#just to discover now that I have hypermobility which is causing chronic pain | Explore Tumblr Posts and Blogs

zorilleerrant · 2 years

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in honor of disability pride month, some batkid disability headcanons for everyone (leaving out the PTSD. we know they all have PTSD.):

Dick:

ADHD (worse since the head injury)

dyslexia

night terrors

there’s part of his leg that he injured too many times in the same place, and he just can’t feel it anymore. it’s not paralyzed but all the sensations in his lower leg are just haywire

Babs:

I’m strongly of the opinion that her mobility is wildly variable; she still uses the chair most days and relies more on upper than lower body strength even when she doesn’t. her suits have built-in mobility aids to help her move her legs the way she wants

OCD. started Oracle as a coping mechanism

chronic back pain, chronic leg pain since her surgery

maladaptive daydreamer, but it’s unrelated to any of the rest of her neurodivergence so it freaks her out a little

Jason:

limited range of motion in his back, arms, and neck

chronic pain. used to be localized to the same place before the Pit, but now it’s kind of everywhere

anxiety of multiple flavors

part of his forehead is paralyzed, where the white streak is. not usually an issue, but sometimes he has trouble telling he’s injured

hearing loss - allover, but more in the upper range of his hearing. he can hear extremely high pitched sounds though, which unfortunately are also a type of sounds to give him panic attacks

vivid hallucinations: auditory, visual, and tactile

alcohol addiction

claustrophobia

because of the Pit, his tolerance to heat and cold has gone up, but his sensitivity to them has gone down, so even when it’s outside his range of tolerance he doesn’t notice and has to set alerts to remind himself

sleep paralysis

Tim:

insomnia. often leads to sleep deprivation psychosis

GAD. magical thinking related to this means he’s unable to reference certain topics out loud or written

phobia of horses

extremely touchy immune system, pretty much constantly sick. no one’s sure if he has low grade asthma or just another cold

Steph:

some kind of stomach problem that she figures isn’t actually a problem because she mostly eats fairly processed foods anyway, but it sometimes means she feels sick and can’t eat enough

extremely sensitive skin. constantly gets rashes if she wears the wrong clothes. subsequently afraid to change soaps etc.

but everyone can’t move their pinkies, right? I mean everyone can’t move their pinky toes, it’s the same, right?

memory problems of ambiguous nature

Cass:

trouble talking, yes, but actually has selective mutism on top of that. it takes a while for anyone to work that out

chronic pain, especially in her joints

hypermobility from all her training as a kid, which has also led to some of her bones not fusing like they should

ASPD. her extreme low empathy leads to her highly detailed ability to read expressions and body language, but also her difficulty in making the shift from acquaintance to friend

extremely low self-esteem and anxiety related to how people perceive sociopaths in society

lactose intolerant

Duke:

bad enough tree nut allergy he constantly carries an epipen

visual impairment he unconsciously compensates for using his powers, so hasn’t been discovered yet

sensitivity and lowered flexibility of one of his ankles, from when he broke his ankle as a kid

Damian:

every kind of attachment disorder ever proposed

hyperempathy, leading to difficulty in decision-making, impulsivity, trouble forming friendships, and love for pets

chronic pain in his spine, accompanied by loss of movement caused by the inflammation. sometimes uses a wheelchair

unrelated chronic pain in his hands and feet from repeated childhood punishments. exacerbated by carpal tunnel

phobia of snakes

fear of poison(ing) which would also be classified as a phobia except that it’s a trauma response

depression

extreme sensitivity to bright light, partial blindness caused by being raised mostly in low light environments

numerous food sensitivities and inability to deal with certain textures. very reluctant to try new foods

dyscalculia

#look i said something #batman #batfam #someone reminded me I made a post last year about how people should do more disability + fandom content so I made some

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doberbutts · 3 years

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I didnt know you had POTS! I'm a fairly recent follower. I have POTS too. In your last post you also mentioned EDS and CAH. I know EDS (i seem not to have it for now, tho i'm hypermobile too) but i dont think i've heard of CAH. What does it stand for? And, if you're comfortable answering, you qlso mentioned that having those three meant pain lasts for a long time. Why? Or, which one (or which combination) causes that? I've been watching myself for EDS for a while and i'd like to know if there's any other signs to look for.

