Title image: light teal background with White/Purple lettering, purple circles made of differing thicknesses of lines under an orange and gold brain with lightening bolts shooting out from it.

The ADHD/Fibromyalgia Connection

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.

Light teal background with gold and purple banner with Title, gold and orange brain graphic with lightening bolts coming from it on top of purple circles created by varying thicknesses of lines.

Early on a fall Saturday morning, I had the pleasure of talking with Dr. Michael Lenz over the phone.  He was hustling his teenage daughter into the car as he greeted me.  We talked on his drive to drop her off at a school to ref a volleyball tournament.  And then, we continued on his drive home.  We spoke for just under 2 hours, and I felt like we could keep going.  

“I love to talk about these things,” Dr. Lenz said, “so when I find someone who is interested too, I can go on and on.”

Dr. Lenz is a wealth of knowledge in all things Fibromyalgia and ADHD, which is why I wanted to interview him.  However, he came to this specialization through having a heart for those who don’t have anyone to champion them. 

Dr. Lenz has a family medicine practice in Delafield, Wisconsin, where he is both a pediatrician and internist, specializing in lipidology and lifestyle medicine. “I enjoy working with patients of all ages,” he explained. 

At first meet, I caught his positive energy and passion for helping those living with Fibromyalgia and ADHD. “I just sort of fell into seeing more and more of the patients that many others didn’t want to treat.  That has led me to want to learn as much as I can about FIbromyalgia and ADHD,  so I can better treat my patients.”

Being I was diagnosed with ADHD as an adult the year before being diagnosed with Fibromyalgia, I was especially interested to hear what he had to say about the connection.  I had found some research about ADHD and Fibromyalgia, but I otherwise hadn’t ever heard of anyone talking about the possible relationship.

Join me as Dr. Lenz and I talk about the ADHD/Fibromyalgia Connection.

I hope that you have found this interview enlightening and helpful. I come to understand a lot more about my own health journey.

Dr. Lenz and I talked about dividing this video into smaller sections, which I will work on and update here for easier listening. Being this is my first experience with a video interview like this, I’m still working on learning the “hows”.

Resources Mentioned in the Interview

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. I appreciate your understanding.

Continue Reading:

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Fibromyalgia and the Highly Sensitive Person

Guest Post by Jade Bald

My guest post author is not a trained medical health professional. Jade is a writer, a student of history, a fibro patient, and a cat mom. She shares her journey to provide some insight and hopefully ideas that may be helpful to others dealing with similar issues. Always, consult your doctor before trying anything new.

Jade and I connected via Linkedin when she shared that she had recently learned that she was a HIGHLY SENSITIVE PERSON and that understanding helped her to finally understand why she had developed Fibromyalgia. In my search (the one anyone with a chronic illness tends to have), I, too, learned that there is such a thing as the HIGHLY SENSITIVE PERSON temperament which researchers have found is something 15-20% of the population is born with. When I then learned that my adverse childhood had actually impacted me way more than I realized, I came to not only understand why I had developed chronic illnesses such as Interstitial Cystitis and Fibromyalgia, but what I could do to live FULLY despite chronic pain and other chronic symptoms that had brought my life to a halt five years ago.

Please, join me in welcoming Jade Bald to the PFL community as she shares her story and insights.

Why Me?

I was never an experimenter with drugs, cigarettes and alcohol. It wasn’t a religious thing or because there’s substance addiction in the family, it simply didn’t appeal to me.

I mean hangovers? All that good feeling for a bad feeling afterward? I’ll pass, thanks. Not to mention the way booze has a drain on your wallet. Oh, and it alters your personality and sleep cycles, too.

I have already dealt with poor sleep, why on earth would I drink?

Besides, after learning about the horrendous effects these had on the body, I vowed never to touch the stuff. (I did try, however, a little bit of rose for my 30th and despite the wonderful taste, and how it helped a little with the pain I was experiencing, I didn’t feel too well the next morning).

On top of this, I lived a  clean lifestyle. I was, in retrospect, on the verge of orthorexia (an obsession with clean eating) during my teens. I walked to school every day and went to a fitness class three times a week.

In addition to living a very clean lifestyle, there is no family history of chronic illness or issues of illness when I was growing up.

This is why I didn’t understand why I could develop a chronic illness like Fibromyalgia.


A Possible Clue

Three years ago, in early 2019, I learned I was a Highly Sensitive Person (HSP).

Learning this helped me to understand why I developed Fibromyalgia seven years ago. Being an HSP means, in scientific terms, I have sensory processing sensitivity (SPS).

