The Inspired Living with Fibromyalgia community has won another award! The award today is from Fibro Fighterz and is called “The Fighterz Fierce and Fabulous Blogger Award.”
This incredibly special award is given to bloggers who’s writing is incredible and inspirational, educational and enlightening. To be given this award is so lovely and is a direct reflection of this wonderful community who support my efforts to share information about Fibromyalgia, while trying to provide inspiration and beauty!
Thank you Fibro Fighterz for this wonderfully meaningful award!
My Review of the Dear Fibromyalgia Facebook Page
Dear Fibromyalgia is a Facebook community devoted to educating, supporting, and sharing experiences on Fibromyalgia and comorbid conditions. Beth Biondolillo, Michelle Pena and April Zink provide a safe place for those struggling with Fibro to connect and learn.
Their hip approach to dealing with Fibro is unparalleled among Fibro Facebook pages. The primary emphasis is on coping with the day to day problems faced by people living with chronic illnesses. Beth hones in where invisible illness genuinely hurts – focusing on the real problems and real feelings of Fibromyalgia sufferers.ia and comorbid conditions. Beth Biondolillo, Michelle Pena and April Zink provide a safe place for those struggling with Fibro to connect and learn.
Typical posts include member questions (with answers), articles on Fibro, and so much more. They even share some things from Inspired Living with Fibromyalgia!
My favorite part of the page is the use of edgy, unique, and stunning graphics combined with deep, sensitive thoughts that so clearly reflect the deepest, oftentimes hidden, feelings of those fighting Fibromyalgia and other chronic illnesses.
These beautiful graphics capture the myriad of feelings those of us with Fibro face. From laughter to tears, from silence to yelling, from anger to acceptance, these ladies find a way to share the gamut of emotions we face while offering ways to cope with day to day living with chronic illness.
Dear Fibromyalgia is much like my favorite coffee shop; warm, inviting, a little dark, and the perfect place to rest for a bit and simply enjoy.
This page provides comfort and companionship to online readers through a discussion of everyday topics that will be familiar to those who live with chronic invisible illnesses.
This is truly a fantastic Facebook page that hones in where invisible illness genuinely hurts and focuses on the real problems and real feelings of Fibromyalgia sufferers.
Getting to know the Ladies behind Dear Fibromyalgia
When Emily contacted me and asked to write about why I started Dear Fibromyalgia, a million reasons went through my mind.
The night I decided to create the page I was in bed, fighting a fibro-flare, and just days away from my disability hearing. My life was literally hanging by a thread as I’d lost everything or was going to lose even more if I didn’t receive a favorable decision. Like they say, “your life can change in the blink of an eye” and that’s exactly what happened to me.
I woke up one morning with what I thought was the flu. Little did I know my life was never going to be the same.
My future career as a nurse had ended, and I knew I’d never be able to work again having finally been diagnosed with Fibromyalgia, Sjogren’s Syndrome, CFS/ME, Hashimoto’s Thyroiditis, severe MCS, arthritis, DDD, bulging lumbar discs, depression, and anxiety. I needed an outlet for not only my knowledge, but also my creativity and the need to help others.
Growing up I remember the “Dear Abby” columns in the newspaper, so that’s how I named my page. I wanted people to be able to write in with their problems and concerns and, in return, receive medically sound advice, personal
support, and encouraging words; something I wasn’t always finding on Facebook. Dear Fibromyalgia’s audience
I have since relocated up to beautiful Saint Augustine, Florida, to be near the beach (my sanctuary) and have access to better health care and alternative therapies.quickly grew with regular followers much to my delight and surprise!
When people are diagnosed with chronic illness they go through stages of grief. I want to help people reach the stage of acceptance and realize that there is life after a diagnosis of Fibro; it’s just a different life. We’re now in our 8th month since start-up, and I hope to continue to grow, spread awareness, and help those who are suffering from this mysterious, unpredictable, and debilitating disease and its comorbid illnesses.
In June, I discovered Dear Fibromyalgia. I wanted to learn more about my illness. When looking at all the FB pages this one stood out to me. There was a lot of medical information, questions being answered, everyone was welcomed to the page and of course beautiful graphics.
One day I asked for just simple support as I was going through some pretty hard stuff on top of my illness. After getting great responses from other people on the page and personal support from Beth I was hooked. When I was cruising my FB news feed, I would see a funny or beautiful graphic that I could relate to.