CAH is Congenital Adrenal Hyperplasia, which is an intersex condition that my doctors told my mom I probably have at birth, that she chose to not pursue further testing or treatment except to try estrogen therapy which SUPER DID NOT WORK when other symptoms popped up further down the line. CAH is not normally found in female-bodied people with EDS so this is just one reason why we're having a hard time figuring out if I have one or the other- there are genetic overlaps within both dx's that can cause these symptoms without actually causing the condition, and covid kind of interrupted my seeking answers as an adult. I haven't been back to the doctor for non-emergency reasons since the pandemic began.

TLDR I probably either have one or the other but it's still unknown which. My money's on CAH just because of the circumstances at birth and the fact that certain sex characteristics of mine have never fit the definition of "female", again confirmed during an emergency room visit where we discovered one of my ovaries is Probably Not An Ovary, which can happen in any intersex condition and since I was supposedly flagged for one the second I came out of my mother...

As for why:

POTS can and does cause complications with pain, especially nerve pain. A growing pile of evidence suggests POTS itself is an autoimmune condition which means that any inflammatory trigger, be it stress from internal or external sources, or just because your body feels like it that day, will worsen your symptoms and also with worsening symptoms comes worsened stress and so it becomes a cycle that feeds itself. I see this most often with my monthly cycle, in which I am in severe pain and distress, trapped in a vomit-faint-diarrhea cycle for several hours with no escape.

EDS of course can cause fairly severe chronic pain, but is also worsened by the presence of pain and stress. Once again this means you can be caught in a self-feeding cycle of severe pain that simply crescendos without relief and that pain medication doesn't touch. Then you add that it's very common to see EDS with POTS...

CAH is not common (no intersex condition is) but is the most common of all intersex conditions affecting otherwise female-bodied people except perhaps PCOS, which varies on whether it "counts" as intersex based on the severity of the symptoms. Seen in less than 10% of POTS patients (which btw is still a huge number compared to the fact that intersex people make up less than 3% of the population of the entire world) but can cause hypermobility, syncope, arrhythmias, high and low blood pressure, hypoglycemia, and more (hmmmmmm sounds a lot like POTS and EDS symptoms)- one of the major tells of CAH is a severe intolerance to stress which can lead to a lifethreatening situation as the body completely destroys itself from the inside. This means that CAH patients need more painkillers, more aggressive treatment, and more monitoring to ensure that their bodies do not just up and quit the second they're in too much pain. Their bodies cannot release enough of the hormones that allow them to deal with even mild forms of pain, so that means that pain is acutely felt and also that it does not go away or become ignorable for quite some time. Which also slows and severely complicates the healing process as the body tries other means to protect itself from further injury.

Humans heal... poorly... when under severe stress or when feeling severe pain. A lot of people have disparaged the use of painkillers, especially opiates, by saying that you just need to toughen up. This is dangerous advice, because many syndromes that require a higher dose of pain medication or more aggressive pain management will literally result in that person's injury or illness becoming way more severe than it needs to be. Even people who do not have these types of syndromes are shown to have slower healing times and worse end results if pain is not managed appropriately. Pain causes stress, and stress interferes with the entire rest of the body because the body wants to fix the source of the stress before anything else. Stress also activates your fight-or-flight response (which is why it's SO BAD for the three dx's above) which also means that your body is not given a chance to truly rest, which is honestly the only time your body has to actually heal rather than focus on keeping you alive and awake.

