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
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.
MSG & Sodium Nitrate are used as flavor enhancers and preservatives in many handled foods, for instance preserved meats and sauces. They are full of salt as well, which can worsen pain or inflammation in some fibro patients.
Fibromites. To reduce the effect of nitrites and MSG on your fibro, avoid prepackaged foods as much as possible and emphasize on whole foods like brown rice, fish, and lentils.
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
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’ve mentioned this before and some may not be clear with what I mean. I’m not talking about being rude or nasty, but that is unacceptable aswell. I’m talking about the things you are not subconsciously aware of.
Touch.
This is probably the biggest issue. People touch people. It happen. Even when sometimes you are trying not to. Like on a crowded buss or subway car, especially during rush hour. There’s also touching that you may not be aware of. An intended gentle affectionate touch like a hand on the shoulder could easily cause excruciating pain. While you can’t help the contact on a transit system, you can be aware of how you express affection to someone with Fibromyalgia or any other chronic pain condition. The easiest way to know is to simply ask.
There are times when you will forget. My mom forgets and I’ve had fibromyalgia for over 20 years & chronic pain for another 10 before that.. So if you forget, if you remember as your doing it or right after, apologize. If they mention it to you later, apologize. If they don’t accept your heartfelt apology, then they are just being jerks. But if they don’t comment, then either you likely had very little impact, or they just don’t feel comfortable to discuss it with you. Only you’d be able to tell.
Scent.
There are many scents people react to. Anything from expensive perfumes to little Jimmy’s upturned stomach. Many people with Fibromyalgia, Fibromites, do react to various smells may of them synthetic. As a result we generally can not be around the source of a scent.
Perfume, even the expensive stuff is an excellent example. While you may think you are smelling like the bee’s knees, but in fact you could be harming someone else’s quality of life. Other examples include moisturizers, bath products, tobacco smoke and laundry soaps/fabric softeners. Reactions are similar to an allergic reaction and while not anaphylactic it can cause anxiety which could result into a panic attack. So if you must make yourself smell ‘pretty’, Please use a light hand cuz the person with fibro who rides up on the elevator with you at work, would very much appreciate it.
There are some more natural scents that tend to both us as well. I am fortunate that I don’t react poor to natural scents, except onions but that may have more to do with my aversion to onions.. 😆
Sight & Sound.
While not as much you can do about this, just be aware that many of those with fibro also have sensitivites to bright lights & loud noises. So no going into their room to wake them up with opening the blind & the window with a 20 piece band. That could severely thaumatize them – I know it would for me.
Taste.
Well there’s not a lot you can do suits you are not actually feeding them or forcing food down the throat.. lol.. You can simply be aware and take into consideration food sensitivities if you are aware of them. The last thing anybody wants is for someone to spend the evening in the bathroom, stinking it up.
General rule of thumb for me, the more natural, the better.
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!!
What does this look like? Honestly, it’s not that different. Most people who have chronic illnesses only go out when they are having good day.. In remission, you are having primarily good days.. So, the big change is that people will see more of that person. Instead of once every 2-3 weeks, depending on your relationship, you might see them 2-3 times in a week!
What does it look like for me? It looks like better connections with family & friends as I can see and interact with them more.. It looks like consistent cubs meetings with a higher participation. It looks like I can do something from before but without the bad consequences like I was able to go for a hike down by the lake today and tomorrow I may be a little sore, instead of a nice big crash that used to happen.
Do I still crash? Absolutely.. Does it happen as much right now? No. Is it as bad, as painful, right now? No, actually the pain is better right now. Does it last as long? Not usually.
So, I’m sure you are wondering, can I return to ‘normal’ life? No.. I’m still having off days. I still can & do overdo it. I crashed out one day last week for no particular reason. Today I am toast cuz of the weather shift earlier in the week. I having been slowly adding more ‘normal’ things to my life including friendships, romantic relationships, scouting commitments, family interactions, increased activity including exercise.
Am I still in pain? Am I symptomatic? Sbsolutely. That one reason I know I’m not ‘cured’ I still have pain evety single day. But lately it’s only a 2 or 3 on the pain scale these days.. I still am exhausted, but I don’t necessarily need the 12+ hours of sleep to recover from a regular day. IBS? Oh yeah., Fibro Fog? Definately.. Sensitivities? Sure, some less intense.. Morning stiffness? Oh yeah, but it’s usually less..
Why am I in remission? What did I do? I can’t say for sure, but the timing of the end of a toxic even abusive long-term relationship may have something to do with it. I returned home, slowly rebuilt relationships, re-establishing connections, increased fitness, weight loss, changed my meds & got off several, decreased dosages of others.. Lots of good changes, all of which may have contributed to my current status.
Will this last? I wish, but I doubt it.
Some of you may know that I have funky allergies including products found both in food and adhesives. For those who didn’t know, you know now.
Fibromyalgia 
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