#dysautonomia international

[clarissaexplainingitall]

kind of disappointing that dysautonomia international went from virtual to not even fully hybrid, in spite of like. you know. having all those sessions about the long term ramifications of covid-19.

[rosesandthorns44]

I lowkey forgot how helpful my grabber tool is for tidying up my room...

I can sit in a central location and just pick trash/laundry/recyclables and put them where they go!

I've had the dang thing for probably close to a decade. Why don't I use it? IDK. Internalized ableism? Imposter Syndrome? Denial?

I always tell myself, "I'm better now. I don't need all those things anymore," and avoid using any assistive devices unless I'm in so much pain I can barely move. It's bullshit! I'm making things so much harder for myself.

I keep thinking about getting a rollator so I can get out of the apartment more on my days off. Then I tell myself that's being overdramatic, and i don't need it. Lately, I'm resistant to even using my cane.

I get scared to go places on my own in case I get too tired! Clearly, I need SOMETHING.

I didn't use to be so self-conscious about visibly appearing disabled. It's more since I've entered the workforce, and I'm the only one at my company who uses mobility aids. Also, I got severely harassed/discriminated against by my ex-boss (reported her ass and got her fired!).

I'm fucking tired of being the odd one out at work and working in a completely NOT accessible building where the only mobility aid I even have the option to use is my cane.

Heavily considering applying to an independent living center a few cities over so I can be amongst peers and do some good for the local disabled community. It's just hard to make the leap and change careers.

[toomanyacronyms]

Me upon waking up: "Wow! I feel so good! Maybe I'm not disabled and just faking!"

Also me upon sitting up: "... Damn it."

[thebiggeek7]

I know it's probably internalized ableism, but I might need a mobility aid to improve my quality of life and I feel really guilty about it.

[didntaskforfrozenyoghurt]

got into an argument with my dad that did nothing but trigger me and now my brain juice is leaking again.

and the hospitals are chronically understaffed and undertrained, and in a way, so is my family. i can't just be that trainer because the test conversations are what got me where i am tonight.

time to make a referral to neurology and hope against hope i can wait the probable year between now and then. i made it to the testosterone, after all. it's worth a shot.

[thebibliosphere]

Hi Joy, I hope you're feeling reasonably well today. I was telling a friend not on tumblr about you and because of medical similarities as well as how you manage the mental side of it all, her reaction was "Are we twins!?" And then I mentioned you had heart palpitations and she's wondering if you have a diagnosis for them? She has no diagnosis for hers and doctors keep blowing her off

My heartfelt (heh 😅) commiserations to your friend.

My heart palpitations are caused by two types of dysautonomia, one of which is Postural tachycardia syndrome, or PoTS for short. The other is listed in my chart as "dysautonomia undefined," which is a polite way of saying, "fucked if we know, but something else is wrong." Fortunately treating my MCAS and treating the PoTS helps keep on top of it.

If your friend is unfortunate enough to be twins with me, I'd suggest looking up Dysautonomia International for resources and potentially pursuing a diagnosis. A lot of doctors are ill-equipped to understand or diagnose it. It took me decades of symptoms and constantly being told I was "fine" and "probably anxious" before a specialist realized no one was reading my test numbers in the context of the rest of my body.

Best of luck to your friend, and I hope she's doing well, all things considered!

[pinkanonwrites]

Horny thoughts aside robot cuddles would be fucking awesome. I struggle with temperature regulation cuz ✨dysautonomia✨ but like laying on cool metal while also being cuddled? Fuck yes. Maybe you rest your head on a softer part to keep your neck from growing stiff. Giant fingers rubbing your back to help you sleep or cradling your body so you’re comfortable no matter what position? The inherent vulnerability and trust of being in the palms of somebody who could crush you in an instant and chooses not to is just perfection

-🌙

The best part about Cybertronians is they could be warm or cool! If it's too hot, laying on cooled metal under the shade is perfect. If it's kind of chilly, they can rev their engine and help ward off a bit of that cold! I've talked about my headcanons before about how Cybertronaisn don't move around in their sleep like humans do, so you'd be perfectly safe with a giant metal hand wrapped gently around your body to keep you from rolling to one side or the other and tumbling off your bot of choice's chassis. The soft rumble of their internals and hum of their spark become the perfect background ambience as you begin to drift off.