So I started sending them to Beth. Well I never stopped. Beth would post every single one I would send her and she encouraged me every time I did. We were only
at about 2000 likes when I told her “you know I really love being a part of the page like this. If you ever need some help please let me know”
I self-assigned the days in which I would run the page to help her get some “me” time. I also would check on the page and her daily to see if there was anything I could do to help.I didn’t realize that she was looking for another admin. Shortly thereafter we both agreed and I became an admin. I started making my own graphics basically just pouring my heart out into them.
One thing about pouring and opening your heart up to something like this page and the community of people is that it becomes a part of you.
I was first diagnosed with Fibromyalgia in 2009. I had heard of the disease, but did not know anyone who had it. I was a deputy program manager in charge of 25 team members. My career was on the rise, until this disease brought me to a complete stop. I ended up having to quit my job because my brain could no longer function. I went into a deeper depression as I realized we would lose our house.
I found Dear Fibromyalgia at the end of summer 2013. I cried when I found their page. To find out that you aren’t crazy and that there are other people who have or are going through the same thing was wonderful.
The graphics drew me in, but the love, support and camaraderie made it my home. I now have a place that I can go to where I am not judged, criticized, or ignored. Now I help make some of the graphics when I can, and it helps me to feel more alive.
People don’t understand chronic pain and the effect it can have on people and their relationships. I am just glad I found Dear Fibromyalgia.
Please Visit the Facebook Page
All graphics in this post created by Dear Fibromyalgia and printed with permission.
copyright © 2013 Dear Fibromyalgia
Millions of people suffer with Fibromyalgia, a chronic pain syndrome that affects every facet of life including sleep, libido, brain function, daily tasks and so much more. Everything in life is more difficult with Fibro. But there are a wide variety of treatment options and the “SIMPLE AIDS” protocol discussed here helps to narrow down the key components to living a wonderful life with Fibromyalgia.
My goal is for each of us with Fibro to lead the most inspired life possible. In order to reach for our dreams, we need to treat the physical obstacles, which in this case is Fibro and the many symptoms that come with it.
This treatment plan works for me (with adjustments as needed) and it can work for you too. The key is finding what works for you and doing it!
When we have Fibro we are affected physically, mentally, and spiritually. The “Simple Aids” protocol for treating Fibromyalgia with style and grace focuses on meditation, inspiration, and openness for the mind,; diet, exercise, treatments, and supplements for the body; and energy, faith, determination, and hope for the spirit.
The one constant with Fibro is that it will change and it will affect everyone differently. The “Simple Aids” treatment allows for the individual adjustments we all need to make based on our symptoms, our reactions, what works for us and what doesn’t, what our dietary needs are, what our triggers are, and most importantly our individuality.
There is no “one way only” to treating Fibro, just as there is no cure. The path is uniquely individual for each of us, but this generalized treatment protocol for how I treat Fibro may help you focus on the things you need or want to, so that you can reach your fullest potential with Fibromyalgia.
S = Sleep
Get enough well-rested sleep, at least 6 to 8 hours a night. Without enough sleep, you will suffer more fatigue, brain fog, and pain. When you get enough sleep, your body can begin the process of healing itself as much as possible and assist you in reaching your optimal health more quickly by increasing energy levels and promoting genuine healing.
I = Inspiration
Find the good in your life and the world around you. Focus on maintaining the most positive attitude possible. In order to live life to the fullest with Fibro, you need to get your mind in the right place so your body can begin to follow. Look for things in your life, or in books, or online to inspire you or at least make you think of something other than your symptoms.
M = Meditation
Learn to meditate or utilize relaxation techniques at least once a day. The mind-body connection is a huge factor in determining HOW each of us lives with Fibro. If our mindset is strong and positive, we will be able to manage the Fibro symptoms better and live a fuller life. The pain doesn’t go away; we can just manage it better!
P = People
Reach out to people. Get help when you need it. Look outside of yourself for answers. If you are in a flare consider seeing a gentle massage therapist or acupuncturist or chiropractor to help you move past the flare (even if it didn’t work in the past, try someone else or something else) and break the vicious cycle often caused by flares not being treated thereby generating more pain overall for even longer periods of time and increasing the frequency of flares. Create a network of wonderful people to help with your life including, medical professionals, family, support groups, and friends.
