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
i know it’s been a while since I’ve posted.. alot’s been going on.. Dealing with mental health and multiple physical health issues . Add, I think, perimenopause.. hot flashes & chills suck..
So big news : current weight loss 129.9 lb. I also got my first two rewards for weight loss.. when they heal, I will share..
I will endeavour to post more in the future..
The one other thing that many Fibromites have is common, but varies greatly is MCS – Multiple Chemical Sensitivities.
MCS is considered, in the most part, an environmental illness – a condition activated by the things in the world around us . Possible triggers that set off people’s symptoms vary including tobacco smoke, auto exhaust, perfume, insecticide, new carpet, chlorine, and more. Other chemicals that can set someone of are also in food or beauty products like moisturizers, or facial cleaners..
But there are also chemicals in our food.. Some of those chemicals are pretty scary.. I’m allergic to a binding chemical in food, but its also in the adhesive in bandaids & the other is found in moisturizers.. So makes you wonder..
My MCS issues in the way of food are Xanthan Gum, Guar Gum & Carrageenan.. This limits my food so I cant eat:
I also react to certain products but i dont know why such as KD. The brand name Mac & Cheese does a number on me, but other brands dont.. Another example is Campbell’s Chunky Soup – Beef, but I can eat any other chunky soup by Campbell’s.
As you can see, I cant eat alot of pre-processed food.. Whats sucks the most is the Ice cream & desserts. Only ice cream I can have is Haagen-Dazs.
And yet every one is different. Some people react to sulphites, some to food dyes, and others are sensitive to certain products like milk but not cheese. It makes no sence but there it is.
This is a series approximately 10 weeks long, looking at food choices.
It’s been reported that beyond OA, fibromyalgia is the most common musculoskeletal conditions. Over 12 million Americans have been diagnosed with fibromyalgia that’s about 4%.
Sticking to a personalized fibromyalgia diet is one of the ways you can manage the pain and get more out of life.
Most people with FM know the necessity of taking it easy when pain flares. Many, however do not realize how much your food choices impact your fibro symptoms. Because it not studied extensively there is not much data on have exactly particular food ingredients and items impacts us. In a recent nutritive article published in Rheumatology International, small study of 101 FM patients determined for this group, that 7% had food intolerance or allergies, & 30% had made changes in their diet to help their situation.
While there is no particular diet suggested for FM treatment, some Fibromites have noticed a correlation between poor food selections & fibro symptoms. One nutritionist suggested that Fibromites seem to have excessive level of a dependence on ‘luxury’ foods (foods easy to prepare or buy premade) due to the inability to prepare & eat health choices on a regular basis Unfortunately, for many it leads to weight gain which leads to being overweight which can aggravate many fibro symptoms.
Living with fibromyalgia, your food selections could be making your pain or other symptoms worse. As each of us deals with fibro differently, there is no one-size-fits-all diet, but making changes can help!
Come back next week for more!
Yes, I live in pain every minute of every single day. It is the Nature of the Beast..
If someone tells you they have fibromyalgia or CFS/ME & are pain free, they are wrong. Pain free days do not happen. If someone is pain free they are either lying to you, lying to themselves or they were misdiagnosed.
Like all Fibromites, I have pain every single day. Some days is really great at 1-2/10, but it has been as bad as 8/10 for my kidney stones. Lately, I’m typically at 3 or 4.
The best I’ve been is a 1.. but a zero? No I have zero pain or painfree days.
So, do I wake up in pain? Yes.
Do I walk my dog in pain? Yes.
Do I do groceries in pain? Yes.
Do I write my blog posts in pain? Of course.
Do I exercise while in pain? Ha – tricky one. Yes, if I can do so without triggering a flare.Do I snuggle up & watch TV or movies in pain? Yes.
Do I socialize in pain? Yup, otherwise I’d be a hermit.
Do I participate in personal adult extra curricular activities while in pain? Unfortunately, yes. There is 2 posts about this topic in the works.
