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  • Writer's pictureMichael Lenz

Living with Fibro is like living a narrow bookshelf between to bookends

In today’s blog post, we welcome Lynn, a long-time Fibromyalgia patient who shares her personal journey battling Fibromyalgia. Lynn shares practical insights on managing symptoms, providing inspiration and much-needed hope to those battling this chronic pain disorder.

Fibromyalgia: A Deep Dive into the Personal Journey

Lynn describes living with fibromyalgia as akin to living on a narrow shelf between two bookends – it seems limiting on the surface. Yet, by adjusting lifestyle choices, Lynn managed her symptoms effectively. She credits her disciplined personality as a key factor in adhering to a regimen that minimizes symptoms.

Lynn recognized that cleanliness and organization are pivotal factors that contribute to her well-being. This neatness also extends to her dietary habits, where she focuses on consuming whole foods and avoiding preservatives and processed food items. In particular, Lynn noted the adverse effects of sugar on her health, finding a significant shift in how she felt after consuming high-sugar foods. In contrast, consuming raw vegetables brought about a rapid improvement in her well-being.

The Importance of Movement and Sleep in Managing Fibromyalgia

Another pillar in Lynn’s strategy in dealing with Fibromyalgia is regular movement. From her experience, being active has a soothing effect on her body, quickly easing aches and pains. Tools like the Tola Point System, a set of plastic-based massage gear, work excellently for her body, allowing for individual control of pressure and alleviating any knots or pain points.

Similarly, optimizing her sleep schedule made a profound difference in her life. For Lynn, adhering to a consistent sleeping routine minimized fibromyalgia symptoms and general discomfort. Even if her sleeping hours remain the same, adjusting the timing can upset her comfort, reinforcing the importance of a steady and consistent sleep schedule.

Understanding the Interactions of Fibromyalgia and Other Illnesses

Throughout her journey, other health issues like Ulcerative colitis and SI joint dysfunction emerged, leaving Lynn questioning whether these were separate health issues or intertwined with her fibromyalgia. Recognizing the need for further understanding, Lynn pursued more education about her condition, its symptoms, and effective management techniques. Knowledge and understanding have become her allies in navigating life with Fibromyalgia.

Diet and Fibromyalgia:

Lynn opens up about the significant role that diet plays in managing her fibromyalgia symptoms. She highlights the adverse effects of consuming preservatives, additives, food dyes, and excess sugar. Lynn focuses on whole foods and a primarily vegetarian, plant-based diet. She shares a powerful anecdote about experiencing a sharp decline in well-being after consuming sugary treats during an afternoon tea event, only to feel a remarkable improvement after indulging in a salad comprising fresh vegetables. Lynn's story reinforces the importance of mindful eating and the impact it can have on fibromyalgia symptoms.

Neurodivergence and Fibromyalgia:

Michael shares insights from his conversation with Dr. Mel Hauser from All Brains Belong, who was on the podcast episodes 99-103, pointing out the connection between autism and fibromyalgia, with picky eating and change of routines being common traits in both. He also discusses the impact of neurodivergence on sleep patterns and the benefits of regular exercise in managing restless leg syndrome, often experienced by individuals with fibromyalgia.

Lynn shared some self-insights as she reflected on her life.

"That, that is me. I don't like clutter. I like everything organized a certain way. My spices are in alphabetical order. Things just have to be lined up, even if it's knick-knacks on a shelf; I will turn one knick-knack maybe 45 degrees because that looks better than when it was facing the other way."

"You name it, I'm not easy to live with. I'm a neat freak. And I was like this as a child. And my parents, they were neat enough. I walked around the house like, Oh, I need to arrange this. I would take things out of the kitchen cabinets when I was three and put them back in.

I would take everything out and put them back in. I mean, I've always thought that there is some, whether it's the autism spectrum or obsessive-compulsive."

"And I think in school, I actually, I was a straight A student, and I could memorize anything, so even in college, I could be out at a bar and come home at 2 AM and read and study for a test and get an A on it the next day. So, it was almost like a quasi-photographic memory.

I think sensitivity to smell, certain things, that artificial smell, I can hardly stand.

It does present some challenges. If I'm attending a business meeting and a colleague here wears a lot of cologne. I need to make sure I'm sitting on the other side of the room from him."

"It's been things like that over the years, too, or even the brain things. I don't like work projects that are chaotic. And I struggled with that back on a previous job when there was an implementation of a new website, and my boss was just, just get it out there. We don't have to have everything perfect. And I was like, wait, no, everything is methodical, and they're step-by-step. So yeah, I guess fibromyalgia can definitely bring on brain patterns, perhaps along with the body things, but it is manageable. And that's certainly the key point I want to bring home."

Validation and Connection:

Listening to Lynn and Michael's stories is a reminder that living with fibromyalgia can often lead to feelings of isolation. However, their personal experiences and journeys help to validate and connect with others facing similar challenges. Lynn finds solace in the "introduction of other elements" through podcasts, which offer valuable education and the opportunity to connect with others and share their experiences. The podcast becomes a source of hope and lightness, alleviating some of the burdens associated with fibromyalgia.

Lynn’s message to all dealing with Fibromyalgia or any chronic illness is clear:

"You are not alone."

By sharing her experiences and strategies to manage her condition, she aims to provide hope and guidance to others. She highlights the critical role of self-care, consistent sleep, plant predominate diet, regular movement, intentional mindfulness in managing symptoms, and, most importantly, achieving a good quality of life.

Inspired by Lynn's story, we at Conquering Your Fibromyalgia express our appreciation for her courage and hope her story resonates with you. We believe that fostering understanding and creating spaces for shared experiences can profoundly impact those living with Fibromyalgia.

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