Sunbreaks in Unending Storms: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole and FJ Griffitts is invaluable to both the dweller of the storm and the observer of the storm because it shows not only what to anticipate, but how to navigate through the turbulence of invisible chronic illness. In addition, this is a must-read guide for those wanting to create volunteer groups (say in their church or community) to help those living with chronic illnesses. 

Review of SUNBREAKS IN UNENDING STORMS: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole & FJ Griffitts

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.

At the top, a sun rise shining through the clouds. Beneath, a orange, brown background with lightening coming from clouds over a black city scape.  The title text in white and yellow: My Review of Sunbreaks in Unending Storms: Understanding Invisible Disabilities, How to Thrive There, and How to Help by Carole and FJ Griffitts

I received an ARC of this book to read this past spring; I agreed to review it, but I did not agree to any type of review.  This is not a book I would generally pick up to read, but I sure am glad that I did.  I’ve purchased my own copy to refer back to.

Teal and white drawn lotus/waterlily

Advanced Reader’s Copy (ARC)

I “met” Carole via a chronic illness blogging group, of which we’re both members. I began to read her blog posts, which are sincere and full of wisdom. Through a few comments I left on her posts, we began a dialogue. When Carole was looking for readers for the book that she and her husband Joe, referred to FJ in the book, wrote together, I sent her a message that I would love to be a reader.

However, I knew once she responded that she would be sending it to me as soon as the Advanced Reader’s Copy (ARC) was ready, I began to question if I could do it. If you follow my blog, you know that I’ve been sporadic in getting posts done. Sometimes it’s due to life getting in the way of having the time, but during this time, it was because I was really, really struggling with writing.

With Fibromyalgia, I have found the greatest thing that stops me from doing what I would like is a heavy fog that fills my brain and doesn’t let me do much more than stare into space. I was experiencing this when I received Carole’s acceptance.

Carole in a power wheelchair on a wooden bridge.  Background of clouded lightening storm with sun rise and blue skies opening up.

Chronically Delayed

After not hearing back from Carol for a few months, I forgot about my commitment. During that time, the steps I had taken to get out of my fogged-up funk, began to turn my life around. As I am writing this, I have had a good month of very little foggy brain.

In May, I received an email telling me that the ARC was ready to read. Carole was dealing with an ongoing infection that wouldn’t fully clear up, delaying the publishing process. This is all a part of Carole’s ongoing journey with chronic illness. And to be honest, she and Joe have weathered so many more storms than I can even fathom. Yet, they pushed through to publish this very insightful book that aims to give a realistic understanding of what it’s like to have chronic illness and how it impacts those around you, especially your closest companion.

Orange, yellows, black, blue colors depict a background of lightening and sun peaking through the skies.  Centter: a photo from 40 years ago of Carole and FJ, arms around each other, flanked by their two sons.

Carole and Joe (FJ)

FJ met Carole for the first time on a blind double date with friends in 1965. Two months later he asked her to marry him. During the six months apart while FJ was on temporary duty in the air force, they drew closer through sharing their thoughts on life, love, and family with letters that they exchanged. Soon after his return, they set the wedding date of July 16, 1966.

In the next few years, they became parents of two boys, Tom and Bill, while moving from military to ministry life. While they scraped by financially, Carole and FJ were focused on their family and faith. Life was FULL of love, humor, friendship, and outdoor adventures.

However, that easy, carefree life ended in September 1978 when Carole developed ongoing pain and severe weakness. Their unending storm had begun. But like so many of us with chronic illness, they didn’t expect that it would last or evolve to what it is today.

Carole went from being a very active woman, wearing many different hats, to one that struggled to even do the basics of self-care. FJ became her main caregiver alongside his job as pastor of a church. Together, they have spent 40-years in unending health storms (both Carole’s and his).

Orange, yellows, black, blue colors depict a background of lightening and sun peaking through the skies.  Center is image of the book's cover.

Book Summary

Carole and FJ and the other interviewed families who are dealing with a variety of chronic illnesses share their journeys without sugarcoating things. However, they also don’t despair and crawl into a depressive hole.  I identify with that.  Their stories are hard to witness one hardship after another, yet they also show that they still find meaning and purpose in whatever way they are able. 

Carole and FJ compare living with invisible chronic illness to the onset of unending storms. The book is divided into three sections: Explaining the Storms, Navigating Storms, and Responding to Storms.

Bringing the reader into their homes, we witness how each family finds solutions to day in day out chronic illness issues that aren’t often talked about. Through honest discussions about the emotions from both the sick family member and the caretaker, the book explores the impact of invisible disabilities on relationships with family and friends.

One section deals solely with handling the medical aspect of living with chronic illness. Through Carole’s experience, we see how someone desperately trying to figure out what’s going on can be tossed and turned around by medical providers. Her (and FJs) 40 years of experience, demonstrates how important it is to trust one’s own instincts and push for answers.

While the storms are unending and often very tumultuous, each story shows how they persevere by diving into the deepest meaning of life and its purpose. Carole and FJ’s faith is very important to them, and they share much about their experience (good and not so) in the church as Carole’s illness ramped up.  Through this, each finds sunbreaks and rainbows along the way that fortifies their resolve.

Orange, yellows, black, blue colors depict a background of lightening and sun peaking through the skies.  Center, image of Carol in a wheel chair being pushed by her son down a path through a field.

What Stood Out to Me

I love how the book is woven together with the metaphor of storms/weather. Carole and FJ each tell sections of the same story from their own point of view, the person living with chronic illness and the caregiver. Then they also incorporate a third-person narrator who kind of looks in and gives a scene, giving the reader the feeling they are witnessing the story for themselves. 

I really enjoyed the opening text/quote to each chapter and how they gave insight into the upcoming chapter. The only thing I wish they would have added would be some photos to make the stories become even more real.  Some of the things they share seem almost too impossible for a person/a couple to bear.

I kept hoping for one of those magical endings, which I knew wouldn’t happen because I met Carole through her blog. If you know Carole from her posts, then you know her story to a degree already. However, I learned so much more about all she has gone through and is still dealing with.  Yet, she still publishes posts, and she and her husband wrote this book.  

The last chapter for HOW to deal with chronic illness (and how caretakers and those who want to help can realistically do that) is the crux that most readers will want to jump to. I found it very insightful and practical.

