Tag Archives: chronic pain

Nervous Systems: Part 7

Previously: Parts 1, 2, 345, and 6. Image descriptions can be found below the .jpgs, under the “read more” tag; click the images for larger versions.

Regarding the “tender point” test referred to in this installment : In 2010, the American College of Rheumatology (ACR) revised the diagnostic criteria for fibromyalgia so that rheumatological exams do not utilize the “tender point” test. The new diagnostic criteria include a Widespread Pain Index (WPI) and Symptom Severity (SS) Scale.

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It’s Personal: Some Reflections on Nonfiction Writing and Chronic Illness

When it comes to actually sitting down and writing, there seems to always be something mental or physical that’s in my way. I suck at poetry, so no writing poetry for me, even if it’s just two or three lines. Short stories? I am terrible at those, too, although I occasionally manage to write one and then forget about it, only to find it years later stuffed away in one of the 25 or so computer desktop folders that I’ve created for my writing. I tried writing a sci-fi novel once, starting when I was 13, stuck to it for a good two years, and only gave up entirely when my very own case of major depressive disorder in high school basically sucked that one out of me.

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Six Things I’ve Learned From Dealing With Chronic Pain

Six Things I’ve Learned From Dealing With Chronic Pain

As I have written about in many locations around the web (including this site), I have chronic pain and fatigue caused by a condition called fibromyalgia. I started experiencing symptoms at 20, was diagnosed at 21, and in the eight years since my diagnosis have learned some things that may or may not prove useful to both other people with chronic pain and/or health conditions, and “healthy” people as well. The following is less about what having this condition is like on a daily basis (please see my xoJane article linked above for more on those aspects), and more about (insert triumphant violin swells here) WHAT I’VE LEARNED from having a debilitating illness that I will have for the rest of my life:

Sometimes a “positive attitude” is not the best course–try to aim for a realistic attitude instead. I know that maintaining a “positive attitude” is all the rage these days, but for some people it is simply not a great choice. There is no faster way to make yourself feel bad about having “negative” thoughts/energy/whatever than to try to actively banish these thoughts by trying to “think positively” instead of, y’know, dealing with those negative feelings. Bad feelings are a part of life, and they need to be dealt with so you don’t end up making yourself feel worse by trying to wish them away. This is why I try to cultivate a realistic attitude–I have both good days and bad days when it comes to pain and fatigue, and I can acknowledge and work with that instead of stuffing any negative feelings down under the guise of being POSITIVE all of the time.

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Waiting

Note: This piece was originally written in 2006. I was diagnosed with fibromyalgia a few months after writing it.

I am grinding my teeth.

I know instinctively that I shouldn’t; it makes my jaw hurt and can often lead to a loathsome headache, but right now I have no other outlet.

I sit hunched over in an uncomfortable plastic chair. I’m dressed in old jeans and a sweatshirt that could use a washing, scanning the room like a hungry, angry buzzard on the lookout for a freshly dead creature upon which to feast. I am just that grizzled, as I have been for the three months I’ve been waiting for this appointment.

I started experiencing overwhelming fatigue and joint pain five months prior out of nowhere, and when I reached two months of feeling like I’d been hit by an SUV from the time I woke up in the morning until I went to bed every night, I went to my GP and asked if she could figure out what was wrong. Since a 20-year old presenting with unexplained pain and fatigue was out of her wheelhouse clinically, I was referred to a neurologist. Of course, he had a three-month waiting list.

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Beyond Human: The Heaven’s Gate Cult, Transhumanism, and Me

Heaven’s Gate was an American UFO religious Millenarian group based in San Diego, California, founded in the early 1970s and led by Marshall Applewhite (1931–1997) and Bonnie Nettles (1927–1985). On March 26, 1997, police discovered the bodies of 39 members of the group who had committed mass suicide in order to reach what they believed was an alien space craft following the Comet Hale–Bopp, which was then at its brightest.

–From Wikipedia’s entry on Heaven’s Gate (content warning on link for description of suicide and photos)

I’ve been fascinated with the Heaven’s Gate cult ever since I saw–as an 11 year-old–a huge photograph of the members’ dead bodies, apparently peacefully posed on bunkbeds,  on the front page of my local paper, under the rather alarmist headline (and all-caps) headline HOUSE OF HORROR. As I picked up bits and pieces of information on the group that the news media breathlessly reported throughout April and May of 1997, I began to wonder if the “house of horror” headline was overblown; yes, these folks had committed mass suicide, but they had also found people to whom they could relate and live with peacefully (albeit in a fringe religious group). Was that so horrifying? To most people–and to the media–it seemed like the answer was a resounding yes.

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Brain Drain: Chronic Pain as a Disability

Recently, the Tumblr blog Chronic Femmes–which positioned itself as a resource for chronically ill femmes–was the subject of controversy after one of its moderators answered a reader question by saying that it was important for people with chronic pain, chronic health issues, or mental health issues to not “[appropriate] disabled” when identifying themselves as chronically ill (along with some other problematic statements, such as one’s disability status only counts if that person can receive or currently receives public assistance because of their disability). Many Tumblr users with chronic pain and health issues took exception to this–although the moderator who wrote the response, Kendall, quickly apologized for her mistake, the incident itself demonstrates a common misconception about chronic pain and illnesses that feature chronic pain as a symptom–that neither are “really” disabling or debilitating.

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Skepticism and Chronic Pain: A Match Made in Purgatory?

I’ve been a lurker in the online skeptic community for a long time. I am also a feminist with fibromyalgia and several other health conditions (lifelong cerebral palsy and debilitating allergic reactions amongst them).

Whether it’s Dawkins-style puffery on which health conditions “actually exist” versus which are “somatization disorders” or, say, discussions of chronic illnesses that reduce said illnesses to strictly theoretical exercises instead of things (albeit misunderstood things) that impact peoples’ lives, there appears to be an unwillingness to make space for–and listen to–people with those very conditions.

Now, the notion of a skeptic and atheist with a “controversial” health condition will seem strange to some, and even stranger still because of the relative absence of skeptics with disabilities, chronic illnesses, and chronic health conditions in the online skeptic community. The feminist community — even online, where things like gender, ability, race, class, age, and sexuality supposedly “don’t matter” — suffers from similar problems when it comes to including and welcoming people with disabilities, as Neurodivergent K outlined in this excellent post at Feminist Hivemind. The old second-wave canard that women are physically strong is an unquestioned assumption in many modern feminist circles — and has the effect, unintended or not, of leaving out women with disabilities who are not strong or whose health conditions prevent them from being physical dynamos. The idea that chronic illnesses and disabilities like Chronic Fatigue Syndrome, Fibromyalgia and related pain/fatigue conditions are bad for the feminist movement–because women with these conditions apparently fulfill the stereotype of women as “weak” and fragile–has also gained some traction in feminist theory, most notably from feminist literary critic Elaine Showalter, who wrote a book in the late 1990s positing that CFS, Gulf War Syndrome and other “controversial” illnesses were media-spread, hysteria-driven epidemics comparable to alien abduction. Add to this the blithe unconcern that mainstream feminism has with disabilities of all kinds–and with women who have disabilities–and you’ve got a fairly unsafe environment for feminists of all genders who happen to have disabilities, or who think that (GASP) disability, chronic pain, and illness are feminist issues! After a while, it starts to look like current online “feminism” is only concerned about fighting for the rights of abled women–those without chronic pain, illness(es), physical disabilities, mental health conditions or who are neuroatypical. Thanks, feminism!

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