#miserable malalignment syndrome

[wheelie-sick]

while I'm in a rotational difference ramble spree let me share something for people with one:

You are not obligated to get surgery ‼️

doctors, the people around you, and even other people with a rotational difference will try to pressure you into it. you don't have to go through with it

if you're old enough to be on Tumblr that surgery is experimental. they do not fully understand the benefits for people who get the surgery late. it is often cosmetic and aims to make your legs look "normal" instead of functional. that surgery requires breaking your bones in several places and putting them back together. you have to relearn to walk. it takes a year to recover. people often still have chronic pain afterwards. it is a major surgery that they will try to sell you as something simple.

if you want that, if you feel it's worth it to you, then absolutely get the surgery but you don't have to.

make your decision for yourself, not other people. know there are other options like bracing and mobility aids that can give you just as fulfilling of a life.

[cripplecharacters]

Hello! I hope you having a good day, I just had a question that I hope is ok.

Is there any condition that would make it difficult to walk long distances (sometimes using a wheel chair, sometimes crutches) but doesn't affect the hands/arms at all? I'm working on a concept for a character and was wondering about making him an ambulatory wheelchair user since it's not something I see often in stories, but he's also a musician mainly playing stringed instruments and I don't want that to become painful for him.

But I wasn't sure if that was something that could exist and I wouldn't want to write it that way if it's not

Hello lovely asker!

So here is a list of conditions that don't (or sometimes don't) affect the upper body and can be ambulatory conditions.

Conditions that physically effect the lower back/legs:

Lower extremity amputation

Congenital lower body differences - Foot, ankle, knee etc. (Club Foot, Miserable malalignment syndrome etc.)

Sacral Agenesis

Monoplegia

Leg injuries

Cartilage Damage/Injuries

Spina Bifida

Arthritis

Incomplete Paraplegia

Leg length difference

Ankylosing Spondylitis

Multiple Sclerosis

Hypermobility

Hereditary Spastic Paraplegia

Posterior tibial tendon dysfunction

Complex regional pain syndrome

Conversion disorder

Brain Based Disorders:

Epilepsy (drop epilepsy, myoclonic epilepsy etc)

Diplegic Cerebral Palsy

Narcolepsy (often with cataplexy)

Chiari malformation

FND

PANDAS

Tourettes/tic disorders

Autoimmune Encephalitis

Heart/Respiratory/other etc.:

Vertigo/POTS/other conditions that cause syncope/dizziness

Respiratory Conditions (COPD, etc)

Heart Conditions

Conditions that affect balance/increase fall risk

Post polio (and other diseases)

Psychosomatic Paralysis/Pain/other ailments

This is just a rough list of what we could all come up with, there are many others that have gone forgotten, but that's for you the writer to do more research on too. One thing is a few of these conditions can affect the hands or eventually progress to effecting the hands, arms, and/or even the upper or lower back.

Depending on what type of instrument they play will also factor in. Playing posture is different with every instrument, as well as the weight. And some instruments like the Viola Da gamba does require leg strength. If the character is classically trained also, it makes a difference in etiquette. I am (was technically) classically trained and if you have pain of any kind you're told it doesn't matter, you're told to play through the pain and keep going. To suffer for your art is still the prevalence in the classical world. Excruciating pain? Keep going. Cut open your finger on something? Keep going. It's not good, but it is the reality of it, unfortunately.

Also I will mention that don't be afraid to choose another condition that does affect the character's upper body. A lot of disabled musicians have a variety of conditions and simply exist and play music. But also even though the character might have a condition that mainly affects the legs, if pain is common with the condition you choose, this still will affect the character playing. Being in pain even if it's not in your arms or back can be very distracting and will throw you off.

And one last thing! Please don't write this character "Overcoming" their disability to play music. I would research disabled musicians (Itzhak Perlman is the first one that comes to mind for me) and even—if called for—adaptive technology for instruments or how people have adapted their instruments/music to them for more accessibility.

Alrighty! Happy writing! I hope this helps some!