While the topic of faith is an integral part of this book, I found Carole and FJ’s approach to be understanding and inclusive. Allowing someone like myself, who might bristle at the talk of Christianity, to not feel disconnected.

My Recommendation

Sunbreaks in Unending Storms: Understanding Invisible Disabilities, How to Thrive There, and How to Help is invaluable to both the dweller of the storm and the observer of the storm because it shows not only what to anticipate, but how to navigate through the turbulence of invisible chronic illness. In addition, this is a must-read guide for those wanting to create volunteer groups (say in their church or community) to help those living with chronic illnesses. 

You can find this book in both paperback and e-book Amazon: Sunbreaks in Unending Storms by Carole and FJ Griffitts. If you would like to connect with Carole via her blog, check out: Navigating The Storms: Thriving in the Midst of Invisible Disability and her new website: Sunbreaks Books.


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



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Dark blue background with purple circles in top right and bottom left. Light Aqua font for title: Men's Health: Living With Fibromyalgia. Under, a light blue circle with cartoon drawings of 5 different looking men

Men’s Health Awareness Month: Living With Fibromyalgia

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.

We all know the stereotype of men when it comes to their health. They are less likely than women to visit a doctor and to downplay or neglect to report their symptoms when they do. I hate stereotypes. Yet, they tend to stem from some truths.

So, I will only talk about the men I know personally. Unfortunately, even my husband and son fit the above stereotype. When I raise a concern, like my husband stopping of breathing during the night, I’m met with jokes and the implication that I’m overreacting or don’t know what I’m talking about.

We even discussed this on Father’s Day. We talked about how our culture still promotes the “masculinity myth” of being tough and independent, not needing help. In the WebMD article, Timothy Smith, professor of psychology at Brigham University explains, “Cultural beliefs, such as toughness, develop for a reason,” he said. “Decades ago, when our economy depended predominantly on manual labor, the ability to continue working despite (problematic) physical conditions benefited families dependent on that labor.”

“Cultural beliefs, such as toughness, develop for a reason,” he said. “Decades ago, when our economy depended predominantly on manual labor, the ability to continue working despite (problematic) physical conditions benefited families dependent on that labor.” -Tim Green, Brigham Young University #MensHealth #Fibromyalgia

It’s concerning that men are dying on average 5-years sooner than women in 2020 whereas in 1920 women were only living on average 1-year longer than men.

Men and Fibromyalgia (FM)

Recently, I was able to talk to Chris Hamilton, a man living with Fibromyalgia. I met Chris through the Facebook Group, Fibro Connect. I immediately appreciated his honest and often humorous responses to questions and posts in the group.

He is a father of two grown children, living in Florida with his wife and working full-time in the procurement department of one of the Big Four Accounting Firms.

Before Fibro, Chris was physically very active participating in Tough Mudders and marathons.

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that  circle frame photo with Chris running in a marathon wearing a lime green baseball cap, lime green long-sleeved shirt and black shorts.

I’m happy to share Chris’s story. He represents a man who is outgoing, physically active, successful in his career and family life, yet he did go to the doctor to find out what was going on. But, unfortunately, so many men choose to stay silent with chronic pain or, worse, are met with disbelief or indifference from family, friends, and even doctors.

While Chris is new at living with Fibromyalgia, I sense in him a strong commitment to live as FULLY as he’s able. His symptom experience reflects my own in that the pain is something we can usually manage, but the brain fog and fatigue are what really bring us both to a halt.

Chris focuses on exercising and eating healthily to mitigate the FM symptoms. In fact, he’s running again. Already, he has signed up for three half marathons for this coming winter!

Please, welcome Chris to the PFL Community:)

Line drawn aqua lotus, symbol of Pain FULLY Living

A Mayo Clinic research report first published in 2012 stated that “The discrepancy between the number of people reporting fibromyalgia symptoms and the number actually diagnosed with the condition was greater among men… Twenty times more men appeared to have fibromyalgia based on their survey response than had been diagnosed.” What are your thoughts?  What is your own experience?  What would you say to a man living with constant pain all over but who hasn’t sought a diagnosis?

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that  a quote in white font. Large light aqua commas before and after quote.

I’d love to see more inclusion. I keep seeing studies about such and such a number of women. It feels exclusionary. More than that, though, if there are differences between men and women, it might add to our knowledge and show useful patterns.

Guys, especially in the west, aren’t supposed to be weak–not that women are. But the inability to provide and take care of things is so central to masculinity that the toll is as emotional as physical–and guys aren’t good at the emotional part. Among the few guys with Fibro I interact with online (and that’s very surface level), there seems to be a lot of anger and resentment–at the condition, at the people who don’t believe them (sometimes including spouses and family members), and at their inability to do what they believe they’re supposed to do. It strikes at the heart of manhood similarly to the inability to be a mom might strike at women. But I think women are much better at showing vulnerability and getting help than men. 

To a guy who has pain and hadn’t gotten it diagnosed, I’d say it could be Fibro, that it’s not a woman’s disease, and that knowing is better than not knowing. 

I’d also say that there’s no more shame in this than in needing glasses to see. You didn’t choose this, and you didn’t make it up. 

Finally, I’d say to guys–and really to anyone, exercise as much control as you can. Take every win possible–and recognize it as such. 

Line drawn aqua lotus, symbol of Pain FULLY Living

What was life before (and then after) FM? 

This is a long answer (sorry).

My actual diagnosis was in February of this year (2021), but I crashed in a humongous way back in 2015. I was on a Project from Hell™ at work, and I was in, by far, the best shape of my life. For my birthday in October 2014, I ran 17 miles. But I got up on February 16 and did a challenging workout but not hard, yet I was nauseated.

From there, I crashed hard. I got so I couldn’t cross the living room without stopping to rest. For few days, I worked from bed because a very good friend was the only other person on the project, and I’d have left her alone to deal with it. I was diagnosed with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome).

Then, after almost exactly seven months, it went away. Looking back, I think it was Fibro, but the pain was never an issue.

Then to Now

I never regained the shape I was in after that episode in 2015, but I did complete a half marathon last February. I had to nap a lot in the evenings. My diet was better than in my twenties, but not by much, and I was inconsistent with exercising, largely because I overdid it and kept getting injured.

