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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teal line drawn waterlily with teal lettering of the title and motto
LIne drawing of a lotus in rainbow colors; white font for title

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!

Photo of my inner forearm laying on my computer keyboard, white coffee cup behind it.  On my forearm is an outline of a lotus flower done in purple and teal colored lines and dots.

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:

teal line drawn waterlily with teal lettering of the title and motto
May is Fibromyalgia Awareness Month: How to Navigate a New Fibro Diagnosis

May is Fibromyalgia Awareness Month: How to Navigate a New Fibro Diagnosis

4 images: 4 hands with chalk drawing a light bulb on cement, a clip board with the words Diagnosis FIBROMYALGIA and stethescope, a pair of hands cupping a cup of tea, a woman looking down at her hands.  Dark Teal font: How to Navigate a New Fibro Diagnosis.

It’s hard to give advice for how to best treat fibromyalgia (FM) because we are all so different.  But when you find yourself newly diagnosed with FM, it’s difficult to find clear first steps to take.

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 (which is how I came to join Fibro Blogger Directory). So, I share my story just in case other’s living with FM might glean something from my experience.  

From my own journey with FM, this is what I know to be true:

An upclose of a woman's face, looking down at her own hands. She's wearing white and the image is unfocused from her shoulders to the hands. Text in dark teal: Listen to yourself; follow your intuation.

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).

Image centered: Female Doctor holding a paper file, hand older woman's arm, as if delivering information.  Dark Teal Text: Educate yourself.

2. Educate yourself.

With FM, you will probably end up knowing more about it than your care takers.  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 of my wellness journey: rewiring my brain by calming down my amped-up nervous system.

Image of female hands holding a cup of tea. Teal Text: Be gentle and loving with yourself.

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 FM, I am finally doing the work to be my authentic self.

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;)

An image of Kelley and I in the woods to the left corner on a pink background. The title in Burgandy font. Abstract heart lines behind the image in the left corner and right corner. A quote by Lao Tzo in Burgandy font under the image.

A Love Story: Stronger Together

The quote in pink text sits within a Burgandy lopsided oval.  This is on a pink square background with heart lines abstractly placed behind the oval.

Waking up this morning with pain, I cried. Pure frustration. My poor husband asks, “What do you want for me to do?” At first, I asked for a massage. When he asked where, I just whimpered, “Never mind.” Reality is, he can’t possibly help. The pain seems to have no spot to massage. It’s just everywhere.

So, I ask for my Yogu myofascial release therapy ball, hot pad, and water, and medicine. That helped me to calm down. Then, he drew me a hot bath with Epsom salts. And, as I soaked, he brought me some tea.

This is love.

Related Reading:

A photo of a young man and woman smiling.  The man, wearing a red baseball cap backwards and blue sweatshirt has his arm around her waist.  She is wearing a blue/green flannel shirt and has short brown hair framing her face.
Our first summer together 1983 in Chelsea, MI at Camp MUCC.

Our Love Story

I met Kelley when I was 19. He was 22. I was the waterfront director at a fairly unusual summer camp for kids. Camp MUCC, Michigan United Conservation Club, which for those of you who might not know, is a hunting club. Being I had never even thought about hunting before, this was an odd place for me to land a job. But I was there for the water. Kelley, on-the-other-hand, having studied Wildlife Management at MSU, was hired as a riflery and hunting instructor.

This was to be my home for the summer before going off to college. I had just left my foster family’s home never to be a dependent again. I knew I was now on my own. Kelley was on his own, too. Everything he owned was in two luggage boxes. This was to be his home before he ventured out to find his “real” job.

The week of training, before the campers arrived, we hit it off right away. And from there, on the weekends, once the campers had left after breakfast on Saturday, we often were the only ones left at camp. We were poor as college-students, but we had food and shelter on a small lake in the quaint town of Chelsea, MI. Life was good.

Related Reading:

A collage of our week trip to northern Michigan and to meet Kelley's family.  Images of our canoe, swimming in the river, our tent... on a pink background with Burgandy hearts behind.
Kelley was from Manton, MI, so he brought me to meet his family before our week’s journey.
His older sister was shocked
when he showed up at her door with a girl!

An Engaging Time

At the end of the summer, before I headed to college and Kelley off to Arizona to try to get a ranger job at any national park, we went on a week-long canoe trip, just us two, down the beautiful Manistee River. It was probably the most wonderful week of my life. At the beginning of the trip, Kelley asked, “What if I asked you to marry me?” I snorted, “I’m too young for marriage.” Nothing more was said about that all week. However, at the end of the week, as Kelley was taking me back home to Grand Rapids, his car broke down near the Cedar Springs exit.