Attributes of the Highly Sensitive Person (HSP):

  • HSPs tend to be overstimulated by drugs, caffeine, sharp scents, loud noises, etc. Of course, every HSP is different in what they can and can’t tolerate. Often, medicine has to be taken in lower doses and even titrated (slowly increased to prescription dosage) over a longer time that non-HSP.
  • HSPs tend to be more prone to burn out and to stress induced illnesses like FMS, CFS, IBS, etc.
  • HSPs are generally more sensitive to pain, both physical and emotional.
  • They take things very personally at times and this can make them rejection sensitive, especially if they did not have a secure attachment growing up.
  • HSPs have intense emotions. Where a non-HSP feel something from 1-5. For an HSP it’s more in the 6-10 region of a 1-10 scale of emotion.
  • HSPs feel more deeply the physical sensations of the body, meaning they have excellent interoception. In the article Introception: How We Understand Our Body’s Inner Sensations, the author Kim Armstrong states, “‘Brains didn’t evolve for rationality,” said Barrett. “They did not evolve for you to think or to perceive the world accurately. They didn’t even really evolve for you to see or hear or feel. Brains evolved to regulate a body so that it could move around the world efficiently.'” The HSP is constantly noticing how they feel.
  • HSPs tend to be creative, imaginative, and enjoy the arts, whether that’s fine art, music, or dramatic arts. They enjoy the company of animals and animals tend to enjoy their company! Many HSPs become vets, zookeepers/zoologists, or animal rights activists.
  • HSPs are conscientious, wanting to do what’s right ALL the time and wanting everything to be fair for everyone. They’re honest people, but because they are so honest, they expect others to be the same. Thus, they are seen as gullible, and some people take advantage of them.
  • HSPs tend to be perfectionists or have very high expectations of themselves to not mess-up. They have the “do it once and do it right” mindset.
  • HSPs are often thought to be introverted; however, there can be both introverts (70%) and extroverts (30%).
  • HSPs are often perfectionists or have very high expectations of themselves.
  • HSPs are both men and women.
  • HSPs prefer writing to speaking.
  • HSPs have a rich, complex inner world.
  • HSPs have interest & curiosity in many subjects. The famous phrase “jack of all trades, master of none” comes to mind. This is why many are teachers.
  • HSPs have a brain that won’t turn off (not necessarily due to anxiety), making sleep harder to obtain.
  • HSPs really need abundant sleep to function well. Whereas a non-HSP can get by with seven hours, an HSP should be getting eight or more hours. An HSP with fibromyalgia should be sleeping even more.
  • HSP is not a mental disorder. Although, given the right environment in childhood, having this trait can make you more vulnerable to mental and physical health issues. (Children with the trait who are raised in chaotic, abusive, traumatizing homes are far more likely to have both physical and mental health issues later on.) Also, the HSP trait is not  linked to autism or ADHD. A lot of folks think it’s a milder form of these conditions, but as much as some traits overlap, like sensitivity to external stimuli or obsessions, it’s not the same thing.
  • HSPs finds small talk boring, and insignificant. They like deep topics and intelligent discussions. They would rather read books, watch documentaries, or listen to podcasts on important topics rather than listen to someone chatter on about shallow things. Non-HSPs may find them snobbish’, ‘aloof’, or even anti-social.
  • HSPs tend to be more reserved or serious; they prefer to observe and ‘warm up’ to novel people and situations.They may be noted by social scientists or psychologists to be inhibited types, who seem ‘shy’ compared to non-HSPs.
  • HSPs are often so overly concerned with others which can mean they are boundary-less. They often become people pleasers/codependents, and this in turn makes them prime targets for narcissists and emotionally toxic people. Not to mention, this biological lens that actually alienates them from themselves, focussing on others way too much, can make them run into compassion fatigue and burn out.

Childhood and the HSP

Learning that I was a Highly Sensitive Person helped me to better understand myself. The list above feels like I’ve been seen. Looking back on my childhood, I now understand why I was always drained by social activities, even as a child, among a whole host of other things found in the list above.

My mother, an Adult Child of an Alcoholic (ACOA), was emotionally immature and possibly narcissistic. She definitely had anxiety and anger issues, but who can blame her, after growing up in such an environment? I could sense her frustration.

I wondered is it me? Are you upset because of me?

I didn’t have the greatest childhood growing up: my dad cheats, mom divorces, and then dad dies a year later.