After my diagnosis this February, I got the Mayo Clinic book and devoured it. I decided that there were changes I wanted to make to my life anyway–specifically around diet–and now I had to make them. 

In 2015, I kind of allowed everything else–being sick, work, whatever else–dictate terms. It was a horrible year, so I decided I wasn’t going through that again. Now, I’m much more careful about what I eat, but not nearly perfect. I track everything. I’ve moderated the exercise. I do something for at least half an hour a day, even when I feel horrible. 

I’ve actually lost a decent amount of weight as a result and fit in a lot of clothes for the first time in years. I’ve also worked to modify my approach to stress. Again, it’s asserting control over what I can influence and deciding whether something’s important enough to make me crash. I’m not accomplished at that yet, but I’m headed in the right direction.

Line drawn aqua lotus, symbol of Pain FULLY Living

What caused, if you know, the chronic pain and when did it start?

My mom and sister have Fibromyalgia, and the research seems to indicate it could be hereditary. I can’t think of any early childhood trauma, beyond the normal. I was under a lot of stress in 2015, and this past year’s been stressful for everyone, but I can’t identify a specific trigger for the Fibromyalgia symptoms I have now.

In December of 2020, I started having really severe bone pain out of the blue, all over my body, enough that I was missing work and not doing much of anything. I had one afternoon just before I got diagnosed where it was a 9 out of 10 much of the time–and I had to get work done, or so I felt. (Turned out the sun would’ve come up the next morning if I didn’t, so lesson learned.)

The pain, mostly vanished after I knocked off the Coke Zero. I miss it, but I like being pain free a lot more than I like Coke Zero.

Line drawn aqua lotus, symbol of Pain FULLY Living

How were you diagnosed?

I’m so fortunate in this regard.

I didn’t see my doctor right away, but having all over bone pain is a big enough deal to make me go pretty quickly. I gave it a couple of weeks, then made an appointment with my primary care. She recommended that I see a rheumatologist, and there was the one I had good experience with previously in 2015, so I chose to go see him. The big wait was to get in to see him, which took four or five weeks.

At the time, it seemed like forever. As you might imagine, my brain went to town on the ambiguity about what was wrong. I was afraid I had bone cancer, and it metastasized or something. When I finally got in for my appointment, the doctor asked me some questions about my symptoms, and then started poking me in the tender spots, asking if it hurt.

It wasn’t comfortable, but it wasn’t exactly painful. He told me that if I were a woman, I’d be jumping through the ceiling and that I had Fibro. (I’ve since read that pain tends to be more pronounced in women). It was about two months between when the pain started and when he gave me the Fibromyalgia diagnosis.

Getting the diagnosis was almost a relief, especially after reading the Mayo book, which gave me a starting point to manage the Fibro symptoms that I was experiencing.

Relative to other people, I was incredibly fortunate to be diagnosed so quickly. My quick diagnosis and relatively mild case make me really humbled by the people who manage to go on day after day for decades without any real relief. In my book, those people are warriors.

Line drawn aqua lotus, symbol of Pain FULLY Living

What is your day like living with chronic pain?

What is your pain level generally?

Pain is usually between 2-4, but the fatigue is higher and the brain fog is annoying as hell. It’s no fun forgetting what you’re talking about in the middle of a sentence. That’s scary, too. Alzheimers? If I have to chose, I’d take Fibro over that every day and twice on Sunday.

Does it impact what you do during the day?

Most days not until after work. Evenings can be tough for me. Late afternoons are a chore sometimes.

Crash days (as I call them) are different. They come and go, randomly. There’s no seeming pattern. Right now, I’m in a flare where my pain that’s lasted a week already. My pain is usually in the 1-3 range and right now it’s between 4-6. To be honest, I panic a little because I’m afraid it’s going to stick that way. This crash is different, because for me usually, it’s fatigue and malaise, not more pain.

In terms of how I handle flare days, it depends on how bad I am. If I can manage it, I work. I try really hard to get full days in, but if I run into a series of bad days in a row, I’ll just take the rest–a sick day or part of a day during the week, or just a couch day on the weekend. I have no idea what causes them, but if I knew, they would never happen. This Fibro-thing kind of does what it wants.

Controlling What I Can

What I can, I work to control. So, I’ve focused on my diet and exercise.

My diet is a lot cleaner than it used to be, but I still need to work on cleaning it up more consistently. I eat a lot more veggies, that’s for sure.

I’ve exercised every day since I was diagnosed. Haven’t missed one. It’s not that long (19 weeks today), but I’ll walk for at least half an hour when it’s really bad. This morning I ran five miles, but I’m feeling a fair amount of pain.

Even when I got my butt kicked by the COVID vaccine, I didn’t miss a day. Part of that was the luck of the timing, though. The bad part of my reaction to the vaccine didn’t happen until the late morning of the day after I received the shot. The symptoms cleared up by the following evening, so I could exercise despite my reaction that caused amplified Fibromyalgia symptoms.

Line drawn aqua lotus, symbol of Pain FULLY Living

Has It Impacted Your Relationships?

Because I became ill (and diagnosed) while COVID was at its peak, things for me aren’t much different than they are for everyone. COVID distancing built a little wall between me and those outside of my home. I love connecting with friends to play virtual Cards Against Humanity once a week, but because it’s in the evening, it’s hit and miss for me. About half the time, I just can’t play because I’m not up to it. Often I leave early even when I do show up due to feeling too fatigued and foggy to continue.

I’ll say my wife has been amazing about it, and given the family history, I get a lot of support from my parents and sister. I’m also blessed in that the people I work with and for have been amazing, too. That support is so big in this wellness journey. I don’t know how I’d manage without them.

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that  a quote in white font. Large light aqua commas before and after quote.

Do you have a doctor(s) that knows how to help you live your life fully?

No, unfortunately. My primary care and my rheumatologist are both supportive, yet they don’t how to guide me in my day to day management of symptoms. I’m strongly considering hiring a health coach who knows about Fibromyalgia.

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that a quote in white font. Large light aqua commas before and after quote.

How has life with chronic pain affected your working life and finances?

I let the people I work with know, but I haven’t had to miss enough work that it’s made a difference. That said, it could all change tomorrow. And on bad days, I worry that I won’t make it to retirement.

