Showing posts with label fibro bloggers. Show all posts
Showing posts with label fibro bloggers. Show all posts


Fibromyalgia stories: my diagnosis, by people living with fibromyalgia

I find it fascinating reading how people received their diagnosis of fibromyalgia and thought you might too so I am sharing many of them here from the fibro bloggers in our Directory. 

diagnosis stories, by people living with fibromyalgia

I have noticed a few common threads in these stories - many of us went to quite a few doctors before we received a diagnosis, many of us had to keep pushing to find out what was wrong, many of us found our symptoms were not taken seriously or took years to diagnose.


'It took years for me to get a diagnosis … and I had to do it on my own.
Learning to become my own advocate, I finally discovered what was wrong. Of course, my symptoms were devastating. I felt like an 80-year-old trapped in the body of someone who wasn’t yet 40.' ~ Sue from Rebuilding Wellness.


'Finally, they gave me a diagnosis of exclusion, something called Fibromyalgia, because their diagnostics are not sophisticated enough yet to source the true cause of the problem. They told me it is not terminal, but there are limited ways to treat the burning fire inside my muscles that debilitate me.' Leah from Chronicles of FIBRO


'A visit to the Neurologist resulted in a bunch of tests but they couldn’t find any reason for the symptoms. He sent me to a couple of other specialists and they couldn’t find anything either. Eventually, through research of my own and pushing to see a Rheumatologist, I received a diagnosis of Fibromyalgia.' ~ Julie from Counting My Spoons


'The rheumatologist was the first person who looked at me and said, “something is wrong, I can tell.” But all my labs came back fine, as always. So she diagnosed me with fibromyalgia because I did have all the tender points required to meet the diagnoses (and more). At the time, I didn’t really believe in fibro, not that I thought people were faking, more like it was a diagnosis you get when the doctor has no clue what is wrong. I fought the diagnosis for a long time.' ~ Shelley from Chronic Mom


'In July 2009, I finally got to meet with a Rheumatologist, Dr van Zyl at Unitas Hospital. Within 10 minutes, he diagnosed me with severe Fibromyalgia! I was not crazy, and it was not all in my head! Finally, someone that believed and understood what I was going through.' ~ Angelique Gilchrist from Fibro Ramblings.


'The second rheumatologist at 20 was the one who diagnosed me with fibromyalgia. By then I had a family history with it as well as my father had been diagnosed. At this time the tender point test was still something they did. And I had a whole lot of pain in those spots for sure.' ~ Nikki Albert from Brainless Blogger.


'The symptoms came on gradually, starting with back pain, infections, shoulder pain, insomnia – and finally a referral to a pain clinic where I was told I had a chronic, incurable illness. I left school and spent the next year in a state of shock.' ~ Katarina from Skillfully Well and Painfully Aware.


'Fibromyalgia was a diagnosis I received around the age of 27. Like a lot of people with this condition I was ill for a very long time before I was considered to have something more going on than just being stressed out. My initial symptoms were dismissed on a regular basis by health professionals who believed I was simply burning out from work, but I was becoming more and more unwell. So unwell in fact I became like someone in my 80s and not my 20s. It affected my ability to work, to socialise, in fact my ability to do anything.

After much back and forth with the doctor and referrals to the wrong clinics, I was eventually diagnosed with Fibro by a Rheumatologist and discharged from their care the very same day.' ~ Sarah at Me, Myself, and Chronic Illness Blog


'From my childhood years up until early twenties I went from doctor to doctor undergoing laborious blood tests of all kinds to rule many illnesses.

“She just needs exercise and vitamins” was a common response from the clueless doctors.

After the familiar, stressful blood tests again doctors in NYC diagnosed me with having a connective tissue disease, but rheumatologists in London disagreed and named the culprit fibromyalgia. There you go, fm diagnosis in its simplest form!' ~ Alisha at The Invisible F.


Fibromyalgia diagnosis stories


The Ultimate Fibromyalgia Pinterest Directory 2023

Welcome to the Fibro PINTEREST Directory, 2023 version  - a directory of people who PIN about fibromyalgia. Get on board and connect with the growing community on Pinterest.