~ Mod Virus 🌸 (and a very thank you to Mods Sasza, Rot, Bert, & Patch for helping me with the research on this)

[mariekavanagh]

One of my knees tried to dislocate this morning, two years to the day since my last major flare-up, on the same knee.

Spooky.

[bleureux]

Since July is disability pride month, I want to take the time to make myself visible and talk a bit about my disability ✨

My name is Alex, I’m 22 years old and I use a cane almost every day. I was born with a deformed pelvic bone, which caused the bones of my legs to rotate inwards during puberty. This condition is referred to as miserable misalignment syndrome (or miserable malalignement syndrome), though it’s more of an umbrella term for rotational leg disorders/injuries. In my case, it’s genetic, and somewhat incurable.

Because of my disability, I have daily and constant chronic pain. It puts enormous strain on my hips and knees, so I am prone to injuring them. In fact the cartilage in my right hip has been damaged for years now. I also have poor balance and tire easily, as well as frequent painsomnia. On some days I’m even bedridden.

It took me years to accept my body for what it is and to stop viewing myself as grotesque and deformed. I am still fighting off the feeling that I’m a burden to others, to accept that I’m “ disabled enough” to receive accommodation, that I’m not faking it, because on some days I can walk on my own; that I’m valid. Being disabled doesn’t make me less of a person, and it sure as hell doesn’t mean that I’m not capable of having a good life. This is something I wish I could of told my 15 year old self who just got diagnosed, like “hey buddy it’s gonna be ok, you are valid, you are loved, you are beautiful”.

So that’s that, my name is Alex, I’m 22 years old, I’m disabled and I’m beautiful

[races-erster]

Hi!!! I have chronic joint pain too, although mine is throughout my body! The only thing diagnosed that I have right now is miserable Malalignment syndrome but it doesn’t account for all of it. :) and yes that is the real name

Hey hun!! I’ve never heard of that syndrome before, but it seemed very interesting when I looked it up. I know how hard it is to have to deal with chronic pain, so if you ever need a friend who can somewhat understand what you’re going though, I’m always here! Much love 💕

[wheelie-sick]

single handedly increasing the number of people with a rotational difference diagnosis by being incredibly open about mine

[ID: a fictional soldier turned to the camera shouting enthusiastically "I'm doing my part!"]

seriously though if you walk severely duck footed (feet pointed out) or pigeon toed (feet pointed in) and/or your kneecaps turn in or out when you stand with your feet straight and/or you can't walk with your legs and feet straight at the same time.... go to an orthopedist there is a strong chance you have a rotational difference

it's not always a rotational difference. other orthopedic conditions can mimic rotational differences. keep that in mind before self diagnosing.

[cripplecharacters]

What else can cause a person to need a wheelchair that isn't physical trauma, a degenerative condition, or outright paralysis?

Trying to figure out the specific disability of an ambulatory wheelchair user character (who isn't supposed to get any worse, and who's supposed to live very long).

Thank you for your ask! People can use wheelchairs to help with dizziness, weakness, unstable joints, conditions that cause fainting/falling, being born without one or both legs, fatigue and/or pain.

Some conditions off the top of my head are:

Miserable malalignment syndrome

Bilateral peroneal neuropathy

Nail-patella syndrome

P.o.t.s. (postural orthostatic tachycardia syndrome)

Congenital constriction band syndrome

I’d recommend using one or more of the keywords in the first paragraph for your search for a condition that fits your character [example: condition that causes leg pain, disability with unstable joints, etc.]. If you need to narrow it down further with a more specific ask, feel free to reach out again :] (smiley face

Have a lovely day!