Due to my job, I’m really blessed to have great insurance. So, I haven’t struggled with costs from doctor’s appointments and the like.

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that a quote in white font. Large light aqua commas before and after quote.

What do you do to manage your pain?

The most important thing for me has been eliminating Aspartame. I try to eat reasonably and get my sleep. I think exercise helps, too.

The hardest part is keeping a positive mindset. I wasn’t a super positive person to start with, so this is an area where I have to really concentrate. It all works together–which is why I’m considering a coach so that I can be better.

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that a quote in white font. Large light aqua commas before and after quote.

Do you have any advice for others who live with chronic pain?

That answer has changed. At first, it would’ve been to educate yourself. But there’s so much information out there and not a solid basis of one approach over another that I’ve backed away from that. For instance, most of what I’ve read says leafy greens are the best–and then the anti-copper approach says they’re the worst. 

Also, I’m reluctant to advise because I’ve been so fortunate in my circumstance. I got diagnosed quickly. I’m getting all kinds of support. My case is relatively mild. I can’t advise people whose lives are a living hell and who don’t have all the support I have currently.

If I had to say something, it would be to figure out what you can control and be unyielding in controlling it. Listen to your body. And find someone to listen to you, even if it’s a Facebook group or something like that. And guard your mindset because it’s the key.

I know everyone is different, but my approach has been kicking Fibro’s ass every chance I can get. Anytime I accomplish something hard, whether it’s a long run (which I’m blessed to do–usually 6-8 miles) or getting through an afternoon that’s really bad, it’s a win. I’m inclusive in my definition of winning.

Dark Blue background, purple circles in top right and lower left corners. In the upper left corner is a light blue circle with cartoons of 5 different looking men. Title in light aqua font: Men and Fibromyalgia Under that  circle frame photo with Chris smiling. He's wearing a Mets baseball cap and behind him is a crucifix hanging on one wall and Mets stadium on the other.
Me recently. Captures my Mets fandom and my faith, which is important in this battle.” -Chris Hamilton

While I’m not concerned about my husband and son having Fibromyalgia, I am concerned for their heart health and other issues. How can we, as a society and health care system, get our men to be open in seeing the doctor and getting help when needed? How can we help men living with Fibromyalgia find more support and acceptance?

Here are a few resources I suggest checking out:

Line drawn aqua lotus, symbol of Pain FULLY Living

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

Line drawn aqua lotus, symbol of Pain FULLY Living



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Blue background with clipart images of medical bag, brain, pills, syringe, research scientist; white font for title

Advocacy In Action: Lobbying for the Fibromyalgia Community

Blue background with clipart images of medical bag, brain, pills, syringe, research scientist; white font for title

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.

I’m energized and worn out at the same time at the closing of this month of May. This month, Fibromyalgia Awareness Month, had me hopping with more posts than my normal one-a-week, interviews and unforeseen advocacy work. As Melissa Talwar of Support Fibromyalgia Network explains, “Fibromyalgia awareness is good, but it only gets us so far. We need to advocate to get more consistent information out there, to further quality research into its etiology and pathology, and to promote better treatments that are recognized by the health and insurance systems.”

PUSHING PAST MY COMFORT ZONE

Writing is my forte. I can better express myself through writing. Since developing Fibromyalgia, it has become even more true. This is because I am able to take the time I need to look up the words that I can’t think of in the immediate moment.

In my job as a teacher, I was a natural at talking in front of my students, until I wasn’t- due to fibro fog hitting so hard that I couldn’t communicate thoughts in any fluent, coherent way. While I did many talks and trainings for colleagues and parents, I had never felt comfortable doing it.

Then, at my last presentation, where my fellow educator and I were to talk about how to incorporate technology in the classroom, I totally floundered. (I didn’t realize this was the onset of Fibromyalgia.) That last public speaking experience has left a deep fear of getting in front of groups.

So, when I was asked to do a live video interview to talk about my journey with Fibromyalgia Impact Tour, I was very nervous. I prepared by having a cheat sheet written on a big white board sitting in behind my computer. In addition, I had sticky notes for names and terms on my desk so that I could easily get them should I blank.

Melissa made the interview so natural that I didn’t get nervous. Much different than standing in person infront of a group.
I ended up feeling really enlivened by the experience and much more confident.
I did use my cheat notes and had to refer to the sticky note name and term cues now and then, but overall I felt like I was able to be off the cuff and fluent.

STRETCHING MY ADOVACY REACH

Talwar invited me to be a Michigan advocate on Fibromyalgia Advocacy Day, 5/11/2021. She and her teammates at Support Fibromyalgia Network have organized a grassroots effort to reach out to state representatives.

Grassroots Advocacy Movement

The very first advocacy day took place on Capitol Hill in September 2019. “Patients, advocates, clinicians, and caregivers met on Capitol Hill for advocacy-education and then attended over 54 meetings to educate their legislative representatives about supporting critical Fibromyalgia medical research, education programs, and accessibility to alternative pain care,” stated Talwar.

Many chronic illnesses have formal lobbying organizations. In a research report from The American Journal of Medicine, they summarize that, “There are sizeable disparities in the health care lobbying expenditures of various interest groups.” Talwar’s lobbying efforts is a grassroots movement. She explains, “We sometimes forget that we do have the power to change things. As a Fibromyalgia patient, we may feel defeated as most of us struggle to survive. A successful campaign is a joint effort that requires numerous people and tools to reach critical mass. By participating in the process, it allows your voice to be heard and it does make a difference!”

The second Fibromyalgia Advocacy Day at the Capitol happened in March, 2020, just as COVID-19 pandemic was becoming apparent. Talwar and her cohort expanded their efforts with proclamations, regional meetings, and town halls.

This year, with the Pandemic making the in person meetings impossible, Talwar had to come up with a way to conduct the advocacy presentations with the state lawmakers and their constituents who live with Fibromyalgia. She did this by organizing video/conference call gatherings. This was how I was able to participate.

Four Successful Meetings

In preparation, I was given a crash course in advocacy as well as information about the state representatives and senators’ offices. They provided live video conference times to get guidance from and ask questions of those who had participated in the past two years.