Then my mom decides to go back to school for criminal law, after working in geology for a decade. She was the exception to the rule- many ACOA’s have low intelligence levels. My mother earned four degrees, two in geology and two in criminal law. We moved many more times after she finished school. My childhood was a blur of houses, streets, rooms, and schools. I was bullied a lot because I was always the new kid and I had a slight stutter.

I was a nerd, but not by the high school social definition. I never felt I fit in with those my own age. I wasn’t into any groups and didn’t join clubs. I was solo most of the time because I wasn’t a Goth, a Prep, a Jock. or Ms. Popular. I now understand that my tendency to go it alone was actually my highly sensitive disposition looking to stay calm and safe. This I got from being in places like the library, bookstores, or the zoo. I also liked going to the beach, where I could listen to the waves roll in, see the sun glisten in the sky, and feel the hot sand underfoot. I liked the cry of gulls and the scent of the seafoam wafting through the air. In these environments, I used my senses to calm myself and inspire joy and awe deep within.

So discovering this all made sense as to why I would develop Fibromyalgia in my early 20s. My energy tank had gone down to zero with all that stress, and I was paying for it way too early.

Teal and white drawn lotus/waterlily

Jade Bald is a history graduate, fibro patient and cat mom.
She has written for 25 blogs and penned over fifty guest posts.
Her website is: jadebaldwriter.weebly.com
Pinterest: northernwriter
Twitter: jade_bald
Linkedin: jade-bald-writer-and-researcher

Speaking with Jade, I identified with much of her story. While I developed Fibromyalgia later in life (age 54), I’ve recently realized that I am an HSP with complex trauma from childhood. The combination certainly led me to live all my life in the fight/flight/freeze/faun (without realizing it). As I have researched what it means to be an HSP (extroverted in my case), the knowledge has given me tools for how to heal.

If you identify with this post, know that being an HSP isn’t a negative. It’s just a way of being like any other. But understanding what it means can help you better understand what you need to heal.

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. I appreciate your understanding.

Continue Reading:

Reclaiming Wholeness thru Creative Play with Elaine Merryfield
When we engage in creative play, it’s an active form of meditation.  …
The ADHD/Fibromyalgia Connection
Dr. Lenz is a wealth of knowledge in all things Fibromyalgia and …
Favorite “Alternative” Treatments for Fibromyalgia
u get a diagnosis of fibromyalgia, it can be so confusing as …
teal line drawn waterlily with teal lettering of the title and motto
Background, sandy beach at Pictured Rocks Nat. Park at sunrise, aqua sheer layover with title: Waliking Through Walls: Chronic Pain Won't Stop Me Anymore

Walking Through the Walls: Chronic Pain Won’t Stop Me Anymore

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.

Last week, I did something I thought I’d never do again.  I backpacked for the first time in five years! 

Fibromyalgia Walls Closing In

As I followed the best advice from experts in the management of Fibromyalgia, I found that I increasingly felt closed in, cut off from what I felt I could do. Those of us living with Fibromyalgia know the fear of the flare. We’ve been told that limiting our activity is the best way to keep that at bay. The fine balance of doing and resting tends to be the focus.

For me, one who has been very active all my life, the more I followed this commonsense advice, the more I felt like the walls of Fibromyalgia were closing in on me. I had given up the thought of ever doing many things I loved to do. Actually, I was coming to accept that was the way things were.

After this experience, chronic pain won’t stop me anymore from doing the things I love.

Related Readings:

A 40-year old Katie, brown hair, wearing a t-shirt and shorts portaging a canoe over her head. Background is wooded (Algonquin Provincial Park).
Me, portaging a canoe at Killarney Provincial Park, summer of 2011.

Life Before

Prior to developing Fibromyalgia, I lived a very active life.  After a full day of teaching, I’d come home to a full night of family life.  On the weekends, my husband and I often do all our house chores of yard work, laundry, and the like, as a family.  Then, we’d fit in a hike,  family gathering, or attend our kid’s soccer games.  

In the summer, we would go on extended vacations that tended to be both rustic and physical: hiking down the north side of the Grand Canyon, a week-long canoe trip in Killarney Provincial Park, or exploring Isle Royale.

That all came to a halt in November 2018 when I found myself struggling to even work.  My last day of teaching was December 7th, 2018 when I went on long-term leave, fully believing that if I took a month or so to take care of myself, I’d be able to go back.  That didn’t happen, and since that time, I’ve spent most of my time focusing on getting well.