Mod Rot

[unenthusiasticorgasm]

All great points but I'd like to add my own two cents here. I'm British. I live in a land of universal healthcare. But it is also an overstretched and underfunded system. When I was 15, I started getting pains in both my knees. They would swell up after a day's walking, would be prone to clicking out of place and would be generally a pain. I went to the GP 3 times before they took me seriously. I was told it was growing pains. I was told they wouldn't refer me because "I shouldn't have men touching my bare legs". All, I'm sure, in an attempt to avoid sending me for an expensive MRI scan. When I eventually was referred, this took 2 months for an appointment to be given to me. Following the scan I waited 3 weeks for the results. I was the referred for x-rays. A wait of another two months, followed by more waiting for results, followed by yet more waiting for an appointment with the orthopaedic to discuss my eventual diagnosis of Miserable Malalignment Syndrome. The process from my first visit to the doctor to diagnosis was almost exactly a year. I'm only thankful my diagnosis was not a progressive one. Universal healthcare has it's faults. The NHS is buckling under it's own weight and I fear that experiences will only continue to worsen as time goes by.

I get really confused when americans, when talking about universal health care are like ‘yeh but it’s not free sweaty :) :) you have to pay it through taxes :) so gotcha!!’

and I’m like ….???? That’s the whole point??? Everyone pays their fair share so that no one has to be turned away because they don’t have insurance??? And no one has to set up a Fundraiser page just so that they DONT DIE???? So people don’t put off going to the doctor because they’re scared of going bankrupt?? Because healthcare is a RIGHT and should be free at the point of access?!?

[wheelie-sick]

walk through the Bosque

[ID 1: a photo taken from the ground of a man with half shaved black hair leaning on a crutch with a river in the background. he has one hand on his hip. he is wearing a black crop top that says "dead inside," black booty shorts, and fishnet leggings.

ID 2: a photo of the same man taken from below. he is sitting on a large toppled cottonwood tree.

ID 3: the same man, this time sitting cross legged on the ground with a river in the background. he is sitting beneath two metal poles that form a triangular arch.]

it was a fucking struggle😓 I should have taken two crutches (a mistake I continuously make) and my legs have just been awful lately. they love to try to give out but I've gotten good at pacing myself. I didn't get totally stranded like I've done in the past.

[wheelie-sick]

I got approved by gait analysis to do my patellar stabilizing surgery without the derotational osteotomies!!!! 🎉 gait analysis thinks it's mild enough that the surgery will work without the derotational osteotomies!!!! 🎉🎉 this wasn't all for nothing!!!! 🎉🎉

[wheelie-sick]

Miserable Malalignment Syndrome

---- the disease with objectively the coolest name

I wanted to share some awareness about my limb difference, miserable malalignment syndrome (MMS) so I decided to create a post talking about it!

MMS is a rare rotational deformity affecting the legs. rotational deformities are a category of deformity in which a bone, or multiple bones, are inappropriately rotated. MMS is a condition where both the femur and tibia are rotated in opposite directions, and more specifically, where the femur rotates inwards (femoral anteversion) and the tibia rotates outwards (external tibial torsion) MMS most frequently affects a single leg but can be bilateral.

people with MMS typically appear knock kneed, bow legged, and duck footed with a squinting patella.

MMS typically causes severe pain in the hips, knees, lower back, and in the ankles. MMS is also associated with patellar instability, scoliosis, and early onset osteoarthritis. pain from miserable malalignment is often described as being similar to having knives in your knees.

MMS is most common in children as this condition sometimes naturally corrects itself. other times, MMS can be changed with a surgery called a derotational osteotomy. while many people with MMS choose to undergo this surgery many people also opt out of it.

[wheelie-sick]

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

[wheelie-sick]

Thanks for making that post on rotational differences! I assumed my knee pain, my knees feeling like they’re about to dislocate, my knees facing inwards when I stand and facing out when I place my feet out, etc. was just due to hypermobility. But now I’m not so sure. Is MMS something you can self-diagnose? I might want to bring this up with my doctor but I can’t be sure he knows what rotational differences are. I have a general hypermobile spectrum disorder diagnosis at the present.

yeah that's not hypermobility at the very least. hypermobility does not affect the way your kneecaps face (unless they are actively dislocated but that's a different situation)

I'm personally of the opinion that self diagnosing a rotational difference is fine with research. there are several lower limb rotational differences that can all look rather similar at a glance so it's important to familiarize yourself with all of them and their presentations first. from my understanding, MMS is the rarest lower limb rotational difference. in my opinion it's also the hardest to self diagnose because it's two rotational differences combined.