The day ahead, I wrote out my story, asking my husband for input. He asked, “What’s your goal in what your sharing?” I went back to my time-lined narrative and changed it around a bit. “I want to make an impact on them as to just how much Fibromyalgia has impacted my life, making my story an example of what this illness does to the 10 million US citizens who live with it.

I had four meetings. The first was with Dr. Jerome Seid (Congressional Fellow) for Sentator Jacky Rosen of Nevada. My partner presenter, is a Nevada native who lives with Fibromyalgia among other conditions. She actually took the video conference while in a hospital bed! She had thought about bowing out, but as she was on the upswing, she felt it would be an impactful and realistic moment for the senator’s representative to witness. Being she is also a therapist, she blew me away with her talk. The doctor was very interested in our stories and even asked me questions about my experience.

He then asked what we would like for him to emphasize with the senator. We shared our concern that the CDC and NIH have very outdated information on Fibromyalgia posted on their websites. In addition, the two don’t even have consistent information. We also requested that he emphasize the need for more research into the cause of Fibromyalgia and how it works so that better treatments and accepted protocols can be developed. I was very encouraged because he said that he had concerns about a family member possibly having Fibromyalgia and he was very supportive in all we were asking for.

The next three meetings were with a Michigan House Representative, Brenda Lawerence and Senators Debbie Stabenow and Gary Peters. The legislative aides were attentive and asked good questions. They also gave us advice as to how to continue to grow the advocacy momentum.

My last meeting started at 3pm. I had been up and actively presenting since noon. When it came to my time to give my spiel, I felt the fibro fog roll in. The presentation that had been smooth the past three times was now choppy and muddled. Instead of pushing through, I stopped and acknowledged what was happening. That took away my embarrassment, and I felt, left a tangible example of what we were explaining.

“Congress represents all of us. If we want more research and the cure (for Fibromyalgia), we will need to fight for it. The NIH needs to do more for Fibromyalgia research and we must let our representatives know!” -Support Fibromyalgia Directory #FibromyalgiaAwareness #AdvocacyInAction #NIH #fibromyalgia

PRESERVING THE RIGHTS TO A FULL LIFE

“Congress represents all of us. If we want more research and the cure, we will need to fight for it. The NIH needs to do more for Fibromyalgia research and we must let our representatives know!” Bringing awareness, encouragement, and helpful information has been the focus of my blog painfullyliving.com. I have gone from not even hearing the word before to becoming someone who is advocating for the ability to FULLY live one’s life despite having Fibromyalgia.

This new focus is giving me purpose and igniting my imagination. When I first was brought down and forced to lose the only way of life I knew, I couldn’t invision being a needed member of society or even my own family. Now, I feel that I can add to this grassroots movement. There is much to be done, but we can nibble away at it-TOGETHER!

If you are at all interested in participating in some small way, contact me or go to Support Fibromyalgia Directory to get connected. You may feel that you have nothing to give or skill to contribute. However, I would say that just being you, sharing whatever you have that doesn’t deplete you, will most assuredly be welcomed and needed.

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THANKING THOSE THAT ADVOCATE FOR US

I so appreciate all the ingenuity, time, and spoons that have gone into Fibromyalgia Advocacy all year long. Much of it is behind the scenes that no one will ever really comprehend. To these feisty advocates, I sincerely THANK YOU!

Those Sentators and Representatives nationwide who took the time to listen to our stories and our asks, I thank you for your committement and time. I look forward to future collaboration to bring about positive change in the lives of those living with Fibromyalgia. THANK YOU for acknowledging and supporting us!

Additionally, to all those who go about sharing their stories, whether just to family and friends or to the wider blogging or social media world THANK YOU! You are bringing about positive change in your little niche which impacts the wider culture.

And finally, THANK YOU to all the friends, family, and care givers who support loved ones and patients who have developed Fibromyalgia. It is a frustrating, confusing chronic illness. Your love, support, understanding, and encouragement brings hope and purpose to our lives.

Fisbromyalgia Advocates:

“#Fibromyalgia is one of the most common chronic pain conditions…affects 3-6% of the world’s population.” – National Fibromyalgia Association #FibromyalgiaAwareness #AdvocacyInAction

What are your thoughts about formally advocating for better living with Fibromyalgia? Why do you think it’s still so missunderstood and lacks priority when “Fibromyalgia is one of the most common chronic pain conditions…affects 3-6% of the world’s population”?


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




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Using the Force to Further Fibromyalgia Advocacy

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.

Fibromyalgia Impact Tour Interview with Melissa Talwar

Today I had the wonderful experience of talking with Melissa Talwar of Support Fibromyalgia Network. She’s an inspiration in that she is relentlessly connecting Fibromyalgia Advocates to bring better understanding and better living with FM.

I was pretty nervous. Minutes before this, I realized the outlet that I had my charge cord plugged into was not powering my laptop, meaning it would shut down midway through our talk. Once I finagled the cord to the other plug by ripping it out of the cord ties I had it in, I clicked on the link with only a few minutes to show time (at 1pm EST). However, the link said my video and microphone wasn’t hooked up. Luckily, it dawned on me that to practice, I had used my computer camera, so turning it off allowed them to connect our video conference link. Whew!

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May the 4th Be With Us

Melissa made me feel at ease right away and I got totally into our talk. Her opening comment about May 4th and the force brought a smile to my face. I am passionate in sharing my journey and what I’ve learned. Melissa reinforced that it’s important that we do this. I can’t wait for 5/11/2021 when I get to talk to a state representative via Zoom to advocate for awareness and changes at the government level; this is organized my Melissa and her organization. I’ll keep Padme in mind as I share my story.

The video is 46 minutes in length. We cover a lot in that time, but for me the time flew. Then, after, Melissa and I talked for another hour. Feeling invigorated by the connection and renewal in my purpose. Thank you, Melissa.

Other Resources:





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Fibromyalgia: 15 Bloggers Share Top Tips for FULLY Living

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 text: Fibromyalgia: 15 Bloggers Share Top Tips for FULLY Living Multicolored line drawing of a lotus

Once you get a diagnosis of fibromyalgia, it can be so confusing as to what direction to go when it comes to managing your health and trying to live your life as FULLY as possible. These bloggers from the Fibro Blogger Directory share their own experiences of living with fibromyalgia and the issues and comorbid conditions that come along for the ride.

