Wednesday, May 27, 2020

A War Cry! Pain Warriors Will Not Be Silenced

I have never been a fan of opioids. For me, the side effects are so horrible that I cannot take most. I believe Tramadol didn't make me sick as the first two I had tried, but I was also prescribed the anti-nausea medication to take along with it after my hip labrum tear surgery.

So, when I was diagnosed with Interstitial Cystitis and then Fibromyalgia, there wasn't even a question in my mind about using them. Like most people in the general public, I have heard the horror stories about people getting addicted and even overdosing from their use. The strict crackdown on prescribing and use of opioids seemed to be a good step for the government to take. However, I had no real understanding of what such a blanket policy would mean for the individual who had been using opioids to manage their pain.

A Review of the film Pain Warriors by Tina Petrova and Eugen Weis

Pain Warriors Film Trailer

The Mission

I was introduced to this new documentary through a friend, Jason Herterich who lives with chronic pain. He is one of the pain warriors featured at the end of the documentary. Tina Petrova, the award-winning filmmaker, is his friend. Petrova has been a pain warrior since 1997, when on an icy, windy mountain road in California, she slide off a cliff, plunging down 6,000 feet.

Petrova (director, producer, writer) and Eugen Weis (editor, director, producer) have spent seven years bringing this poignantly enlightening documentary to fruition. Through a crowd fundraising campaign, this film was supported by pain patients and doctors with the goal of giving visibility to those living with intractable pain so that they may be believed, understood, and have better access to treatment that allows them to live FULLY again. 

The film's mission statement explains, "Pain Warriors tackles the other side of the OPIOID CRISIS ~  that of undertreated pain patients and the slow death of compassion that surrounds them....Both Doctors and patients alike suffer~ when a "one size fits all" political strategy is implemented to end overdose deaths and addiction, without the foresight to what happens on the other side of the equation."  This film opened my eyes and brought them tears as witnessed the pain of the four individuals whose stories are told in such a raw and eloquent manner. 

A Synopsis

Firstly, I want to say that the film is captivating in every way-with impactful cinematography put to the beautiful original score by James Mark Stewart that and the weaving together of the four stories, each different, yet the same.  Each story spoke to the very core of me.  When Karen's husband reads from her journal, "...I understand when someone with severe chronic pain feels so bad that they consider suicide. I do not condemn those people," my heart began to physically ache.  I could not hold back my tears. 

This is an honest look at what living with chronic pain is like, especially when one isn't able to get treatment to bring any relief. Their stories bring light to the millions of people living with chronic pain (According to the reported numbers of those living with chronic pain in Canada-7 million, USA- 117million, UK: 10 million, and Australia- 1/5). 

Sherri's Story: The film is dedicated to Sherri Little whose cry for help for her debilitating pain of Fibromyalgia and inability to digest food due to inflammatory bowel disease, severe colitis, and other conditions was shunned by her doctor and then ignored when she made a last-ditch plea with her patient advocate at Cedars-Sinai Medical Center in Los Angeles on July 3, 2015.

Hunter's Story: Little freckled-faced Hunter, 11, and his mom tells his story of surviving cancer after four years of chemo and steroid therapy, he developed chronic pain.  As he explains the chemo is like the Hulk who does good and bad.  As it defeated the cancer within him, it also broke things in his body that caused his chronic pain. His mom states that Hunter, "...feels like he's unheard. He feels like he's unbelieved."

Karen's Story: After a car accident, she dealt with many years of chronic pain and severe headaches without any diagnosis.  Finally, after seeing a specialist who she tracked down, she was diagnosed with cerebral spinal leaks. After research, she then found another doctor who would perform repeated surgery to construct patches.  These did not hold.

Dr. Ibsen's Story: After a 30+year career as an emergency room doctor, Mark Ibsen opened his own Urgency Care practice in Helena, Montana.  In 2013, he began to see more and more chronic pain patients who had been taking opioids to manage their symptoms because their own doctors had stopped prescribing them their medication due to the CDC's new policy and fears of a sanction from the medical board if they didn't. Ibsen was one of the last doctors in Montana willing to prescribe opioid pain medication to new patients, including many who drove hundreds of miles to see him. He explains, "People who have been treated for ten years with pain medications shouldn't be suddenly abandoned."

How to Watch this Very Important Film

This week it was released for purchase (see links below). They had hoped to have showings of this film in various venues, but with COVID-19 that effort has been dampened. Also, Tina has been struggling with her own chronic pain, so they are hoping to get the film out to small groups of people for in-home showings. That is why I was able to view the film to do this review (and have since purchased it to own).