Please add your Pinterest URL here and follow some of the other fibromyalgia pinners.

Fibromyalgia Pinterest Directory 2023

Fibromyalgia PINTEREST Directory 2023


Moderate Feel Good Exercises for Fibromyalgia Weight Loss

My name is Suzanne and I'd like to share with you my journey with fibromyalgia and how exercising both helped and hurt my chronic condition, which led to an amazing discovery! If you've ever felt fatter, more tired, more inflamed and had more pain during the times you exercised the most, my story and passion project will interest you for sure. 

Feel Good Exercises for Fibromyalgia Weight Loss

I was a trained fitness instructor and personal trainer and have worked in the industry for over 25 years. Like everybody else in the industry I got caught up with the idea that high intensity training and other super challenging workouts were the only way to lose weight and shape up. So I pushed and pushed myself - I mean, "no pain, no gain," right? Well, not for me. The more I pushed, the worse I felt - The symptoms of fibromyalgia were beginning to bloom (actually they had been doing so for a while), I just hadn't realized it yet. 

My Experience With Fibromyalgia

One day I was teaching a one hour long cardio kickboxing class and afterwards I became so dizzy I could barely stand up straight. I didn't want to embarrass myself in front of the class so I just propped my self up against a wall and played it cool with everyone. But in reality, I could barely catch my breath and thought I was going to pass out. My legs felt super heavy like cement. This was scary - I knew something had to change. For years I forced myself to fight through this kind of pain and fatigue, fooling myself that the other instructors were doing the same thing, when in reality, they were not. The way my body reacted to physical activity was unique and I needed to respect that... 

Over the next few years my pain and fatigue severely increased. There was a point where I could barely even walk and that was so depressing because I had previously lived such an active lifestyle. Like most of us, I started to investigate via the standard health care provider options, including a physical exam, seeing multiple specialists, getting all sorts of blood tests, etc. and the general consensus was that, yes I most likely had fibromyalgia and/or chronic fatigue syndrome. Of course, my next question was, "what is the cause of fibromyalgia?" I'm not going to say I was able to find what was the cause, but I did discover what was a major contributor for me: High Intensity Training and similar types of exercising (which is what everyone seems to be doing these days). So what I was doing to improve my health, was the very thing making my fibromyalgia symptoms worse! 

What's crazy about all this is that even though I had plenty of fibromyalgia pain and fatigue, with all the exercising I was doing, at least I should have been looking good, right? Wrong! Well, don't ask my husband - he always says I look great, but personally, I felt like I had excess weight around my belly, my muscle mass was decreasing, and I just felt puffy and inflamed. This is when I started the dreaded yoyo phase... 

What's the yoyo phase? On days you feel bad, you limit your exercising to a gentle stretch, but after a few days or weeks you start feeling better so what do you do next? You guessed it, you go right back to trying a high intensity or strenuous workout. And consistently, I would crash after that. I was in an endless cycle, and to be honest, my health was on the decline. I knew that a total lack of exercise was not healthy either. What I really needed were exercises that were right in the sweet spot - not too light and not too intense. I looked all over the internet to find workouts like these, but they just didn't exist. All I could find were two extremes: too easy or outdated routines that didn't get me any results, or overly intense routines that were just too much for me to handle.

What I Did That Helped

I started experimenting with creating my own workouts using unique combinations of exercises and varying levels of range of motion and intensity. After many months of trial and error, I found a combination that gave me consistent results. I was feeling stronger, leaner, had more energy and less pain with half the effort. It was crazy to be able to workout everyday without crashing. And those annoying side effects like inflammation and stubborn belly fat were disappearing!

I wasn't finished with the yoyo stage yet, however. After many months of working out in this new way I started feeling so good, I thought - "OK, I'm better now so bring on the higher intensity workouts and heavy weights!" You know what happened next. Widespread pain and exhaustion, welcome back! Honestly, I'm glad I went through that phase because it taught me that treatment of fibromyalgia and similar conditions need to be treated in a long term manner. Most people don't just fix it and never have to think about it again, but when they find something effective for them, it's a good idea to stick with it. And that's what has been totally true for me. Mild or Medium intensity exercising, performed effectively, is what my body requires to stay fit and lower pain levels... and I'm sticking with it!