[dissociacrip]

why isn't there much info about coathanger pain with POTS?? or at least why is this not more common knowledge? i don't think i've ever seen anyone talking about this. every time i've asked about it (+other POTS symptoms it comes with in my case) in chronic illness spaces people have suggested everything from fibro, MCAS, a CFS leak, a herniated disc, CCI, etc. but nobody ever said "coathanger pain."

but dysautonomia international posted a silly little graphic on their instagram and now i have my answers to why i was having a ton of symptoms that did suggest a herniated disc but there were no signs of disc herniation upon getting an MRI and for some reason it was triggered by working morning shift/having to be upright for a long time in the mornings. i would get excruciating, searing pain that feels pike a knife has been shoved into the base of my neck and the whole of my upper back would have this icy burning sensation. accompanied by me losing the ability to think straight, losing my coordination, and slurring my speech. i left work crying one morning because of how much pain i was in before i eventually came to the conclusion i couldn't do morning shifts.

that's coathanger pain. my spine is okay (i think...for now, anyway.) according to The Stuff they don't know what causes coathanger pain necessarily but they theorize it has to do with reduced blood flow to those areas of the body (which would track since POTS tends to involve blood pooling in the extremities and such.) it's also not exclusive to POTS and is associated with dysautonomia or orthostatic intolerance in general i think.

One example of the power of obtaining the autonomic history is the Coat Hanger Phenomenon. In people who have neurogenic orthostatic hypotension or orthostatic intolerance, they can complain of pain, or like a charley horse kind of sensation, in the back of the neck and shoulder areas in the distribution that’s like a coat hanger. And it goes away when the person is lying down. That’s an important symptom. And the way I explain it is that the muscles that control your head are tonically active, otherwise your head be falling down all the time. Tonically active. That means they’re using up oxygenated blood all the time. Well suppose you’re in a critical situation where there’s a drop in blood flow at the delivery of oxygenated blood to the head. In that situation these muscles are not getting enough oxygenated blood. They’re tonically active, so they’re producing lactic acid and you get a charley horse, just like you’d have a cramp anywhere else. It’s a skeletal muscle thing. So, I think when somebody complains of Coat Hanger Phenomenon, that’s a very important sign or symptom. And that is not invented. That’s a real phenomenon. It points to ischemia to the skeletal muscle holding your head up.

(Dr. Goldstein, The Dysautonomia Project)

worsening cognitive dysfunction, slurred speech, and worsening coordination because blood's not getting to my brain. bordering on emergency-room-level pain in my upper back and neck because not enough blood is getting to those parts of my body. got it.

anyway, i legit have NEVER seen this discussed until recently and i thought i should share.

[dazzlinglybitter]

It's Disability Pride Month!! Let's talk about POTS!

Hello beautiful people. Since it's Disability Pride Month, I wanted to talk about my disability. I have a condition called POTS. It stands for Postural Orthostatic Tachycardia Sydrome, which is a very long name, and you can see why we just say POTS. Essentially, it means that when I change position or stand up, my heart rate gets too high. It is normal for your heart rate to go up when you change positions. But what makes POTS different is it changes too suddenly and much higher than average. The National Institutes of Health defines that a person with POTS has "an increase in heart rate of 30 beats/min or more when moving from a recumbent to a standing position that lasts more than 30 seconds". Which on its own doesn't sound all that bad. I would be a much happier human if that's all it was. However, POTS comes with its own host of symptoms. That swing in heart rate can cause dizziness, lightheadedness, blurred vision, and sometimes fainting. Other symptoms of POTS include:

Exercise intolerance

Headaches

Nausea

Fatigue

Anxiety

Dry mouth

Excess thirst

Leg pain

Blood pooling

Brain Fog

Swollen Extremities

Sleeping problems

Bladder problems

Digestion issues

Tremors

Shortness of breath or chest tightening

Memory issues

Poor temperature regulation

Chronic dehydration

Neuropathic pains

Increased sweating to the extremities

Loss of appetite

Light sensitivity

Dry eyes

Heart palpitations

Chest pain

Cold extremities due to poor blood flow

Heat intolerance

Hypovolemia (low blood volume)

And probably more that I've missed! Doesn't sound all that fun, and trust me, it isn't! POTS is a condition under the larger umbrella of Dysautonomia. There are several different types of dysautonomic conditions, POTS is only one of them. Here are some fun facts about POTS:

POTS effects around 0.2% of the world's population

It is most common in females, 75 to 80% of all patients are female

Though it can be diagnosed at any age, it is most commonly diagnosed between the ages of 15 and 25 (I was 19 when I got diagnosed!)