Personally, I have learned so much from these people. What works for one doesn’t always work for another, however, I have found many ideas to try (that felt right for my body and needs). Thanks to those that have shared their own journeys because you have made my own journey much better much faster than if I had just followed my health team’s directions.

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20 Years of Self-Experiment

I can only talk about what works for me and my own symptoms with fibromyalgia and chronic pain. I have been experimenting, with myself, for over 20-years now and the following things are the key to reducing my fibro symptoms.

Here are my top three tips for coping with Fibromyalgia in no particular order:

  • Hydrotherapy, which is physical therapy in warm water, has been extremely effective in helping me get all of the benefits of exercise, including increasing muscle length and muscle strength and control and maintaining a certain level of fitness and improving my balance. Being in the warm water also turns down my pain.
  • Deep, uninterrupted sleep reduces my pain and makes me a happier person all round. I do whatever I need to to get this sleep, including having my own quiet, peaceful sleep haven, a regular bedtime and some quiet meditation before sleep.
  • Besides eating in a basically healthy way, which is based on the Mediterranean diet. I find living dairy and gluten free really helps reduce: joint pain, peripheral neuropathy, stomach pain, constipation, hay fever, and other symptoms. I also take magnesium every night to relax my muscles, and find if I forget to do this, I have muscle cramps and twitches. From Lee Good, who is discovering what works to help Fibromyalgia at Fibro Files https://fibrofiles.blogspot.com/.
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4 Alternative Fibromyalgia Treatements

I know all of us react differently, but these are the fibromyalgia treatments I’ve found most beneficial since my diagnosis in 2014:

  • Low-dose naltrexone (LDN) – LDN is one of the only pharmaceuticals that has ever improved my chronic pain and other symptoms. Based on small studies, LDN outperforms all three fibromyalgia medications approved by the FDA.
  • Medical cannabis – I could not sleep without medical cannabis, and it’s been a huge lifesaver as I’ve struggled with chronic daily headaches. Does it eliminate the pain? No, not exactly. It just makes the pain more tolerable.
  • Infrared sauna – I’ve never regretted purchasing my infrared sauna. It helps immensely with that all-over achy feeling, and it’s heaven in the winter when it’s so cold that my bones hurt.
  • Magnesium – I use magnesium both topically and orally. Topically, it helps to reduce overall achiness, leg/foot cramps and restless legs. I also take a magnesium glycinate supplement, which improves all of the previously mentioned issues and keeps me regular!

From Donna @http://www.fedupwithfatigue.com/

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Tips for Painful Hands

In trying to come to terms with my sore hands and lack of energy with my fibromyalgia, I have come up with some new tricks to help in cooking meals.

I purchase convenience foods available online and I have found some things that I don’t have to peel or chop. Getting my meat already diced and my vegetables pre-cut and peeled is more expensive, but if it means that we can still enjoy nutritious meals, then so be it. My freezer has diced onions, pumpkin pieces, diced carrots, broccoli and florets of cauliflower as well as pre-cut chicken, stewing steak that has been diced and diced bell peppers. I no longer peel and chop and mash potatoes, but I use the frozen potato with butter added. It is worth the expense.I have a jar of minced garlic so that I don’t have to peel the cloves.

Our pantry has spaghetti, penne and rice that cooks in the microwave in 90 seconds. I use that because I no longer can hold the colander to drain it. Our fruit is canned. I keep our butter in a dish in the pantry because I cannot hold the knife to cut through hard butter or to scrape it. My lemonades come in bottles because I cannot manage the pull rings and my tomato sauce is in an easy pour container.

I am grateful for anything which will save my hands, like my electric can opener and my dryer. You don’t realize how hard pegging something on is until your hands are too weak to push on the pegs. But one simply has to go on and like all good Sacrificial Home Keepers, I do. It just takes a bit more planning to keep at it when you are an old hand in need of new ones. From Glenys @ https://sacrificialhomebody.blogspot.com

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My Preferred Prescription Medication

I have been using the fully allowed amount of the drug Savella for fibromyalgia for 9 years now.

Savella is the only medication created expressly for the pain of fibromyalgia. It works a lot like an anti-depressant, but it is not used for that purpose. It is a relatively new drug and expensive. Most insurance companies are reluctant to fill prescriptions without your doctor’s intervention. They want you to try medications such as Lyrica and Cymbalta first, which I have done with no help.

From the start of my serious pain issues, I have tried several different drug possibilities. At first, since we weren’t sure what was wrong, the doctor tried a prednisone titration pack. But as soon as I started decreasing the steroid the pain returned. We tried Tramadol with little success. Then Cymbalta which did nothing for me. Neurontin was next, but really had no effect. I continued on the large dose of prednisone and occasional Tramadol, but I was still primarily unable to move without extreme pain.

After six months, I finally went to Mayo Clinic and was diagnosed with Central Sensitivity Syndrome with indications of fibromyalgia, myofascial pain syndrome, and chronic pain syndrome. This is when they prescribed the Savella, and I have been on it ever since. From Mandy @ https://www.mandyandmichele.com/

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Top 3 Tips for Managing Fibromyalgia

I was diagnosed with fibromyalgia in 2003 and lived with the pain and symptoms longer; I have experienced life with this condition from all extremes. Out of all of my chronic illnesses, this is the one that is the best managed. But it wasn’t always this way. The first thirteen years after my diagnosis was the worst. They would have been a lot less painful had I knew what I know now.

The following are my top three tips for managing fibromyalgia:

  • My first tip is to accept that your life will change. Even with a low pain level, changes are necessary. Not because a lower pain level requires you to do things differently to reduce pain, but to keep your pain level at that level. Many patients find pacing difficult because they continue to live at the pace they did before chronic pain and not the speed their life with fibro needs.
  • Tip two is to listen to your body. If your body is screaming in pain, take a break. Pushing through pain will result in a full-blown flare. Taking longer to do things may feel like a punishment at first. But when you realize that anything you can do to decrease the chance of triggering a flare is winning, the easier it is to accept.
  • My final tip is to be open to trying new things. This may mean allowing yourself to use a mobility aid to stay out as long as you used to. It is to understand that mobility aids do not have age requirements. No one is too old or young to need one. The same goes for alternative forms of pain management.

