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


Fibro Bloggers and their Stories - Katie from Pain FULLY Living

Fibro Bloggers and their Stories

Living FULLY Despite Pain - Katie Clark's Story
Katie Clark fibro blogger
Me portaging a canoe (only a few feet), during a week-long canoe trip at 
Algonquin Provincial Park, 2011. I celebrated my strength and 
the inevitable (or so I thought) pain that came with that.

I took the “no pain no gain” mantra as truth, so being pretty active, I was used to having pain somewhere in my body generally all the time. It wasn’t a worry. Pain just meant I was working my muscles, so I actually felt good to have pain. Silly me.

However, in my forties, more pronounced pain in unusual places began to crop up: the deep aching pain in my bladder radiating throughout my pelvic area, the sharp, hot pain under each armpit and at my inner knees, the mild, tight pain at my jawline. 

Now, in my fifties these spots of pain have multiplied so that I’m not exaggerating when I say that I have some level and type of pain everywhere in my body. These spots aren’t all lit up at the same time, thank goodness. They politely take turns as to which is intense and calls out for attention which has seemed to be fairly random as to why. Recently, I imagined a toddler having hold of my pain remote control just randomly pushing buttons. This is how it seems to be.

Noticing a Change in Pain
I began to take note of the changes in pain I was feeling. My friends and colleges started noticing, too. I began to massage myself-like constantly. I would catch them looking at me with concern. They didn’t mention it though, so it took a while to notice it myself.

I remember one trip my husband and I took to visit our good friends at their lake house in New Hampshire.  I had long been a yoga enthusiast, starting in my 30s, so car rides tended to find my legs crossed in lotus or stretching on the front dashboard.  My legs have always felt tight.  But this trip, my right calf was deeply aching.  I massaged and stretched and massaged some more.  By the time we drove the 15 hours to their place, I had actually made my calf swollen and bruised from the massaging.
chronic illness poem
After my diagnosis about 2 ½ years later (where more and more of this type of pain and my non-stop, nearly manic massaging of my arms and legs), I wrote the poem Kneading Need.

The next summer, following a very stressful school year, the pain came and stayed.  Along with that, the difficulty thinking clearly, stumbling over my words, utter exhaustion, and the feeling that everything was just too much for me to handle. I finally went to my new general practitioner, switching to him the year before because of our move to a rural town in Michigan. He was kind hearted and caring, but he didn’t know me.  I brought my husband with me so that he could verify that this wasn’t me. After some time and trying some things, more visits with the same complaints, and him doing thorough blood work, he concluded that I had Fibromyalgia. 

This wasn’t something I had ever heard about. However, once I told people around me, many mentioned those they knew with it: mothers, sisters, friends whose stories were scary sounding. As I began to research, I got really even more worried that this would be the end of my adventures, the end of my teaching, the end of my FULL life. Luckily, I kept researching, and with the help of my doctors, good Fibro Bloggers who shared facts and hope, and the support from my family and friends, I am seeing that I can live my life FULLY, albeit with pain.

It does look different. I did have to leave teaching. While I loved it, it demanded just too much of each day-literally 10 hours at a minimum between my hour commute, 7 hours with students, and the work put in beyond to grade, plan, prepare, and train. I couldn’t be the teacher I once was and take the time needed to take care of myself. I had also come to realize I had ignored my needs for most of my life. That had to change.

Since 12/7/2018, I have been doing just that. I’ve tried a lot of things, some have worked but much has not. I research, learning and sharing with my FMS people, and work on implementing those things that are helping. I still have pain- all over, all of the time. However, it’s brought me some new insights into myself and into the meaning of living a good life. I think I’m on the right path now.

I’m currently reading a book The Book of Joy written by Douglas Abrams from a week long visit with His Holiness the Dalai Lama and Archbishop Desmond Tutu. Much of it is speaking to me. Here is one quote that I believe with my whole heart as I am a living example:

I have become a more full and complex person living life with much more gratitude and authenticity due to the stress and opposition that Fibromyalgia has brought me. I believe that I would have been content continuing on as I was, ignoring much of myself and those around me had I not been forced to stop and in desperation, looked for how to make things better.

