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
Don’t you also hate it when, despite knowing how badly you struggle with fatigue, someone who doesn’t is always delighted to tell you, “Yeah, I’m tired too?”
Me too, and I’ll explain why. I fully understand that everyone is entitled to feel tired, it’s a way of life. I also understand that everyone has different levels when it comes to how much tiredness their body can take. However, if you’re a person who is tired because they went to bed two hours before their alarm, or a person who is tired because they were binge-watching “Grey’s Anatomy” for two days solid without going to bed (I salute your dedication by the way, just saying!), then your tiredness level and my tiredness level aren’t really the same now, are they? In my opinion, people who sit there claiming that their tiredness from burning the candle at both ends is the same as tiredness from illness are pretty much insulting every single chronically ill person out there. Obviously with strangers, it’s slightly different as we can’t expect them to carry their crystal balls with them everywhere they go. But, when it comes to our loved ones who know our situations and who know how fatigue affects our minds and bodies, that’s when, personally, it makes it seem that my feelings are less worthy.
So, how is chronic illness tiredness different than “regular tiredness?” Well, seeing as everyone responds differently to fatigue, I will answer that question based on my own personal experience. Tiredness due to my multiple chronic illnesses is a level of fatigue which involves me sitting on the toilet crying my eyes out because I am so tired. It’s when I have hardly been able to move around my house due to lack of energy, yet I’m still sitting on the sofa yawning my head off, and an extreme bout of nausea because I am just so tired. It’s being unable to have a conversation because exhaustion has sucked all of the energy out of my body; therefore opening my mouth would use up a lot of the limited supply of energy I currently have to work with because, you guessed it, I am just so tired.
What are we so tired?.There’s several reasons. We can’t get to sleep cuz insomnia is common. We can’t stay asleep. And because our body is constantly fight with itself trying to deal with daily varying levels of pain and other symptoms of our illnesses.
Unlike healthy people, getting an early night doesn’t fix my problem. Doing less activity doesn’t fix my problem.Getting more sleep at nighttime doesn’t fix my problem (and that’s if I can even get to sleep!).Despite being absolutely mentally and physically exhausted, I can’t sleep, even though I would love to (and nearly do) fall asleep wherever my head lands.It’s debilitating. It’s exhausting. It comes with the territory of multiple chronic illnesses (fibromyalgia, chronic fatigue syndrome, etc.)
So if someone you know with chronic pain, especially moderate to severe chronic pain, and the say that they are tired. They are likely exhausted on, or more more likely off their feet unable to do much We don’t like to complain but when we do, it’s gotta be big.. So please don’t respond with a flippant “Me too!” What you are dealing with is quite possibly very different from what someone with chronic pain is dealing with.
It’s interesting to note exactly how many friends I have, real, in-person, face-to-face local friends that I have with Fibromyalgia.
When I first started having symptoms in the mid-90s, I’d not heard of Fibromyalgia let alone know someone with this condition.
I only found out about fibromyalgia through, unfortunately, Dr Google. Few doctors had even heard of it then. Many did not believe it existed. Few had any idea how to treat it..
Jump ahead a few years..
Its interesting how many people have fibro that you may not even know about..
For those not familiar with the story. See Below. It was also made into a movie in ’02.
I am convinced that the princess in this story had some sort of chronic illness.. From the description, she could have any of the following: Ehlers-Danlos Syndrome, Fibromyalgia, CFS/ME, Rheumatoid or Osteo- Arthritis, Allodynia, Complex Regional Pain Syndrome, Sensory Processing Disorder (In conjunction with or due these other conditions.
The American National Library of Medicine says “Possibly the princess in Hans Christian Andersen’s ‘The Princess and the Pea’ suffered from FMS since chronic sleep disturbances are typical in FMS. These sleep disturbances have been attributed to a dysfunction in the systems regulating sleep and wakefulness resulting in loss of deep sleep. ” That can be said about the other conditions I mentioned as well..