Nobody’s pain management plan will be the same. What works for me might not work for you. Remember, there is no cure for fibromyalgia, but there are many things we can do and try to make our lives less painful.Visit The Disabled Diva’s Blog to learn more about how manages life with fibromyalgia here with Cynthia @ https://thedisableddivablog.com/fibromyalgia/

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Motherhood Wisdom

My #1 recommendation for living with fibromyalgia is learning to trust yourself.

The diagnosis of Fibromyalgia has a lot of baggage. Medical professionals, doctors, friends, and family, they’ll all question your diagnosis and your health at some point. Stay confident in yourself and who you are. Don’t let anyone convince you you’re not trying hard enough or that you’re imagining things. No one wants pain and fatigue.

Along with trusting yourself, listen to your body. You know your body more than anyone else does. You know that you’re not faking or exaggerating what’s happening to you. If your body tells you something, listen to it. Practice pacing and give yourself rest breaks. The more you push your body, the worse the crash. You’ll get better at managing your body’s needs over time. You’ll still mess up occasionally, or decide the crash is worth it, and that’s okay too.

Thirdly, remember that there are many different options for treatment, and no one responds the same. Some people do well with natural treatments, others need a combination of natural and medical. It’s okay to need medication; don’t let anyone shame you for doing so. You have to find what works for you. I have tried many different medications, and the ones that worked were all off-label.

Don’t give up on trying new things, it takes a while to find the right fit. From Shelley @ https://www.chronicmom.com/…/what-are-the-best…/

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Health Coach Gives Quick Helps & Longer Lasting Steps

Quick Helps:

  • Drink enough water to adequately hydrate your body.
  • Use topical/internal products for temporary/supplemental relief (herbal remedies, oils, rubs, supplements, etc.).
  • Reduce your body’s natural tendency to stay stuck in the fight/flight/freeze response with a deep breathing RESET  (help to restore/balance your body’s autonomic nervous system – ANS – response)
  • Get outside. Walk in nature. Move your body in ways that feel comfortable and healing to you – body movement, fitness, detoxification, etc. 

It’s important to note that the frequent application of these tips CAN have both short-term and longer-lasting healing benefits.

Longer-Lasting Healing Tips:

  • Support your body and mind with healing nutrition (remove what’s triggering pain/symptoms for you and replace key missing nutrients)
  • Support your body and mind with key stress management practices and protocols — done regularly and consistently
  • Support your body and mind with the elimination of toxins, infections, pathogens, etc. and replace with key missing micronutrients and remedies to re-establish gut/intestinal balance
  • Support your body and mind with better quality sleep (notice how this is a natural outcome of the previous steps?)  

From Sue @ https://rebuildingwellness.com/top-tips-fibromyalgia/

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As someone who has been living with fibromyalgia officially since 2014 and unofficially for many years before that, I’ve discovered some great tips for living with fibromyalgia. I’d like to share my tips with you today since they have. proved to be helpful to patients who are new to fibro and for veteran patients who might have something to add.

In recognition of World Fibromyalgia Day on May 12, 2021, here are my top tips for living with fibromyalgia:

  • Minimize stress in your life
  • Work/life balance is key
  • Say no and don’t feel bad about it
  • Have a hot bath
  • Create every day
  • Go for a walk
  • Fighting fibro fog? List it!
  • Nothing compares to you OR anyone else for that matter
  • Sweet, sweet sleep
  • Talk about your life with fibromyalgia
  • Join a support group.

Out of all the advice that I’ve seen and tried for living well with fibromyalgia, here is a very well known fact amongst fibromyalgia advocates that doctors fail to tell many new patients. Living well with fibromyalgia requires a complete lifestyle change and lifestyle management. From Carrie @ https://www.myseveralworlds.com/…/my-top-tips-for…/, the link her full article.

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What Works for Me Might Help You, too

I can only tell you what works for me, and maybe, it will help you, too.

Try things where you think they could help you. Even if it is not for “fibro”. I have an cream that I have been using since my childhood for chronic bronchitis. It also helps me with tension/pain in combination with an heating blanket/pillow.

The other things that help me besides medication are my pain creams, pain oils, exercises and my Fakirmat. I have a good physiotherapist who teaches me what I can do. Functional training in warm water also helps me. If something doesn’t help you that helps others, don’t give up. We are all different, for some this helps and for others that.

Find something to distract yourself from everything. For me it’s painting, watching my favorite comedians & favorite shows. Music is good for my soul, a walk in nature does wonders for me. Well, I have a dog, so it’s time to go outside.

If you like to write, you can write in a diary. Write the good things that happen bigger and in your favorite color in the journal and the rest regular. So you can later see that there are also good things and not everything is bad. This is good for the soul too.I think it’s important to learn that you don’t have to have to feel guilty if you cancel something or can’t do something. Sometimes it´s okay just to breathe and to survive the day. From Bettina @ https://bettinabier.com/category/fibro/

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Everyone is at a Different Level

It is difficult to recommend anything for someone with fibromyalgia since everyone is at a different level. And that is also why I don’t recommend any specific medication or alternative treatment, since everyone responds so differently to any of those.

So take these as suggestions that may or may not help you:

  • Exercise- Mild/moderate exercise is one of my fibromyalgia recommendations. Mostly because the lack of exercise leads to muscle de-conditioning and more pain. Something I experienced when my vertigo was unmanaged and I couldn’t function. Also the lack of movement increased pain. But then muscle weakness Also increased pain. Prior to the mild/moderate exercise always helped me with fatigue/fibro fog management. Now I find it basic maintenance for keeping my muscles active. Taking walks outside it a great one since it also gets us outside, so I like to do that. I also do some stretches and some stationary biking
  • Basic supplements- There are some essential supplements I take. Magnesium (with calcium and D), B-complex, Rhodiola (for fatigue), fish oils. These are for stress, inflammation and magnesium is specifically for fibromyalgia. There are plenty people add to that, but I just take those essentials.
  • Meditation/relaxation- I think stress reduction and management is pretty important for us. I do meditation every morning and relaxation breathing everyday, as needed. Relaxing breath or 4-7-8 breathing is one I like a lot. It involves breathing in for 4 seconds, holding the breath for 7 seconds, and exhaling for 8 seconds. It can help with anxiety and help people sleep. I definitely find it can calm me down when my anxiety from pain gets high. I recommend the app Mayv to get anyone started on pain management strategies such as meditation and relaxation but also more.