How I Help Others Today

As a fitness instructor, I love to help others with their goals and I tried sharing these workouts on YouTube. The feedback was incredible! Comment after comment started flowing in with women sharing their experiences about major weight loss (10, 20, 30 Lbs. and more), as well as significant improvements to their chronic pain conditions, mental health and their overall quality of life! They were doing things they never thought were possible before and now they had real hope! It truly touched my heart that I could help thousands of people by sharing these workouts online. And so I kept at it and have developed a unique method to help our community of fibromyalgia warriors to effectively lose weight and shape up, without causing that dreaded crash, afterwards. This is what my passion project, Cocolime Fitness, is all about. 

Over the past several years I've created a wide variety of safe, effective workouts to help you on your fitness journey. I know how frustrating it is to have to search for exercises that are not too much and not too little, to help you get good results. So I've incorporated a little of everything to meet the various needs of our community. And, I'm still publishing new workouts monthly! 

Some of you may prefer to start out with simple stretching and honestly, you can accomplish a lot with that, including pain relief and increasing energy. 

If you like aerobic exercise, I have several cardio and dance routines including a special series called, MIIT (medium intensity interval training), which are cardio routines with fun, upbeat music, are non-repetitive and zero impact to give you a fantastic experience and results.

For my particular body, I need light weight training to get noticeable muscle growth. If you feel the same I have several workouts with weights that are either targeted to upper body, lower body, or abs and back, or a total body workout.

If you want to tone up without weights, I have an entire series of bodyweight only workouts. And I know many fibromyalgia patients prefer to not to have to get up and off the floor several times during a workout so I have ones that are All Standing and ones that are All Seated.

In my MITFIT 90 program I share what I've learned about making a positive lifestyle change and incorporating a healthy diet, which includes my personal recipes to help you find an allergy friendly, healthy meal that the whole family will enjoy. This 90 day fitness program will guide you every step of the way to make significant changes in your life. 

Where To Start

I know that sometimes just the thought of exercising can be overwhelming when you're dealing with the pain of fibromyalgia, sleep problems, chronic fatigue and other chronic pain disorders. So in addition to my blog articles and workout routines, I publish a simple newsletter called Tips, Treats & Tweets to share something positive and helpful to you each week. Fibromyalgia treatment starts with a positive outlook and to help, I warmly invite you to join the Cocolime Fitness community!

One of the most important things I've learned in this journey is to always "listen to your body." Regrettably, I didn't do this at first, but once I started doing so, little by little I found a form of physical therapy that truly helped me and many others to lose weight, get in shape and get back to being the people we once were, and after 8 years of exercising this way, I can honestly say, "I'm never going back!" 

Good Exercises for Fibromyalgia Weight Loss


Who to follow on twitter if you have fibromyalgia

Whether you have fibromyalgia, or a loved one who has, or you are looking for more information about this chronic pain condition following these accounts on twitter will help you. 

Who to follow on twitter if you have fibro

Of course all these suggestions are our wonderful fibro bloggers who are in Fibro Blogger Directory. They live with fibromyalgia and they blog about it. 

To be in this list of Who To Follow on Twitter they need to tweet regularly and tweet mostly, or more than half the time, about fibro and chronic illness related topics.

This list is in no particular order. 

Who To Follow on Twitter if you have Fibromyalgia. #WhoToFollow

Once Upon A Fog Blog, advice from a purple ๐Ÿฆ‹ @rachelbarclift "Welcome! I'm a wife, writer and artist. My posts help to spread chronic illness, Fibromyalgia and mental health awareness." #fibroblogger #author #illustrator

Beyond Fibromyalgia @BeyondFibro Nurture, Balance, Integrate ❤ Body, Heart, Mind and Spirit

Melinda @LookingLight Life Lover, #Photographer, #Lyme, #Spoonie, #ChronicPain, #Chronic Illness, #MentalHealth #Advocate, #LifeStyle Blogger, #Fibromyalgia & #BookReviews

Cynthia Covert, The Disabled Diva @TheDisabledDiva Journaling through life with multiple chronic conditions and sharing passion, tips, and journal prompts with you!

