Losing My Mind: The Debilitating Effects of Memory Loss | Living with Fibromyalgia

For most living with fibromyalgia it takes many years to come to grips with the fact that the person you once were eventually dies and a new version of the person is reborn. The checklist of what fibromyalgia steals from you mentally and physically seems to grow longer with each passing day. Early on in my journey when I was passing through the five stages of grief, anger was a common emotion as I watched my life change from the inside out and was able to do very little about it.

“Losing my memory along with everything else is simply to much to bear and I am terrified”

As I approach my tenth year living with fibromyalgia I can say that I’ve made peace with and accepted the fact that I am a new person and will never ever exist how I was prior to fibromyalgia. Still I would be lying if I didn’t say that I am extremely concerned and terrified at the fact that I am losing more of my short term memory with each passing day. But before I get into my personal challenges with memory loss, let me share some of the general facts about fibromyalgia and memory loss.

Memory Loss & Fibro

According to the National Fibromyalgia Research Association, 46% of fibro patients suffer from both fibromyalgia and impaired memory. The National Fibromyalgia and Chronic Pain Association explains, “…we have found that FM patients perform more poorly than age- and education-matched controls on tests of several different types of cognitive function.”

According to a 2015 review in Rheumatology International, some patients report that the loss of mental clarity can be even more devastating than the pain and fatigue associated with fibromyalgia. Fibro fog can manifest itself in different ways in different people but some of the most common symptoms include:

  • short term memory loss
  • misplacing objects
  • becoming easily distracted
  • forgetting plans
  • difficulty carrying on conversations
  • inability to remember new information

One study from Korea, published in 2012, concluded “that the working memory deficit found in FM patients may be attributable to differences in neural activation of the frontoparietal memory network and may result from both pain itself and depression and anxiety associated with pain.”

Another study showed that fibromyalgia patients are not receiving enough oxygen to different parts of their brain. The Arthritis Foundation speculates that a possible reason for this could be that a fibro patient’s central nervous system is off kilter which leads to changes in the brain’s blood vessels. Thus, impaired cognitive function.

Although cognitive difficulties have sometimes been thought of as “all in a patient’s head,” a 2015 study in Arthritis Care and Research found that fibro fog is a real issue. In a study of 60 individuals – 30 with fibromyalgia and 30 without fibromyalgia – researchers found various impairments of attention and memory in fibromyalgia patients when compared with healthy controls. What remains unclear is what is causing the cognitive challenges.

So the studies are conclusive living with fibromyalgia includes so much pain, depression, and anxiety that individually and collectively cause the brain to behave abnormally. Indeed, the study went on to add that “memory and concentration problems in FM patients were related to impairments in their ability to organize and plan ahead, express themselves, respond quickly to questions, and to drive.”

The memory loss and “brain fog” that I have experienced for years but seems to be more noticeable over the last two years is not all in my head but very tangible and real.

What Happened to My Memory

My experience has largely fallen in line with the research and facts listed above. Over the last few years I’ve found myself stumbling over words when I am speaking, constantly losing my train of thought, and literally losing my short term memory. A few years ago I was in denial and tried to overlook these issues. I refused to believe that the only thing that I had left to rely on (“my mind”) was also being affected by this insufferable disease.

I pride myself in having the mental fortitude and stamina to have been able to turn my negative experiences living with fibromyalgia into an outlet and platform that has allowed me to share and sustain myself. Writing books, running a blog, and creating content all require a immense measure of mental fortitude that up until recently was in tact despite the chronic fatigue that when flaring limits my stamina physically and mentally. This truth was something I have been able to overcome. But losing thoughts, forgetting if I did something, and needing to rely more heavily on notes, journals, and calendars is quite different. This means that the content if I do not capture it immediately simply will not be there. Coming to grips with the harsh reality that my mind is not as resilient as it used to be and at just 32 years old I have to worry about the real and tangible effects of memory loss is very challenging.

Even though I’ve lived with fibromalgia long enough to know that I will do my best to rise above this symptom as best as I can, I would be lying if I didn’t share that I am tired. Tired of pushing through. Tired of the pain. Tired of rising above. Tired of being tired. Losing my memory along with everything else is simply to much to bear and I am terrified.