From Nikki @ https://brainlessblogger.net/…/top-recommendations-for…/

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Top Ideas for Coping with Chronic Pain

I have been diagnosed with fibromyalgia for 3-years, but my symptoms started long before that when I was 13 years old. I have learned a lot about myself and my health over time and found some really important things that have helped me cope.

  1. Listen to your body. I have always been one of those people who always says yes and doesn’t stop. I’ve always gone above and beyond but that is my biggest downfall. I’m slowly learning to listen to my body and stop when it tells me to.
  2. Be honest. Be honest with yourself and with others about how you are feeling. I always felt guilty and carried on, hiding how I really felt, but it only made things worse. Now I speak up when I’m bad, so others know I can’t carry on, and they have gotten used to it and know when I need support.
  3. Don’t give up on yourself. You have survived 100% of your bad days so far. Some days you just can’t be positive, and it just hurts too much. Don’t expect too much from yourself and just let it be. Better days will always be there. Focus on the little things and you’ll get through it ?From Bethan @ https://hellofibroblog.com/
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Sleep/Nature/Simplify

Sleep Routine/Self-Care: I include self-care in my sleep routine. I do other specific self-care tricks as I can, but my nighttime routine is solid. I am very disciplined about laying down at the same time every night. It not going to bed time yet; it’s self-care time and time to unwind, so when it’s time to go to sleep my mind is empty and ready. During this time, an hour to an hour and a half before bedtime, I start to decompress. There is no sound, no phone, no media, no gadget- nothing to distract me at all. Our mind needs quiet time and most of us stay on our computers, phones, reading, doing something stimulating right at the time the body needs to wind down. Sometimes, I run the aromatherapy diffuser, but I can find that distracting some nights. I slather myself down with my CBD and Aromatherapy lotion making sure to pay attention to all the areas where there’s pain. I let the smell of the lotion fill my nostrils as I lay there and de-junk my brain for the day. At bedtime, I take my final meds, and my mind is ready for sleep.

Nature: A great tip for the nature lover. I have multiple wind chimes around the house to remind me of nature, even when I can’t go outside. There’s nothing like the sound of an unexpected chime to force me to take a minute and look out the window and soak in what nature has to offer from the kitchen window or back door. I also have several bird feeders and birdbaths to enjoy.

Time-Saving: Meal Delivery 3-days a week; we just have to prepare the meals. It makes life so much easier, the time saved planning and grocery shopping is worth the extra cost. On Sundays, we cook a meal, and on the other days, I eat yogurt and fruit.

From Melinda: https://lookingforthelight.blog/2021/04/23/my-top-three-fibromyalgia-tips

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Wide Range of Symptoms

Fibromyalgia comes with a wide range of different symptoms which are often challenging to manage. In this post, Alisha from the Invisible F offers three of her top tips for living with fibromyalgia. Read here: https://theinvisiblef.com/…/my-three-top-tips-for…/

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Fibro Doesn’t Have Me

I have had fibromyalgia for over 20 years, and no longer take medication. I have found my lifestyle changes have really helped reduce the flares and allow me to tolerate the pain much better. Here are my top tips:

  • What you eat really does matter. I often say eat crap, feel like crap. I follow a Paleo/Mediterranean inspired diet that is gluten and dairy free, and low in sugar and processed food, and high in fruits and veggies. This helps me feel my best, avoid stomach issues, and reduce inflammatory responses in my body.
  • Movement is medicine. I cannot run, but I can walk. I cannot do cross-fit, but I can do Pilates or yoga. Daily movement is important for my mind and body. I take daily walks to get outside, breathe fresh air, appreciate nature, and clear my head. I do yoga, Pilates, or use a stationary bike to keep my muscles strong and flexible, to reduce stiffness, and to maintain my weight.
  • You can’t do everything, but you can do something. Pushing myself too hard often triggers a flare. I enjoy my walks, hikes, and gardening, all in moderation to avoid flares. And I give myself permission to rest and ask for help when needed.

I have fibromyalgia, it does not have me. From Cynthia Baughman at www.MyInspiredFibroLife.com.

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How to Navigate A New FM Diagnosis

It’s hard to give advice for how to best treat fibromyalgia because we are all so different. However, I share my story just in case they might glean something from my experience.

I fully believe that I have made much faster and better progress since fibromyalgia laid me low and forced me to have to resign from my teaching career after 32-years due to finding quality information from others who have shared their journey living with fibromyalgia (This is, in fact, how I came to join Fibro Blogger Directory).

In the last 3-years, this is what I know to be true:

  1. Listen to yourself; follow your intuition. I can’t tell you how often I have doubted myself. For years, prior to my actual diagnosis, I didn’t push for answers to what I now understand to be chronic pain. Even when I was at my worst (barely functioning at school and then coming home to do nothing but lay in my bed, feeling like I couldn’t move), I struggled to go to the doctor. Luckily, at the urging of my children, I finally did. Now, I’m much better at listening to my gut (which has led me to various positive treatments) and to my body (which guides my moment to moment actions).
  2. Educate yourself. With FM, you will probably end up knowing more about it than your caretakers. I’m a teacher. Learning is a passion of mine. Learning about FM central sensitization syndrome and about brain plasticity has given me the focus for my wellness journey: rewiring my brain by calming down my amped-up nervous system.
  3. Be gentle and loving with yourself. I’ve struggled with this. I’ve lived 53 years with basically ignoring myself. I’ve forced myself to always do what was expected. Even in yoga (which I started 20 years ago), I would push myself to injury. It’s taken a lot for me to learn how to be gentle, how to listen to myself, and how to be a loving force for myself. But through this journey with fibromyalgia, I am finally doing the work to be my authentic self.

Here is my full post with loads of links to other helpful posts: https://painfullyliving.com/2021/04/22/may-is-fibromyalgia-awareness-month-how-to-navigate-a-new-fibro-diagnosis/


Do you have any helpful tips or resources you would like to add? Any questions for our Fibro Bloggers to answer? (Please, only sincere comments. Do not try to sell anything. I will delete any spammy type comments.)



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.

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



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