InvisiblyMe @invisiblymeblog Blogger & Freelance Writer Living With Chronic Illness & Pain. InvisiblyMe : Health, Lifestyle, Wellbeing, Leisure, Finances, News & Reviews.

Katarina @annakatarinaz Blogger, health writer, aspiring mystery novelist | wife, cat slave| history nerd, mystery reader, nature photographer|

๐•ธ๐–”๐–—๐–“๐–Ž๐–“๐–Œ ๐•ฎ๐–š๐–•๐–•๐–†๐–˜ ๐–‚๐–Ž๐–™๐– ๐•ฒ๐–‘๐–Š๐–“๐ฒ๐–˜ @GlenysRHicks Australian great-grandma. Feeling the Hope of which we speak: #Jesus #Rapture #dispensational #Maranatha #blog #ProLife #Messianic

SarahW @sswarbo A slow-paced life, but finding joy every day. Always tired, almost always in pain. Loves writing & nature. #fibrowarrior #spoonies #chronicillness

๐Ÿ‘ฃHelen's Journey๐Ÿ‘ฃ (Blogger & Poet๐Ÿ“) @helens_journey GreenLiving๐Ÿ’š Encouragement๐Ÿ’†๐Ÿผ‍♀ & Poetry BLOG. "Follow my spoonie footsteps exploring more NATURAL ways to Life/Health & Wellbeing. " FIBROMYALGIA Fighter ๐Ÿ’œ✝

Carrie Kellenberger - @globetrotteri ♿️ I write so you can better understand #axSpA #Spondylitis #Fibromyalgia #ChronicPain #MECFS #Arthritis ๐ŸŒ Former world traveler ➡️ Veteran patient advocate

Me, Myself and Chronic Illness Blog @me_illness #chronicillness #introvert - Chronic illness blogger and writer who talks about personal experience of Fibro, M.E, UCTD, Tourette's, PCOS and mental health.

BettinaBier @BettinaBier Living with #Fibro | Enjoy the little things in life | Love to be creative | Love my dog ๐Ÿพ❤ | Germany, Cologne

Cynthia Baughman @photobaugh Strategy | Leadership | Technology | #Cybersecurity | #Fibromyalgia | Finding Inspiration in Everyday Life | CA girl living in TX

Alisha Nurse @AliApow Curry-loving writer & NHS comms professional. I blog about life with fibromyalgia and depression at

Melissa vs CFS/FMS @thefibromamaOn a mission to be as well as possible with fibromyalgia & chronic fatigue syndrome. I do yoga in bed & chairs -get your free GENTLE #yogaforfibromyalgia series

Dan Neuffer @cfsunravelled ME/CFS/Fibro Recoverer, Author and speaker helping people with #MECFS,#Fibro, #POTS #ChronicFatigue #CFIDS,#MCS,#Fibromyaligia see that RECOVERY IS POSSIBLE!

BloggerBarbara @BloggerBar Chronic back pain sufferer and keen freelance blogger. I love to write about #ChronicPain #BackPain,#Fibromyalgia, #Health, #AlternativeTherapies #cakes

Sue Ingebretson @SueInge Speaker & Holistic #Health Care #Coach Living Well with #Fibromyalgia. #Author of #1 Amazon #ChronicIllness best-sellers #FibroWHYalgia #GetBackintoWhack

Brandi Privitera @beingfibromom Brandi is a Navy veteran and work-from-home mom passionate about helping parents living with fibromyalgia better care for themselves and their families.

Hello Fibro Blog @FibroHello
The life of a 20 something living with fibromyalgia. 
England, United Kingdom

Fibro Bloggers @FibroBloggers connecting fibro bloggers, inspired by all the #fibro bloggers and their stories at #FibromyalgiaAwareness #FunnyFibro #FibroFriday

Not everyone in Fibro Blogger Directory is on twitter so you may like to see the full Directory of bloggers here. Also many of our bloggers are on facebook and you can find that list here.

Who to follow on twitter if you have fibro