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 five 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, and the weaving together of the five 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 painwarriorsmovie.com 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."

Yanekah's Story: After a car accident at the age of 18, Yanekah faced severe pain over the years that led to mental health issues of depression and anxiety. When she found out she was to be a mother, her anxiety over being able to care for her child and deal with her chronic pain was one she didn't feel she could share out because of the judgment of her as a mom.

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):

• Amazon for DVD or Blue-ray 
• Prime Video Rent or Purchase 
• iTunes Rent or Purchase 

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) used...to 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

• Visit Pain News Network: subscribe to their newsletter or even donate to their efforts
• Share the film with your family, friends, and health caretakers
• Share this post or the documentary's trailer on your social networks
• Donate to the film creators to fund community screenings and film festivals

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.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

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.

Related Post: Just Breathe and Other Ways to Rewire the Pain-filled Brain

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.

GERD and IBS

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.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

Determined to FULLY Enjoy This Strange Summer Ahead: Little Adjustments to Make it Happen

With summer approaching, we’re all beginning to make plans to spend with family and friends, enjoying nature and basking in the warm, sun-soaked air. Many of us are adapting to what a different type of summer will look like, spending more time doing activities that are still socially distant while taking advantage of warm, summer weather, and time with loved ones.

It may take us all to hit that “reset” button and re-imagine those activities that we once held so dear; things like going to the beach, visiting the lake and heading to the fair, and finding ways to recreate those moments while still at home. However, we've done that already in many areas: online schooling, socializing on Zoom, graduation car parades, music concerts on porches, and meeting for walks in nature keeping our safe distancing.

I had one big goal for the last six months-get myself ready to enjoy a week-long hiking trip with a group of friends. We were planning to go to Lake Superior Provincial Park in the first week of July. With travel between Canada and the states not looking too promising, we are considering a change in venue. We're still hopeful that we can do some sort of trip this summer as things are allowed to open up again. However, if that isn't able to happen, I intend to still enjoy the hikes and camping closer to home.

Those of us with fibromyalgia have had to learn how to re-imagining fun in ways that are accessible and adaptable, so for us, this is already a way of life! We long ago learned that you can have enjoy time with family and friends while finding creative ways to keep ourselves pain-free, happy, and safe. 

Summer fun doesn’t have to be an expensive beach trip or a cross-country vacation. Summer fun can be as simple as taking up gardening and learning the joy of planting tender flowers and plants and watching them grow; it can be outdoor camping trips in your own backyard, with gooey s’mores and flashlight scary stories; family baking competitions and sleepovers with grandkids; summer fun can be local hiking and a built-in science lesson with foraging for edible plants and berries. It can be a drive-in movie, a kayak on a local lake, or a picnic on the bank of a river with your partner. Finding fun and creativity while staying local and safe (using the updated COVID-19 guidelines) is doable if you think outside the box and look for ways to bond with your family while learning and doing things that are exciting and rewarding.

Once the world does open back up, you’re going to want to live life to the fullest, getting out and doing all those things you’ve always enjoyed. Being active and social is the most fun of all. Being mindful of getting over-tired and not ignoring your pain is the best way to make sure you don’t experience burnout. Looking after your health with a nutritious diet and helpful supplements is another way to stay strong, happy and healthy. There are many products on the market, such as Caduceus Science, such as their full-spectrum CBG/CBD tinctures that help those with fibromyalgia naturally and easily keep themselves in tip-top shape and feeling energized while limiting pain.

Fibromyalgia doesn’t have to mean missing out on fun times with family. Even those bike rides, long hikes, and swimming adventures can be enjoyed as long as we take the time to look after our needs, listen to our bodies (now more than ever), and be mindful. A lesson many are learning that we already know: adaptation is the key to fun, happiness, and living FULLY!

With a little creativity, and as always, listening to our bodies, we’re on our way to having a wonderful summer! Let’s go have some fun!

How are you reimagining this summer? Are you missing anything? Are you changing plans? Are you coming up with replacements?

Thank you for visiting my blog today. 

 

I am committing to posting once a week on Fridays.  