L = Live Life
Stop being afraid that you will cause yourself more pain by doing something. You will have pain whether you sit around or whether you do something, so choose to do something that brings you joy or allows you to accomplish a goal. Simply live your life and appreciate what you can do when you can. Forget excuses and focus on what you really want and start working towards it. A life unlived is not a life.
E = Exercise
Exercise as much as possible, but don’t cause yourself severe extra pain. The goal is to work your way up to at least 30 minutes a day. The exercise doesn’t have to be painful, but it does need to occur. When you first start you will most likely feel more pain, which is why I recommend starting with 5 minutes of light stretching or beginner yoga or water based exercises and allowing your body to let you know when to increase the time and/or the intensity of the exercise.
A = Acceptance
Learn to accept yourself and your body as they are, then work on improving. Avoid negative self-talk, try not to get frustrated or down on yourself if you are unable to do something. Learn to say no when necessary and accept that people may not like it, but you know what you need to do so that eventually the no’s will occur less frequently.
I = Identify
Identify what triggers make your symptoms worse like weather, food, smells, stress, certain types of exercise, and so forth. Identify possible hormone imbalances, nutritional deficiencies, thyroid or adrenal gland malfunction, infections, allergies, etc. (preferably with the help of a medical professional). When you know what triggers things and if you have an imbalance, THEN you can begin to eliminate or reduce the impact of them and replace your triggers with healthier options and address any medical imbalances or issues through supplements, changes to lifestyle, medications, etc.
D = Diet
Pay attention to your body and what you put in it. Eliminate foods that cause more inflammation or adverse reactions. Consider trying gluten free, sugar free, non-processed foods, etc. Try to eat healthy foods as much as possible. Consider trying an elimination diet or testing for food intolerances and/or allergies.
S = Supplements
Add in supplements as needed to help with symptoms, but be careful not to take too many! Common supplements used by Fibro patients include Vitamin B Complex , Magnesium, Vitamin A, Vitamin C, Vitamin D and/or fish oil, 5htp, Melatonin and more. Not everyone needs every supplement, so take cautiously and communicate with your medical professional about what will be helpful and what may not be. Also, some supplements interact with medications, so your doctor really needs to know if you’re considering a supplement, which one and why, so your medical team can help make sure supplements you may be considering are safe for you.
A sound sleep is essential for maintaining good health and emotional well-being. Studies indicate that 8 hours of sleep is essential for normal body functions. Practically, you should sleep at least 5 hours a day to keep yourself going with complete…
Over the past 20 years, scientists have been discovering that our brains have the ability to change in structural and functional ways over the course of our lifetimes. This is called neuroplasticity. Having a regular meditation practice not only makes…
Fibro Facts, our newest series on Inspired Living with Fibromyalgia, is a series of illustrated facts about Fibromyalgia. The goal is to help increase awareness and understanding for the millions of people living with Fibromyalgia throughout the world and to help people recently diagnosed learn a bit more about Fibromyalgia!
Fibro Fact #11: More Women than Men Diagnosed with Fibro
Although the exact reasons are still unclear, more women have Fibromyalgia than men. In fact, 80 to 90% of diagnosed cases of Fibromyalgia are women. According to the U.S. Centers for Disease Control and Prevention (CDC), seven times more women than men are diagnosed with Fibromyalgia.
There are many possible reasons for this ranging from cultural differences to physiological differences to genetic differences to hormonal differences. Much like finding the cause and cure for Fibromyalgia, there is a lot we simply don’t know and a lot of research that needs to be done to help figure it all out.
I believe that a lot more men than are diagnosed actually have Fibromyalgia. They may not be going to doctors, because they are “toughing it out,” or they may be belittling the pain or the symptoms may just show up differently. Men may be more likely to keep their symptoms to themselves and less likely to keep looking for answers when told “it is in all in their minds.”
On the other hand, women tend to be more likely to discuss all of their symptoms including issues with sexuality, menstrual pain, and more. Many women are intuitive about their bodies and know when something is wrong and they keep trying to get answers even when they’ve been told it “is all in their heads” or written off to “female hysteria.”
One thing to consider is that even though it appears so far that Fibromyalgia symptoms may be different for men than women, men often suffer just as much or more than women with them.
According to one study comparing men and women with Fibro, women were found to have less vitality and more fatigue than men, which may imply that strength and energy are more dwindled in women, whose metabolic processes can be more demanding or it may just mean that fibromyalgia symptoms affect the female body in a different way than the male body.