My Current Diagnoses:
Interstitial Cystitis (2000)-InterStim implant (after doing everything prior) & taking Prelief w/acidic foods when I have it

GERD (2010)-Nissen procedure (after years on medication)

Fibromyalgia (2018)-symptoms: ongoing roving pain-muscle & joint, foggy brain, difficulty finding words when speaking, glitches in memory, fatigue, weakness, pulsatile tinnitus

IBS (2020)-found this out after stopping all medications that could have been influencing this; I fluctuate from diarrhea to constipation and have for at least 20 years.

Things that are working for me:
  • Low Dose Naltrexone (Newest addition-55 days in. Started at 0.25mg and am now up to 2.5mg and still titrating up to find my best dosage amount). Sleeping pretty well without any other help; clear headed most days all day; less pain overall, more energy. My first post: Tentatively Ecstatic: My Experience with LDN Part 1 I plan to write Part two soon. 

  • CBD/THC 1:1 Oil- This didn’t seem to help with pain, but sure did help me sleep soundly. I was taking .25mg sublingually before bed. I stopped because the LDN seems to be helping with it and my GP expressed issues with it (even though I have a medical marijuana card and it’s now legalized even for recreation in MI). My post: Out of the Rabbit Hole: CBD/THC Oil for Fibromyalgia

  • Yoga and Breathwork: This is an ongoing, continuation practice of 20 years. However, I’m having to learn that my practice looks different now. I had always strived too much to get to that perfect form of a pose often injuring myself in the process. I’m doing much more Restorative, Yin, and slow yoga practices these days. 

  • Supplement: Magnesium Malate/B-12/E/D3

  • Prescription: Vyvanse (I was diagnosed with ADD one year before my FMS diagnosis; I do think that the ADD symptoms, though, are more connected to the FMS issues.) 

  • Hot pad, ice pad, epsom salt baths, and hot tub.

  • Massage: Professional myofascial release, myofacial release @home using foam roller and Yogu Massage Balls, and Rhenpho Massage Gun 

  • Gentle cardio: walks and swimming 

  • Diet: I haven’t made a ton of changes. This is an area where I really hate being deprived. I have given up on dairy. I eat way less gluten (doing a lot of substitutions). I intake food with high acid much, mostly because I hurt immediately after. I rarely drink carbonation and don’t drink much caffeine. I tend to lean vegan due to the no-dairy. However, I do eat some poultry, eggs, and fish. However, I just can’t cut out tomatoes.


Our newest fibro blogger members

 fibro blogger members
Let me introduce you to some of our wonderful members at Fibro Blogger Directory.
They all have fibromyalgia and they all blog about it but that is where the similarities stop...
For a start they live all over the world from Australia to America, England to South Africa. They have so many different interests:  naturopathy, teaching, family, religion, fitness, writing, and illustrating.
Let's get to know them a bit more.

fibro blogger directory newest members

From left to right, top to bottom we have Suzanne, Stacey, Melinda, Janet, Glenys, Katie, Angelique and Rachel.

Suzanne is a fitness instructor who runs Coco Lime Fitness where she blogs about fibromyalgia and staying fit, has videos, a work out channel and a total body fitness program. 

Stacey is a wife and mother to three adult children who blogs at Fighting With Fibro. Her blog's byline is Living With Purpose and she hopes to positively affect the lives of others who live with Fibro.

Melinda is an ambassador for the US Pain Foundation and blogs at Looking For The Light.  Melinda educates, advocates and informs about a variety of difficult issues including mental health and abuse. 

Janet is a naturopathic doctor who blogs at The Doctor's Note. She offers diet, exercise and other tips for coping with Fibromyalgia and also a free discovery session to see if natural therapies can help you.

Glenys is a home maker who is providing conversations for the lonely, chronically ill or disabled Christian woman at Morning Cuppas With Glenys

Katie is a teacher and writer who blogs at PainFULLY Living sharing her personal experiences with treatments and symptoms of Fibromyalgia. 