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

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

as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

Writing With FIbromyalgia: Choose to Make Every Day a New Start

First Posted ON: DECEMBER 11, 2019 

 

IN: WRITERS ON WELLNESS

 reproduced Here 

on Painfullyliving.com 5/15/2020

Pettit Lake Sunrise

Photo credit Pat Zammit

After a three-year slide into brain-fog and loss of focus, the inability to function in my daily life, ever-increasing areas of pain for no apparent reason, fatigue so deep that it felt like all the iron had been taken out of my blood, and spiraling anxiety, I was diagnosed with fibromyalgia.

Being I was in peri-menopause, I chalked it up to the change in hormones.

I asked my friends (teachers and those around my same age) and they had similar issues of being tired, stressed, anxious, and waking up as if by the alarm at two in the morning nearly every night. But when I asked if they had pain on the inside of their knees, none of them had, so thought I may have injured myself.

Or as I would stretch my shoulders and legs during staff meetings (constantly getting up when others could sit), I got a few stares.

Doctors Told Me My Anxiety Levels Were Normal

I reported to my OBGYN that I had a sharp pain under my armpits (a very specific point in each). I was sent to a specialist who told me I was fine, I just needed to stretch that area more. After doing a fair amount of research about the effects of hormones and dealing with stress, I went back to my OBGYN.

She said that it was pretty normal to have the anxiety levels I was experiencing. She put me on Lexipro 5mg, which seemed to help at first. Then the following start to the school year, things worsened, so I went on a higher dose. Even after this, I found I wasn’t able to teach (which came as naturally to me as breathing); I stumbled on my words, my sense of humor was gone, every lesson and interaction was stilted.

My family circa 2010.

My Doctor Thought I was Just a Stressed-Out Mess

I never had an issue with being observed in my classroom; in fact, I always enjoyed hosting classroom learning labs for my district, being observed by 10 or so peers at a time while I taught. So when I couldn’t fill out my evaluation pre-observation form with any sort of coherence, I really knew something was wrong.

My children, diagnosed with ADD during college, said, “Mom, you have ADD. You’re the same as us.”

So, I went to my general practitioner, bringing my husband along as a character witness because after we moved to the area, I had changed to this doctor who didn’t really know me. He saw that I was already on Lexipro, now 10mg, and offered to up the dose.

When I said I wanted to be tested for ADD (I had researched and thought it feasible that with the hormone changes I was no longer able to use the coping skills I had developed over my past 53 years), he conceded, saying that “…since you have this in your head, we’ll have you do the test.” I could tell he felt I was just a stressed-out mess.

However, when I did the computer test and 1:1 interview, I was surprised to find that I scored in the medium/high-level for ADD. After taking Vyvanse for a couple of weeks (I could tell I was handling life better), I re-did the test while on the medication and came out as functioning normally.

One thing about the diagnosis didn’t ring true to me, however; I was never scattered, unmotivated, or irresponsible during all my own schooling years. In fact, I was just the opposite. However, I was relieved with that diagnosis and was happy to let the Vyvanse/Lexipro combination help me through the day, functioning fairly well.

My daughter and I teaching my 

granddaughter how to swim.

The Deep, Gnawing Pain Returned and Got Even Worse

This brought me to the end of a very stressful school year (many challenges and changes), and I thought I had figured out the issue, just a touch of the ADD and menopause. However, as soon as school let out and my husband and I were in our packed car driving from Michigan to California for an extended vacation, the pain returned—a deep, gnawing ache that began in my legs.

No matter how I stretched or massaged, it stayed, moving around from upper to lower from left to right. That pain remained the rest of the summer and into the start of the next school year which due to many changes looked to rival the last year as far as stress was concerned.

Now, the pain moved into my shoulders, neck, and arms (again switching from left to right). By November, I was barely functioning. The Vyvanse and Lexipro weren’t doing anything to quell my brain fog and utter exhaustion. I’d flop into bed every night upon getting home and spent much of my weekend in bed.

Finally, I Was Diagnosed with Fibromyalgia: A Relief

Thanksgiving break was when my GP decided to do all sorts of blood work (when I beseechingly said, “Truly, this isn’t who I am. This isn’t my norm at all.”) When the blood work came back, he said, that this could possibly fibromyalgia.

I had never heard of it. Being the teacher and learner I am, I began to educate myself. It was truly depressing all the things I read about how debilitating and life-changing this fibro thing was. Also, the reviews on the meds like Cymbalta scared me to death.