We stayed the night at the campground just off from 131, Kelley covered in grease as he worked on the car to get it going. I remember him looking up from the engine as I stood there talking to him and handing him tools as he requested. And that was when he decided it was the perfect time to ask, “Will you marry me?” I didn’t hesitate, not even recalling what I had said one week earlier, “Yes, I will.”

We were engaged, no ring or anything at that point. We didn’t tell anyone we were for at least half a year. Kelley was leaving for AZ in the coming week, and I would be at UofM, forging a new life. Not sure we knew how things would work out, but I know for sure that we both knew we were going to be together through it.

This was before the Internet and e-mail were a thing in your average person’s life. Kelley and I were poor. I was living off my savings from the $1000 that I had made over the summer, Pell Grants, and student loans. Kel was living with his mom and step-dad (both very supportive of him finding a National Park job) and odd jobs he found in Phoenix. We could not afford long-distance calls, and so we wrote.

Related Reading

An image of a hodge-podge of handwritten letters and cards set in an oval.  Behind that a pink background with abstract heart-shape lines placed at the top left corner and bottom right corner.
I’ve kept all of our correspondence in a binder from that time.
There are over 100 letters, notes, and cards.

Long-distance Love

Kelley was and is a guy who shows his love through what he does and generally doesn’t say lovey-dovey stuff. Surprisingly, when given a pen and paper and no way else for us to connect, he poured everything out. I, too, found that writing allowed me to fully express my thoughts and emotions, much more so than when we were goose-bumped, love-struck-dumb in the presence of each other. (Ah, new love!) And so the letters (long, long letters) flowed.

After six-months apart, Kel did not find a park job and I was really struggling at school, so he decided to drive back to Michigan. The red Pacer he was driving was glued and tied together for the most part. But he was determined to get back to me. He drove straight through on what would be the equivalent of several Monster caffeinated drinks (instead black capsules caffeine). By the time he got to Ann Arbor, his eyes were buggy and bloodshot and his hair a greasy mess. He called me at my dorm, letting me know that his car had conked-out on the highway just outside of town.

Being I didn’t have a car, my good friend, Mindy drove me to get him. She was ever so kind to let this wild-eyed, unsavory looking man in her car. She had really only heard my stories and saw me writing him letters and making him mixed-tapes of love songs, but she really had no idea who he was at this time.

We laugh now (she and her husband have been good friends all these years later) at how she, out of pure love and concern said, “Katie, are you sure you want to marry this guy?” I was sure. I loved that scruffy, red-bearded man, and I knew he loved me.

Related Reading:

An image of young Kelley and me wearing our green Camp MUCC staff shirts on the pink background with abstract Burgandy heart lines.
Our second summer as camp counselors.
These green Camp MUCC shirts lasted long enough to be PJ shirts for our two children!

Together Longer Than Not

It was that February (Groundhog’s day) that we bought my engagement ring and our wedding rings. That next summer, we did one more stint as camp counselors at Camp MUCC and then the next spring, 5/25/1985, we were married, surrounded by our family and friends.

We’ve been married 35 years. Down days like the past few, make me appreciate the love we share. We’ve had so many twists, turns, ups, and downs on this journey together. We’ve grown so much from those homeless babies back when we first met. The life that we’ve built together gives me strength, courage, and purpose.

Image of my family: Kelley on a park bench in the woods is sitting next to me, holding our granddaughter.  My son sitting next to me.  Behind us is my daughter and daughter-in-law.  The background is pink with  abstract heart lines in burgandy.
Being parents of two amazing children, and then, being blessed to bring in our daughter-in-law and granddaughter, makes everything make sense, you know?

We continue to journey together. This year finds us with more twists and turns as I was diagnosed with Fibromuscular Dysplasia, a rare vascular disease that is affecting both of my carotid arteries. Yet, we are ever stronger together, and because of him, I am more courageous than I ever thought I could be.

teal line drawing of lotus flower

I almost didn’t write a post this week. The first two paragraphs were written on Monday. I was too out-of-it and down to write after that. Until today.  The direction of the post took a totally different turn as I thought about how much my guy means to me and just how much he supports me and has from the very beginning. Who in your life do you depend on that gives you the extra strength and courage you need to live FULLY despite pain?

teal line drawn waterlily with teal lettering of the title and motto
Whitewashed boards with an image of bread, sprigs of wheat and a green and white checkered cloth. The title text in dark teal with a graphic gluten free, in a circle.