Related Readings:

MY LDN Journey

A huge part of my healing work has been done through research.  Living in a small, rural Michigan town, there’s no one who knew much about Fibromyalgia.  I, myself, had never heard of it before my diagnosis.

Discovering Low Dose Naltrexone 2 years ago, led me to a point that I could actually consider going on a 40-mile, 5-day hike along the North Country Trail in Pictured Rocks National Forest.

This past April was my one-year anniversary since starting Low Dose Naltrexone.  I’ve detailed my journey through my blog. However, it was soon after that I talked with Linda Elsgood and discovered that I should look into taking my best dose (4.5 mg) twice a day rather than what I had been doing, dividing the full dose into two separate doses of 1.75 mg.

After further research, I found that for Fibromyalgia and C-PTSD, doctors have been finding good success with two or even three doses a day.  (LDN Book 2 & Dr. Brian Johnson)

Related Readings:

Two older women standing on either side of a large builboard map of Pictured Rocks trail, each smiling while packing 30+pound backpacks and wearing backpacking t-shirts, pants, and boots.
Map of Pictured Rocks trails.

A Chink in the Wall

Only this winter, I turned down the offer to do this exact hike with two of my best friends.  I just didn’t feel I was able.  However, since starting the double dose of 4.5mg (on waking and around 4 pm), I was able to have more active days and finally be more predictable.  

I began to hike again with a group of women (my age and older) called the Wander Women of Newaygo.  Every other week, we would do a day hike of 4 to 9 miles. As the weather warmed up this spring, my husband and I began to do day hikes, but also some rustic camping over several days, including day hikes and kayaking.

Last month, I was feeling pretty strong during a hike (those of you who get into the woods know it can cause a thing called “hikers high”. It was then that a newly acquainted hiking friend from the WW group asked if I would like to join three others on a weeklong trip.  Impulsively, I said, “I’d love to!”

Related Readings:

Three older women sitting on a fallen tree trunk which was laying over the trail.  Their full backpacks are facing the camera.
Taking a much-needed load off in the middle of the North Country Trail.

Doubt Takes Hold

When I went home, though, and told my husband, the reality of the trek hit me.  (He had done the hike the summer before with my cousin and found it very challenging.) He was worried that my body would lock up and I wouldn’t be able to make it.  Being there is no cell service and he was to be out of town for work that week, the concern was real.

The past few months prior to the hike, I was involved in a lot of long hikes, yard work, and moving my daughter from a four-bedroom house to a 3rd-floor apartment. This level of physical activity had proven tough on my body.  My body literally locked up, giving me electrical zaps and zings in my lower back that would cause me to have to freeze.  However, with the LDN and other management protocols I use, I was able to keep going day after day.  

What amazed me was how clear my brain was and how much energy I had each day.  This had been the cause of my early retirement.  I could mostly push through the deep muscle pain I have everywhere, but the inability to think/talk and the feeling that my body was filled with wet sand, made it impossible for me to function.  

Now, I will admit, before my LDN dose kicks in (generally an hour after I take it in the morning), I struggle to move.  I tend to be really zombie-like and the pain/tight muscles really need massaging.  But after that, I have been pretty good until the afternoon. I can feel myself “dropping” which leads me to take my second dose.

Related Readings:

Three older women, standing smiling into the camera with the beautiful blue of Lake Superior and the arch rock formation at our backs.
Lake Superior and Pictured Rocks Arch in the background.

Call to Be Courageous

The group of three women, all older than me and very supportive, understood my concern.  Nancy, the one who had invited me, offered to do weighted hikes (meaning I carried a backpack that I gradually increased in weight over several hikes).

 Also, she helped me develop two contingency plans.  One: being it’s a straight path, I could just rest and do my myofascial release with the therapy balls I would bring with me. If that meant they went on ahead, that would be fine because I could catch up with them once they stopped at the designated campsite.  Two: the trail has a few drive-up spots for day campers/hikers.  I could most likely find someone to take me out to the town, so if I carry my ID and Visa, I could go to a hotel. (I had packed my pain management paraphernalia in my overnight bag for after the hike, which I could get access to in this case).

In the end, I just felt called to do this hike.  I can’t explain it, but I think the walls of Fibromyalgia had been making me feel more and more limited; I just had to break through to prove that I can live the FULL life that I have been striving for.

So, I purchased a lighter-weight tent, backpack, sleeping bag, and a few other special things.  All our gear was 25+ years old, so it was reasonable, but it also locked me into doing the hike.