Do do my Scouting in Pain? Yes, I do. Only one person in each group has any clue about how I’m doing Raksha 13 & I have become good friends through Scouting & Rainbow I’ve known grade 8 or 9, but through guiding & scouting.
Don’t I take meds to help with the pain? Yes, but he important word there is *help*.
Now think about this.
Would you be able to handle never-ending pain? Knowing that it will never, ever end? That it could flare-up & knock you out with, if you’re lucky, only a moment’s notice??
Could you handle the negative prospects, knowing that most Fibromites do deteriorate? It means you will likely get worse, not better.
How could you handle additional fibro symptoms like debilitating fatigue matched with bouts of insomnia? What about a loss of cognitive function where you can’t remember silly stuff like the phrase “tug-of-war’ during a game of Pictionary with the kids. How about feeling useless cuz you are unable to help your kid with his math homework because you don’t remember how it works – all you can say is the answer is wrong, but unable to explain why, made worse cuz you had a partial scholarship in Mathematics.
What about the other “smaller” symptoms? IBS? Thyroid issues? Sjorgens Syndrome? Sleep impairment? TMJ? Reynauds Syndrome? Muscle spasms or reoccurring ‘Charlie Horses’? Costochondritis? Muscle weakness? Myofascial Pain Syndrome? Migraines? Allodynia (touch sensitivity)? Chemical sensitivities? Light, noise or smell sensitivities? Restless Legg Syndrome? Paraesthesia?
Admittedly, you won’t have all of these all the time, but they can spontaneously come & go without warning. But is that something you can handle, with the never ending pain & fatigue?
Very few friends can identify how much I’m in pain. My bff can usually spot it a mile off. My sister & occasionally my Mom can tell by looking at me.. I have other friends & family who have learned some of the more obvious signs of higher pain levels.
So yeah, I’m in pain, even as I’m snuggled up in bed, relaxing & medicated. I am still in pain. Always.
Could you handle it?
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..
Welcome to Fibromyalgia Awareness Month!
What is Fibromyalgia? Fibromyalgia is a chronic pain condition characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. The current theory behind why is that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and non-painful signals.
Why is Awareness Important? Because there are many incorrect assumptions and false facts about this disease & the people who have it. People need to know that just because you can’t easily see my pain on my fatigue or digestive issues or cognitive issues or.. etc.. that does not mean it is not there.
Why May? Initially, Fibromyalgia Awareness Day started exclusively on May 12 – the birthday of Florence Nightingale. Why her? Not only is she the mother of modern nursing, it is believed that she has Fibromyalgia…After returning home from the Crimean War in 1856, her diary entries are suggestive of the classic pain and fatigue condition that we have all experienced. So May 12th became the date for Awareness for Fibromyalgia, ME/CFS, & MCS.. But why or how did they get that extended to the whole month? I have no clue tbh. .
Why should you care? Approximately 2 to 4% of the population has fibromyalgia. In the US, that’s about 6 to 12 million people, In the UK that’s about 1⅓ to 2⅔ million people. In Canada that’s about 750,000 to 1.5 million people. That is alot of people. So, if that is the stat for the entire world, that means there are 153 to almost 307 million people worldwide with fibro..That is A LOT of people.
So what? That’s still not me. So why should you care, even with those stats? Well, anyone can have Fibromyalgia. So your son, your daughter, your sister, your brother, your cousin, your friend, your mother, your partner. Anyone of these people could get fibromyalgia.. That also means if you know 100 people, 2-4 of them will have Fibromyalgia. So, you *do* know someone with Fibromyalgia.
How? Simple. Ask questions. Do some research to find out a little bit of fact (not fiction) on fibro. Be cognizant of your behaviour. Support those in your life with this condition – off help & let them know you believe them. Wear a purple ribbon to show your support Wear purple!!
Today, May12th is also Multiple Chemical Sesitivities Awareness Day. This is signified by a green ribbon.
Fibromyalgia 
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