Hypermobility spectrum disorder Puns

Pretty much the title.

Per usual, Dr. Powers shooting his mouth off, but in my 1500 odd transgender women here at PFM, some sort of hypermobility issue or flat out EDS shows up WAY WAY more than it statistically should.

I don't know why this is, I have literally zero theories other than milder cases are exacerbated by the increase in relaxin levels secondary to estradiol, but I wondered if anyone else has ever noted this or heard anything in this direction? Its like autism in the trans community, seems just too common to ignore as not something statistically significant.

I recently went to a CFS/ME specialist who diagnosed me with a hypermobility spectrum disorder. While that doesn't change my CFS/ME diagnosis, he said the HSD did genetically predispose me to it. Essentially, the fabric of my body is looser woven than a regular body, making me more susceptible to the little angry alarm cells hiding away in the gaps, freaking out whenever I do anything. I'm also more susceptible to microtears and injuries, adding to the inflammation.

Clearly, this is a very dumbed down explanation, because I'm still learning, but it made me curious. How many of us here have an HSD?

For reference: I have hyperelastic skin and flexible joints, without much muscle flexibility.

I have been diagnosed with Hypermobility Syndrome for over 6 years now but I’m still confused. Whenever I look up stuff about Hypermobility Syndrome articles and websites about Hypermobility Spectrum Disorder always pop up. I have tried asking my doctors the question but I never got a straight answer and even looking it up myself just leaves me really confused. Are they the same thing or are they just similar diagnoses to each other?

I don't want to name name myself because I'm living in a site-home, and I'll have myself indicted -- I just want you to know that I share your story, and that you are not alone.

You hurt, and think that nobody cares about you; you are not alone.

My service coordinator thinks my disability is not that bad; that i deserve to suffer or be homeless; you are not alone.

I have drank myself half-to-death with money that I do not have; you are not alone.

In three weeks, I have gained nearly three inches along my waist drinking and binge eating; you are not alone.

My longtime best-friend, my at-one-time fiancé, left me because she thinks I wasn't even trying; even if you do not "turn your life around", you are not alone.

I feel ugly, and useless, and that I am not deserving of love; you are not alone.

I love you, and everything you care about; you are not alone.

I want you to know; you are not alone.

Even if you feel useless, or if you die tonight; you are not alone.

Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparison

TL;DR: EDS/HSD study finds prevalence is 1/500. Not so rare at all.

Well, shit. This is going to unleash the hounds of hell from many of our dubious OTT's! What ever are they going to do with all of their zebra print merch? Very interesting paper!

Does anyone else feel like HSD is just sort of a throwaway diagnosis? They added diagnostic codes for EDS (some types combined, which seems odd, but still) but none for HSD. Meanwhile, there is a checklist for hEDS and geneticists often diagnose it, but almost no information exists on HSD even though the Ehlers Danlos Society invented it. It seems like they either should have made the criteria for hEDS less strict or they should have just left Joint Hypermobility Syndrome, which at least people have heard of and doesn't have that misleading spectrum in the name. If it is a different condition, presumably someone should be in charge of the condition. If it is just a variant of hEDS, it should just be hEDS. Maybe there needs to be some sort of separate organization for whatever the rest of us have and if it becomes clear that it is all EDS, they can combine then, but until then there could be an actual diagnosis.

hey I'm doing a research paper for a college class and I chose to look into stigma within the chronically ill community sepcifically those who fall somewhere on the hypermobility disorder spectrum. It would be reat if i could get some responses to a survey (https://www.surveymonkey.com/r/7RF2KGB) or just to get some opinions about stigma related specifically to EDS and similar conditions. I find it disappointing how much stigma there is about HSDs, especially since there is so little research about the varied disorders on the spectrum, but I'm also interested to hear others' experiences.

Posting here because I have CF and appear to have annoyed some people in /r/EhlersDanlos.

I know there is not much difference in treatment between severe HSD and hEDS, but I feel like I haven’t solidified my case to be properly evaluated for cranio-cervical instability or re-evaluated for POTS.

I am in such agony and confusion everyday no matter what POTS treatment stuff I do or physical therapy exercises.

From the autism, to the prolapses, to the papules on my feet, I was kind of hoping he would order genetic testing on me anyways just Incase I had an atypically presenting subtype of non-hypermobile EDS or another disorder. I’m tired of the injuries and chronic pain and very few specialists understanding or believing me.

