#for the past twenty years for which I've had fatigue/hormonal issues might i add

[aikainkauna]

Fatigued? In pain all the time? The little-known illness that is far more common than we’ve previously thought, especially among geeks.

This is going to be a bit long, but it's so incredibly important, and so very much not just a personal issue that I hope you will read it (and hopefully, also share it). I'm choosing to speak about this now because this is an insanely unknown, disabling and yet seemingly a fairly common illness, and I want more people to know about it, especially as it affects geeks--geeky women in particular. I’ll talk about my own variant briefly at the beginning, but don’t stop reading there, thinking this is just a personal post--there are lists of symptoms and resources at the end that I urge you all to look at, because they are *frighteningly* common.

I and the doctors have finally found out I've got Ehlers-Danlos Syndrome.

Which means there is one, or there are several, genetic mutations in my body messing up the build of my collagen, collagen being the glue that holds your body together and which is found practically in all your tissues. So, technically, anything that can go wrong with your body might do *exactly* that, because that b0rked collagen is everywhere. This is why I've always been not only hypermobile (being good at yoga and able to bite my toenails and tie myself into knots while sitting down), but easily fatigued and have had trouble simply sitting, let alone standing or walking, because my muscles have to strain like crazy all the time to compensate for my connective tissues being too wobbly. (Every time I've participated in guided meditation, the exhortation to "sit up with your back straight, your body as relaxed as possible" has always been absurd to me, because I can't hold myself upright if I don't tense my muscles. Try it: lightly tense all the muscles in your body for a bit, and see how long you can hold that, and you will know what staying upright is like for someone with EDS). It's been said that having it is like the body having to do strength training with weights all the time, except, unlike on a normal person, the muscles never get to rest and recuperate fully (except during sleep, and even then perhaps not completely; to make it even more fun, sleep disorders are a common manifestation in EDS). I sprain things all the time--I do my back in even in my sleep, and get trapped nerves/sciatica just from walking; winter clothes, let alone bags, are exhausting for me to carry even for short distances. For me, lifting a coffee cup, due to the laxity of my connective tissues, requires the same amount of muscular exertion as it requires for a healthy person to lift a full pint. Et cetera. Plus all the other weird ailments, which I'll get to in a bit.

But the main reason I'm telling you all this is that you really, really, *really* ought to read up on EDS. The whole world does. But especially if you, or someone you know, suffer(s) from chronic fatigue and muscular pain and are bendy--*because it looks like this is actually the illness behind many (not all, but many) fibromyalgia and chronic fatigue syndrome cases.* I repeat, *this is now assumed to be the most common cause of fibromyalgia and CFS.*

And then there's all the other EDS-induced stuff, all freakishly common among geeks. Here’s a list of some of the most typical symptoms:

-Bendy? "Double-jointed?" Good at yoga (even without practice)?

-Gut problems/IBS? Leaky gut?

-Serious fatigue, unrefreshing sleep, body feels like it's made of lead? And is it unexplained by other conditions (such as a dicky thyroid or anemia)?

-Sleep problems, anxiety/panic attacks/PTSD, autism spectrum, AD(H)D?

-Bad PMS and awful reactions to the Pill and other progesterone preparations, health crashes after pregnancies, dysmenorrhea with godawful cramps (like you're giving birth to a demon baby every month), endometriosis, fibroids, pelvic pain and other gynaecological issues?

-Allergies by the bucketful? Multiple chemical insensitivities?

-Weird heart thumpages, blood pressure issues, fainting when standing up?

-Early-onset problems with eyesight?

-Can't go numb from anaesthetic, and/or are hard to put under for surgery (this is great fun)?

-Feel pain more intensely than other people (developing needle-phobia from horrid experiences when having blood drawn or being put on an IV drip)? Are all dentist trips and having gynaecological exams (even sex and wanking at times!) a nightmare?

-Or, as a bonus, has the weird pain response made you kinky or just crazily responsive to acupressure/acupuncture? Or just caresses?