In the same study, fibromyalgia was found to create more physical impairments in the men compared to the women. The overall impact of the condition was also harder on the men. Another study, found that men diagnosed with Fibromyalgia had more impact of the disease and a worse perception of their health.
The truth is Fibromyalgia is difficult for everyone who has it, whether it is a man or woman or a teenager or a child. I would like to figure out why more women a diagnosed than men, because it may be a key to understanding Fibromyalgia even better. That said, men or women, it doesn’t matter in the long run. We need a cure for everyone affected!
1. Aparicio V, et al. Am J Men’s Health [epub] Apr 11, 2012
2. Ruiz-Perez I, et al. Rev Clin Esp 207:433-9, 2007
The launch of Inspired Living with Fibromyalgia’s new “Fibro Living” digital magazine is already a wonderful success.
So far, email followers, contributors, and Facebook followers have had a chance to see the new magazine and the response is overwhelmingly positive. And now…
It’s your chance to read the magazine for FREE.
Click the link above to read the first issue or click here.
Here are some comments from
people who have already had a chance to see the magazine:
“great job! Your magazine looks beautiful” – Beverly
“Absolutely wonderful, thank you for creating this!!!” – Larenda
“Loved the magazine! The vitamin D information is so true…” -Linda
Thanks, looks fantastic, just shared to a friend..” -Chris
“very nice !! tart cherries was one of the first things I ever heard about when I was first diagnosed!” – Fibro Music (Living in my world)
“Great magazine!” -Glenna
“What a great magazine! And thank you for writing about HealClick.” – Joey
“I’m just reading through the whole magazine and you did a FANTASTIC job, Emily!! It looks great and the articles are all wonderful! Thanks so very much for all of your hard work!! You totally ROCK!” – Beth
Consider Signing Up for the Monthly Newsletter Sent via E-mail
If you want to make sure you don’t miss an issue, please sign up for my Monthly (well, it hasn’t been monthly -more like once in a blue moon, but it will be monthly) Newsletter and be among the privileged people who get to see the magazine first!
The magazine will be coming out every two months and the newsletter once a month-ish,so I don’t send a lot of e-mails out. I also don’t spam or sell names on the list or any of that nonsense. That is just plain wrong!
If you’d like to sign up for the e-mail list, please click here.
Today is a special, beautiful, and amazing day. After having our newsletter for Inspired Living with Fibromyalgia on hiatus for a year, I finally sent a new one out – announcing the launch of my new digital magazine called Fibro Living.
I’ve been finding the direction I feel is going to work the best for myself and for our wonderful community. As a result, there are many changes coming this year.
I will be averaging at least one post a week on the blog, daily posts on the Facebook page, daily pins to the Pinterest boards, monthly video posts, monthly newsletter, and bimonthly (every two months) digital magazines. I’m also exploring some options to start offering teleseminars to provide information and inspiration to help ensure each of us has the most Inspired Life possible, despite having a chronic illness!
On top of all of this, I have two books coming out this year. One is a children’s book about how to explain the limits of invisible illness to others geared for children under the age of 12. The other book is a 30 day approach to coping better with chronic pain.
I’m also participating in a variety of challenges and groups to learn more and better ways to reach our community and others who need help. Some fun news is that we actually won the first challenge I participated in for a few weeks this January. It was a Facebook Fan Page Challenge offered by Sue and Dan Worthington at Get Social for Business to learn how to setup your Facebook page better and grow your community. Inspired Living with Fibromyalgia had the most people join our community during the two week time period of the challenge. Mostly, we won because of the community members like you, who shared and liked posts and helped get the word out!
All of these exciting ventures and more are coming your way this year. As with anyone with Fibro, my body may throw some curveballs and it may take longer than expected for some things to get done, but they are going to happen this year. An example of curveballs in the plan is this newsletter and the digital magazine. I originally planned to finish them in December of 2013 and send it out to you in January 2014, BUT the holidays took a lot out of my energy levels and then at the end of December I was in a car accident! Curve balls I tell ya…
With all of these new and exciting things coming for our community at Inspired Living with Fibromyalgia, I highly recommend getting connected with the community in as many ways as possible (or that interest you). We can be found on Facebook, Twitter, LinkedIn, Bloglovin,Pinterest,Networked Blogs, and the Inspired Living with Fibromyalgia Blog. Don’t miss any of the new and wonderful things heading our way!
