Today is May 12th..
On this day we try to spread awareness of three debilitating and chronic medical conditions. I have all three of these conditions & I have to say, they all suck.
FMS – Fibromyalgia Syndrome
CFS/ME – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
MCS – Multiple Chemical Sensitivities
Each year on May 12th, we observe International Fibromyalgia Awareness Day. Globally, we also acknowledge Awareness for Chronic Immunological and Neurological Diseases (CIND), typically considered Chronic Fatigue Syndrome/ Myalgic
Encephalomyelitis (CFS/ME) and Multiple Chemical Sensitivities (MCS). This does include other conditions such as Multiple Sclerosis, Addison’s Disease, Lupus, Chronic Regional Pain Syndrome (CPRS), & Irritable Bowel Syndrome to name a few.
Fibromyalgia affects 2-4% of the population. For context that’s up to 13 million of the US population & 1.5 million of the Canadian population It is a musculoskeletal syndrome and causes a variety of symptoms. Common to all Fibromites is chronic widespread pain and debilitating fatigue. Additional symptoms can include:
Symptoms may come and go, lasting a few minutes, an hour, a day, a week, a month, or a year. While there is no cure for fibromyalgia, a variety of treatments and therapies focus on reducing the amount and frequency of pain. They also aim to improve sleep. Therapies such as exercise, massage, acupuncture, and chiropractic care aim to manage symptoms without pharmacological interventions. Prescriptions manage pain, improve sleep, and combat depression, too.
Chronic Fatigue Syndrome/ Myalgic
Encephalomyelitis (CFS/ME) affects ¼-¾ of 1% of the population For context that is up to 2.5 million of the US population & up to 300,000 of the Canadian population. It is a serious, long-term illness that affects multiple body systems. Symptoms of CFSME are severe fatigue, and sleep issues. Additional symptoms commonly include: post-exertional malaise (PEM), problems with thinking and concentrating, pain, and dizziness. Like fibromyalgia, symptoms may come and go, lasting a few minutes, an hour, a day, a week, a month, or a year. There is no cure and no real recommended treatment plans . Individual symptoms may be treated or managed and like Fibromyalgia, they may provide relief for some but not others. Coping strategies, like learning new ways to manage activity, may also be helpful in some.
Multiple Chemical Sensitivities (MCS) is a syndrome resulting from a reaction to environmental factors such as tobacco smoke, auto exhaust, perfume, insecticide, new carpet, chlorine, food chemicals an preservatives. Symptoms can vary extensively and can include:
Treatment typically is to avoid the irritant
AWARENESS DAY HISTORY
Fibromyalgia, CFSME, MCS Awareness Day was first observed in North America in 1992 in honour of the birthday of Florence Nightingale.
Why Florence Nightingale?
During in the Crimean War on the 1850’s with the English army, she established the training of women, organizing them to help care for the wounded soldiers, establishing the basis of modern nursing.
During the war while working on the front lines, Florence suffered a traumatic collapse which resulted in most of her life to be in debilitating chronic pain, often unable to walk or leave her bed. Documentation suggests her symptoms to be similar to fibromyalgia and chronic fatigue.
To help spread Awareness of Fibromyalgia and these other conditions please use the following hashtags in your social media:
As the month of May is also dedicated to Fibromyalgia Awareness you can use these additional hashtags
Some of these image are ones I’ve created, and they are marked. Some are not please give credit & refer to this blog at http://www.KelliAEllis.com
so we have finally reached the 31st of May, the final day of fibromyalgia Awareness Month. I know I’ve been posting a little extra and almost exclusively about fibromyalgia this month but but else would I do? LOL
what I would like to thank all the people in my life who support me. I made masks for those closest to me as well as myself. I would like to thank each and every one who wore these masks & I hope will continue to wear them until we no longer need them.
This lad is on of my guy friends whom I am fairly close to, but I was surprised when he said he wanted a mask. Apparently he knows others (including 2 mutual friends) with Fibromyalgia.
The only one I made a mask for who I do behave an image of is my nephew cuz he couldn’t find his (not surprising, cuz his mom’s wearing it!) But my sister, her 2 daughters, and my Mom & Dad. I thank my family for their support
My best friends and their partners.. I’ve known both Catherine & Gerry since high school. I’m lucky to have maintained their friendships after 30 years. I thank them & their partners. Cath’s masks read “I wear purple for my BFF” & “I wear purple for ME”.
As many of you know, I’m involved in Scouting & I had some of my fellows outer request masks as they know how much it impacts my daily life.. I worked with Rainbow 13th directly for 2 years in Beavers & she is our outgoing group chair for one group. Raksha 13th has worked with me at Cub level for 3 years now& is out incoming Ng chair. She has seen how it impacts me and the improvements I have made over the last few years. Rainbow 1sy, well.. I’ve only been working in tandem with her since Covid hit & we initially amalgamated the groups, but like the bffs, I’ve known her since highschool and we did Venture Scouts together as youth.
& I support me. Some days I have to remember that.
i have 4 masks.. 2 that say Fibromyalgia Awareness, but different patterns.. one that states “I wear purple for my BFF” (cuz my bff has fibro too) & “I wear purple for ME”. Mine, I will have in regular rotation – good thing purple is my favourite colour..