Angelique is a wife and mother who blogs at Fibro Ramblings. She is raising fibromyalgia awareness and co-ordinates Faces & Stories of Fibromyalgia telling the stories of many people who live with it.

Rachel is a graphic designer who blogs at Once Upon A Fog Blog and records video blogs about her life with fibromyalgia in Texas, USA. 


Fibro bloggers and their Stories - Glenys from Morning Cuppas With Glenys

Fibro bloggers and their Stories

This is the first in our series Fibro Bloggers and their Stories, where you can get to know more about our Fibro Blogger Directory members. 
This week's story is from Glenys, who lives in Australia and blogs at Morning Cuppas With Glenys where she shares her daily life as a christian woman living with fibromyalgia and other chronic illnesses. During my time reading her blog she has gone from travelling around in a RV to now living in a home. Here is what Glenys has to say...

I have been pretty much bedridden this last week. For the first time I feel a little life in me so I am going to try to catch up on a bit of housework. I am really concerned about doing too much and burning out again, inducing another fibromyalgia flare. So I have to consider that as I plan my return to domesticity. I don't want another setback that puts me to bed again. It's all about spoons!

The journey back to domesticity is not without peril. There is a fine line between adequate expenditure of energy and exhaustion. Exhaustion can sneak up on you and bite you on the heel when you least expect it. Each day is a challenge as you will see in reading this post.... this is a typical day in the life of a chronically ill wife.

You can be managing quite nicely, up to your chin in folding clean clothes on your bed, when suddenly you wake with a start to find that you have fallen asleep and dribbled all over your husbands' underpants and shirts. Or you can plunge your hand into a sink of the cold and slimy water for soaking dishes left over from yesterdays' dinner that were supposed to be done as soon as you got your second wind after cooking last night. Only the second wind didn't come: not even a breeze!

Vacuuming can take forever as you find that the bag needs emptying and you can't find a new one and as you search, you smell a rancid odour from the washer, where you find yesterdays' wash finished and patiently waiting to be hung out. The washer is reset to rinse the smelly load but you forget to look for the vacuum bag as you fret about how many spoons it will cost to hang the clothes out.

Starting to feel anxious and overwhelmed, you decide to have a cup of tea. A donut in the pantry calls your name and as you open the microwave to heat it, you are surprised by your bowl of porridge left there at 6 am when you got your husband's breakfast. Pulling a tissue out of the box, you have a little cry into your cup of tea as you munch your donut. You are hungry because you didn't actually eat breakfast after all.

Sick at heart and already feeling tired, you decide to just chuck the clothes in the dryer, soak the dishes in fresh hot soapy water for washing later on in the afternoon and you have a nap... after all, a nana nap will help your brain fog clear and you can catch up then. But the afternoon brings it own set of woes as you wake feeling worse. 

You consult your menu list only to find that even though you intended to get the meat out to defrost this morning, you had suddenly felt compelled to double check that you had taken your meds and then you forgot about the meat. With your confidence rattled, you wash the pans that are needed for tonight's cooking and resolve for the hundredth time today to do better.

Eventually the day draws to a close with the evenings' dishes soaking in the sink ready for that elusive second wind. And as you feed the cat and take your evening meds, you wonder if tomorrow will be any better...Lying in bed and in a funk bordering on depression, you start to pray for strength for the morrow and a restful nights' sleep. Only no thoughts come to pray with sense and you are swept into a fitful sleep on a long sighhhhh. 

So ends another day and domesticity is still far far away.

© Glenys Robyn Hicks

Glenys Robyn Hicks
Glenys Robyn Hicks

Her blog: Morning Cuppas With Glenys: Godly conversations for the lonely, chronically ill or disabled Christian woman.


Barbara McLullich at Back Pain Blog UK

fibro blogger Barbara McLullich at Back Pain Blog UK

Barbara has been blogging about her chronic pain story since 2008 at Back Pain Blog UK

Barbara shares her journey as a long time back pain sufferer who has fibromyalgia. After four major surgeries she found that writing helped her through the worst days. On her blog she reviews therapies, products and drugs that may help other chronic pain sufferers.  She is also an author of a book on alternative therapies for pain and a freelance writer. 
As a young adult with a spinal problem that left me in chronic pain, I decided I would like to help others who have had similar problems and my Back Pain Blog was born. I hope that some of my posts will help and support others in chronic pain.
Barbara writes about a wide range of ways to help chronic pain from flower therapies, to shoes to medications.