There is no cure for POTS and it's a chronic illness

Some teenagers will outgrow the condition in their 20s

The average time to diagnosis is 5 years and 11 months (took me almost a year, luckily)

According to Dysautonomia International, 25% of POTS patients are so disabled they cannot work or attend school

There is no singular cause for POTS, and many patients will likely not know what caused their condition

Research on POTS is incredibly sparse, making advocacy, treatment, and diagnosis even harder

The usual recommended treatment is increased fluid intake, increasing salt intake, wearing compression stockings, raising the head of the bed to conserve blood volume, reclined exercises like rowing, recumbent bicycle, or swimming, and a healthy diet

While there is no FDA approved medication for POTS, some medications such as beta blockers can be used to aid the condition

Though the heart is directly involved, POTS is not technically a heart condition. It is technically a nervous system disorder stemming from the autonomic nervous system

There's lots to be said about POTS! I don't think I could fit it all in one post if I tried. But if you made it this far into the post, thank you for taking the time to learn about it! Awareness is key, and the more people that know about the condition, the better we are. Happy Disability Pride Month!!

[rosesandthorns44]

I used to never use delivery services like instacart. I thought that was "rich people shit".

I've had to change my mindset about trying to do everything myself now that I live independently from my family and can't have them help me with errands on rough days.

It takes all my energy to hold down a full-time job so I can have an apartment and healthcare. On extra rough weeks, if I don't get groceries delivered, I probably won't eat much. Then it snowballs into me feeling even worse from lack of nutrition.

I'm lucky to live in an area where grocery delivery is an option. I shouldn't feel bad for utilizing something that makes living my life as a disabled person just a little bit easier. Also, it really doesn't cost much more than going to the store myself.

My parents rebelled from their Midwestern family norms by not raising their kids Irish Catholic; but I think there is still some Catholic guilt swimming around in our genetic code xD

TL;DR: Rosie is working on silencing the internalized ableism telling them that if they can't do everything on their own, they are trash and failing at being an adult.

There is no virtue in suffering!

[flutterbyfairy]

i've been collecting resources and studies about myalgic encephalomyelitis for upcoming doctors appointments, and since there's a lot of misinformation about ME out there i thought i'd make a post with links and information that might be helpful for other ME patients, or just generally educational!

for anyone who doesn't know, myalgic encephalomyelitis is a debilitating multi system chronic illness. it's most characteristic symptom is post exertional malaise/symptom exacerbation (meaning symptoms getting significantly worse after exertion with prolonged recovery periods - see the diagnostic criteria linked below for more explanation). it has previously been called chronic fatigue syndrome, a name associated with claims of it being a psychosomatic condition rather than a medical one despite evidence to the contrary (here's a page with some information about the history of ME, and see the pathology section further down for evidence of ME being a physical disease). ME is also often comorbid with conditions like POTS (or other forms of orthostatic intolerance and dysautonomia), MCAS, and Small Fibre Neuropathy, and it's not uncommon for people who have long covid to develop ME. but yea! here's some links to resources i've gathered.

general resources/overviews:

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Primer For Clinical Practitioners 2014 Edition

Diagnosis and Management of Myalgic Encephalomyelitis - ME Action

Initiating Care of a Patient With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Medical considerations when treating urgently ill patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Three Cases of Severe ME/CFS in Adults

diagnostics:

Myalgic Encephalomyelitis: International Consensus Criteria <- just the criteria

Myalgic encephalomyelitis: International Consensus Criteria <- criteria with explanation of how and why it was developed

TESTING RECOMMENDATIONS FOR SUSPECTED ME/CFS US ME/CFS Clinician Coalition

there are multiple ME severity scales, and exact definitions of what constitutes mild/moderate/severe/very severe vary a bit, but here is one: M.E. Disability Scale, another one is the ME/CFS Disability Rating Scale from ME Association, however the pdf on their website costs so i also have a pdf that i made with the text

pathology:

Brainstem volume changes in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID patients

Decreased oxygen extraction during cardiopulmonary exercise test in patients with chronic fatigue syndrome