If you do a search of “The Princess and the Pea, chronic illness”, you will get a long list of articles believing that the lass in the story wasn’t just ‘sensitive’, but had a chronic illness. While all of the conditions I mentioned above, it seems Fibromyalgia to be the most common conspiracy theory..
What do you think? Does she have a chronic illness? Which one?
The Story – The Princess and the Pea
Once upon a time, there was a prince who lived in a wealthy kingdom. When he had reached the proper age, his mother, the queen, decided the time was right for her son to find a bride.
The prince, however was determined not to marry just any girl, but that his future wife should be a “real” princess. So he traveled the world and searched in all the kingdoms and met with all the princesses, but he still wasn’t satisfied.
One evening there brewed a terrible storm, with thunder, lightning, and rain. It was really frightful! In the midst of it all came a knock at the town gate. The old king went to open it.Who should be standing outside but a young lass, and what a sight she was in all that rain and wind. Water streamed from her hair down her clothes into her shoes, and ran out in the heals.
She claimed to be a real Princess. Although no one believed her, she was invited in to stay for the night.
The queen decided to test the young girl’s claim of nobility – without saying a word, the queen went to the bedroom stripped back the bedclothes, and put a single pea in the bottom of the bed. The queen then took 20 mattresses and stacked them on top of the pea and took 20 eiderdown feather beds and piled them on the mattresses. Up on top of all these the princess was to spend the night.
The next morning when the girl woke up, the queen asked how she slept. “Oh very poorly!” she said. “I scarcely closed my eyes all night. Heaven only knows what was in the bed, but I was lying on something hard, and now I am black and blue all over my body. It’s horrible!”“
They saw at once that she must be a real princess when she had felt the pea through twenty mattresses and twenty feather beds. Nobody but a real princess could have such a delicate skin.So the prince took her to be his wife, for now he was sure that he had found a real princess
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?
I first started having Endometriosis symptoms in my early teens. I started having CFSME symptoms in my mid-teen. My Fibromyalgia was triggered by a bout of of mononucleosis at age 19 which got slowly got worse…
Endometriosis was diagnosed when I was 26, Fibromyalgia at age 33, and CFSME at age 37. You’d think all these large diagnoses would qualify me easily for ODSP.
Nope.
My initial submission for ODSP, Ontario provincial disability benefits included documentation for endometriosis, fibromyalgia, edible syndrome, TMJ, asthma, IBS.. All of these diagnoses…No love..
From there I hired a lawyer you turned out to be a real dick and didn’t do squat. To keep my application current, I would request reconsideration based on regular bloodwork until I was able to get the needed documents.
When I requested a change of attorney I had to go into the tribunal, on the day of a huge snowstorm, with a broken foot.. The person who denied me didn’t even bother to show so the tribunal granted me the new legal representation – Durham Legal Clinic.
By this time, I’d seen Dr Alison Bested at the Environmental Health Clinic & had just become one of her patients in her private practice. I had another diagnosis of CFSME by her staff..
The legal clinic requested additional information from Dr Bested. They sent her a very specific document. This document basically outlined what I can and what I cannot do.
It covered the four broad areas of physical limitation. Mobility issues are those such as how far I can walk, do I need assistance devices for movement, how fast I can move – slow shuffle to jogging to an (ROTFL) out & out run. Upper body tasks include how much weight I can carry, how well I can push or pull heavy objects. Stair climbing functions are how many steps I can take, how fast I can climb. Activities of daily living include my abilities to eat, bathe, dress, sleep, administer my medications, preparing food & personal hygiene. She described me on my worst day.
My worst day, my pain is high. I can not walk more than to the bathroom – sometimes not even that far. This can cause issues with elimination. I am, at that point, unable to take any stairs, or carry anything heavier than a small plastic glass of water to take medication. I can not prepare my own food, let alone eat. Showering, brushing hair, cleaning my teeth would be beyond me at my worst..
If you then you add my mental health health into the mix, especially as there were suicide attempts by this time, I was finally approved.
This same documentation, several months later, was used to successfully get approved by CPP-D, the disability program for Canadians.
It took several years for this process to complete.
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!!
Fibromyalgia 
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