side of her body which is accompanied by a flickering phenomenon in my left eye, lightheadedness, and transient aphasia (loss of speech). Then, the excruciating pain hits, leaving her curled up in a ball of agony unable to function at all. This has landed her in the hospital on a few occasions. The migraine pain then ramps up her cutaneous allodynia pain. Her doctors aren’t sure why her spasticity flared up in January leaving her even unable to stand. “Being that migraine has a significant impact on the central nervous system I wouldn’t be one bit surprised if the attacks were part of the catalyst. I think there was so much dysfunction going on in my brain with my last severe intractable attack, my nervous system was probably overloaded and unable to send the correct signals.”She is now going to physical therapy twice a week to help her regain her ability to walk. Through botox injections, muscle relaxants, and physical therapy, she’s slowly gaining her ability to walk, eight-months later.

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Have you found ways to manage and or lessen the degree that your migraines impact your daily life?

Knowing her triggers has helped Bridget manage her migraines to keep them at bay much better in recent years. “Having adequate neurological care is so important. I struggled through undergrad because I was uneducated and did not know what type of care I needed. After seeing the 2017 Migraine World Summit, I learned about the field of headache medicine in neurology. It took me an additional year to take the plunge and see a specialist, and that is mainly due to the limited number of doctors who specialize in this type of neurology.” Since this time, she’s begun injections into her head, a greater and lesser occipital nerve to prevent occipital neuralgia which is a sharp pain starting at the base of the neck and shooting up into her head. In addition, she gets 31 Botox shots to her head, neck, and shoulders to help stave off migraine. “There comes a point where you do just about anything to eliminate pain.  I can tell you that decision doesn’t come easily, so when someone says ‘it’s just a headache’, I want to tell them about the lengths I go through to try and function from day today.” She has recently been trying a new FDA prescription drug called Nurtec, and so far, she’s really liking it and finding good relief. Her main over-the-counter palliative care is her ice hat that she bought on Amazon. It may look funny, but you really don’t care when you’re in pain.

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Have you struggled with getting the treatments you need due to insurance, finances, or other issues?

Fortunate to have insurance, Bridget is able to have very affordable daily prescription medications. However, her insurance does not cover the needed procedures to manage her migraine disease. Botox and nerve blocks are not covered. With Botox injections every three months, she has to pay even with supplemental coinsurance) $585 for those. Annually, just for the botox, she is responsible for $2,500. However, her hospital coverage is good which she says has been very helpful. “There have been times where I have had very complex neurological symptoms or I have become dehydrated which required medical intervention through IV infusions.”

I think another thing that has really impacted me negatively with my insurance is the prior authorization, step therapy, and nonmedical switching. “For just about every single treatment I have needed for migraine and occipital neuralgia, I have needed a prior authorization. This delays treatment and sometimes the request is denied.” Those delays or denials cost her days and days if not more of agony.

“Step therapy is an insurance policy that requires an individual to try and fail a certain number of medications in a certain number of classes before they can be eligible to try a targeted treatment.” Bridget went through some very difficult and life-threatening periods because of this. “My insurance company required that I try and fail a total of four oral medications in two different classes of medications. I was on anti-seizure medication that caused me to become very underweight, and I experienced such severe anxiety and depression. I was having suicidal thoughts daily for over a year.”

Due to losing the ability to walk after the flare this past January, Bridget had to resign from her job in February. This has had a major impact in how she is able to financially make everything work. “I am very fortunate that I have financial aid for school, but transportation and medical costs have been a problem.

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What advice would you give your younger self after all you’ve been through and what you know have come to understand?

  • Don’t let others dismiss your experience and intuition. ” I had been told by so many doctors that I was just a stress college student and that ‘My anxiety was causing my headaches.’”
  • Get educated on your illnesses.
  • It’s so important to be aware of how your diagnosis can affect you from day to day.
  • You have to be willing to have open conversations with others to get what you need.
  • It’s very likely that you will face prejudice and stigma. But sharing your story will be your greatest self-advocacy tool.
  • You are worth fighting for, and when you get so low that you feel like you can’t go on, know that you strong enough to make it through.

An Opportunity to Grow

Through interviewing Bridget and the research I did to write this post, I have grown a lot in my understanding of the chronic pain issues that she lives with every day. Through that understanding, IfI have come to admire this intelligent, resilient, and strong young woman who has advocated for herself so that she in turn will be able to advocate for others.

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If you would like to share your story of living with chronic pain, contact me. The more we share our stories, the better this world will be for those living with chronic pain.

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