Fibromyalgia: Impact of Going Gluten Free

A white-washed wood plank background with whole loaves of bread, stems of dried wheat, and a checkered green and white cloth in the lower left corner.  Offset to the right is the title text with a graphic containing the words GLUTEN FREE in a circle and a wheat steam in the middle with a slash line over it.

Recently, I’ve had an eye-opening surprise. By going completely gluten free, I have eliminated the chronic stomach pain I’ve had for several years and have greatly reduced the increasing joint pain that I have noticed the past year.

This is a diet change that I have specifically rejected since my diagnosis of Fibromyalgia. If you’ve done any research on managing Fibromyalgia symptoms: muscle/joint pain, fatigue, and brain fog (to name the main ones), you most likely have read diet changes that are suggested. However, I really wasn’t buying it as something I believed would help nor something I was willing to give a try.

My Reasons for Opposition

A white-washed wood plank background with whole loaves of bread in the lower left corner.  Off set to the right is an graphic that explains and shows an illustrated image of  the Nissen procedure.

Stomach Surgery

Well before my diagnosis of Fibromyalgia, I was diagnosed with GERD. I had spent several years on prescription medications of different sorts to control the acid reflux I was experiencing. However, it wasn’t really controlled. I always had the “burned” feeling just under my sternum as well as a hoarseness to my voice. With concerns about the ramifications of taking the medicine long-term and the fact that my lower esophageal sphincter (the muscular ring connecting the esophagus with the stomach) didn’t fully close, I decided that surgery would be the best option. In 2010, I had a procedure called the Laparoscopic Nissen Fundoplication. This required 5 keyhole incisions to my stomach and ultimately had the upper part of my stomach wrapped around my esophagus to form a collar which, on eating, would tighten to stop the acid reflux.

However, ever since this surgery, my stomach has been upset. After the fact, research on the procedure, did show that this could be a result, so I chalked it up to I should have done my due diligence and now had to live with the consequence. I gave up all carbonated drinks as a result to help with reducing gas build up.

A white-washed wood plank background with whole loaves of bread in the lower left corner.  Off set to the right is a graphic of a milk carton in the middle of a circle with a line diagonally through it. Above the circle is the text Dairy Free in dark teal font.

Already Dairy Free

A few years after the Nissen procedure, I was experiencing a lot of stomach upset, gas, IBS issues, and periodic laryngitis. A student’s mom whose husband was a doctor suggested that I may be lactose intolerant. My partner teacher had been having similar issues, albeit not the laryngitis, and learned that it was her gallbladder which she had removed. I thought that I’d give the no dairy a try before checking into it further with a doctor for fear I too had gallbladder problems. I just didn’t want more surgery.

This was about 6 years ago. Back then, there wasn’t dairy free options available except at the healthfood store a good hour’s drive from my house. Also, I had been eating a Dannon yogurt for nearly every lunch and my husband and I enjoyed a nightly dish of ice cream. A hunk of cheese was my idea of a yummy snack. However, I did end up going dairy free (without substitutions) for about a year. I did notice improvement in my stomach, IBS, and never again had the laryngitis (never sure if that was connected). But one morning, while visiting my daughter in Denver, she took us to her favorite bagle shop that made their own bagels right there for us to watch. The breakfast sandwich that called my name was a fresh plain bagel with a thick slice of ham and an even thicker slice of Brie cheese. This choice was so delicious but also landed me in her appartment’s bathroom for much of the day.

I’ve stayed dairy free ever since with very little slip-up. Luckily, there’s so many more options in my local grocery store now-a-days. However, the thought of going gluten free and dairy free is so darn limiting. When my kids come over, they often want to order pizza. If I’m dairy free, it’s a pain, but I just don’t order cheese. I love the doughy, thick crust anyhow. But if I have to order the gluten free crust, while not horrible, gluten free with no cheese is just well, not worth it.

A white-washed wood plank background with whole loaves of bread in the lower left corner.  Off set to the right is a graphic of an outlined brain with electric bolts shooting from it.  Curving around the upper  side is text in dark teal that says Amplified Nervous System.

Fibromyalgia Isn’t an Autoimmune Disorder

Early on, in my training about Fibromyalgia, I was introduced to the Fibromyalgia researcher, Dr. Daniel Clauw. “Because pain pathways throughout the body are amplified in fibromyalgia patients, pain can occur anywhere, so chronic headaches, visceral pain and sensory hyper-responsiveness are common in people with this painful condition,” said Clauw. The Pain specialist physician that I saw during the 10-week pain management boot camp I attended told me that there was no evidence that food plays a role in contributing to Fibromyalgia symptoms.

