I usually hear people talk about being "flexible" as a kid before the mobility turns to stiff joints/pain as an adult, but I haven't often heard it the other way around. Has anyone experienced this?

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Hi! I have several symptoms and a family history that I would like to have assessed in relation to Ehlers-Danlos syndrome (EDS). My grandmother has been diagnosed with EDS.

I have hypermobility and joint laxity in several joints, while my overall mobility is otherwise poor (for example, difficulty with scapular movements). My left shoulder feels unstable and partially subluxes when I move my arm overhead. I have also been diagnosed with tendinopathy in both shoulders.

Other symptoms include occasional back pain, reflux/heartburn, occasional difficulty swallowing, increased bowel movements, frequent and heavy nosebleeds, a significant increase in pulse when standing, occasional sweating at rest, and severe physical and mental fatigue, which is often worst on rest days. I also had a hernia as a child.

The symptoms started quite suddenly at around 15–16 years old and progressed rapidly over about four months. My hemoglobin is good/high, but my iron stores are low.

Given the family history and the combination of joint instability, tendon problems, nosebleeds, autonomic-type symptoms and fatigue, I would like to have these symptoms assessed, including whether a connective-tissue disorder could be relevant. I play baseball, so I am also concerned about whether my shoulder instability could increase my risk of injury and whether this should be investigated promptly.

Long COVID → POTS, dysautonomia, ME/CFS, SFN, hEDS, suspected MCAS, GERD, hEDS, etc. Want to get lightly high once a week, max, to watch football without white-knuckling it sober.

5mg (or 2.5mg) gummy or a couple puffs from a joint occasionally — anyone do this without a flare?

Affect your HR/BP or trigger PEM?

Smoke vs. edible — easier on you?

Anyone use a supplement (kava, L-theanine, etc.) or a prescribed med instead and get something similar?

Not trying to go overboard, just want one low-key thing on Sundays. Worth trying or bad idea with this combo?

EDS, POTS, Tethered Cord, Delayed Gastric Emptying, Etc. And I've heard a bit about these frequent, nasty ear infections I've been getting about every two weeks, being supposedly more common? It's bad. Pus coming out of my ears, swollen, red painful tracks that go down my neck. Saw an ENT that told me to try "peppermint oil" so currently in the search for a new one. Don't use q-tips, other than around the outer canal to dry water that may get trapped after showers. Use a white vinegar solution regularly. And it's just like. My ears will do absolutely anything to get infected. Any home remedies you'd recommend until I can get to the appropriate doctor? And WHY DO THEY DO THIS UGHHH

Another article in the Radio New Zealand series on EDS and factitious disorder misuse in Aotearoa. This time the bloody awful Auckland hospital team managed to nearly kill someone with an entirely different disease, too! And again, nationwide refusal of medical care after a stigma-based, extremely stigmatising misdiagnosis was put on her chart. Chart amendment NEEDS to be possible in NZ. As of now, I do not believe she would be safe to receive medical card at any other hospital in NZ, even after this resolution and genetic confirmation, as the flag of denial of care is STILL THERE.

Note that on the gut front, Visceral Myopathy 2 may look very similar by some analyses.

So we may want to ask more questions of our “can I have EDS and not be hypermobile?” visitors, lest they wind up getting treated like this, too.

Let’s remember that all of us were pre-diagnosis at some point (even our dare peeps diagnosed near birth from their dislocated hips and hypotonia, lol!) and maybe make an automod which can suggest the ‘loose joints tight muscle’ presentation, as well as other disorders like this as we become aware of them. Other disorders for the differential ought to be added over time, too.

Link to the Malacards page on Visceral Myopathy 2: https://www.malacards.org/card/visceral_myopathy_2

Hi all. After 6 years I was finally referred to get some genetic testing done. Originally my appointment was in late December but they called and said due to a cancellation I can come in 3 weeks.

I asked what should I bring and the scheduler really had no info. Is it worth it to bring any records? because as I’m sure most of you do, I have a ton to look over. Is there anything else anyone suggests prior to the appointment? Any suggestions are appreciated.

Hello! I’m sure you’ve seen me in this subreddit once or twice recently I promise I’m not trying to be annoying haha. Long story short, after years of chronic pain and fatigue etc etc my rheumatologist suspects a connective tissue disorder, I’m hypermobile so possibly hEDS but I’m currently in the process of finding a geneticist.

I’ve been having a lot of questions because a lot of things I thought were normal my whole life, I’m learning are not, and sometimes it’s hard to find references for what’s normal and what’s not. My question right now is, what is the normal time it takes for the body to heal a minor wound like a scratch that didn’t even bleed and for the discoloration to go away. How long does it take for you guys?

I know eds comes in many many different forms and this might not even be a symptom for some people but I still wanted to ask in case anyone who does have this symptom or knows about it can tell me.