So everyone who supports someone with Fibromyalgia, on their behalf, I thank you. Whether it’s doing our groceries wearing a mask for Fibromyalgia Awareness or just checking in to make sure we’re ok,, we do appreciate you & your support.
Originally written for the 25th Anniversary with 25 facts,, this is a list of things you should know, from someone with Fibromyalgia. From someone who experiences it, not just studies it. I have taken the original, modified it and added to it from *my* perspective as my experiences with fibro are not the same as hers. OP info available at the bottom.
Original published by Puja Rios on May 11, 2007 at https://www.huffpost.com/entry/25-facts-for-fibromyalgia-awareness-day_b_59148663e4b01ad573dac1c2
Recently, I received an email from Sobey’s Grocery stores in response to my request to be waitlisted for the vaccine.. They said, I was eligible for the COVID vaccine, for the AstraZeneca vaccine. Finally!!
I went & signed up. It turns out the closest location for the shot was in the city a Gerrard & Vic Park. I’m sure there’s not a lot of you familiar with the geography of Toronto but from my home it is approximately 50 km or just over 30 miles ( just under an hour away) to that specific grocery store for my shot. But I was going to be going into Scarborough (East Toronto) anyways because of Lilly’s surgery. I figured I’d would kill two birds with one stone.
My Shot, Thursday
So my appointment was on Thursday, at 11:30am. It was super quick. By the time my brain registered the sensation of the needle, she was already putting it syringe into the sharps bin.So, even if you don’t like needles, it’s not that bad. I stayed the required 15 minutes. No reaction initially other than some moderate nausea.
The nausea stayed with me for the day. I was a little tired afterwards & had a short nap which helped me feel a little better. Even went for walk with my sister in the evening.
My Reactions – That Night
By 2:00am the nausea was worse, so much so that I had an empty bucket beside my bed, just in case.
Shortly after that I noticed I was cold. I was eventually shivering despite pj’s and warm bedding. My temperature at this time was 38 & change in Celcius .
My arm was sore, but most people have that reaction. My fibro was triggered and my pain was climbing everywhere. At worst I’d say 5/10.
By 5:00 this morning my body had switched from shivering to sweating. I was also having a headache kick in. I took some Tylenol with codeine and was finally able to get back to sleep.
My Reactions – Next Day, Friday
I was abruptly woken up by my Mom at 10:30am for a temperature check. It was 36.8, completely normal. After checking Lilly & giving her meds (see her surgical post if you are interested), I went back to bed. Fortunately in the morning, the body wide pain had taken a step back and no more shivering or sweating. I did still have the headache, and the nausea but it was not as bad.
As the day wore on I’d flip from chills to overheating, but no temperature. The nausea kept up and I did rush to the bathroom with dry heaves. The body-wide aches went back up by bedtime.
My Reactions – Day 2 Post Vaccine, Saturday
Still has ongoing flipping between chills & hot flashes. Left arm still sore.. Ongoing body aches all during the day.. Still nauseous, but not actually vomiting..sent alot of my time resting.
My Reactions – Day 3 Vaccine, Sunday.
Chills & hot flashes completely abated by the evening and the nausea aswell. Still had body-wide aches & pains.
My Reactions – Day 4 & 5, Monday & Tuesday.
I think by this point I was completely finished reacting to the actual vaccine, whoever my fibromyalgia decided to react to the vaccine reaction. Oh so fun. So by the time I woke up on Monday I was in a lovely little fibro flare that has lasted several days. Only thing I accomplished was the opening & closing of my Tuesday Night Cub meeting.
So, by this point my actual immunoreaction to the medication in the vaccine was done, but not the end of this saga of my vaccine.. Read here for more on this story.
As of 2016, new criteria for the diagnosis of Fibromyalgia were determined. The previous test was a trigger point test of 11-18 points reacting gave a diagnosis of Fibromyalgia when not other condition explains it. This is no longer considered a valid marker for Fibro though many doctors still use this outdated model.
According to this, my WPI is 10 & my SSS is 8. That’s one criteria down. Symptoms have been around for decades. Dr Bested did a full panel of tests, needing 2 separate visits cuz of how much blood they required for the tests. All it found was that my vitamin D was a little low, but normal and vitamin B12 was lower than normal – but I knew that already.
So by this criteria, guess what!?!? I have Fibromyalgia!! Surprise!!
Today, May 12 is International Fibromyalgia Awareness Day.. also known a Fibro, FM & FMS, the rigging for today is Purple.
Today, May 12 is International Chronic Fatigue Syndrome / Myalgic Encephalomyelitis Awareness Day. Also known at CFS, CFS/ME, ME/CFS & ME, the ribbon for today is Blue.
Today, May 12 is Multiple Chemical Sensitivity Awareness Day. Also known as MCS, the ribbon for today is Green..
i’m sure you’ve seen it floating around.. I’ve been using the term forever & an not really sure of the origin. My first use of the word in this blog is in 2009..
A Fibromite, simply put, is a person with the medical condition of Fibromyalgia.
By extension, Fibromites are people with Fibromyalgia.
Fibromyalgia 
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