Some of her posts include:
You can connect with Barbara McLullich at her blog, and on her facebook page. She would love you to visit and leave a comment.


Katie Clark from Pain FULLY Living

Pain FULLY Living blog about fibromyalgia
Katie has been sharing her fibromyalgia story since June 2019 at her blog Pain FULLY Living -  Living Fully Despite Pain. 

Katie was a confident teacher of many years when Fibromyalgia hit.  She has now retired and has become a writer about fibromyalgia. Through her writing she shares her reflections and her growth. She is learning and trying new things and hopes to help others along their own fibro journey.
I feel that sharing my journey can give insight to others on their own, much like others have helped me. Also, blogging helps me to understand better how I’m feeling about things; writing helps me process. My posts serve as a bit of a timeline for me to remember where I’ve been in this process of healing and self-discovery.
Katie writes about her online and offline community, her daily struggles and blessings and the many interesting things she has investigated to help reduce her symptoms such as SAM-e, and Vyvanse, Medical Marijuana, and SOMA breathing. 

Some of her posts include:
You can connect with Katie Clark at her blog, and on her facebook page. She would love you to visit and leave a comment.


55 fantastic fibromyalgia blog names

    Fibromyalgia is a chronic condition of pain, and many other symptoms. Blogging when you have fibromyalgia has extra challenges, that other bloggers may not experience, such as tiredness, fatigue, mental fog, dizziness, and migraines. 

    These fibromyalgia blog names listed below are all existing blogs run by members of Fibro Blogger Directory and some of my best fibro friends. If you click on these links you can visit the individual blogs or you can see the complete list of members in the Directory here.  If you have a blog about this condition you may want to become a member of the Directory and you can apply here.  

    55 fantastic fibromyalgia blog names

    Fibro Files
    Felicia Fibro
    Rebuilding Wellness
    Infinite Daze
    Living with Fibromyalgia
    Counting Spoons
    Chronic Mom
    The Fibro Frog
    The Fibro Man
    Brainless Blogger
    Learning to Balance Life Changes
    my foggy brain
    Painfully Aware
    Being Fibro Mom
    Fibro Fantastic
    Illness to Wellness: A journey
    In Spite of My Illness
    Fed Up With Fatigue
    Blooming Mindfulness
    Living creatively with Fibro
    Living Extra-Ordinary
    Fibroworks/The Fibro-Fog Chronicles
    Living With Fibromyalgia
    Chronically Chloe
    Fibro Warriors ~ Living Life.
    Stronger than pain
    Melissa vs Fibromyalgia
    Reclaiming Hope
    Spoons & Sass
    The Invisible F
    Spending Spoons
    My Inspired Fibro Life
    Fibromyalgia Pain Cure
    By Star & By Sea fighting chronic illness one adventure at a time
    There Is Always Hope
    When Nothing Goes Right Go Left
    Living whole
    Invisibly Me
    Naturally Fibro
    The Last Days of Pompeii
    Hello Fibro
    Beyond Fibromyalgia
    Fibro Mom Blog
    The Scoop on Fibromyalgia and Chronic Illness
    Mandy and Michelle Just holding it together
    The Recovering Perfectionist
    Lap The Couch
    Looking For The Light


    Pamela Jessen from There Is Always Hope

    Pamela Jessen from There Is Always Hope
    This is Pamela Jessen from There Is Always Hope
    Pamela has been sharing her story since early 2016 at her blog There Is Always Hope - This is my life with Fibromyalgia, chronic pain, chronic fatigue and invisible illness. Besides Fibromyalgia, Pamela talks about her Osteoarthritis, Diffuse idiopathic skeletal hyperostosis (Dish), Hip Replacement, Trigeminal Neuralgia, Myofascial Pain, Diabetes Type 2 (on Insulin), Gastroparesis, Hypothyroidism and Bipolar Disorder. 