I had chosen to ignore all those who were talking about this diet or that as a cure to Fibromyalgia, especially when they mentioned the term “leaky gut”. This is a diagnosis that many in the medical field don’t think is real. As stated in the article from Is Leaky Gut Syndrome a Real Condition? An Unbiased Look, that currently leaky gut syndrome (LGS) isn’t a recognized diagnosis and very little research on it. However, it seems that LGS is getting looked into more and is possibly coming to be seen as an issue. In a 2019 article in Medical News Today, it states, “Researchers have found significant evidence to support the existence of leaky gut. Research also indicates that leaky gut may contribute to a range of health conditions.”

What Changed My Mind?

I’m a huge “fan girl” of Dr. Ginevra Liptan, a doctor who not only lives with Fibromyalgia, but has focused her medical practice on treating it. She’s written a must read for all those living with Fibromyalgia called the Fibro Manual and the companion The Fibro Food Formula: A Real-Life Approach to Fibromyalgia Relief.

Also, several of Fibro friends have talked to me about their own choice to go gluten free and how it has helped them. Lee Good who runs two FMS groups I belong to Fibro Connect and Fibro Blogger Directory, posted this earlier this fall:

Another fellow Fibro blogger whom I’ve learned from is Donna who writes Fed Up With Fatigue. Through our talks, I decided to take Low Dose Naltrexone. She helped with information to give my doctor, and when I was struggling with it initially, she gave me ideas for things to try. She’s been gluten free for a time and has talked about how it’s helped her. Her post on going gluten free gives wonderful resources.

And then more recently, my wellness coach, Sharon Waldorp shared the benefits she found after going gluten free. I committed in our talk to giving it a try; she said that I needed to give it at least 8 weeks to see if it did anything for me…well, I’m 24-days in I’ve been amazed by the noticeable improvements.

Whitewashed wooden planks background with bread in a basket to the lower left corner, to the left a circle with pepperoni pizza photo and the gluten free stamp in white.

What a Surprise!

Within the first few days, I began to notice that I didn’t have a stomach pain. Like a fool, I started this endeavor between Christmas and the New Year. It was New Year’s Eve that I really noticed not feeling ill. Usually, on special occasions where food is a big focus, I end up really feeling awful. However, that evening I went to bed with a calm stomach and in the morning, no different. Also, the diarrhea I’ve come to expect nearly all the time, has nearly gone away in the last week. And finally, the joint pain, especially in my hands which has gotten worse over the past year has noticeable lessened.

Another surprise, I tried a bowl of ice cream last week-a bit of gas, but no IBS or stomach pain! Then, this past weekend, we ordered pizza. I decided to throw caution to the wind and order a gluten free crust with cheese, pepperoni, and banana peppers. It was delicious! And again, no major consequences! I will not go wild with the dairy being I’ve gone so long without and it’s not necessarily a great thing to eat in abundance anyhow. However, being able to have it now and then will be such a luxury!

What Now?

After research, I’ve come to think I’m non-celiac gluten/wheat sensitivity. As a part of my Fibromyalgia, diagnosis, I was tested for allergies, Lyme Disease, and inflammation. All of these came up with negative results. However, I do think I should look into the celiac testing, at least talk to my gastroenterologist who did the Nissen procedure to see what he thinks.

I have a few of the symptoms but not the most telltale: fatigue, joint pain, depression/anxiety, reacurring canker sores, diarrhea, stomach pain, brain fog, and ADD.

Do You Have Celiac Disease?

Information from the Celiac Foundation:

Adults are less likely to have digestive symptoms, with only one-third experiencing diarrhea. Adults are more likely to have:

  • unexplained iron-deficiency anemia
  • fatigue
  • bone or joint pain
  • arthritis
  • osteoporosis or osteopenia (bone loss)
  • liver and biliary tract disorders (transaminitis, fatty liver, primary sclerosing cholangitis, etc.)
  • depression or anxiety
  • peripheral neuropathy (tingling, numbness or pain in the hands and feet)
  • seizures or migraines
  • missed menstrual periods
  • infertility or recurrent miscarriage
  • canker sores inside the mouth
  • dermatitis herpetiformis (itchy skin rash)

I will keep going, for at least the 8-weeks, doctor’s orders or not and then we’ll see. But if I keep having even just the results I’m currently having, it’s seems worth it.

What do you think about diet and Fibromyalgia symptoms? If you’ve gone gluten free, why did you? What has been your experience?

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