Photo 1: Cat scratch from 3 weeks ago now, it never even bled, barely even scabbed but there is still a faint red line

Photo 2: I’m actually not sure where this one came from but I noticed it 3 days ago. Seemed like a minor scratch, might have been from a cat (tend to get a lot of those lol) I suspect it might be just a teensy bit infected but I’ve been taking care of it and it hasn’t gotten worse but still doesn’t look like it’s fully closed up.

I know this is a verrry small sample size but just figured I’d ask! Thank you!

DOES ANYONE DEAL WITH SHIN SPLINTS AND/OR HAVE FLAT FEET. like, i cant even work 3 hours without getting severe shin splints. i just wanted to see if anyone else struggled with this. it’s EXCRUCIATING….feels like knives are being jabbed into both of my shins. or any ideas or information you know even if you don’t get them would be IMMENSELY helpful.

TLDR looking for physical therapy advice for my goofy right side.

I’m on a journey of trying to correct EDS related muscle imbalances through strength training and physical therapy. I’ve tried both with professionals, but I simply can’t find anyone that understands that I can DO most exercises, but I will do it incorrectly and cause injury if the absolute foundational structures aren’t addressed. Every PT I’ve seen seems to treat my issues like they would treat age-related degeneration, sports injuries, etc. Rather, I’m learning to use my body correctly for the very first time after a lifetime of it compensating with scar tissue and muscle spasms.

From these issues, I’ve developed scoliosis and spinal degeneration, right hip dysplasia, abdominal hernias— I’m okay with pushing through pain but I need help with the absolute basics.

I have made a lot of progress on my own, but I think my ankle pronation/supination is the source of a lot of issues. No matter how many exercises, how much massaging or rest I do, I can’t seem to correct my feet. Particularly on the right side. My left seems to be improving, but my right ankle goes outward and causes debilitating hip, knee, and back pain.

I have tried the usual ankle strengthening, shoe inserts, braces, even working out in boots that keep my ankles stable. The calf muscle overcompensations makes my ankles feel ‘stuck’. I can’t do most standing exercises, even those that target arms and back. My right shoulder is also completely loose because my middle back won’t engage. I am pretty sure fixing my lower legs will help me reduce pain and further degeneration higher up.

Any suggestions for what else may help? Exercises that target lax ankles and toes? Weird hacks? Things to talk to a doctor about?

Pictures to demonstrate the pronation/supination, knee valgus, calf imbalance, and the impact I think it has on my back stabilizers.

Did anyone else lose their hearing due to a connective tissue overgrowth? To make a long story short, when I was 10 months old I suddenly went deaf; Doctors couldn’t figure out why until I was around 5 years old, thus when they figured out that my hearing loss was due to an overgrowth of tissue in my inner ear canal. I had no history of infection and no history of injury. They removed the excess tissue, and I’ve been able to hear ever since & haven’t required hearing aids. I’m currently 23. I’ve tried searching Google for any connection to hearing loss & EDS and I can’t find anything. I’ve searched for anything it could possibly be since I damn near first got a phone and I’ve found absolutely nothing or anyone who can relate. According to my mom, the doctor said it was due to a connective tissue disorder but that she can’t remember what it’s called. This was in 2007-2008 btw when EDS was more undiscovered. I wasn’t diagnosed with EDS until I was 19, particularly HEDS due to my joint hypermobility, my extremely soft & loose skin, and how I’m so damn injury prone. I was so relieved when I was given an HEDS diagnosis because my whole life I’ve felt like I’m weak and have been called a “pussy” by people. It would be such a relief if I could also find out if my overgrowth of tissue in my inner ear canal was also a result for HEDS so I no longer have to overthink & wonder. Idk if this is relevant, but I also have gigantomastia (I wear a 36i & have a body fat percentage of 29%) so I’m uncertain if that’s also connected to the excessive tissue in my ears or if there’s something else that causes both that happens to be separate from my EDS? My cousin (my dad’s half niece) also has gigantomastia but nobody else in my family is also diagnosed with EDS or has had hearing loss due to a connective tissue overgrowth. My mom did develop arthritis at the age of only 41 and is double jointed, which I explained was unusual and she should probably get checked for EDS since it is genetic and I am diagnosed but she never had any hearing issues or tissue overgrowth issues & I have no other lead to the hearing loss being related.

Hi everyone! I was recently diagnosed with EDS about 2 months ago after dealing with a significant amount of pain that no DR has seemed to be able to figure out. I was wondering if any of you are dealing with pudendal neuralgia or nerve compression? If so how have you been managing pain? Are you seeing a specific doctor? I'm so lost as to what to do right now or who else to see. I have been dealing with this since January and am truly at my wits end and don't know where else to turn. Any advice is welcome at this point I am willing to try anything. I'm currently in physical therapy but it doesn't seem to be any help right now.

Thank you for any input