    Pamela is a wonderful advocate for showing that everyone can share their voice and raise the profile of these diseases.  She is a volunteer with Patient Voices Network - an organization in British Columbia that allows everyday people to have a voice in how healthcare is delivered in that area. She says:
    I want people to know they can have a say in BC's Health Care and that voice can be in any number of different ways. It's important for our voices to be heard and I love to talk about how that works! 
    Some of her posts include:
    You can connect with Pamela at her blog, and on her facebook page. She would love you to visit and leave a comment.


    Julie Ryan from Counting My Spoons

    Julie Ryan from Counting My Spoons

    Julie Ryan began her blog Counting My Spoons in 2010 when her journey with Fibromyalgia began. The title comes from the Spoon Theory written by Christine Miserandino that explains energy in terms of how many spoons we have on any given day. 

    These days Julie does not spend a lot of time counting her spoons as she has learned how to manage her symptoms and is helping others to do the same. Julie believes that we are all much more than our illnesses. (she lives with migraine, TMJ issues, endometriosis, a thyroid condition as well as fibromyalgia.) 
    I’ve learned how to manage my illness and I hope that I can help you do the same. 
    At the very least, I hope I can help you live an inspired life despite your chronic illness. Take a look at what’s helped me the most with managing my illness.
    Julie is quite a prolific writer who shares many helpful, informative posts at her blog including:
    You can keep up with her posts by subscribing to receive notification emails as they are posted. 

    You can also follow her on FacebookTwitter, and Pinterest.


    Terri Sutula from Reclaiming Hope

    Terri Sutula from Reclaiming Hope
    This is Terri Sutula from Reclaiming Hope 

    The byline on Terri's blog is Learning to Thrive, Not Just Survive with Fibromyalgia and she has been blogging about that very thing since January 2017. Terri is a very positive person who says that the HOPE in her blog's name stands for Healthy Diet, Optimism, Prayer and Meditation and Exercise.
    I had to stop living in the past and how “I used to be” and learn to live well today. It was time to reclaim my hope!  Yes, it’s true I may never be able to do some things I once did, but there are still plenty of things I CAN do, and one of those things is to learn to live well wherever I am in this journey.

    Terri's great attitude is felt all through her site and I think this is what has made it a very popular blog with lots of comments on every post as well as the fact that she creates interesting and well written posts. You WILL want to read:

    You can connect with Terri Sutula at her blog, and on her facebook page. She would love you to visit and leave a comment.


    Susan Pearson from Living creatively with Fibro

    Susan Pearson from Living creatively with Fibro

    This is a photo of  Susan Pearson from Living creatively with Fibro. 

    Susan lives in England, with her husband Michael, where she spends her spare time doing crafting and genealogy. She has been happily blogging, about Fibromyalgia, since June 2016 and often includes posts on how she adapts and manages her crafts so she can continue to do them with Fibromyalgia.

    If you have chronic pain and are a crafter you need to have a look at:
    Susan often tackles some difficult topics avoided by others in her posts including:
    Please welcome Susan to the Fibro Blogger Directory by visiting her blog, liking her facebook page,
    following her on Google + and  Pinterest, or chatting with her on twitter.


    Our newest fibro blogger is...

    Emma Sheridan 
    our newest fibro blogger Emma
    Emma lives in England and was diagnosed with Fibromyalgia in 2013 after having pain symptoms for many years. She started a facebook support group for people in Sheffield who have Fibromyalgia. She now has a blog called A Sheffield Fibromite where she shares her journey with Fibromyalgia and trying to live life positively with pain. 
    Please welcome our newest member by visiting her blog and connecting with her on twitter, facebook and instagram. Besides being a blogger Emma is an e-communications graduate, technical writer, mum, feminist and a metalhead who enjoys drinking tea and ale.


    Meet our newest member to Fibro Blogger Directory

    This is Sue who has had fibromyalgia since 2002 and has a wonderful website called Fibro Daze where she shares information for living well despite fibromyalgia. I feel like many of you will already know Sue as she has quite a following on facebook and links up often at Fibro Friday.