By December 7th, I was on long-term leave and gave in after really wanting to avoid taking Cymbalta. I retired from a 32-year teaching career just after I turned 55 in May of 2019. In April of 2019, I went for a two-hour evaluation interview for a fibromyalgia 10-week, multi-disciplinary program at a local Rehabilitation Hospital (Mary Free Bed).

Officially Diagnosed with Fibromyalgia

At that point, I knew a lot more. (Thank goodness for those who share their journey like Donna in her blog fedupwithfatigue.com). I was relieved for the diagnosis because it meant that I would be eligible to get into the program and in my mind, get back to living.

My 6th-grade students writing in our classroom. 

We have 1:1 Chromebooks 2017.

I Prefer to Handle My Fibromyalgia Symptoms in My Own Way

There was a time that I listed a LONG list of every issue I was having (much longer than the one below) in a note on Google Keep. I had it so I could remember to tell everything at each of my doctor’s visits. I felt like I had to prove that things were not okay and wanted to be taken seriously.

I have now deleted that note. Not that I don’t have most if not all of those things going on, but I’m now in a place that I accept what it is and am not looking for a cure from my doctor (because I don’t feel they have one).

I don’t want a medication if I can survive without one, so this is my plan of action at this point. Not that I won’t go back on Cymbalta or whatever if I must, but right now I prefer to handle the symptoms in my own way.

Issues I have that can go from light to severe and anywhere in between at any given moment:

• Brain fog / Lack of focus: I was pulled over by a police officer the other day to my shock. He said I was swerving in my lane a bit and wanted to make sure I wasn’t under-the-influence. It could have been due to my losing focus or even to my self-massaging of my neck and jaw that I was doing on my drive.
• All-over muscle ache. When I went to a chiropractor recently and she wanted me to mark on the body where the hurt was and what type, there wasn’t a spot on the body that wasn’t marked. Even my dang hands hurt.
• Body drain/fatigue: I will be going fine all day and then, bam! I can’t go forth any longer. Sometimes I wake up that way and have to just rest.
• Insomnia: About two nights in a row of little sleep; then a couple 2-3 nights of decent sleep and repeat.
• Deep sadness: I don’t feel it’s depression because it comes and goes.
• Aversion to strong smells, bright lights.
• Big fluctuation in body temperature, especially in hands and feet, which causes me to wear layers that I can take on and off-including socks, slip-on shoes or slippers, and even gloves.
• Hands and feet edema.
• Gripping of jaw/mouth: I’m constantly opening and stretching my mouth. I’ve even started to massage the inside of my cheeks/gums with a finger.)
• Dizziness/nausea/headache that just makes me feel unwell. This seems to hit in bouts and spurts. There was a time last fall and through spring that I couldn’t make plans or would cancel last minute on those I had made. This has become a lot less regular and I’m starting again to plan. However, mornings and nights are not my best times.
• Bladder pain: I was diagnosed with Interstitial Cystitis in 2000. This is known as one of the co-morbid issues with fibro which I didn’t learn about until my fibro diagnosis. Urgency.
• Acid reflux: I went through a Nissen Procedure 2016, but it really didn’t do much besides make my stomach hurt all the time.
• Bowel issues: Diarrhea to constipation and back again, never really “normal.” However, I think this is more due to supplements and what I eat.

Why I Now Have a Blog About Fibromyalgia

Why I decided to start a blog about my experiences: I did not know what fibromyalgia was until I was diagnosed this past November 2018. Being the teacher/learner I am, I began to research and found great resources (some really bad).

I have become pretty educated about what it is, how it affects me, the whys (as much as there can be), and how to “manage” it so that I can live my life FULLY, on my terms, even while having pain.

I feel that sharing my journey can give insight to others on their own, much like others have helped me. Also, blogging helps me to understand better how I’m feeling about things; writing helps me process. My posts serve as a bit of a timeline for me to remember where I’ve been in this process of healing and self-discovery.

In addition, I’ve always wanted to write. For me, this is good practice and if others take time to read and are helped in any way from what I’ve written, then that’s my purpose. If no one reads it, it serves as me doing developing what I love (writing) and helps me to process my journey.

Me writing after a day of paddling 

at Algonquin Provincial Park 2016.