[wheelie-sick]

I would rather use a wheelchair forever because my cartilage dies, I would rather get a knee replacement, than get an experimental surgery where they break 4 of my bones in multiple places and reassemble them forcing me to relearn to walk after a year of recovery.

[wheelie-sick]

My Gait Lab/Gait Evaluation Experience 🚶

I couldn't find anyone else documenting their gait lab experience so I wanted to share mine

under a cut cause this is long 😭 I like giving detailed explanations because I appreciate them so I included all the details

my gait eval was done for a potential future surgery to gather information on my limb difference (miserable malalignment syndrome), if you're having your gait eval is happening for another reason it might look different. I had my gait evaluation done at the gait lab at the Children's Hospital of Colorado, different gait labs might do this differently

before my gait eval I answered a questionnaire asking questions about my reason for getting a gait eval, my concerns with my gait, and my pain levels. I also had to sign a consent form to be recorded.

at my eval I had to wear shorts, the shorter the better. I came into the appointment with shorts, if you did not I imagine they would have you change into their shorts. I wear a sleeve on my leg to cover scars, I was allowed to keep this on for the first 2 parts but not the third. my top did not matter. I had to take off my shoes and socks.

the first part of my evaluation was spent taking measurements and evaluating my strength. most of the measurements were taken of angles of my legs, ankles, and hips. I had to lay on my back and stomach. the PT was very accommodating of me during the part where I had to lay on my stomach-- this can push my patellas out of place and is very painful because of this so I had trouble doing some of the movements for the measurements and had to take breaks. I also had the rotation of my legs measured again, this might not be measured if you don't have a rotational difference. during this step they used marker at several points to mark things for measurements and the cameras.

during the strength evaluation I was expected to give resistance to the PT trying to pull on my leg and foot. I was also asked to do some basic movements with my legs. if you've ever had a strength evaluation in physical therapy this is the exact same thing.

from there we moved on to the first part of the gait evaluation. in a different room with a large, high contrast pad and many cameras I was asked to walk in different ways while I was recorded. from memory I walked back and forth several times and walked backwards. I was allowed to keep my leg sleeve on for this.

after this part was done I had many sensors placed on my legs. several sensors measured my muscle impulses to make sure my muscles are moving at the correct times. to attach these sensors they cleaned my skin with an alcohol wipe and lightly sanded my skin. the sensors were stuck on with adhesive but were wrapped in vet wrap for extra security. small orbs were used for the cameras to pick up and have a point to connect the "dots" on the modeling software. these were stuck on using adhesive but most were on top of the vet wrap. I had to take my leg sleeve off for this.

me in all my sensor glory:

[ID: a person standing with vet wrap around their legs in multiple spots and several round stickers. he is smiling with his hands at his side. a black box covers his feet saying "devotees leave me alone" he is standing on purple tiles in a brightly lit room with a rudimentary computer model of his legs in the background]

after all the sensors were attached I had to do several simple exercises to make sure they were working. I was also asked to walk in front of the cameras once. I then had the chance to rest for a minute while the sensors were connected on a modeling program.

once the sensors were connected in the program I walked back and forth many, many times on an area with purple "hopscotch" tiles and a large black tile. the purple hopscotch tiles measure the force on each leg with each step while the black tile measures the pressure across your feet.

I had all the sensors taken off once I was done with the walking. they did not hurt to remove, even with leg hair!

the results will take 4-6 weeks to receive. I will have a follow up appointment to discuss them and the options for surgery. I'll probably update this post with what the follow up appointment looks like

[wheelie-sick]

one day someone is gonna get diagnosed with miserable malalignment, wonder if anyone else on Tumblr has it, look it up, and discover Just Me. 10,000 posts and they're All Me