#hypermobile ehlers danlos syndrome | Explore Tumblr Posts and Blogs

crippledpunks · 30 days

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this is your daily reminder to stop being abusive and mean toward people with bladder and bowel issues.

im tired of hearing people mock those who struggle with bladder/bowl control, for people who can't tell when they need to go until it's too late or at all, for people who have uncontrollable voidings and leaking, for people who need to wear incontinence products around the clock, for people who need them influctuating amounts and need different kinds of products, for those who bedwet, for those who can't afford incontinence products so their clothes get dirty- to everyone with bowel and bladder issues.

we are human. we are still people. we are not gross, we are disabled. we are struggling with a disability. if you make cutesy posts about canes and wheelchairs, you need to include people who wear diapers, people who need plastic pants, plastic bedsheets and absorbent bed pads. you need to include people who can't tell when they need to go. people who need/use catheters. people who have colostomy bags. people with stained and dirty clothing. people who have to change their incontinence products in public.

you need to include autistic and ADHD and ND and disabled people who feel unsafe without diapers. you need to include people with spinal injuries and ehlers danlos syndrome and muscular control disorders with need incontinence products and feel safe with them. you need to include people who like their diapers and not just tragic stories where it's never discussed or doesn't negatively impact their life and livelihood.

please include all disabilities in your disability positivity posts, and please be kind and treat all disabled people with respect and humility, including those of us with symptoms you may find "gross".

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salt-baby · 5 months

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caught my younger sibling walking around with numb hands for weeks like that was normal so PSA theres some weak evidence that the following are common in POTS:

B12 Deficiency

- characterized by numb (pins and needles) hands and feet, which is persistent for days no matter what position your limbs are in

- take dissolvable B12 tablets once daily by holding them under the tongue for a couple minutes

- ideally those should be the like 2000000% DV ones, since B12 is water-soluble and near impossible to take too much of

- B12 shots can be prescribed for very severe deficiencies

- if this doesn't go away in like a week, See Your Doctor! these are peripheral neuropathy symptoms and that's something 1000% worth checking out ASAP

Magnesium Deficiency

- characterized by a tight kind of muscle soreness (for some reason always in my calves) that doesn't go away with rest

- others report tremors or being unable to keep the legs still

- either take a supplement daily or epsom salt baths

- be warned that oral magnesium works as a laxative, so start low and work your way up

Vitamin D Deficiency

- can cause fatigue and the "seasonal depression" kind of mood

- this is just really common in the general population, not just in people with POTS

- oral supplementation works fine, most daily vitamins have it

- in more severe cases your doctor can prescribe higher dose supplements

Also if you keep getting these symptoms all the time or it doesn't go away within a couple days of supplements, you probably need to see a doctor

#by weak evidence i mean theres like one doctor who observed this trend and it only kinda exists in research publications #but my personal experience is that i get these deficiencies recurrently #this is one of those things id classify as “not harmful if I'm wrong”#which is my litmus test for medical management without a doctor #all of these can cause fatigue and for anyone experiencing that its not a bad idea to try these #disability #ehlers danlos syndrome #chronic illness #postural orthostatic tachycardia syndrome #salt baby talks #hypermobile ehlers danlos syndrome #heds #oh yeah that dr is dr. alan pocinki in a talk for the edSoc on fatigue in eds

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cripple-council · 4 months

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thank u veterinary tape with dinosaur print for supporting my finger joints

#it’s so cute #cripple punk #crip punk #cripplepunk #physical disability #physically disabled #c punk #cpunk #joint instability #hEDS #hypermobile ehlers danlos syndrome #ehlers danlos syndrome #hypermobile #joint pain

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wheelie-sick · 4 months

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Basic dislocation/subluxation first aid

Keep in mind I am not a doctor, this is information I've gathered from medical sources and personal experience. I've done my best to link sources.

Some vocabulary first:

Dislocation - A bone is out of place to the extent that the bones are no longer touching

Subluxation - A bone is partially out of place but still touching the other bone

Dangers

When dealing with frequent dislocations and subluxations it's important to note that dislocating some joints is more dangerous than dislocating other joints. While all dislocations are medical emergencies some people choose not to go to the hospital for all dislocations and subluxations they experience however there are some that absolutely require emergency attention. In particular:

Vertebrae - Dislocating or subluxating a vertebra will cause a spinal cord injury. It's important that you seek emergency care to evaluate the extent of the damage and prevent further damage as severing your spinal cord completely can be fatal.

Collarbone - If your collarbone dislocates inwards it's important to seek emergency care to prevent further damage. A dislocated collarbone can cause life threatening problems with breathing and blood flow.

Knee - If your knee (not kneecap) dislocates it's important to seek emergency care as up to 40% of knee dislocations cause vascular injury that can threaten the entire limb if untreated

And while not all dislocations and subluxations are life or limb threatening all will damage your soft tissues in the surrounding area. A joint popping out of place is bludgeoning in all the surrounding structures in the process. That's why it's important to take care of your dislocations and subluxations correctly.