I guess the rheumatologist and physiatrist could have diagnosed HSD all along but they didn’t even think it was necessary. That is how much they think HSD doesn’t matter.

Hey guys. I've been struggling with making sense of my diagnoses and was hoping for some advice. This is very long and im sorry in advance.

I'm a 21 year old female who has been diagnosed with Hypermobility Spectrum Disorder and tentatively diagnosed with non-radiographic ankylosing spondylitis (ill explain in a minute). I also have narcolepsy, which i developed at age 14 due to an autoimmune reaction to having mono. I have mild asthma that's gotten better with age. I used to complain about foot pain growing up and unfortunately, I think it altered my gait. I don't necessarily have the greatest posture but it has gotten much better as I've become more conscious of it.

I have always been hypermobile but felt little to no pain from it until i was around 19. I went to an orthopedic doctor for tendonitis in my knee and shoulder (and later, in my hip and Achilles heel). Initially I was treated with steroids and NSAIDs, but my tendonitis kept recurring. Steroids helped a little in the beginning but eventually started to make things worse so i opted not to take any more. I had MRIs done of my right shoulder and right hip that showed no structural damage to the joints, but showed severe soft tissue inflammation (as well as tendonosis in my hip). An x-ray of my neck showed straightening of the cervical spine but no damage. I had a nerve conduction study that came back normal. I can no longer take NSAIDs due to having tendonosis. I really didn't like them much anyway because they hurt my stomach. Meloxicam was the only one i could stand to take, and even then I couldn't take the full dose I was prescribed. I was referred to a rheumatologist because obviously recurring tendonitis in multiple body parts is not normal.

The rheumatologist diagnosed me with hypermobility spectrum disorder and fibromyalgia at my first appointment. I felt pain in almost all of the pressure points for the pressure point test, the worst being the ones around my neck/shoulders, SI joint/hip, and elbows. I don't know what my beighton score scale was, but they went with the diagnosis of HSD and not hEDS. My rheumatologist told me I would need to see a genetecist to pursue an EDS diagnosis, so i guess that means I don't fit the criteria of hEDS? My parents have only mild localized hypermobility. (my mom has weak ankles; my dad can pop his thumbs out at the base). I am hypermobile in pretty much all of my joints to some extent, though. I can touch my thumb to my wrist, but only on my right h

Interesting study regarding mobility:

https://ehlersdanlosnews.com/2021/10/25/hypermobile-eds-hypermobility-spectrum-disorders-clinically-similar-study-suggests/

I have joint hypermobility syndrome and I'm 5 weeks and 3 days post TLH (yeeted tubes, kept ovaries, and I've been on testosterone for the past 3 years because I'm trans).

I also have sensory processing disorder, which makes me feel internal sensations in an unpredictable way. My unreliable sense of internal-body-feelings gives me quite a bit of anxiety about my ability to determine whether something is actually wrong.

So I guess I want to know if anyone here has hypermobility or hypermobile Ehlers-Danlos (or any other connective tissue disorder) and if you had any complications or if you had a completely uncomplicated recovery, and if your recovery was slower than expected. And if anyone (hypermobile or not) who developed cystocele, rectocele, or a prolapse postop can describe what that felt like, so I might know what to watch out for? It would help me assuage my anxiety a lot. Thanks ❤️

Doctor Marco Castori is a Italian geneticist specialized in connective tissue disorders.

The article https://pubmed.ncbi.nlm.nih.gov/33668066/

Hi Reddit! We ( u/ScheisskopfFTW and u/PrestigeWombat) are back for our 4th AMA about Lily, Lily's List, our life and journey of having a medically fragile child, having to be bereaved parents, building our family to have a non-affected child that became successful, and how Lily's List has done during the COVID-19 Pandemic and beyond.

As we mentioned, this is our 4th AMA. If you would like to read the previous AMAs, here they are:

First official AMA: https://www.reddit.com/r/IAmA/comments/a0mrdg/my_daughter_died_from_zellweger_syndrome_my_wife/

Second Official AMA: https://www.reddit.com/r/IAmA/comments/e5i781/our_daughter_died_from_zellweger_disorder_and_we/

Third Official AMA:

https://www.reddit.com/r/IAmA/comments/k4m1qm/our_daughter_died_of_zellweger_spectrum_disorder/

TLDR: Lily was diagnosed with Zellweger Spectrum disorder at 2 days old. She was missing a large portion of her brain, was blind, oxygen-dependent, and suffered from constant seizures. We had NO idea that she was going to be born with this condition. We learned that day. She would not live longer than 6 months. We had a long, fulfilling, but stressful, and exhausting 5 months with Lily. After she died, my husband and I felt purposeless, so we started Lily's List. Lily's List is a nonprofit organization that specializes in sending boxes of items to help families with medically fragile children organize their home lives. None of these items are covered by insurance but drastically change the quality of life for the children at home.