Developing a blood cell-based diagnostic test for myalgic encephalomyelitis/chronic fatigue syndrome using peripheral blood mononuclear cells

Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, and the Coordination of Antiviral and Metabolic Phenotypes in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Mitochondrial complex activity in permeabilised cells of chronic fatigue syndrome patients using two cell types

Muscle sodium content in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Redox imbalance links COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome

The use of oxygen as a possible screening biomarker for the diagnosis of chronic fatigue

Tissue specific signature of HHV-6 infection in ME/CFS

treatment (both helpful and harmful):

ME/CFS TREATMENT RECOMMENDATIONS US ME/CFS Clinician Coalition

Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/ CFS)

Potential Therapeutic Benefit of Low Dose Naltrexone in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Role of Transient Receptor Potential Melastatin 3 Ion Channels in Pathophysiology and Treatment

Back to the Future? Immunoglobulin Therapy for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Evidence Against Exercise for people with PEM/PESE in Long COVID and ME/CFS

PACE trial claims for recovery in myalgic encephalomyelitis/chronic fatigue syndrome – true or false? It’s time for an independent review of the methodology and results

Treatment harms to patients with ME/CFS

[covid-safer-hotties]

Patients With Long-COVID Show Abnormal Lung Perfusion Despite Normal CT Scans - Published Sept 12, 2024

VIENNA — Some patients who had mild COVID-19 infection during the first wave of the pandemic and continued to experience postinfection symptoms for at least 12 months after infection present abnormal perfusion despite showing normal CT scans. Researchers at the European Respiratory Society (ERS) 2024 International Congress called for more research to be done in this space to understand the underlying mechanism of the abnormalities observed and to find possible treatment options for this cohort of patients.

Laura Price, MD, PhD, a consultant respiratory physician at Royal Brompton Hospital and an honorary clinical senior lecturer at Imperial College London, London, told Medscape Medical News that this cohort of patients shows symptoms that seem to correlate with a pulmonary microangiopathy phenotype.

"Our clinics in the UK and around the world are full of people with long-COVID, persisting breathlessness, and fatigue. But it has been hard for people to put the finger on why patients experience these symptoms still," Timothy Hinks, associate professor and Wellcome Trust Career Development fellow at the Nuffield Department of Medicine, NIHR Oxford Biomedical Research Centre senior research fellow, and honorary consultant at Oxford Special Airway Service at Oxford University Hospitals, England, who was not involved in the study, told Medscape Medical News.

The Study Researchers at Imperial College London recruited 41 patients who experienced persistent post-COVID-19 infection symptoms, such as breathlessness and fatigue, but normal CT scans after a mild COVID-19 infection that did not require hospitalization. Those with pulmonary emboli or interstitial lung disease were excluded. The cohort was predominantly female (87.8%) and nonsmokers (85%), with a mean age of 44.7 years. They were assessed over 1 year after the initial infection.

Exercise intolerance was the predominant symptom, affecting 95.1% of the group. A significant proportion (46.3%) presented with myopericarditis, while a smaller subset (n = 5) exhibited dysautonomia. Echocardiography did not reveal pulmonary hypertension. Laboratory findings showed elevated angiotensin-converting enzyme and antiphospholipid antibodies. "These patients are young, female, nonsmokers, and previously healthy. This is not what you would expect to see," Price said. Baseline pulmonary function tests showed preserved spirometry with forced expiratory volume in 1 second and forced vital capacity above 100% predicted. However, diffusion capacity was impaired, with a mean diffusing capacity of the lungs for carbon monoxide (DLCO) of 74.7%. The carbon monoxide transfer coefficient (KCO) and alveolar volume were also mildly reduced. Oxygen saturation was within normal limits.

These abnormalities were through advanced imaging techniques like dual-energy CT scans and ventilation-perfusion scans. These tests revealed a non-segmental and "patchy" perfusion abnormality in the upper lungs, suggesting that the problem was vascular, Price explained.

Cardiopulmonary exercise testing revealed further abnormalities in 41% of patients. Peak oxygen uptake was slightly reduced, and a significant proportion of patients showed elevated alveolar-arterial gradient and dead space ventilation during peak exercise, suggesting a ventilation-perfusion mismatch.