How I Manage Writing with My Fibromyalgia Symptoms

How fibromyalgia affects my writing: As I’m new to taking time for myself to focus on my writing and still seem to be going through some ups and downs with fibromyalgia, I can give you what I’ve done so far.

I write when I’m inspired. When I have something that is just needed for me to get down. So, my blog has not been regular. I really struggled the last couple of weeks, so I gave myself a break from feeling like I had to. Had-to doesn’t work well for me or the fibromyalgia it seems. I did the had-to for so long.

So, I also work on giving myself care and grace when I don’t follow through with things that I feel I should be getting done. My writing time is a self-care, pleasurable activity. My thinking is the more I do it in this frame of mind, the more my brain will come to love taking the time to write-like Pavlovian’s dog.

I don’t focus on earning money. While I’d love to earn something through my writing, that isn’t a focus currently. So, the pressure is off that way, too. I’m starting a fiction novel that I’ve always said I would write (mostly just to myself; however, a few times I let my students know that’s what I intended to do once “I had the time.”)

I have my writing area set up. I love to sit looking out at the lake (I’m lucky to live on the shore of a small lake). I have a cup of hot tea or a cold drink nearby. My loved ones know to leave me alone (mostly). I play Pandora (if the words are flowing) on my favorite wordless, acoustic guitar station (Acoustic New Age or William Ackerman). I often would play this in my classroom as my students were writing, too. I do love sitting outside if the weather is cooperating.

Depending on my mood, I write in a journal (this is usually when I’m more brainstorming or writing poetry) or directly on my computer (usually, my blog is written directly on my computer). I tend not to do a lot of editing/revision as I’m anxious to get what I’ve written “off-my-plate”, so I often post right after completion. (I’m not too freaked out by others seeing my errors; however, I do reread after being published and tend to do editing and a bit of revision then.)

I’m sure as I get into writing my novel more that this will be one of the biggest changes in my writing process; deeper and deeper revision and editing. I chalk up my one and done method to my 6th-grade students’ influence on my writing (and the ADD-like symptoms I have).

I’ve always found inspiration from writers. I love to watch author interviews on YouTube. Currently, I’m taking a fiction class with Neil Gaiman online through MasterClass.com. His insight and talking about the thinking behind his writing ignites me.

To help with my fibro-brain, I do use technology a lot. I use digital notes (synced on my phone and computer) to jot down an idea I get for a blog or for my novel. So, when the ideas come, I quickly put it down otherwise it would disappear like a wisp of smoke. (I’m using Google Keep now but have used Evernote in the past.)

I want to be the "fun" grandma, 

present and active. 

The Goal of Writing: Not to Impress, but to Connect at a Heart Level

Much of my teaching of writing was getting my students to see the purpose and how it could be important for each of them.

My first lesson was always for them to reflect on what they “know about, care about, and are interested in”. Through this, I would write alongside them. We would come to know each other on a much deeper level; learning from one another, connecting through our writing in ways we couldn’t through our everyday interactions.

Instead of wanting to impress as the goal, connecting with each other at a heart-level was our focus. This freed us up from that critic who lives in each of our heads that constantly says what we have to say isn’t important or good enough. Then, when we conferred with one another (they conferred my writing as well), it was more about trying to get the meaning across as clearly as possible so that others would “get us.”

So, my advice is to write like a 6th grader. Write what is important to you. Write from what you know about and care about. If we do that, then we have something to share, no matter what it is; this will intern allows us to feel connected to others-one of the hardest things to do in this life.

Writers with Fibromyalgia: Choose to Make Every Day a New Start

If you’re diagnosed with fibromyalgia: Get educated on what it is. There are good sources out there. However, make sure that you check any source you use for its reliability. There are so many sources that want to tell you what to do, what to take, how to live. Also, there are many negative voices out there.

I chose not to complain constantly about the issues that come with fibromyalgia because I find that it just sinks me deeper into symptoms. I don’t propose just ignoring and letting positivity fix your fibro; however, dwelling on the yuck doesn’t breed good outcomes.

Use what you learn with your doctors. Most don’t know much at all about fibromyalgia. I’ve brought a lot of information to my doctors that they’ve found enlightening.

I choose to make every day a new start. There are days I throw in the towel. I try to allow it (and even if it means wallowing a bit) to let it be okay for that time. However, I do work on getting up the next day with a “I’m starting afresh.”