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glamzerypink · 4 years

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sick of being sick and dealing with a doctor who is a prick.

i hate having hyper mobility syndrome. you literally dont get help for it. you get semi diagnosed with what they think is going on and dismiss everything you say. they barely educate patients because they dont know themselves. theres a condition named EDS which is didnt know about until years later which explains how i feel ten times more then the hypermobility diagnoseses. then i discover theres a hypermobile type and various others that are sometimes even fatal. yet my doctor just said i need physio. i wasnt checked for fucking anything! when i complained i was only tested for stuff normal people have. sore bowels - must be your diet feeling chronically fatigued? - you need more sleep sore joints? you must not exercise or something? dislocations? youre not doing enough physio therapy cant eat? maybe your lactose intolerant or something.. lets look into these. Completely missing the overall issue that is causing it all, a lack or deformity of collagen in my chromosome. My connective tissue is like gum and once it gets pulled i cant tighten them, this is what happens when the joints move. they move so much over time its a floppy mess filled with ache and pain. The human body has 360 joints. i am effected everywhere all day every day, i do not get a day off i do not feel a sense of relaxation like i once did. my whole life was turned upside down and the only person who was truly going through it with me was my poor mum who also hadnt a clue what was happening to me. my childhood i was a crazy kid, i used to be the most daring things and be super active. i loved sport and adventure. i always wondered how old people had no energy and what that would feel like not realising years later id be feeling chronic pain 24/7. i over worked myself a lot. in highschool i worked after school and the entire weekend for two years. if i wasnt at work i was studying at school or doing sport. if i had work off i would play basketball. i would miss meals to go see friends and catch up with them and i never stopped for anyone. i felt like my life was a big flip when i became weaker and weaker. my mind still obessed with getting on with life but my body attached to the bed.

no one has ever learnt what that was like for me. i was so confused. i remeber the day i woke up and was getting ready for school i felt sick but ignored it. i then walked to my dresser and began peeing myself. i tried to clean it up and continue like nothing happened. i then brushed my hair and it felt like a bag of sugar in my hand. i sometimes laid down and brushed my hair on my back. my bowel movements made me feel like i needed to go all the time and i felt very sick. i began sleeping a lot. like a lot. id get home and wait for dinner and fall asleep to TV. id have long days then sleep for 14 hours without fail.

but everyone around me just thought i was sick and would get better. i had arguments with my mum about being pregnant and with my teachers because i said i felt sick so much and especially in the mornings. id suffer a gag reflux and a sore digestion. no one understood. id have good days and bad days and i would confuse people around me. id get so hot id pour bottles of water over me. i would have issues with stairs, opening bottles and cans, lifting my plate, cooking, going to the bathroom, driving, moving in bed, sleeping, eating and literally everything. i dont remember what its like to not be in constant pain. i have been adapting to this pain since i was 14 and i am now 21. i am sick of doctors not listening to me

i want to tell you if you got this far that you are very valid in what you want to say to a doctor. that what you think happening is vital to finding out. without you their wouldnt be an issue. i encourage people to look into things themselves with an open mind and discuss these thoughts and findings with your doctor. i have spent a lot of time and money dealing with doctors who treat me the same as an abled person and forget i have a connective tissue disorder that effects my entire body functioning. doctors will say hello and not even look at your history. you need to educate them on your specific needs and be firm. i was always so stupid letting my doctor convince me it was because of my diet or drinking alcohol when really he was too lazy to refer me. he told me “listen there are people in the waiting room and i need to type this up, i dont want to do this now” he said he would do it in the weekend and ignored all my calls and opinions. he told me nothing was wrong. i have now found a new doctor in the same clinic and he has pushed for me to get a colonoscophy. im so excited and nervous. what annoys me is if my doctor educated himself on my illness and how it relates to ehler danlos syndrome, and that they have bad bowels, blood issues, heart issues just like i do, yet cant check it out for me to be tested? i do not understand this stupid world of doctors why EDS and Hypermobility syndrome gets so pushed away. We know we are a lot to deal with but no one cares about the fucking pain we are in.