Over time, there was a statistically significant improvement in DLCO, from 70.4% to 74.4%, suggesting some degree of recovery in lung function. However, DLCO values did not return to normal. The KCO also improved from 71.9% to 74.4%, though this change did not reach statistical significance. Most patients (n = 26) were treated with apixaban, potentially contributing to the observed improvement in gas transfer parameters, Price said.

The researchers identified a distinct phenotype of patients with persistent post-COVID-19 infection symptoms characterized by abnormal lung perfusion and reduced gas diffusion capacity, even when CT scans appear normal. Price explains that this pulmonary microangiopathy may explain the persistent symptoms. However, questions remain about the underlying mechanisms, potential treatments, and long-term outcomes for this patient population.

Causes and Treatments Remain a Mystery Previous studies have suggested that COVID-19 causes endothelial dysfunction, which could affect the small blood vessels in the lungs. Other viral infections, such as HIV, have also been shown to cause endothelial dysfunction. However, researchers don't fully understand how this process plays out in patients with COVID-19.

"It is possible these patients have had inflammation insults that have damaged the pulmonary vascular endothelium, which predisposes them to either clotting at a microscopic level or ongoing inflammation," said Hinks.

Some patients (10 out of 41) in the cohort studied by the Imperial College London's researchers presented with Raynaud syndrome, which might suggest a physiological link, Hinks explains. "Raynaud's is a condition of vascular control or dysregulation, and potentially, there could be a common factor contributing to both breathlessness and Raynaud's."

He said there is an encouraging signal that these patients improve over time, but their recovery might be more complex and lengthy than for other patients. "This cohort will gradually get better. But it raises questions and gives a point that there is a true physiological deficit in some people with long-COVID."

Price encouraged physicians to look beyond conventional diagnostic tools when visiting a patient whose CT scan looks normal yet experiences fatigue and breathlessness. Not knowing what causes the abnormalities observed in this group of patients makes treatment extremely challenging. "We need more research to understand the treatment implications and long-term impact of these pulmonary vascular abnormalities in patients with long-COVID," Price concluded.

[stranger-rants]

Post-Star Court Billy & Temperature

Note: These are headcanons / what-ifs based on Billy surviving

I’ve thought a lot about how a disabled Billy would handle temperature, and I think I have pieced together my thoughts into one coherent picture of what this looks like for Billy. I do think there is some validity in Billy having PTSD regarding hot or cold temperatures, but I think either extreme could be a trigger. Cold, obviously due to the Mindflayer’s need for it. Heat, due to both the sauna situation and the injuries / pain resulting from the heat.

Cold seems like it would be more of a trigger for the hypervigilence aspect of PTSD and heat seems like it would be more of a trigger for the physical manifestations of PTSD. When he wants to cool down or he feels relieved by the cold, he’s also got those thoughts in the back of his mind as to whether or not the Mindflayer is still present in him. When he feels too hot, he might remember feeling like he was being drowned in sweat, feverish with burning skin and he has panic attacks that cause him to seek out relief in the cold.

Now, temperature is regulated in a feedback loop. You get too hot, you sweat to cool down. You get too cold, you shiver to warm up. What I have not seen discussed as much is the way post-traumatic injury and PTSD both can wreck your autonomic nervous system. That is that your ability to regulate body temperature in this way goes haywire. So, I think it’s entirely possible that a disabled Billy, regardless how he feels about hot or cold from a psychological perspective, would struggle with it from a physiological perspective.

For this reason, I think either extreme is going to be difficult on his body. Instead of his body reacting normally to either extreme by sweating or shivering a normal amount, he could sweat so much he gets dehydrated fast or he could get severe chills and shivers from poor circulation and/or low blood volume. He would especially struggle to regulate his body temperature immediately after injury due to blood loss, and he would likely be very cold in the hospital.

I had internal bleeding from a car accident. I was freezing in the hospital for days after surgery. When you lose a lot of blood, you can feel really cold and your heart can beat very fast with very slight movement. Like, 190bpm after sitting up fast. So, I think his body would react similarly and he would continue to struggle with autonomic dysfunction (dysautonomia) for years if not the rest of his life afterwards. Also, a lot of people with PTSD just… do not have a healthy, functioning autonomic nervous system to begin with.

Now that I’ve got those explanations out of the way as best I can, (I am not a medical professional. I am basing this partially on personal experience, and research I’ve had to do for myself. That is all. Obviously, what I experienced is nowhere the same level of traumatic injury but still…) I tried to think of ways in which Billy could heat up his body or cool his body in ways that weren’t a shock to his system or a trigger for his PTSD and I have a few ideas.