-Have you got weird and/or excessive scar tissue formation? Keloids from piercings? Have your wounds healed badly; after surgeries, have your stitches torn spontaneously?

-Got hernias, squashed-up internal organs, including a heavy/tilted uterus, breathing problems like your lungs are squashed (but asthma inhalers don't seem to help much)?

-Weird bruises, and you have no idea where they came from? Excessive bleeding (including bleeding buckets during periods)? Varicose veins at a young age?

-Flat feet? Funny little round, soft bumps (piezogenic papules) on your ankles? Need sturdy shoes with high tops and arch support? Find it difficult or impossible to walk in high heels, due to wobbly ankles and/or the muscular strain it puts on the whole body?

-Constant sprains, muscle pulls/tears, dislocations, subluxations (=partial dislocations; just something going 'crunch', like when the bones of your hand or your vertebrae seem all scrunched up together and you need to pull them open), trapped nerves, monster headaches? Growing pains? Pressure in the skull?

-Just. Hurt. Everywhere?

-Weird adverse reactions to medications that are way worse than ordinary side effects, completely intolerable and/or causing permanent damage, even life-threatening situations?

-Even queerness/gender-atypicality (I am not joking; it goes with the neuropsychiatric profile)?

Guess what, they're all related to this exact damn thing! And just how common are they in fandom, among geeks?! Right? Weirded out yet? And this is *far* from being an exhaustive list, because again, this is a multisystem disease which can technically affect pretty much all your body parts and their functions. But if you said "yes" to several, take a deep breath and keep reading. Or if not, hell, keep on reading anyway, because it's likely you know someone with this thing--it could be as common as 5%-10% of the whole human population.

Even if you are born with this rubbish, people go undiagnosed for decades (I only got diagnosed at 38, and I’ve been sick ever since childhood!) and since it mostly affects women (although guys *can* be affected), it's ignored and/or psychiatrisised by doctors. And since the female body is a chaotic body horror movie anyway, many have just thought it's normal to always have little sprains and crunches everywhere all the time, and that the fatigue just has a merely neurological basis. That it's just depression or a part of having been born with XX chromosomes. But it isn’t.

And another main reason that it goes undiagnosed is the persistent myth that EDS *always* has to involve extremely stretchy skin and extreme hypermobility, which is categorically *not* the case for everybody. Even the sodding Wikipedia article (misleadingly) only uses photos of *extreme* hypermobility and skin stretchiness, of the usual circus performer contortionism EDS has traditionally been associated with but which is NOT WHAT YOU NEED TO HAVE TO HAVE EDS, I repeat, YOU DO NOT HAVE TO BE A RUBBER PERSON TO HAVE EDS; you only have to be bendy and exhausted and ill. There are some people with it who are even *stiff.*

Thousands, hundreds of thousands of people remain undiagnosed even if EDS/hypermobility-related illness seriously messes up their daily lives--it can be debilitating. So, please, do yourself and your friends a favour and spread the word, and check out these links.

When to suspect EDS (blog discussion, also linking geekiness to this thing):

http://ohtwist.com/when-else-to-suspect-ehlers-danlos-syndrome

An overview on when to suspect, by a specialist (Dr. Bravo, PDF format):

http://ohtwist.com/wp-content/uploads/2018/01/DrBravoWhenToSuspect.pdf

Good brochure:

https://www.chronicpainpartners.com/brochure/

Another overview from the same site:

https://www.chronicpainpartners.com/what-is-eds/

Hypermobile EDS diagnostic criteria, with pictures showing how the bendiness level is scored (see how many you or your friend can do):

http://edsresearch.weebly.com/the-brighton-score-and-the-beighton-score.html

Good infosite:

https://www.edhs.info/understanding-eds-h

Pictures of a woman with typical hypermobile EDS, which is far more common than the actual contortionist stuff, and thus goes unnoticed:

