#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

[thebibliosphere]

I made it to 31 days migraine-free until last night my neck adjusted and pinched a nerve. It’s not too bad. I took a Tylenol to take the edge off, something which was previously unheard of for me. Normally no amount of otc painkillers helped.

There’s also likely a hormonal fluctuation at play. My menstrual cycle is due, and that monthly spike in hormones always makes my hEDS so much worse. Hence my neck adjusting by itself and cronching the nerve. Which was honestly more painful than the migraine itself has been.

Part of having binocular vision disorder is constantly tilting your head from side to side to try and keep your eyes in focus.

Since getting my glasses, I’ve been “weirdly still.” I still fidget and move because ADHD, but I’m no longer doing a constant “confused puppy” impersonation as I tilt my head from side to side to keep my eyes in focus.

I’m realizing now that this has likely greatly helped my craniocervical instability, and I’ve not been pinching the nerves in my neck so much.

If this is true, and my hormones become my main trigger—both for the migraine itself but also contributing to other factors like joint laxity and worsening my craniocervical instability—then that means I can better target my physical therapy, but also take preemptive precautions in the week running up to my monthly cycle and brace my neck to prevent the joints from moving around as much and pinching the nerves.

This is another potentially life altering revelation and I’m not even mad my 31 day streak got interrupted. Because I had 31 days migraine-free and that’s something I haven’t been able to say in over a decade, and if it comes to it, I’ll gladly take 1 migraine a month vs 20.

Anyway. I’m going back to sleep for a bit. I just had to jot this thought down in case the migraine gets worse and I forget.

[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.

[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.

[coulsonlives]

Real talk for a moment. Today I was looking on youtube, and I came across a video that was hm... highly sus.

In this video, a doctor claimed that he could treat very specific airway problems with something called "prolotherapy". And immediately, red flags went up because I was like, no... those specific airway problems happen because of nasal, jaw, or soft tissue structure issues. That's not something an injectable substance can cure.

Then I saw the rest of their channel and my jaw dropped.

In these 3 screenshots alone, here's a list of everything this quack claims to cure with "prolotherapy":

Cervical instability

Knee instability

Elbow instability

Knee injuries

Osteoarthritis

Being wheelchair bound

Big toe/bunion pain

Upper airway resistance syndrome

Vagus nerve degeneration

Lower back pain

POTS

Snapping scapula syndrome

Pes anserine bursitis

Thoracolumbar syndrome

Trigeminal neuralgia

Achilles tendon pain

Post-concussion syndrome

Seizures

"Atlas misalignment" (chiro stuff)

Wrist instability

Carpal tunnel

Scoliosis

If you're familiar with at least a few of these things, you'd know it's way more complicated than injecting some miracle cure into those areas. He also centers a lot of his videos around "cervical instability", which he attributes to causing all sorts of stuff:

Visual snow

Migraine

Itchy arms

White matter lesions

Dissociative episodes

Seizure disorders including absence seizures

POTS

MCAS

(Etc)

And he also uses terms that, if you google them, show up exclusively on his own website and nowhere else. One of the terms was cervical "dysstructure".

So um. Friendly reminder not to get sucked in by charlatans like this who claims to have a cure for a stupid amount of unrelated illnesses. You're just gonna get bilked out of your money, and you might even end up worse than before. These people prey on your desperation, and they're really good at it. Someone documented their experience with this "doctor" here. Reddit and other sites are full of negative reviews about him. Many people call him a scammer.

Don't let these quacks win. Do your research and take a breath before throwing money at them.

[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

[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

[phoenixisazebra]

Considering my name is PhoenixIsAZebra, I figured I would explain what the significance of the zebra is to me and why I have them all over the place since I've been asked a number of times in my life now. 😆 I copied and pasted this from the Ehler's Danlos Society's website since they say really do say it best:

Why the zebra?

People with the Ehlers-Danlos syndromes (EDS) and hypermobility 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.

People with rare and chronic diseases spend years searching for answers:

“But you look normal”

“You’re too young to have so many problems”

“You’re too old”

“You can’t have that, it’s too rare”

“No one knows what that is”

The zebra became our symbol because those with Ehlers-Danlos syndrome and hypermobility spectrum disorder are the unexpected. “Sometimes when you hear hoofbeats, it really is a zebra.”

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 [and] we have different symptoms, different types, and different experiences."

So there you have it! As someone who suffers from Ehlers Danlos Syndrome and a vast number of comorbidities, that is why this Phoenix is a Zebra!

Zebra hand drawn by Phoenix on iPad app, Procreate.

Follow me on Tumblr, Instagram, TikTok, and Facebook @PhoenixIsAZebra for more about my health journey, art, writing, and more!

[feralgirlfromatl]

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

[wheelie-sick]

craniocervical instability inspired artwork

[image ID: a digital piece of artwork drawn with the pencil brush featuring a cervical spine wrapped with thorny vines. two red flowers are growing at the top of the spine. the piece is uncolored with the only colors coming from the green lines for the vine and the red lines for the flowers.]

[starsandhedgehogs]

How did you get diagnosed with Craniocervical Instability?

I’m pretty sure I have it (I have EDS and my vertebrae already are subluxing, then I’ve started with the skull and a dizzying array accompanying symptoms roughly from tingling, numbness -in forearms, down spine and into head, little and ring fingers and knees- and neck and back of head pain to inability to turn my head, trigeminal nerve irritation, crackling in right ear, abnormal gait and feeling of the head not being stable on the spine) and it has become significantly worse this past week due to my monthly progesterone rise (I’m allergic to my own progesterone rises after a significant change in bleeding that has been ignored by doctors - rash, breathing difficulties, feeling like I’ve overdosed on meds) and the EDS has been reacting violently to it this past year (new and rare subluxes and dislocations in weird joints that only happen at this time of the month), but A+E isnt great when you have ME/cfs and just going will put me in bed for a week.

The last time I went to A&E, they misdiagnosed Endometriosis as ‘non-infective gastroenteritis every month’ (which is weirdly the infection that caused my ME) despite me telling them as soon as I showed up that it was the Endometriosis and my bowel being pretty much dead again and no amount of anti-emetics would work (they hated me being right about that).

Basically, it’s a huge waste of time but I don’t know how to explain it to my doctor in a way that is dumb enough for them to not get offended by me actually daring to try and do some helpful research before my appointment (but this is looked at as, I quote, ‘strange family health beliefs’), which I have never been wrong about in over 20 years! Anyway - if I act logical and sensible, they’ll think I’m ‘an extremely anxious young woman’ so it’ll get me nowhere.

I am in a lot of pain with the back of my head and neck but have no access to appropriate pain relief because I have been told ‘all painkillers are placebos and the only form of pain relief that works is a talking therapy’ and have been flatly refused painkillers when I repeatedly asked again. The only thing that seems to ease the symptoms is sticking a toilet roll between my chin and collar bone, which eases all this pressure but the doctors will think that’s nuts! Any advice on how to approach a diagnosis or even something that might help with the symptoms when your doctors are moronic arseholes would be so helpful.