One, if his brain can start making positive associations between his body and temperature then maybe temperature extremes can become more manageable. Like, if he’s able to associate cold and heat with something comforting like the cool water of a swimming pool or the warmth of a hot tub that doesn’t either make him paranoid that the Mindflayer is in his body or that he’s going to burn alive then I think that might help with the PTSD aspect of it.

Two, finding ways to help regulate his body temperature that isn’t immediately triggering (e.g. not an ice bath or an enclosed sauna) will help him deal with the physiological aspects. Maybe it’s just a cooled towel on his neck or a warmed up blanket (I got a few of these while in the hospital. They were amazing.) He would need to drink less alcohol, and drink a lot more water. Like, a lot more water. It’s also just good to keep his living space at an even temperature. Not too hot, not too cold.

Three, it is imperative that other people know he needs help with this. Like, when he gets flashbacks from temperature extremes, he can be reassured that he’s safe. He can work with a therapist on techniques to ground himself. It would also help to have a safe living space where he has access to a quiet, dark space when he’s too hot or a comfortably warm space when he’s cold. Having access to a private temperature regulated pool would be nice for his PTSD and his own body temperature regulation…

…wonder who has one of those? 🤔

Anyways, those are my thoughts for the day.

[thebibliosphere]

Sorry to bother you, but I just looked up MCAS due to one of your links and while it doesn't apply to me, two of the symptoms reminded me of things my sister deals with and the big one is that she can faint when she feels hot or in a big crowd which I've thought was the vasovagal response. Could this also be MCAS? Should I suggest she get tested?

So, what you are describing is common in a type of autonomic nervous system dysfunction known as dysautonomia (of which there are several types.) It's not uncommon for dysautonomia to be comorbid with MCAS (sometimes MCAS is the cause) or for them to overlap.

Based on what your sister is describing, I'd suggest looking into dysautonomia for sure. You'll find some good resources at Dysautonomia International.

If you want to look into MCAS, I'd suggest the Mast Cell Society, which works to provide resources and information for people with mastocytosis and mast cell activation syndrome.

Best of luck!

[jesusonafrickinboat]

October is Dysautonomia Awareness Month!

Dysautonomia refers to a group of medical conditions caused by autonomic nervous system dysfunction

Conditions under the dysautonomia umbrella include: Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), Multiple System Atrophy (MSA), and others

More than 70 million people worldwide are affected by various forms of dysautonomia

Dysautonomia International and Cleveland Clinic have more in-depth articles on dysautonomia for more information

[the-autistic-system]

Hi, I saw ur EDS post and was wondering what your symptoms are? I also have rather severe EDS, and I was just curious. You don’t have to tell me! No pressure :) /gen

- 🦓

Honestly it'd be easier to list the symptoms I don't have LMAOOOO but I am more than happy to share!

Head to Toe, Internal and External, here we go!

(in no specific order)

-hearing loss

-joint hypermobility and instability (both major and minor joints), limb bowing, and slipping ribs

-atrophic scarring, poor healing, and generally fragile skin (easy bruising, bandaids irritate my skin and medical tape can tear it; its also velvety to touch)

-kyphoscoliosis (i think i may also have craniocervical instability which causes its own symptoms, similar to POTS if not POTS), also i'm super short. Before scoliosis I would've been about 5'0", but it stole my height in highschool so I'm 4'8" on a good day.

-Mitral Valve Prolapse

-muscle weakness and hypotonia (also atrophy as I've been out of PT)

Now for dysautonomia, things that are indirectly caused/directly affected by my EDS

-Digestive issues like IBS-A and Gastroparesis, also GERD (fun fact: my esophagus curves with my spine 😭)

-POTS (postural orthostatic tachycardia syndrome)

-Migraines and Tension headaches in my neck (my head is quite literally too heavy sometimes)

-Osteoarthritis from severe/frequent dislocations

I usually hate trying to list everything bc it's so much that it seems fake, like I WISH I were making up the amount of stuff constantly going on with my body, it is so much some days it gets overwhelming.

I do however think it's funny to say the forces that be in the universe had to nerf me or I would have been to powerful bc I am one anarchy lovin motherfucker, but no chance I can do anything about it tho 💀