Source(s): Fibromyalgia Treating | Fibromyalgia News Today |National Fibromyalgia Research Association |Plos.org|Arthritis.org

Special Announcement | The Gluten Free Chef From Scratch Products at Harts Local Grocers

I am pleased to announce that Hart’s Local Grocers is once again carrying The Gluten Free Chef from scratch bakery items.

The Gluten Free Chef Products are back at Hart’s Local Grocers beginning Saturday February 11.

Beginning Saturday February 11, 2017 Hart’s Local Grocers will once again carry select from scratch bakery items from my recipe collection.  This continues my partnership with the independent grocer and I am thrilled to once again have quality gluten free items in the store. For now, the selection will focus on cookies with my Peanut Butter Chocolate Chip Oatmeal Raisin Cookie being the debut item. I’ll be in the store February 11th sampling the cookies and selling them to all of Rochester at my 2nd Saturday Pop Up Event from 2:00-4:00 PM.

Peanut Butter Chocolate Chip Oatmeal Raisin Cookie

The Peanut Butter Chocolate Chip Oatmeal Raisin Cookie is a loaded oatmeal cookie with golden raisins, chocolate , shredded coconut, & peanut butter. It contains certified gluten free oats. The cookie will be jumbo in size and retail for $3.25/ each. 

 I am thrilled that Harts Local Grocers has partnered with my brand to help raise awareness for gluten free living and providing quality gluten free goodness to Rochester.

The public is invited to my 2nd Saturday Pop Up on Saturday February 11th from 2 to 4 pm at Harts Local Grocers, located at 10 Winthrop Street. Part of the meet and greet will be live streamed on the gluten free chef Facebook page, https://www.facebook.com/ceaton85/.

For more information about Harts Local Grocers, visit www.hartslocalgrocers.com. For more information about The Gluten Free Chef, visit www.theglutenfreechefblog.com.

 

 

Weekend Roundup: Chronic Pain Ambassador and Advocacy Summit and Retreat In Maine| Living with Fibromyalgia

I am truly at a loss for words as I sit before my screen and type this post. My heart is so full of love, life, gratitude, and happiness. Since last Thursday, I was in the company of true angels, chronic pain warriors together in pnce place share, love, hope, peace, advice, and gratitude for the efforts of the US Pain Foundation to bring us all together for the 3rd Annual Pain Ambassadors Advocacy Summit.

We were accommodated at the gorgeous University of New England campus in Biddeford, Maine; surrounded by beaches and water that was crystal blue. This all expense paid moment was literally like no experience I have ever had. Everything was accounted for and we were encouraged to be kind to ourselves every step of the way. How amazing! I’ve lived with invisible chronic pain for over seven years now and never have I been in the company of 50 + people that fully understand what I go through each and every day. This alone is enough to make me cry tears of joy, but US Pain gave us even more. Friday and Saturday we were educated by leading experts in the field of pain education, researchers, and warriors that give their real life stories and testimony of triumph, perseverance, positivity, and endurance. We were taught about advocacy at the local, state, and national level. How to get congress to hear our collective voices, to get better treatment, better care, and for professionals to understand what we go through day in and day out. We met Senators, scientists, a beauty queen and each other.

The warriors was the best part of the entire experience. The people connections that I made in such a short time are truly priceless. Strong bonds were formed. Deep alliances made to work together in the world of pain awareness. I wasn’t sure what to expect and now I declare that the entire experience was truly one of the best of my life thus far.

I have to give a huge  thank you to Paul Gileno, Shaina Smith, Casey Cashman and Lori Monaco for organizing and managing such an organized and fulfilling weekend. Each of these people live with chronic pain themselves yet each one of them was selfless and fearless in their determination to make sure that each one of us was cared for and having an awesome time. The most important fact that was reiterated throughout the entire program is that we matter; #PeopleWithPainMatter. Every single one of us. We are more than stats and stigma. More than medications. More than prescriptions. We are everyday people fighting an invisible battle. Our voices will be heard.