Improperly healing a dislocation or subluxation also poses its own risks. When dislocations and subluxations first happen the tissues holding the joint in are damaged making it easier to dislocate/subluxate a joint again. Not allowing these tissues to heal poses risk of additional dislocations and subluxations and can create a vicious cycle of tissue damage.

Reduction (Relocation)

Jaw

Vertebra - Go to the ER

Collarbone - Requires medical assistance

Shoulder

Elbow

Finger

Hip

Knee

Kneecap

Ankle

Toe

There were no available guides on reduction for wrists and ribs

What to do following a dislocation/subluxation

Reduce the joint

Apply a brace or splint to the joint. This brace will need to stay on for several weeks-months to allow the soft tissues to heal. This brace is more than a day-long commitment. Bracing is important because it stabilizes the joint while soft tissues heal and prevents further dislocations/subluxations.

Take weight off of the joint/avoid using the joint for 1-2 weeks. When people have been dealing with chronic pain it's easy to try to continue using a recently dislocated/subluxated joint. That joint needs time to heal and that healing will only happen with rest.

-> "I dislocate/subluxate joints so frequently that I cannot possibly do this"

I would make sure that what you're experiencing are actually dislocations/subluxations. A lot of people with disorders that cause subluxations/dislocations mistake ligaments and tendons popping for subluxations and mistake subluxations for dislocations. This causes people to think they are subluxating/dislocating many more joints than they actually are.

If you are truly experiencing that many dislocations/subluxations I would strongly recommend speaking to an orthopedist to discuss bracing and/or surgery for your joints.

If you aren't able to see an orthopedist it's still worth trying the above steps to the best of your ability.

#hypermobile ehlers danlos syndrome #hypermobility spectrum disorder #cripple punk #cripplepunk #physical disability #physically disabled

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lioncircus · 7 months

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I love my aids

#lionclowning #photo #my face #disability #disability aid #mobility aid #hypermobile ehlers danlos #hypermobile ehlers danlos syndrome #hEDS #postural orthostatic tachycardia syndrome #POTS

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weirdstrangeandawful · 29 days

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To any other disabled people who need to hear this today:

It's okay to prioritise your quality of life over the environment.

Use that paper towel if it will save you from having to do more laundry.

Use that plastic straw if it will stop you from choking.

Take that long shower if you need to slow down.

Throw your food waste in the garbage if you can't manage more bins.

Buy that pre-packaged food if it will allow you to eat.

Ask for that bag when you get takeaway.

Turn on all the lights if you need the brightness.

Leave the lights on if you can't get up to turn them off.

Throw out the mouldy containers if you can't clean them.

These decisions are hard enough to make for other reasons (financial, acessible, etc). Don't make them more difficult. There are other people who can make these decisions when the alternative won't ruin their life -- you don't need to ruin your life to compensate.

#not whump #chronic illness go brrr #disability go brrr #hypermobile ehlers danlos syndrome #postural orthostatic tachycardia syndrome #myalgic encephalomyelitis #chronic fatigue syndrome #fibromyalgia

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pale-plant-bones · 8 months

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Terrible / Incorrect Things Cardiologists Have Told Me While Pursuing a Diagnosis For My POTS

For context I have been fainting since age 12 (2013). A full decade+ of a ton of disabling and quality of life-altering dysautonomia/postural orthostatic tachycardia syndrome (POTS) symptoms, and knowing this is the condition I have + self treating for the last 5 or so years. And I am still formally undiagnosed and untreated.

“You’re just dehydrated.” (many times)

“You’re just anemic.” (tests said otherwise and no treatment was given because he knew he was wrong but wouldn’t admit it)

“This is normal for girls your age. You’ll grow out of it.” (it was not normal and symptoms only got worse)

“Well it’s not seizures so you’ve got nothing to worry about.”

“You need to cut down on the sugar. Don’t drink juice. You’re probably becoming diabetic because of kids’ diets these days.” (meanwhile, on a low sugar diet because sugar really worsens some of my symptoms)

“You’re just fainting because you’re scared. You need to go to therapy to learn coping skills.” (scared of what? I was fainting in P.E.)

“Don’t drink Starbucks every morning and you’ll be fine.” (I’m literally caffeine-intolerant, I never drink coffee)

“You’re just deconditioned. Exercise and you’ll be cured.” (3x. always after I already explained that I overheat and faint from any exercise)

“There’s no reason for you to experience these things.” End of discussion.