    Besides being a blogger, she is an animal lover, wife, mother of 5 and grandmother of 7.

    The goal of  her blog is to help and inspire others who have fibromyalgia in living a better life. She writes articles about self-care, lifestyle changes, emotional wellness and fibromyalgia symptoms in depth
    Here a few of her posts:
    Please visit her blog and welcome her to Fibro Blogger Directory.


    Welcome our newest member to Fibro Blogger Directory

    We have many new members here all arriving very soon. As a matter of fact I have been inundated with people wishing to be part of Fibro Blogger Directory, people wanting to tell and share their personal story on fibromyalgia, people wanting to share good and useful information about fibro.

    Our newest member is FibroWhat??? who I believe is our only member from New Zealand. Welcome and thank you for joining us - Haere mai a ka whakawhetai ki a koutou mo te hono a matou.
    Fibro What???

    "After years of trying to figure out what these symptoms were
    that were plaguing me, and not knowing where to go for answers,
    and after many, many visits to specialists and doctors
    I decided to start a blog to share whatever I could
    to help others that might come into the same situation."
    FibroWhat??? blogging since January 2015.

    Welcome our newest member to Fibro Blogger Directory


    First ever Fibro Friday up now

    fibro friday


    We are a tribe

    Have you heard of the idea of a blogging tribe? A tribe is a group of like-minded people and that is what Fibro Blogger Directory is all about.
    Having a blogging tribe takes the concept of a blogging community to another level so that it is more supportive, more personal, more of a community.

    There are lots of great people here on Fibro Blogger Directory and they all have a lot in common with you. Besides having fibromyalgia and blogging about it they are looking to get their posts read and shared too, just like you and me. Sharing cool blog posts is a great way to help each other, interact, feel good and spread the fibro message.

    So why not visit a few blogs on the Directory and if you find one you like share it through your social media. Do you have twitter,  facebook,  pinterest or tumblr? You can connect with us there.


    Sleep apnea and fibromyalgia

    Sleep Apnea in Fibromyalgia
    Sleep Apnea in Patients With Fibromyalgia: A Growing Concern

    Patients with fibromyalgia have a tenfold increase in sleep-disordered breathing, including obstructive sleep apnea. Proper diagnosis and treatment will improve health and quality of life for fibromyalgia patients. Read the full article at Valda Garner's blog In the Eye of a Storm


    Find out what other fibro bloggers are saying today

    Fibro bloggers

    Are you feeling the need to connect and find out what other fibro bloggers are blogging about? Just go to the Directory to choose from over 90 blogs.

    Too lazy to do that?
    Just click on the links below to see some recent posts by Fibro Blogger Directory members.


    And the winners are...

    The entries have been tallied and checked.

    To be winners in this, our first ever Fibro Blogger Directory contest, meant you read other fibro bloggers' posts and left comments on those blogs and of course that you recorded these comments here in our contest box.

    Thank you to everyone who entered our competition.

    Believe it or not there was a tie for 1st place and the most engaged bloggers, entering our competition, were Bonnie from My Ordinary Simple Fibro Life! (Yeah Right!) and Shelley from Chronic Mom.

    1. Bonnie from My Ordinary Simple Fibro Life! (Yeah Right!)
    and Shelley from Chronic Mom.
    2. Donna at Fibro Geek. 
    3. Kimberly at My Fibro Energy.


    Excited to announce a fibro bloggers competition

    connecting fibro bloggers
    Yes at Fibro Blogger Directory we are all about connecting fibro bloggers and helping others so we will be announcing a competition to do just that very the next couple of days...just finalising the prizes right now.
    So if you are blogging about fibromyalgia stay tuned.

    Have you checked out our Fibro Blogs of Note?

    In the side bar, at right, you will see our FIBRO BLOGS OF NOTE. These are great Fibro Bloggers who post regularly, visit other fibro blogger's sites and connect by joining or leaving comments. These are smart Fibro Bloggers who are building their community step by step. Oh yes, one other thing - they have placed one of the Fibro Blogger Directory badges on their site.
    Why not contact me if you think you should be in FIBRO BLOGGERS OF NOTE?