Related Readings:

Four older women, smiling while wearing their full rain gear and backpacks after a night of thunder storms.
After a night of thunderstorms,
we are drenched but ready for the day’s hike.

Hiker Ups and Downs

I’m not going to say this trip was all sunrises, Caribbean blue waters, and campfires, but a good portion was.  For the upper peninsula of  Michigan, the weather was pretty perfect for the hike (70o days and 50o nights).  Also, there were NO bugs (a miracle, really).

We had a pretty intense thunderstorm the first night.  My tent stayed dry, well almost.  

I also have Interstitial Cystitis, and as I have been working on “Unlearning this Pain” with Dr. Howard Schubiner, I had been having more intense bladder spasms the few weeks prior to the hike. 

This was a main concern of mine, so I had packed with me a women’s urinal, Circa Care pee cloth, a few level-5 Poise Incontinence pads, and some quick-drying, moisture-wicking underwear.  Dr. Schubiner told me to keep no secrets and use humor with my situation, which I did my best to follow.

That first night, after getting up 3 times to pee in the woods, the storm began to rage, about 3 am.  In the end, I realize that I should have just gone out into the storm at 5 am when my bladder started to demand it because either way, I’d get wet, but I just couldn’t think straight.  

In the end, I was able to wash things out at our next stop, using biodegradable soap. Using my pads, I had only gotten my underwear and thermal leggings wet. After this situation, I didn’t have any more issues at night, other than getting up like 4 times.  However, hiking with a 32-pound backpack doesn’t make it all that easy for an attack of urgency.  Luckily, my companions fully understood, and we all shared embarrassing stories that got us laughing pretty hard about the whole absurd situation.

Related Readings:

Three older women on a sandy beach, blue skies above and pine trees in the background, doing sun salutation with hands together above their heads.
Morning yoga at Mosquito Beach before getting our water filtered.

Retraining My Painfilled Brain

The first three nights of backpacking an average of 8 miles a day, found my body seizing up and zapping me as I worked to put up my tent and make my dehydrated dinner.  I had packed two main luxuries: a camp chair and four 6 oz plastic bottles of wine to have one per night.  

Even though the zings and zaps came, I would stop briefly and then continue on.  Each night in my tent I did my “rolling around on my balls” as I told my fellow hikers (myofascial release) and in the morning did stretching and yoga. At night, I did guided meditation (based on the MBSR of John Kabat Zinn). While I hiked, I walked mindfully and did a lot of gratitude and positive affirmations, “I am strong. I am safe. I am healthy.”

What may be a breakthrough is that by the 4th night, the electrical shocks in my back had stopped.  Even after the 5th day of hiking, I didn’t have that issue.  I believe this is because I’m showing my over-amped nervous system that I am actually okay and not hurting myself.

Three older women looking out at brilliantly blue Lake Superior from a sandy ledge, eating lunch.
After sitting down, it was definitely hard for me to get up.
We still had 6 miles to go.

Change to Three Doses a Day

After the first night of extra pain in my elbow and knee joints, keeping me awake and feeling pretty worn out about 7 pm each day, I decided to take a third dose of 4.5mg. I had been taking my second dose earlier in the day (2 pm) than when I was at home, and so, I took another at 9 pm.  

With all the physical exertion, I didn’t have my normal struggle to fall asleep that I usually do with taking LDN at night.  Also, the level 6 joint pain was much less through the night.  I believe this extra dose really helped me to do the whole 40-miles.

Four older women, bare feet, standing in Lake Superior.  Sandy beach in the foreground and gray cloudy skies above.

Hiker High

I can tell you that six days after coming home from our trip, I still am feeling the “high”.  I didn’t have the awful “flare” that those living with Fibromyalgia dread so much.  I’ve had less activity and have done a more myofascial release during these last days because my legs are definitely more clenched up. 

However, my mind is feeling fairly clear and my body feels up for having my granddaughter spend the night. 

I am so very grateful to have broken through this wall that I had thought was permanent. I know now that I am able to do the things that I love with people that bring me joy. LDN has been an integral part of getting me this far down the trail.

6 year old girl dressed in all black pointing a wand at the camera, a older man, red/gray beard dressed as a Hogwarts student, scowling, and me, white hair, wearing Griffindor colors/tie and pointing a wand at the camera as I try to look scary.
The day after I got home, my husband and I spent with our granddaughter at the Zoo for Wizarding Day.