Watch out for curve balls and hang onto your hats, this year is going to be very busy and very special for Inspired Living with Fibromyalgia!
Everyone wants to be happy right? Each of us have our own ideas about what happiness is, what it means, what it looks like for ourselves, but ultimately we all WANT to be happy. Happiness is a bit esoteric and magical, oftentimes in a special realm where we can almost grasp it and then it flits away. Until, we learn that happiness is acceptance and appreciation for our lives just the way they are, while actively becoming who we want to be and making our lives the way we want them.
So how does the “Science of Happiness” help? Well, this super cool infographic gives an interesting glimpse at the biological factors that lead to happiness. Every part of our lives can be a factor, from where we live, from what we eat, from the temperature, from hundreds to thousands of factors that help contribute to how our brain works to create our moods.
I believe that understanding these factors and implementing the ones that make sense to you and are realistic can eventually help in allowing each of us to achieve a lifetime of happiness. For the record, I’m probably not going to relocate to Mexico or Nigeria purely to seek happiness, but I might visit!
Graphic by WebpageFX
Inspirational Fibro Stories is a new series by Inspired Living with Fibromyalgia that focuses on sharing the inspirational stories and moments both big and small that our members have lived and shared to help bring hope and inspiration to each of us. Do you have an inspiring story to share with us?
The first inspirational story is about our ILwF member Jenn M, who chose to share her story through our Facebook page. I hope you all enjoy getting to know our members through inspirational stories!
Follow Your Heart:
How Fibromyalgia got me on the right path
Author Jenn M.
I would consider fibromyalgia as what many teenagers call a “frenemy”: an enemy because of the pain, fatigue, and other symptoms it inflicts on me…and (believe it or not) a friend because it taught me that following my heart breeds the most happiness.
It mostly began when I was laid off from my school year job. During the summer, I had more time on my hands. Therefore, I wanted to be able to fill up my time with things that I truly enjoy. I picked up crocheting again; however, I was just crocheting scrap pieces. I didn’t know what I was making; I just liked the act of engaging in single crochet.
However, my crocheting went from plain boring to interesting when my supervisor at the place I volunteer at suggested to me that I learn some new methods of crocheting (such as double-crochet and making granny squares). I can thank YouTube for being my teacher because the moment I watched the tutorials, I learned how to make various different things. Before I knew it, I was inspired to open up an online shop (My first one was “Hooked on Creativity”. When I moved it to Etsy, I renamed it “Jenny Square Crochet”). I’m only beginning, but I have made a few successful sales. Some of the items I make are pocket pillows, hats, scarves, mittens, and plush Valentine hearts.
Not only has fibro led me to opening an Etsy shop, but it also inspired me to create a blog. This all began during Februrary when I first discovered that I have Fibromyalgia. I typed in the phrase “Inspiring stories and fibromyalgia” on Google, and that was when I was led to the blog “Inspired Living with Fibromyalgia”. This blog was truly a heaven-sent to me. Just reading about how you can find the blessings out of a difficult situation made me feel good despite being in a lot of pain. I wanted to share this positivity with other people as well.
During August of 2013 (after doing some research on how to blog), I finally took action and called my blog “My Fibrotastic Life!” I blogged about various things, but they usually surrounded fibro and being a living example of “having a good quality of life despite having this condition.” On WordPress, I have met a lot of people from all over the world who have fibro and chronic fatigue syndrome, and have established friendships with many of them. During my hard times, they have been there for me virtually. I couldn’t have asked for a better support group!
It is now January of 2014 and my blog is a great success. I have over 600 followers. Plus, I have a Facebook page for my blog where people can read my blog posts through Facebook.
If you have a dream that you want to follow, don’t let your health stop you. As whoever said, “When there’s a will, there’s a way.” Maybe you can’t climb Mount Everest or swim across the ocean…but there’s always other ways there your dreams and desires can come through. I may not be able to hold a full-time job or be able to buy a big house, but at least I’m following my heart and doing things that I truly enjoy…things which I thought I would never be able to do in this lifetime.
If you are interested in checking out my Facebook pages for my blog as well as my store, you can click on the links below:
“My Fibrotastic Life!” – https://www.facebook.com/pages/My-Fibrotastic-Life/1411358239107328
“Jenny Square Crochet” -https://www.facebook.com/jennysquarecrochet?ref=hl
Etsy Shop - http://www.etsy.com/shop/JennySquareCrochet