#craniocervical instability

[chronicsymptomsyndrome]

I know its kind of silly to say “don’t feel bad for canceling because of pain, fatigue, etc” because I know guilt is a reflex you can’t easily refrain from. But you can reason with yourself so instead I’ll say this:

Nobody can feel what you’re feeling but you. Nobody knows the severity of what you would be putting yourself through if you were to “tough it out.”

If you do “tough it out,” the purpose for you doing the thing will most likely not be fulfilled anyway. You probably will not be mentally present or engaged. You probably will not have a good time or get much out of it. Etc.

If people really have such a problem with it, thats a huge red flag. Being transparent about your needs and boundaries is a great way to weed people like that out of your life.

If you have any kind of chronic illness or disability, remember that you probably have a very warped judgement of what is “reasonable” to endure in terms of pain, fatigue, burnout, etc.

You didn’t ask for this, you don’t deserve this, there is no reason you should have to bear the weight of it alone. I bet if someone else was in your position, you wouldn’t mind helping accommodate for them?

Low energy days are truly sacred, take them seriously. Please respect your body’s signals. “If you do not choose times to rest, your body will choose for you” or however the saying goes

It is so much pressure to have to deliberate what sacrifices are necessary for proper self care. Give yourself extra credit for having to deal with that stress on top of whatever is putting you in that position in the first place. Thats a lot at once

You are leading by example and showing others that you would never expect them to hurt or overextend themselves for your benefit. Putting yourself first always inspires other to do the same.

Please be proud of yourself for even considering canceling and putting your needs first. That is so strong of you <3

[ontheoutside-lookingin]

Some chronic pain memes for extra hurty times

[unstablemotions]

Help Save My Cousin's Life 💜

My 25 y/o cousin Line, known as @nebulow online, needs for surgery for Craniocervical Instability (CCI). This is her last resort as she's been deteriorating fast. She's also diagnosed with Congenital Muscular Dystrophy (CMD), which will kill her if her CCI isn't treated.

Here's her Fundraiser

Any amount helps!! If you can't donate, just reblogging/liking this is a help 💜

[wheelie-sick]

October is Craniocervical Instability Awareness Month!

Craniocervical Instability (CCI) is a condition affecting the cervical spine. CCI happens when the vertebrae in the cervical spine are unstable, this can be caused by pre-existing conditions like Ehlers Danlos Syndrome and inflammatory arthritis as well as trauma to the C-spine.

Craniocervical instability typically consists of a mixture of musculoskeletal and neurological symptoms. Some CCI symptoms include neck pain, feeling of having a "bobble head," trouble swallowing, seizure-like activity, drop attacks, symptoms of dysautonomia, instability, poor coordination, tingling and numbness, vision changes, dystonia, and much, much more.

Craniocervical Instability can be diagnosed several ways. The most common method of diagnosis is a flexion-extension x-ray of the cervical spine followed by a rotational CT if the X-ray shows nothing.

Treatment for craniocervical instability includes physical therapy, neck bracing, and in severe cases, cervical fusion. Of these treatments, only physical therapy is without its problems. Neck bracing can lead to muscle atrophy and a worsening of symptoms so it should not be attempted without a doctor's supervision.

[autmnsun]

my best friend layla made a gofundme for her boyfriend, who suffers from very severe me/cfs (myalgic encephalomyelitis / chronic fatigue syndrome) and cci (craniocervical instability).

because of these illnesses, he might die. only two doctors in europe do surgery on me/cfs patients, who also suffer from cci, and they are located in spain. he will have to pay a special flight from italy, somewhere to stay and the surgery itself, and none of that is covered by insurance.

he is suffering so much. layla listed a few of his symptoms in his gofundme already, but the only thing he can (or is forced to) do is lie in a dark room with no stimuli AT ALL. no music, no light, no touch, not even being on the phone for too long, accompanied with tons of physical suffering as in pain or seizure-like symptoms. his suffering is not imaginable for people who don‘t have very severe me/cfs.

please read, share and donate. it‘s so very very urgent and a reblog would mean the world and could save his life.

[virtualmosshroom]

unblocked my nose and ears (mostly, for now at least) and wow i can hear every single movement and creak in my jaw and the base of my neck. Make it stop

[edsandco]

Shout out to my Occupational Therapist for:

Trading fun/weird facts with me.