I’ve written and will be writing more blog posts about what is helping me live my life FULLY despite having pain. For me a big one is a wonderful yoga studio that focuses on healing and being well as well as community, breathwork/meditation/EFT to help calm my brain, learning more about brain plasticity and ways doctors/scientists/everyday people are using it to help bring about positive changes in nervous system disorders/diseases.

* * *

Katie Clark recently retired from 32-years of teaching reading and writing at the middle school level, and has decided to write. After her diagnosis with fibromyalgia caused her to take an abrupt and permanent leave from a job she thought she’d have into her 80s, she decided to record her journey in her blog painFULLYliving.com.

This term painFULLYliving came from her pain-psychologist who helped Katie to understand that she can allow fibromyalgia to define her or accept that it’s only one part of her. She chooses each day with the help of her family and friends to live life fully. Through her writing, she reflects and grows and hopes to help others along their own journey. She is well-loved by her family and has always felt that her main purpose in this life is to be fully present for them.

How do you handle the hard stuff in your life?  Can you find the hope and push in every new start of the day?  How do you push past the pain and difficulties?

Thank you for visiting my blog today. 

 

I am committing to posting once a week on Fridays.  

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

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

as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email

May is Fibromyalgia Awareness Month

When you look at these faces, you see nothing
that would indicate we have a chronic illness (most with more than one).
Each of us lives with Fibromyalgia. I'm glad I found others that
I can learn from and journey with. May is Fibromyalgia Awareness Month. #ThisIsFibro #FibromyalgiaAwareness

My family jokes that May is MY MONTH.  I have Mother's Day, my birthday, and my anniversary.  Then, I learned last month that May is also Fibromyalgia Awareness Month.  Kismet?!  I think not:)  

As stated in my blog, I had not even heard of the word Fibromyalgia(FM) until I was diagnosed.  Since then, I've done a lot of research and have found that while more acknowledgment of it and a bit more understanding (thank goodness for modern technology and brain scans), it's still really not known, even by most doctors.  There's also confusion as to what causes it. It's only recently that it's seen as a disorder of the pain processing system due to imbalances in the central nervous system. "Evidence suggests that both the ascending and descending pain pathways operate abnormally, resulting in central amplification of pain signals, analogous to the “volume control setting” being turned up too high." The Science of Fibromyalgia. 

FM affects 5% of the population.

The main thing that stands out to me from my research

is that each of us living with

Fibromyalgia has to find our own path.

There is no cure.  There is no one

treatment fits all. 

So, I've put together some snippets from my two years in this journey of learning, healing, and sharing.  

May is #FibromyalgiaAwareness month. #ThisIsFibro 
One Step At a Time

May is #FibromyalgiaAwareness month. #ThisIsFibro
Sleep, Fog, and Vampires

May is #FibromyalgiaAwareness month. #ThisIsFibro
What's Wrong With Me? Part 1

May is #FibromyalgiaAwareness month. #ThisIsFibro 
What's Wrong With Me? Part 2 

May is #FibromyalgiaAwareness month. #ThisIsFibro Acceptance is my Super Power

#FibromyalgiaAwareness month. #ThisIsFibro
Knock on Wood!

May 12th is #FibromyalgiaAwareness Day! #ThisIsFibro
Am I Strong Enough?

May is #FibromyalgiaAwareness month. #ThisIsFibro

But How Do I Practice Acceptance?

May is #FibromyalgiaAwareness month. #ThisIsFibro Choose to Make Every Day a New Start

Last night, I had the privilege to
participate in a free webinar put on 
by Fibromyalgia Association of Michigan. 
If there were fan-girls of a doctor,
I would be one of Dr. Daniel Clauw. 
He has been a champion for those of us
with Fibromyalgia. Check out my first
understanding of how Fibromyalgia works:
Chronic Pain: Is It All in Their Head?

For the rest of the month, I will continue to post these on my social media and add to this blog post as a collection of my journey.  I hope that this might help someone ease their own wellness journey as so many have done for me (see my Resources That Have Helped Me page). 

Being everyone's journey and experience with FM is different, I'd love to hear from you about your own wellness journey. Sharing and learning from one another is our biggest ally.

Thank you for visiting my blog today. 

 

I am committing to posting once a week on Fridays.  

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

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

as planned. 

Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email