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dazzlingzebra-blog · 7 years

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(via A "Dazzling Zebra") After years of strange symptoms, mounting chronic pain and fatigue that have especially worsened over the past months, lots of doctors, even more tests and treatments, and lots of exhaustion, I was finally diagnosed with Hypermobility Ehlers-Danlos Syndrome (EDS) earlier this month. And let me tell you…it was an adventure getting to that point. I am SO tired of wrong diagnoses, so, in a way, this is a relief to know what is “wrong with me.”

“I never heard of that…”

First time I heard of Ehlers-Danlos was when my rheumatologist said she thought that’s what I had…she made me do many more tests and ran a full diagnostic to confirm that I had hEDS (hypermobility type).

Apparently, most people, even most medical professionals, also haven’t heard of EDS. The Ehlers-Danlos Syndromes are genetic degenerative connective tissue disorders where our bodies either produce collagen incorrectly, or never produced enough collagen in the first place. There are 13 types of EDS, and symptoms among them can can all vary, but many include: severe chronic pain (due to the body working extra hard to keep all our bones and extremities together without the help of collagen), frequent dislocations and/or subluxations, tendency to bruise or injure very easily,”stretchy” or velvety skin in some of the EDS types, hypermobility in a few of the types (including the type I have—hEDS), scoliosis, flat feet, long arms, legs, and/or torso, postural orthostatic tachycardia syndrome (POTS), extreme fatigue, irritable bowel syndrome (IBS), migraines, tension headaches, premenstrual issues, and many other complications.

(Funny side story: when the rheumatologist was explaining all the possible symptoms and complications of EDS (and why she thought I had it), I fainted on her…probably due to the POTS that is caused by EDS. So that of course led to even more annoying tests! C’mon body…work with me here!)

Anyway…I have all the symptoms listed above (except for the stretchy/velvety skin), and have had many of these since I can remember: migraines, tension headaches, and “growing pains” since I was in elementary school, fainting spells (not knowing I had POTS) whenever I stood up too quickly or moved too suddenly since I was about 3, ear infections left and right when I was little, super clumsy (my nickname was Klutzkowitz)…and a “cool” feature to gross out your friends when you’re younger: I’m double-jointed and can make my elbows connect behind my back haha…but I never knew that was actually a “symptom” of a larger condition.

For three decades (eek, when did I turn 30??), doctors had been diagnosing me with various different ailments and issues, often with wrong diagnoses—making me always think I was such a gangly, awkward, and sickly kid (and leading to some people, such as my father, thinking I’m a hypochondriac…but he’s an a**hole—so really I should’ve never let his opinion count), rather than realizing I had one condition that was the cause of all of these issues.

I also find out that this condition is chronic, has no cure, and that symptoms will likely increase or get worse with age. I am trying different treatments for the pain, meditation for my stress, and daily weight-training to help my muscles keep my body strong, and help it to take off the stress of the muscles keeping it together.

So, I’m having mixed feelings. On the one hand, I now finally know what is going on with me, and can find online support, resources, and I can find the right exercises to finally help and not hurt myself physically. On the other hand, it is chronic and genetic, so it’s not going away, and it’s rare—I don’t know anyone else in person with this disorder, and most people I speak with never heard of it.

There is hope…

I found quite a few support groups and resources online. Apparently people with EDS has a super active online community—a type of family…which is awesome for me, because I love anything “tech.” I discovered we’re often are called “zebras.” Personally, I like it, not just because zebras are awesome animals, but also for the explanation behind the name.

Why zebras? I liked this response the best from ehlers-danlos.com:

“Why the Zebra?

People with the Ehlers-Danlos syndromes and hypermobile spectrum disorders (HSD) often identify themselves as zebras.

Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.

But many of us spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it.

So the zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare. Hypermobile spectrum disorders are common, but are unexpected because they remain misdiagnosed or under-diagnosed.

When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical. We have different symptoms, different types, different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD.

A group of zebras is called a dazzle.

We are a community of individual zebras, we are stronger together, and we dazzle.”

Life may continue to be hard, and EDS is going to give me a rough road…but this little zebra isn’t going to give up—I’m going to dazzle! 😉 *Jazz hands*

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