Helping me out with using my metalsmithing skills to make myself ring splints and for being willing to combine the brace making stuff she has with the metal pieces I'm making to create what will hopefully be the perfect brace for me to wear while I crochet.

Never batting an eye at my weird goals or hobbies.

Listening to me!

I called my right arm my hammer arm today, and she not only accepted that statement but knew what I meant.

Already alerting the physical therapist I'll be seeing in late October to the fact that they need to work together to figure out getting me a wheelchair that fits better and that has a good back and cushion.

Trying to get insurance to start covering my compression wear so I can get properly fitted good quality gloves & sleeves.

Going down rabbit holes with me but also getting me back on topic eventually.

Making OT fun.

For not judging me for talking to someone else with EDS in the waiting room for like 20 minutes after my appointment.

Not being mad that sometimes IBS and/or ADHD make me late and for being understanding about the 2 last minute cancelations I had after I was covid negative but still struggling too much with fatigue to drive safely.

Giving me movie recommendations.

Lastly, for being great at her job and helping me meet objectives we set.

She's great even though penguin x-rays now haunt my dreams.

[chronicallyjax]

Saw the neurologist today! She was super sweet and listened to me really well. And she knows alot about hEDS and Dysautonomia!She says I have migraine with aura and also thinks I might have craniocervical instability. I'm starting two new medications (sumatriptan and nurtec) then next step is an MRI.

[chronicsymptomsyndrome]

Canceling plans with the same person twice in three days because of pain and honestly, I’m just so tired. I’m tired of pain running my life. Tired and angry

[the-autistic-system]

I know I've leaned my head too far (in any direction) when the angels start singing in my ears, thank you girlies for keeping me and my neck in check.

[fairymute]

some days (quite often), it feels like there’s a beehive in my brain. it’s intensely vibrating internally, there’s constant buzzing and static and it feels like bees are flying around in swarms and then burying in to my brain

[alanshee-keeper-of-realms]

Disabled cosplayers exist

Right now I'm working on hip pads for my Oswald the Lucky Rabbit cosplay to make my legs appear more anthro, and I'm doing it in while in a neck brace,

I have gotten a couple of comments of you couldn't have made that and this is why I take photos, video and advocate so I can show for myself at least that yes we can learn to adapt to make our cosplays,

Is it a bit more challenging, and does it take us longer? Yes, it certainly does because it wears on our body heavily, and we have to take frequent breaks so we don't end up hurting ourselves.

Disabled cosplayers are just as valid as those that are able-bodied

[saltymcsaltything]

My Neck Sucks

Current mood is "afraid to sneeze or cough because it makes my head feel like it is going to fall off, and not in a fun way"

Current physical condition: "recovering from some kind of upper respiratory infection that caused violent coughing and sneezing"

Current neck status: "we go pop, and sometimes the pop is 'ahhhhh, that's so much better' while other times the pop is:

Please send help

[feralgirlfromatl]

I wish someone would invent something that can help with craniocervical instability without surgery

[chronicsymptomsyndrome]

feels like I died last night

[crowpunkcognitivedecline]

prp vlogs 2 electric boogaloo

if you're wondering what prp is/about the original 'vlogs' you can find that here.

anyway, i got PRP again yesterday, this time at the C1-C2 junction. for this one, because of the difficulty of the location and higher risk level, i had to go in to the surgical center so they could do it under x-ray. i am now going to be wearing my cervical collar [neck brace] basically 24/7 for a week or two.

i was going to post about it right after but then i felt horrible and i still kind of do, so:

update #1 (~23 hours after procedure)

TL;DR: neck hurts when i move, throat hurts a ton period, and i can't lie down unassisted which is fun.

yesterday my neck was so bad that i couldnt go from sitting to lying down without assistance! i couldnt lean more than ~30 degrees in any direction without being in too much pain and having to straighten back up. i got around it when my girlfriend reminded me that my bed could help me lie down [so thanks, girlfriend].

i currently have an extremely sore throat and it hurts to swallow--but in a muscles-that-do-that-hurt way, not a throat-is-scratchy way. since the joint i had PRP in is directly behind the esophagus/right next to the swallowing muscles, i think it's probably just from the PRP. oh joy.

overall i dont feel great, but everything's going smoothly, it's just unpleasant.