The Reality of Living With Fluctuating Fibromyalgia Symptoms | The Mighty – April 2017 Mattea Sykes
This article was mistitled because it is actually about EDS.
Many people start each day with a refreshing shower, and then go to work or achieve their tasks for the day, thinking of it as nothing more than a quick way to wake up.
But for some people, like those with Ehlers-Danlos syndrome, fibromyalgia, multiple sclerosis, rheumatoid arthritis or lupus SLE, it is the entire day’s chore, hard work and achievement that involves a great deal of time, pain, effort, endurance and spoons.
Here is a summary of two consecutive days from this week to show the reality of living with a fluctuating condition.
Mattea goes on to deliver a blow-by-blow narrative of a couple of days with EDS: The Reality of Living With Fluctuating Fibromyalgia [EDS] Symptoms
Living with chronic pain – Laura Peters – April 20, 2017
I’m sure many folks with EDS can relate to Sydney’s struggle with her typical pain from EDS.
There are days that Sydney Davis can’t move from her bed, because her entire body hurts. “It’s exhausting to take a shower,” she said.
Davis likes to stay active. She climbs mountains, she plays sports and she wants to be a physical therapist.
Many folks with EDS seem to live with this contradiction: being active and being in pain. Many of us have increasing pain as we age precisely because we were too active for too long while we were still able. Continue reading
My Body’s Bad Glue | ENTROPY – – December 26, 2016
This is a wonderful essay linking the physical “disconnectedness” of EDS to a psychic feeling of disconnection from the self.
I have Ehlers-Danlos Syndrome, which means my body has bad glue.
My glue, an amorphous, drunk blob or cloud, playing tricks, getting things all wrong, incapable of indicating what is real. My genes, speaking to my body in the wrong language, refusing to bind me, utterly stupid in regards to what level of adhesion properly constructs a body. Continue reading
My Body’s Bad Glue – ENTROPY
written by Carolyn Zaikowski – December 26, 2016
In this essay, Ms. Zaikowski describes how the “bad glue” of EDS allows us to slip and slide not just in our bodies but through our lives. She connects this physical malady to our emotional and even the existential realms – a very different viewpoint.
I have Ehlers-Danlos Syndrome, which means my body has bad glue.
My glue, an amorphous, drunk blob or cloud, playing tricks, getting things all wrong, incapable of indicating what is real.
My genes, speaking to my body in the wrong language, refusing to bind me, utterly stupid in regards to what level of adhesion properly constructs a body. Continue reading
Chiari with a Lyme twist – From Lyme & Co
I feel as if I’ve been living in a parallel universe where suffering is unending.
And I’m angry. I’m angry at the walking well. The people who wake up in the morning, get up, go about their business, without carrying around a sack on their back
And my heart is not growing in size, its shrinking.
All of me seems to be shrinking. Continue reading
What to Know to Understand the Experience of Having Chronic Pain | The Mighty
This is an excellent description of the various aspects of living with chronic pain, starting with a phrase that digs right into the heart of the experience.
Chronic pain changes everything in life, most entirely invisible to outsiders.
Many people do not seem to understand chronic pain or just how extensive its effects are, how exhausting always being in pain is, how displacing and uncertain, nor how hard that pain makes it to concentrate and think.
Burnout – National Pain Report
I’m starting to burn out from the relentless onslaught of anti-opioid propaganda. Every morning I dread what I’m going to see on my Twitter feed, which is focused on pain.
The anti-opioid folks are using a well-known psychological tactic: if you repeat a falsehood enough times, it is perceived as true and then vigorously defended
When even a doctor spouts unscientific hype and tells me “opioids are bad” it breaks my heart for all of us pain patients.
And it’s this heartbreak, over and over, that makes writing about it so painful.
The article in the National Pain Report was based on a previous blog entry: Burnout
I’m sickened by the tone of the anti-opioid lobby these days, which has become aggressively hostile to pain patients.
They present more propaganda than fact and attack pain patients who are legitimately taking opioids for chronic pain. They invent their own truths and blur the line between known facts and biased conjecture. Any dissent is met with hostility.
Their denigration of pain patients has reached a new low with their latest claim by A. Kolodny, leader of the anti-opioid organization, PROP:
“Anyone taking opioids regularly is addicted.”
Whether you are in pain or not is irrelevant, whether you are taking prescription medicine or scoring heroin on the street, whether you are conscientious hard worker, or living by crime, none of that makes any difference; if you take opioids you are an addict, they insist. Continue reading
I cringe when I hear the awful propaganda statistic that “40% of opioid prescription opioid users go on to use heroin” with its horrible implications because this statement is almost criminally misleading.
It sounds truly awful, like anyone using opioids for pain relief has a 40% chance of getting addicted. But, wait a minute…
Literally millions of people have been given opioid pain medications after major painful surgeries, and 40% of those folks certainly do NOT go on to heroin. The vast majority of patients have no problem with ending their opioid use when their pain ends. Continue reading
As a pain patient with over 20 years of successful opioid treatment experience, I’m offended by all these pain guidelines that assume I am stupid and lazy (if my pain is even real in the first place) and that my doctor is ignorant and negligent.
I’m insulted by all their extremely negative assumptions and appalled that they broadcast such a devastating stereotype of pain patients. Coming from the central government these guidelines stigmatize patients more powerfully than anything I’ve seen so far.
They paint pain patients as lying, lazy, ignorant, whining scammers, assuming the very worst of human motives and behavior. This reminds me of the psychological truth that we are generally most bothered by others when they reflect our own shortcomings. Continue reading