https://mastcellblog.wordpress.com/journey/edsphotos/

A good overview of the problems hypermobility can cause by a specialist doctor who knows what up. This made me pretty much scream at the screen because I have one of those exact types of insanely painful mini-hernias that some doctors don't believe are there because they are almost impossible to see with normal imaging, but which my gyn saw during laparoscopy (PDF format):

https://www.dynainc.org/docs/hypermobility.pdf

Why hormones, progesterone in general (contraceptives, pregnancy, PMS) screw up the hypermobile body and may cause serious damage:

http://hypermobility.org/help-advice/hormones-hypermobility/

The official site of the biggest, worldwide EDS/hypermobility organisation:

https://www.ehlers-danlos.com/

UK support, including a toolkit for GPs on how to handle EDS:

https://www.ehlers-danlos.org/

Finnish EDS association:

https://www.ehlers-danlos.fi/

More info in Finnish, but this also has an embedded video clip (old but neat and short) from US telly (in English) to illustrate a family living with the disease:

https://eds-group.vuodatus.net/lue/2018/01/mista-voin-loytaa-tietoa-ehlers-danlosin-syndroomasta

(Hey, where have I seen eerie, elongated moves by a tall, bony guy before?! Yes, there are variants, like with the related illness, Marfan Syndrome, where people basically Look Like Cesare.)

And last but not least, the brilliant Dr. Sharon Meglathery's RCCX theory, which ties up all those illnesses I and others have noticed clustering around sensitive/artistic/neuroatypical/queer/geeky/triggered by everything folks, such as hypermobile EDS, fibromyalgia, endometriosis, allergies, IBS, sleep issues, stress hormone (adrenaline, cortisol) issues, CFS/ME, oh, you *know* the type when you read it. It's like a list of the usual Tumblr issues, for crying out loud--she might as well have called the PTSD-prone psychiatric profile that underlines these specific gene weirdnesses as "Triggered By Everything." Only it explains the links to the severe physical illnesses as well, and how and why they relate to stress hormone overload and why, thanks to problems with progesterone and cortisol metabolism, the physical illness stuff screws geeky women over more often than it does geeky men. And you owe it to yourself to read it.

https://www.rccxandillness.com/

I don't often say this, but reblog to save a life. These are geek illnesses, *our* illnesses. There are forms of this stuff that are lethal (causing stroke and heart attacks and organs going boom out of the blue at a young age), and the amount of suffering it can cause is ridiculous--I would have lived my life in a drastically different way, and would have never got so ill from the wrong medications and life choices, had I known I had EDS. (Just don't call me a "spoonie;" I'm not a fan of that thing--I'll explain later. Call yourself whatever you like; however, I'm still a ridiculous arctic chicken just as I've always been.) But there are still thousands of people out there who have all these symptoms and yet have never heard of this stuff, and for whom this knowledge can be life-changing, so *please,* spread the word.

Thank you.

#disability #ehlers danlos #ehlers danlos syndrome #chronic fatigue syndrome #fibromyalgia #autism #i really don't often make posts about my illnesses but the fact that this is so undiagnosed makes me MAD #and even if you don't normally reblog my rambles this is *important* #if a geek on my level--who's researched her illnesses and nutrition etc. like crazy #for the past twenty years for which I've had fatigue/hormonal issues might i add #only finds out this late... it's insane #and yes. yes. connie was hypermobile #it's a toss between marfan or vascular EDS in his case *hysterical disbelieving laughter* #i wish he'd leave me alone but nope... #i mean it about the potential lethality too #my mum's mum died at 29 from her aortic valve going boom and orphaned my mum as a toddler :( #and they couldn't treat it then (in the 50s) even if they knew she had a heart murmur #i have to wait 6-12 months to get to the genetic tests to see if i have that variant:/ #but at least i'm going to have a heart ultrasound before xmas this year to check #still it's not fun to feel like a ticking time bomb #but please do read at least some of these/reblog bc this is common but 95% go undiagnosed