I have spent four years on this wellness journey. I do not want to give the impression from this post that I could have ever jumped to this endeavor without all that has come before. I needed to follow the conventional wisdom of pacing, etc. to be able to calm down my nervous system to even be able to function enough to work toward this goal. There are MANY things that led up to this moment and many things that I continue to do. To learn more, read about my journey from my posts. I’ve documented from the very first few months.

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. I appreciate your understanding.

Continue Reading:

Reclaiming Wholeness thru Creative Play with Elaine Merryfield
When we engage in creative play, it’s an active form of meditation.  …
The ADHD/Fibromyalgia Connection
Dr. Lenz is a wealth of knowledge in all things Fibromyalgia and …
Fibromyalgia and the Highly Sensitive Person
Guest Post by Jade Bald Jade and I connected via Linkedin when …
teal line drawn waterlily with teal lettering of the title and motto

Reclaiming Wholeness thru Creative Play with Elaine Merryfield
When we engage in creative play, it’s an active form of meditation.  …
The ADHD/Fibromyalgia Connection
Dr. Lenz is a wealth of knowledge in all things Fibromyalgia and …
Fibromyalgia and the Highly Sensitive Person
Guest Post by Jade Bald Jade and I connected via Linkedin when …
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:)

My post detailing the hike: Walking Through Walls: Chronic Pain Won’t Stop Me Anymore

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 linked 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. I appreciate your understanding.

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EMDR Therapy: Rewiring the Fibro Brain

EMDR Therapy: Rewiring the Fibro Brain

Kayak in the crisp April morn.

Eye Movement Desensitization and Reprocessing Therapy (EMDR) was originally developed by Dr. Francine Shapiro in 1987 while walking through a park. She was experiencing some disturbing thoughts, but as she walked, she found that the emotion went away. As a graduate student in psychology, Dr. Shapiro was drawn to figure out why. She realized that while she was walking, she had been looking from side to side, up into the trees, then over to the side of the path, back and forth.

Through further research and working with patients who lived with Post Traumatic Stress Disorder (PTSD), Dr. Shapiro discovered that through the rapid eye movement while thinking on traumatic experiences actually lessened the impact of those experiences. Not only that, but patients were able to find peace after much less time than traditional talk therapy.

In this week’s post, I am using A Chronic Voice’s April Writing Prompts of  Springing, Daunting, Grounding, Sustaining, and Luxuriating to talk about my experience with EMDR therapy and working towards calming down my amped up sympathetic nervous system.

The Hope of SPRING and EMDR Therapy

I love spring. After the snow covered hibernation of winter, compounded by the isolation created by this pandemic, I am especially relishing new life blooming forth. I’ve been digging in the cool dirt, planting some poppies in our wildflower hill, raking up the blanket of oak leaves that covers everything in our northern wood’s yard, and going on hikes or kayak rides to monitor nature’s gradual crescendo to summer.

I love to think about how Dr. Shapiro was in nature looking around when she discovered EMDR. I’ve been going to therapy, which has been a combination of EMDR (reprocessing a traumatic memory) and talk therapy since October. While I know I’m moving in a good direction, after ignoring that my trauma-laden childhood had impacted me for 54 years, I’m finding this to be rough, tough work.

I have found a hope in EMDR combined with talk therapy for helping actually get to the crux of my parasympathetic nervous system being constantly on high. I’m one who does a lot of reading and learning and so I have a lot of knowledge for what will help me, but to actually be able to “let down” and have peace in my body has seemed so impossible. EMDR is making that actually seem possible.

Childhood trauma, attachment trauma and developmental trauma, such as abuse or physical or emotional neglect, will take longer to process with EMDR or any type of therapy. This is mostly because it takes longer to achieve a foundation grounded by emotional stability. It takes time to establish resources self-care, from which the patient can comfortably and safely process the trauma.

Robin Brickel in C-PTSD Foundation.org

The Daunting Task of Starting Therapy

It’s scary starting therapy with someone new. Whether it’s your first ever experience or just beginning with a new therapist, it’s a daunting endeavor at best. I had a few experiences with talk therapy: Acceptance and Commitment Therapy (ACT) and Cognitive Behavioral Therapy (CBT) type prior to trying EMDR. And, while I had read up on the research and the how-tos of EMDR, I have to admit it seemed like a pretty weird concept.

On my first visit, my therapist made me feel at ease. She shared how she had gone through the process (a part of her own training) and how it had helped her work through her own trauma. This made me feel hopeful and comfortable with her from the start.