We also learned that this condition is genetic and autosomal recessive. Any future children of ours have a 25% chance of being affected by this disorder. Thus, my husband and I chose to pursue IVF with Pre-Genetic Testing to test to ensure we didn't have another child affected by Zellweger Syndrome. Since then, we have welcomed a healthy baby girl into this world who is a carrier (but not affected) by Zellweger syndrome. We now have a healthy, unaffected daughter.

Please ask us ANY questions. No question is off-limits. My husband and I are incredibly open about our life with lily and everything after.

Joey will be live on twitc

I've been struggling with bruxism and jaw clenching while I'm asleep for the past 5 years. I've tried a lot, like physical therapy and wearing specially designed night guards. Nothing seems to work, and I even break my mouth guards after a few months and I have to get a new one made. I once did a really random test when I was laying in bed. I thought my jaws were relaxed and felt like testing it out by sticking a finger in my mouth. To my surprise, my teeth automatically started biting down on my fingers, harder and harder to the point I left bitemarks on my finger. Didn't matter how hard I was trying not to, it just happened automatically without even noticing (aside from the pain in my finger lol). Doctors put it aside as "stress". Ofcourse, stress can have a lot of strange impacts on the body but 5 years feels like a long time and in those 5 years I made a real big improvement on my mental health and my stress levels are way lower than they used to be.

Long story short: anyone else experiencing jaw related symptoms aside from TMJ and dislocation. Things like grinding teeth (bruxism) and/or jaw clenching.

Also, whenever I lay on my side it literally feels like my lower jaw slips to the side I'm laying on and I feel like that's a trigger as well to clech my jaws and bite down on it.

For anyone interested, bipolar disorder itself, manic episodes, mixed episodes and such will be revised, new specifiers (“mood incongruent vs. congruent”) and mood disorder not otherwise specified will be added/re-added, amongst other changes for other conditions.

You can see the changes here.

Once it officially comes out, I’ll keep this sub updated on the specifics of the changes and explain them across a series of posts, if any one is interested :) let me know

Also, I came across an APA (as in, the writers of the DSM) article using bipolar spectrum disorder in their terminology, for whoever it was the other day cracking the shits over people using the phrase 🥲 it’s a good article and explains how bipolar may look like anxiety, ADHD, autism, all sorts of disorders and shows what a complex condition it is we are experiencing — worth a read!

I’m beighton score 6-7 depending on the neurologist. Pretty much all in the extremities. I’m worried about EDS but have no pain or symptoms from the joints beyond my hands cramping easy. What differentiates basic hypermobility and EDS,

Or is it basically the same type of ED as when it started (ex: started with bulimia, still bulimic)?

Hello everyone,

I was reading the site for BC here: https://www2.gov.bc.ca/gov/content/health/managing-your-health/child-behaviour-development/support-needs/autism-spectrum-disorder

But it seems dedicated to children, not adults. I'm working with my doctor, but she isn't allowed to formally diagnose.

I should not the hypermobility is just a side thing to what they were really looking into me for (born with cataracts) but I have hypermobility of small joints and knees B score of 6/9 no pain or dislocations etc obviously I’m sure if they thought I had a type of condition affecting heart like some EDS they would have mentioned screening but they never did. But I’m just curious, I know the vast majority of people with hypermobility never have issues and fall into benign joint hypermobility area (1/5 have significant joint hyper mobility in the population they said) but I was under the impression hypermobile EDS while not really life threading at all was still a true disorder compared to hypermobility, although I’ve also read about some doctors disagreeing on what hypermobile EDS even counts towards. I’m so confused.

Beighton score 6/9 slightly stretchy skin but no pain or dislocations etc. they say it means disorder for some (the EDS reddit page says anyone with hyper mobility has a disorder which I know isn’t true) yet they say 20% of the population is considered generally hypermobile. Clearly most of those cases are benign. I guess I’m just curious what symptoms lead to the idea it’s something worse.

He said I barely sit outside the spectrum of having autism.

Have you ever heard of "borderline autism"? IDK what to make of that