Check out the photos of our time together below:

 

Roc! Women In Wellness Campaign | Summer 2016 The Rochester Gluten Free Guide

The Summer 2016 issue of “the guide” is fast approaching and to celebrate this very special Feature Issue we are calling all Rochesterians to nominate their favorite Roc! Woman That Rocs In Health and Wellness

Nominate your favorite Roc! Woman That Rocs In Health and Wellness

 

What is this campaign all about?

This campaign is all about celebrating and spotlighting all the ROC! Women doing amazing things in the arenas of health & wellness in our communities.

How do I nominate a Roc! Woman?

Simply complete the form below and tell us in 20 words or less why your nominee Rocs! in health & wellness.

Who can I nominate?

Any woman, women, team, group or company run/owned by women that’s rooted in wellness.

What do you mean by wellness?

Wellness according to us (the editors) is any profession, organization, project or endeavor that inspires and activates the mind, body, an/or the soul. Wellness speaks to services, businesses and persons that exist with a purpose/mission to motivate people and the community to live their best self.

How long do I have to submit a nomination?

We are accepting nominations through May 22, 2016 at 11:59 PM EST only through this form found on this webpage.

Will my identity be published?

Those that submit nominations will be identified by first and last name initial only.

What happens after I nominate a Roc! Woman?

Our editorial team will send you an email thanking you for your nomination. We will then request the contact information of your nominee so that we can reach out to them and request a HQ photo. Your identity will not be revealed in this process.

All nominees will be listed in the Summer 2016 issue along with the initials of their nominator (is this a word?) as well as the quote shared about them.

What if I have more than 20 words to share?

Hopefully you can articulate the awesomeness of your Roc! Woman in less than 20 words. In an effort to fit in as many women as we can in this feature issue, all submissions will be edited to 20 words or less.

What if I have more questions?

By all means email our fearless Editor in Chief, Calvin at asktheglutenfreechef@gmail.com.

summer cover

Cooking & Eating Healthy with Phil | Restaurant Review

Since founding this website nearly four years ago, I’ve had the pleasure of meeting some truly A+mazing and wonderful people. I’ve also encountered my fair share of “party poopers” but the good folk far outweigh the bad. No person has embodied this sentiment more than Philomina U. Emeka-Iheukwa. Continue reading

Introducing…The Rochester Gluten Free Guide

This is most likely (actually) the worst kept special announcement I’ve ever posted on the site. I am just bubbling over with excitement and anticipation to officially announce our first ever “gluten free quarterly magazine”.

The Rochester Gluten Free Food Guide is Rochester’s first ever print & online quarterly publication dedicated to the celiac community and those living a gluten free lifestyle. Born literally from this blog; this “magazine” is so much more than what you are used to from a traditional magazine or newspaper.

The Rochester Gluten Free Food Guide is a completely interactive, ongoing online and social media experience designed to connect Upstate New York’s growing gluten free population with a consortium of small businesses, entrepreneurs, and every day people concerned with their health, well being, and wellness. The mission is to showcase Rochester’s holistic approach to gluten free living through articles, stories, spotlights, and recipes centered on the body, mind, and soul.

Living gluten free is more than food. It’s more than labels. It’s more than diet. It’s about the mind, the body, and the emotional well-being of all persons. All content, advertising, articles, tips, spotlights, showcases, and more will highlight the whole person first. We are all people (first) connected through experiences, illness, life, love, and so much more.

I am SUPER excited to finally bring this experience, a culmination of my life’s work to each and every one of you. Those in Rochester and beyond. Keep locked for more news and announcements as we approach the debut SPRING issue which is tentatively slated for a March 2016 online (3/1) and print (3/24) release.

Until then purchase your one year subscription (4 issues) for just $9.99 by clicking the button below

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Season II: Episode III| Love Yourself w/ Jessica Viscome by Ask The Gluten Free Chef | Free Listening on SoundCloud

Hello. I’m back. Yes after a few dormant week’s we are here with a new episode on this Black Friday. This episode is close to my heart since I am co-hosting with Jessica Viscome; friend, and lifestyle coach extraordinaire. Jessica was instrumental in helping me jump start my weight loss journey. Life brought us back together recently and I was elated when she agreed to join for me this  episode. Continue reading