Category Archives: Fibromyalgia

Down is Harder After Up

Alternate title: Be Grateful or Be Miserable!

I had some really good brain and body days in the early spring, enough that they left an imprint on me of how it felt to feel (relatively, and almost) normal. instead of the usual:

feels like quicksand-3

Then shit happened… (sorry, I don’t usually use language like that, but I’ve lost access to some parts of my vocabulary lately as a result of the toxic stuff I was exposed to).

Pesticides, dental infections and extractions, toxic products and materials (including trying to replace a SS kitchen kettle -simple, yes? Actually, NO), summer road work, more and more pesticides, heat,  VOCs, lack of ventilation and air filtration, which meant no ability to cook, and more…all of which resulted in some serious brain fog, cognitive problems,  and drastically reduced physical abilities.

Back to the drawing board…

After having some good days this year, I crashed again, and I haven’t been able to recover… much… There can be a few better mini-moments here and there if the outdoor air quality is exceptional and the breezes have been blowing the “right” way, but nothing like how well I was doing for a while in the spring.

Which makes it so much harder now, because I can actually remember what it was like to be more functional. It was so long ago before, that it didn’t really come into play or into my thoughts, as for so many years, I couldn’t remember what it was like to think clearly, or to function without effort, with relative ease.

Is it really too much to ask to be able to function with relative ease? To not have every thought, every action be like climbing a mountain or navigating an obstacle course?

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V’s Canary Cries

Guest Post by V from the USA

This was originally posted to an online support group. V granted her permission to share it here. She has been able to put this part of her life story into words that so many of us find hard to express, and I thank her deeply for sharing her words with you too.

 

Canary V

It’s about 1:30 a.m. and this is about the time where I start to feel despair about everything in my life. I just can’t seem to adapt to the isolation and lack of a routine or purpose. Also, I can’t seem to find any pain meds for my chronic pain. I have been in physical pain for so long.

I know this post may seem disjointed which is apropos considering how I feel.

I AM so tired of spinning my wheels…Along with MCS I have so many other medical issues…non terminal that I know of but still…I have asthma and allergies.. I can’t be around dogs or cats, the weather determines my breathing status for the day and my physical mobility.

I can only eat about 10 things and it’s exhausting to try to rotate these foods and I spend excessive time trying to plan. Even planning a rotation I still get itching throat and sometimes a swollen throat with some of the ten things I think I can eat…it’s horrible to start eating and not know how I will feel ..

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Why Exposure Monitoring Would Be Medically Validating

We (as a society) are facing unprecedented kinds of health problems and challenges that can easily (if you do any research) be explained by our 24/7 exposure to toxic chemicals in everyday products and materials, GMOs (and pesticides) in our “food” supply, and 24/7 exposure to unsafe levels of wireless radiation.

Harmful pollutants are now in our air, water, food, clothing, and you name it, it’s likely to be either made with toxic materials, or has 2nd or 3rd hand toxic chemical contamination from passing through a toxic environment. These exposures add up, and are messing with our health and well-being in ways that are not yet well-understood, but point to the urgent need to stop business as usual, and stop burdening our bodies with so many harmful pollutants that we were simply not designed to process.

There is money to be made by selling drugs, even if the drugs aren’t appropriate to the condition,  do nothing to heal what’s wrong, and often just make things worse, much worse.

Stephen Genuis is a researcher who has published many peer reviewed articles dealing with environmental health. In 2014 the official journal of the Canadian Family Physician published two of them. I shared the abstract from one of them last year.

I am going to “quote” extensively from the other article here, as most of you don’t follow the links, but will read what I have here.

Pandemic of idiopathic multimorbidity
Stephen J. Genuis, MD FRCSC DABOG DABEM

Canadian Family Physician June 2014 vol. 60 no. 6 511-514

“Sitting among colleagues in the private room of a swank eatery, I recently had the pleasure of participating in a pharmaceutical industry–sponsored medical education event allegedly exploring the management of patients presenting to their health providers with multisystem health complaints.

The animateur for the evening—an eloquent orator with impressive credentials—raised the issue of the rising prevalence of patients who present with a laundry list of ongoing and seemingly unrelated persistent complaints often including headache, joint pain, fatigue, brain fog, bloating, chemical intolerance,1 muscle aches, itchy skin, and so on.”

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2014 Statistics for MCS, FM, and CFS in Canada

The 2014 statistics for Canadians reporting a diagnosis of fibromyalgia, chronic fatigue syndrome, or multiple chemical sensitivities, (by sex, household population aged 12 and older) are here:

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Fibro Flare From Underwear

 fibro flare from underwear 1 Original image from GettyYes way…sighs…

Most of us wear underwear all the time. We don’t think much about it.

I remember when I used to be able to find decent 100% cottom undies with enclosed elastic waistbands at the dollar stores! I could throw them in the wash once, and they were good to go. Those were the days!

More recently, I’ve been disabled from a serious fibro flare caused by trace (?) levels of chemical residues from wearing organic undies that cost me $20 a pair. Even after soaking and washing them at least a dozen times, and then boiling them several times after.

Disabled?
Yes, disabled!

My alternate title for this post was Disabled by Underwear… Here’s what happened:

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The Ontario Centre of Excellence in Environmental Health Has a Website

Recognition Inclusion and Equity  is the name of the new website for the OCEEH. Their comprehensive reports and other information about this much needed project can all be found there now. Please check it out and also “like” their facebook page if you are on facebook.

Why? From their website:

MISSION

Our overarching goal is to achieve ‘recognition, inclusion and equity’ for people living with the often painful and disabling conditions of ES/MCS (environmental sensitivities/multiple chemical sensitivity), ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome) and FM (fibromyalgia).

At present, more than 568,000 patients with these conditions lack the normal rights, benefits, policies, programs and facilities that Ontario makes available to those with conditions of comparable severity and prevalence.  …

CONDITIONS OF COMPARABLE SEVERITY AND PREVALENCE

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UnStopped and Able Until…

I have heard that new ads are out and insinuating people will somehow feel richer  merely by inhaling mysterious blends of chemicals.  Please don’t be fooled. Seriously.

“Unstopables …  will add an indulgent level of luxurious scent to every load of your laundry. Add as much as you wish for up to 12 weeks* of scent enhancement so you can smell like the lifestyle you—and your wardrobe—deserve.”

They fail to mention that your neighbors who get migraines may think that the “scent enhancement” emanating from your dryer vent (which was designed to emit moisture, not chemicals) is not such a good thing for them, their asthmatic children, or for their aging parents who have lung disease and whose window is yards from your vent.

Apparently we also don’t deserve to know what we’d be inhaling if we use these things! P&G will only refer us to the self-regulated fragrance industry’s voluntarily disclosed list of over 3000 ingredients, most of which are petroleum derived. (Scroll down for a PDF of the list, which took quite a bit of sleuthing around their other website to find).

I’ve designed a few new ads for them, simplifying some of their marketing messages into plain English for you :

UnStopped and Able Until

There’s more, much more…

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