Fibromyalgia Survey – Your Voice Should Be Heard

There’s an international Fibromyalgia survey I became aware of today, by the Duquesne University School of Pharmacy, that is focusing on “self-reported quality of life, treatment effectiveness, and attitudes and perceptions of patients”.  I filled it out (it took less than the 30 or so mins it said it would). Gladly! I filled that sucker out. I want my voice to be heard loud and clear. I absolutely have some opinions on the matter in Canada and I hope you do too!

In the last section, it allows you to add some additional words. Here’s what I wrote:

Living in fear of not being treated fairly or taken seriously by the medical community is no way to live. Health care in the US, CAN, and the UK seems to be going down the drain worse and worse every year. Why? Accountability? Too many chiefs? Lack of education (health care professionals) or experience? Chronic pain is an epidemic in all the countries I mentioned.

The irony is that if the proper treatments were made accessible, a vast majority of us COULD return to work and become productive, tax paying citizens again. The first thing a chronic pain patient tends to lose is their livelihood. For some of us, that means the loss of a very needed 2nd income to live *barely* over the poverty line, or under it. Take their income away and force people to jump the necessary hoops for YEARS until Disability finally believes you are telling the truth (despite documents provided by real health care professionals) makes things so much worse.

Add to that, the unending parade of Dinosaur Doctors who refuse the pain relief medications their patience deserve. It’s despicable. Deplorable! Downright negligent. Yet after years of speaking to so many people like me who suffer daily with all these things, it is more common than I think the health care industry even wants to admit to. I am extremely happy to provide feedback to any study that can bring some REAL light to this serious issue. Anything to help improve the horrible quality of life thousands and thousands of us live with every day.

Shannon @ www.livingwithfibromyalgia.ca

Ironically, this is a #VBPD (very bad pain day). I’ve had to wean off the Nucynta while I find a new family physician. I have a few weeks left of Cymbalta and Lyrica, neither I have  any concern of getting more of – even from a walk in clinic. Unfortunately, local walk in clinics do not prescribe narcotics. So I’m stuck with OTC Tylenol 1, with codeine and acetaminophen in the time being. It’s not going well, at all. Fortunately I’ve got a few other options before having to resort to the ordeal of waiting 6 some hours in the ER before being seen. Believe me, I’ll exhaust all options before that!

Anyway, forget my whinging. GO do the survey. I hope you share it with your friends and they share it with their friends. We should all be submitting this feedback. Maybe one day (in our lifetime!?) we will see something done about our typical lousy quality of life and ignorant, negligent treatment and disbelief from health care professionals. Maybe if we’re lucky, we’ll finally get some medication that really works! Hell, I’d settle for being able to access the many options of alternative treatments I can’t afford: acupuncture,  trigger point therapy, massage therapy, chiropractic, and so on.

I still have hope.

Blessed be! Light and Love to you all <3

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