It’s really important (I think in every counseling situation), that you feel validated and comfortable with the therapist. In his book Complex PTSD: Surviving to Thriving, Pete Walker suggests, “A suitable therapist will be happy to answer your question about their approach and generally talk with you on the phone for at least five minutes before scheduling a meeting. Should the therapist respond to you in an aloof, critical or shaming way, I would immediately cross them off your list and keep looking. Finally, there are unfortunately many untherapized therapists in the community. I believe it’s appropriate to ask a prospective therapist if they have done their own therapy, and to at least get a response from them that indicates that they have and have found it helpful.”

Essentially, complex trauma creates a long-lasting trauma imprint or response that impacts your brain and body enough to feel like it’s a permanent change.  Using the example above, the neural pathways of the brain connect the sight of the frown and danger, for instance. For people with complex trauma histories, the mind and body may be in a chronic state of stress and hypervigilance, always waiting for the other shoe to drop. 

Robin Brickel in C-PTSD Foundation.org

Being my trauma isn’t a single event, but a childhood of uncertainty and fear being raised by a single mother who was undiagnosed schizophrenic and bipolar, it took a few sessions for her to get enough of my story to understand how best to start.

For me, telling her harrowing stories from my kidhood is just that-a storytelling. I can tell them like I would read outloud any novel to my students. I don’t feel emotional about it.

However, I do feel it in my body. I get a heavy, tight feeling at mid sternum. I’ve had this since for as long as I can remember. With Fibromyalgia now thrown into the mix, my body begins to react by clenching of my stomach muscles and inner thighs. Often my bladder (diagnosed with Interstitial Cystitis over 10 years ago) will begin to ache and burn. Often my shoulders and neck get more taught and can begin to cause a headache.

Grounding and Regulating Exercises Before Reprocessing Starts

Grounding is a practice that can help you pull away from flashbacks, unwanted memories, and negative or challenging emotions. These techniques may help distract you from what you’re experiencing and refocus on what’s happening in the present moment.

30 Grounding Techniques to Quiet Distressing Thoughts in Healthline (click to go to the article)
Text in blue: Container Exercise with a visual of a wooden treasure box with a brass closure for Grounding and regulating
The container can be anything. Needs to make sense to you.

Container Exercise

At my first visit, my therapist made what seemed to me to be a strange request. She asked that I create a container. This container, she explained should be able to be locked securely. However, it should also be “comfortable” for difficult thoughts to abide in.

Being I’m a big fan of all things Harry Potter, I immediately went to Dumbledore’s Pensive. However, that is open, so in the end, I came up with a wooden treasure chest with iron type closure. Inside, I put a light blue velvet lining.

Because I have been practicing breathing techniques for calming down my nervous system, I imagine that I breathe in healing and breathe out the stressing emotion/thoughts into the box and the closing the lid and latching it tight. I practiced this for a couple of weeks.

Blue Text: Imagery Exercise with image of a path with aspen trees lining it.  The leaves a bright yellow and gold. Imagery is used for grounding and regulating.
Need to make the scene as
multi-sensory and detailed as possible.

Imagery Exercise

In addition, she had me try a few others. My favorite is imagining a favorite place (no people added in) that I would go to. I’ve woven together a few favorite places. I walk down an aspen tree laden path. The leaves are yellow of fall, yet it’s summer (warm and brilliant blue skies). The yellow, silver dollar leaves litter the path like Dorthy’s yellow brick road. This path leads to a secluded small lake surrounded by white pine and aspen. I sit down on the warm, sandy beach, leaning up against a warmed smooth boulder, looking out at the sparkling ripples on the lake. The sun is warming the left side of my face. Sometimes I imagine diving in and swimming in the warm yet refreshing water. I can feel the support of the water, giving me weightlessness.

Blue font: Reproccessing Trauma Image of a sad young woman looking out a window her hand pressed to the glass.
Reprocessing this one traumatic event
has made me realize the layers of guilt, sadness,
anger, and fear that I’ve lived with all my life.

EMDR Reprocessing by Sustaining Focus on a Specific Traumatic Event

After my counselor got to know enough of my story (not all) which took about three sessions and I was comfortable with centering techniques (which I practiced during that 3-week time in session and on my own), we were ready to start the reproccessing of my trauma.

Choosing the Traumatic Event

As I have mentioned, I have many memories of traumatic events from those I was told of as an infant to those I remember. However, most are pretty vague and I don’t have a lot of sensory detail nor a complete time line. Most are snippets of images, facial expressions, sounds, emotions…

I finally chose one episode that I know what happened before, during, and after semi-clearly. It was the last time I ran away from home after a fight with my mom. I walked the 5 miles into town to the home of a friend I had become pretty close with in the past few months.