This is not a light movie, but it is important that we view it and share it with anyone willing to listen. This is a cry out. There is a growing "epidemic of chronic pain and chronic illness, and it is causing a devastating toll on both individuals and society. By the year 2020, the number of those living with chronic pain is expected to climb to 1 in 3. Without timely education, resources, and treatment, we stand to create an emerging, global health crisis." By watching this film, you are helping to raise awareness that can bring about the needed changes in our health system and in the way we treat those with chronic pain.

Purchase or Rent Video via (live links below):

One Chronic Pain Doctor who is also a Patient:

Dr. Ginevra Lipton in her article CDC Opioid Guidelines Created an Epidemic of Underrated Chronic Pain explains, "The 2016 CDC guidelines really cemented the medical hysteria around opioids (see the timeline for further exploration) and rapid adoption of their strict opioid dosage ceilings and duration limits has resulted in widespread undertreatment of chronic pain."

She goes on to explain that while research is being done and new breakthroughs seem to be imminent, we can't pull what treatments we have, "...until we have other choices in our pain toolbox, opioids must remain an option, while continuing efforts to minimize their risk of addiction and abuse." In an article published in April of 2019, the CDC has admitted that the guidelines "had (been) justify an 'inflexible application of recommended dosage and duration thresholds and policies that encourage hard limits and abrupt tapering of drug dosages,' when the guidelines did not actually endorse those policies."

Ways You Can Help

While I've written about my lack of infinity for the term pain warrior (see post) because I don't see myself as fighting the pain, I do see my role as a warrior to fight for early chronic pain diagnosis (see my post about childhood symptoms of FMS), for serious research leading to better understanding and treatment of chronic pain, and a change in societal views and treatment of those living with chronic pain. I state it here and now.  I will do all that I am able to help bring living to its FULLest for those with chronic pain.

Thank you for visiting my blog today. I have decided to publish this a bit early this week to get a jump start on spreading the word of this very important documentary.


I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes I have to listen

to my body and am not able to follow through as planned. 

Thank you for your understanding.

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Friday, May 22, 2020

You've Got to Be Kidding! Looking Back at Childhood Fibromyalgia Symptoms

As I've learned more about Fibromyalgia (FMS), learning that it is a central sensitization syndrome that is said to not be a progressive illness, I have come to question when did it actually start for me. 

What is Central Sensitization Syndrome?

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

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

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

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

FMS is Considered Non-Progressive

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

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

My Early Onset of CSS

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

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

Interstitial cystitis signs and symptoms include:
        • Pain in your pelvis or between the vagina and anus in women.
        • Pain between the scrotum and anus in men (perineum)
        • Chronic pelvic pain.
        • A persistent, urgent need to urinate.
        • Frequent urination, often of small amounts, throughout the day and night (up to 60 times a day)

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

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

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

Related Post: Ur In Trouble: Interstitial Cystitis and Fibromyalgia

Chronic Breast Pain from an Early Age

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

Related Article: Breast Pain and Fibromyalgia

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


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

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

I started that early on but really didn't know what it was. I went through many "urinary tract" infections that ended up not being urinary tract infections when the lab results came back. I was diagnosed with IC in my mid-30's. I also had the chest and breast pain before I was twenty. But that was associated with various exercise and hormones. The difficulty of taking a full breath (feeling like I wasn't getting enough air started being noticeable for others to comment when I was 15 or so. GERD was diagnosed when I was in my 30's, so I had surgery (the Nissen procedure) about 40 after years of taking meds. The chest pain at my sternum was attributed to that. That pain never went away with meds or with the surgery. I was diagnosed with FM last November.

The symptoms of IBS typically include:
  • cramping
  • abdominal pain
  • bloating and gas
  • constipation
  • diarrhea
I've only just been diagnosed with Irritable Bowel Syndrome (IBS) after going back for pelvic floor therapy. I have had the symptoms of to some degree since I was in my 30s. However, I had attributed it to the IC and GERD medicine I was on that affected my bowel movements. It wasn't until recently, when I was off all medicine that would cause diarrhea or constipation, that I realize it's an issue that comes "naturally" to my system.

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

Childhood Diagnosis of Fibromyalgia

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

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

A New Paradigm is Needed for Diagnosing FMS/CSS:

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

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

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

Thank you for visiting my blog today.

I am committing to posting once a week on Fridays.

However, as you know, my new normal means that sometimes

I have to listen to my body and am not able to follow through

as planned.

Thank you for your understanding.