“People with POTS don’t faint, so you can’t have it.” (not only blatantly wrong but what about all my other symptoms? ignored. didn’t offer further help/explanation)

“I don’t think you have POTS, but just keep doing what you’re doing because that seems to be helping.” (referring to the self treatment I do that’s specifically tailored for POTS)

“Come back to me after you’ve got some therapy.” (after I had a panic attack due to his malpractice that took me weeks to physically recover from)

“You meet the criteria, but I’m not going to diagnose you.” (2x)

“You’re not allowed to use a wheelchair, you don’t have any disabling conditions.” Notes orthostatic intolerance on visit report

“It’s just because you’re not eating enough.” (after I already explained I constantly overeat to maintain my weight, and purely based on me being thin and not my diet)

“Your heart rate is supposed to go up when you stand up. The tachycardia isn’t a problem.”

“I don’t think you have hEDS.. you don’t have the symptoms. And so POTS is out of the question.” (hadn’t discussed anything about my hEDS symptoms, not his place as a cardiologist to determine EDS, and you don’t need it to have POTS)

Feel free to reblog with what you’ve been told. These doctors are so arrogant, they drive me crazy 🙃

#disabled #disability #chronic illness #chronically ill #postural orthostatic tachycardia syndrome #potsie #pots #potsyndrome #dysautomnia #orthostatic intolerance #heds #hypermobile ehlers danlos #hypermobile eds #hypermobile ehlers danlos syndrome #ehlers danlos syndrome #spoonie

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audhd-space · 2 years

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hypermobility thing : sleeping in odd position bcs it’s comfortable and waking up with pins and needles in one/some of your limbs

#hypermobility #autism #audhd #actually autistic #chronic illness #spoonie #hypermobile ehlers danlos syndrome

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salt-baby · 5 months

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very weird that I now work in a field where people keep correctly guessing I have EDS?

I start on the script like "I have a genetic condition that causes hypermobility and dislocations..." and people go "oh Ehlers Danlos?" and I just have to stand there and blink for a second like "...yes."

#disability #ehlers danlos syndrome #chronic illness #postural orthostatic tachycardia syndrome #salt baby talks #hypermobile ehlers danlos syndrome

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cripple-council · 4 months

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having a shoulder joint so unstable that it wants to pop out when i shift gears when driving is so fun! (it’s not)

#cripple punk #crip punk #cripplepunk #physical disability #physically disabled #c punk #cpunk #hEDS #hypermobile #hypermobile ehlers danlos syndrome #eds #ehlers danlos syndrome #unstable joints

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wheelie-sick · 16 days

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lately I've been having to wear a brace on one of my knees full time because I can't kneel without my kneecap wanting to pop out of place and I'm so fucking excited about my surgery

I am never!!! going!!! to have!! to deal!! with this!!! again!!!

like that makes me want to tear up honestly my patellar instability has been the most miserable part of my hEDS and miserable malalignment and I'm just going?? to be done with it??? forever???? never dislocate my patella again??

it's so relieving to know I'll be able to put this knee brace in the closet for an indefinite amount of time soon. that I won't need it.

I've spent so long being unable to put weight on my knees because of the damage to the tissue from all of my dislocations. every month or so I have major dislocation and I just can't keep up!!! but I'm going to be done soon!!! I can see the light at the end of the tunnel

#physical disability #physically disabled #hypermobile ehlers danlos syndrome #hEDS #miserable malalignment syndrome

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joint-hurty-juice · 1 month

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having like 5 mental illnesses is so fucking bullshit. there should be a limit on how fucked up your brain can be. and don't even get me STARTED on having like 5 mental illness AND a chronic illness. hell world hell world hell world

#and to top it all off! my psych wants me tested for adhd!#joint hurty words #chronic illness #mental illness #persistent depressive disorder #major depressive disorder #generalized anxiety disorder #obsessive compulsive disorder #excoriation disorder #hypermobile ehlers danlos syndrome #heds #ehlers danlos syndrome #chronic pain

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weirdstrangeandawful · 28 days

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I only just got my crutches less than 7 months ago... it feels too soon to be already looking into getting a wheelchair.

I don't need one... it would just make life easier sometimes. My friend (who shares the same insurance through our university) reminded me that it's covered up to $7000 every 5 years so it's no longer a decision between saving for a service dog and getting a wheelchair...

It just feels too soon... and not enough of a necessity (which I know is what I said about my crutches 6 months ago until I started using them and realised I need then every day).

#not whump #chronic illness go brrr #disability go brrr #forearm crutch user #wheelchair #postural orthostatic tachycardia syndrome #hypermobile ehlers danlos syndrome #myalgic encephalomyelitis #chronic fatigue syndrome #fibromyalgia

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dreamystarrycloud · 1 year

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Quick PSA:

Someone getting a mobility aid they need isn't "giving up", no matter their age.

If they say they need it, they need it and your "inspiration speech" isn't needed.

#mobility aid #mobility aids #hypermobile ehlers danlos syndrome #heds #ehlers danlos problems #chronic pain #chronically ill #postural orthostatic tachycardia syndrome #pots #my stuff

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