This scene is laden with guilt, fear, anger, resentment, and deep, deep sadness. It was the last time I lived with my mom and sister, together as a family. My mom, arriving at the home, went into an intense rage when I wouldn’t come out and get into the car. The police were called and she ended up threatening my life, my friend’s family, and herself. She was taken in handcuffs into the back of the police car. From the police station, she was committed to the state psychiatric center.

Blue text: Reprocessing Trauma Image of feminine hands typing on a lap-top keyboard to show my healing experience that has allowed me to finally write about EMDR therapy.

How Reprocessing Works

As we touch base on whatever is on my mind, my counselor gets out the hand tappers. These tappers cause a buzzing noise and vibration. I hold one in my right and one in my left hand. She asks for me to bring up the event as vividly as I can. Before turning them on, she fills out a rating scale of sorts, asking me what level of stress I am feeling, where in my body I’m feeling it, and what emotions I am feeling as I think of it.

From there, she turns on the tappers which buzz in alternate hands at a rapid pace while I sustain focus on the event. Visualizing on this, like a meditation, my mind goes from one thing to the next. I don’t talk during this time. Often I get pretty emotional, crying and shaking. My counselor stops me to ask what I am feeling. She’s taught me to notice where in my body I’m feeling sensations and I explain this with as much specific detail as I can with words- which is NOT easy to do. I often will explain where my thoughts went to and emotions I’m feeling.

She generally doesn’t say much during this time. “Good, keep going with that. You’re doing well,” she’ll encourage. She has mentioned to me that she observes certain body language, facial expressions, etc. to know when to stop.

As we get close to the end of the session, she slows down the tappers quite a bit, and tells me to use my grounding techniques to bring myself back to calm. Using the container, slow breathing, and visualizing my happy place, I bring myself to a point that I can leave the room without being agitated.

After this, I’m pretty spent. Many times I go home and don’t do much at all. However, I always feel lighter somehow. Often I even feel a bit giddy, joyful. The first 3 or 4 weeks of reprocessing found me having more difficult days during the week. I experienced great sadness, a “fibro” flare of fatigue and fibro fog.

The previous three weeks, I have had a very difficult time writing my blog post. However, after yesterday’s session, I felt energized. I actually went grocery shopping afterwards. My husband noted what a good mood I was in. And today, I have finally written this post after 3 weeks of attempting it. I think I’m healing!

*EMDR uses bilateral stimulation, which can be through side to side eye movement, stimulation in right/left via the hand tappers, or even feet tapping. Online, you can even find special music that plays bilateral beats. You must wear ear phones to benefit from this.

Dr. Andrew Huberman supports EMDR as a form of rewiring the brain-especially with trauma.
He talks about how this therapy ignites our dopamine center for taking a forward step towards healing.

Good Therapy is a Luxury that Should be Available for Everyone

I feel very fortunate to be able to experience such a high quality, healing therapy. In the rural area I live in, there are very few choices for therapists that are within a 30 minute drive. I’m blessed with a 10 minute drive to my therapist’s office. Not only are there few to chose from, but those that are available aren’t always ones I would feel comfortable with. (See the above comment on choosing a therapist.)

Beyond the difficulty of finding a quality therapist is affording the needed sessions. I’m fortunate that my insurance covers infinite visits, leaving me with a $30.00 co-pay. So, with going every week, I’m paying about $120.00 a month. This is a cost I can handle. So many in the USA either don’t have insurance or can’t afford the co-pay. This can result in not being able to go to therapy or possibly getting lower quality help due to being regulated to public free services.

I had a friend point out that the very wealthy generally have a therapist on staff. Therapy should be a luxury that everyone has access to.

EMDR and Fibromyalgia

For those of you reading this, you are probably asking is EMDR going to help with the issues stemming from Fibromyalgia. From my own experience thus far is yes in that it is helping me let down in my muscles, but also is helping me towards calming down my nervous system which I believe is directly connected to chronic pain, fatigue, and brain fog. However, this is my story. You will have to investigate for yourself to see if you feel it might help you.

A 36-minute presentation by Gary Brothers, LCSW, Psychotherapist, EMDR Training on The Role of EMDR in Managing Chronic Pain and SUD, 2018.

Further Resources:

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

Thank you for visiting my blog today. 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.I am committing to posting once a week on Fridays.  

Sharing is caring- at least, that’s what my granddaughter says;)

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