r/hypermobileEDS

Hello, first time posting.

My mum sadly died last month after a very long fight with cancer and other issues, and now I feel as though my body is grieving more than my mind. I'm back at work in a physical job now, but I'm not even a week into working and my body is screaming in pain and exhaustion.

Has anyone else experienced something similar, and how did you go about easing the pain and symptoms?

Thanks x

Hi I’m diagnosed with hEDS. Does anyone else deal with ribs in your upper back subluxating throughout the year (usually in my sleep but sometimes when I’m just living life)?

How do you support the area and minimize the excruciating pain? It’s 50/50 on if I can get it back in or not.

Like would a shoulder brace help or is that entirely the wrong area to support? I can’t think of anything created to help specifically that weird high upper back, ribs in the back, area. And once it subluxates, yikes there is a galaxy of pain for quite a while.

Please help!

Hello! I am curious if anyone with hEDS has taken testosterone (for any reason) and noticed a change in musculoskeletal hEDS symptoms? Or any symptoms in general? I know hEDS tends to be worse when you’re female because everything is sorta stretchier from the get go and also because the hormone cycles can make stuff harder. When my sister started Estrogen, her symptoms got worse so I wondered if it might work in reverse.

Hi everyone! I've pretty much known my organs weren't situated right in my body since I was a kid, but never had the words to get anyone to take me seriously, and never heard about EDS or that hypermobility is a SYMPTOM, not its own category, and have only known that loose organs could possibly be attributed to something tangible, like my now-diagnosed EDS and hypermobility, for a few months now.

So anyways, other than keeping track of which organs are out of place and what that does to my body, what else is there to do? Any sort of symptom management out there anyone's heard of? I am *so* uncomfortable *everything* is out of place today except maybe my lungs

I suspect i have heds have gone to lots of doctors and always get gaslight. I pass the tests for it, but thats not what were talkingn about, i experienc knee lain on the daily from hypertension,sublaxions, and dislocations. I am looking for a functional brace that only limits hyperextending and support, i need one i can just buy online and is under 200$, if there are ones over that limit i would still like to hear them tho! If you dont have any brace suggestions are there brands or keywords that i should search to find them?

Anyone else learn what EDS is and start seeking treatment/help and start to realize they may have POTS or some form of dysautonomia?

What have your experience been like?

I dont pass out but I "go dark" my vision goes black and I get wobbly/shakey, I have been doing that since high school. It happens when I stand, stretch, or yawn too hard. I spend some days so dizzy with the kaleidoscope in the lower part of my eyes. My fitbit registers that my heart rate jumps 25-30 points when I do the going darks or when I just walk to my kitchen for water. I am not unhealthy or overweight, I was in the military for 8 years.

Finally seen a rheumatologist and received an official diagnosis. I'm relieved to finally be diagnosed with something that feels correct! I'm also overwhelmed with information on how to help with symptoms and not really sure where to begin.

I'm 31F and 9 months post partum with my first. While I have had symptoms all my life they have really come to a head on my PP journey.

I'm curious to know how others PP has been. I have been underweight my whole life and naively thought I would suddenly keep weight on after pregnancy. The 35lbs I gained fell over rapidly and by 3m PP I was below my pre-pregnancy weight.

Now I'm in near constant joint pain. :(

Edit: hEDS diagnosis

(NOT DIAGNOSED YET) I just started wood working as a part time job and my wrist keeps trying to pop out of while sanding, does anyone have advice on how to make it happen less? Like kt tape or those wrist support glove things?

Hello!

I am currently in the process of getting an hEDS diagnosis! I’ve met with a rheumatologist and meet the diagnostic criteria for and also have an extensive family history on my maternal side of hEDS symptoms. I do however also have Shuerman’s Kyphosis, and it’s bad enough for me to have been recommended surgery. I also have slightly blue scleras. Lately, I’ve been spiraling about the possibility of kEDS because of my kyhosis and blue scleras. To clarify, I do not meet the diagnostic criteria for kEDS when I compare my symptoms to it, have had a genetic test rule out all testable forms of EDS, and my kyphosis onset was with puberty. I just also know that my genetic test was consumer grade and has a lower accuracy than medical grade tests and there can be abnormal presentations. While I sit around and wait for my rheumatologist to get back to me on if she’s concerned about kEDS or not, I wanted to ask if any of you who have had other forms of EDS ruled out through genetic testing also have Shuerman’s Kyphosis or blue scleras?

Hi, I hope it's okay to ask here. I'm 6 months (27 wk) pregnant with hEDS and owwww. I'm really struggling with SPD, where your pelvis starts to separate and... Look, I'm sure y'all understand that I'm used to pain. But this is SO much worse than it's ever been, which I expected, but ........ Ow.

So my question is:

1. Has anyone who had bad SPD found any support with the pelvic belts or belly bands, and

2. if so do y'all have any recommendations?

I'm going to ask my OB for a referral to a physio at my next appointment, but like... I'm in so much pain every day I've been in what I refer to as a flare for the better part of a month. I need a fucking break. If there's anything y'all could recommend before I can get into a physio I'd really appreciate it — I'm just so tired of being in constant severe pain.

Has anyone taken Moxifloxacin antibiotic? I did a year ago without knowing I had a connective tissue disorder and regretting it now. I did a steroid dose this year due to my lupus and I think it made my symptoms so much worse. Just wondering if anyone has taken this or a fluoroquinolone antibiotic and what their experience was like.

Hi all,

I’ve been recently diagnosed with hyper mobility and am on a waitlist to see a specialist to diagnose hEDS. I’ve been having pretty decent health issues in the past three years and had to get an FMLA to deal with work. I have heard everything from fibromyalgia to MS. However, my rheumatologist is pretty convinced I have hEDS as I scored a 7/9 on the beighton test. They have now referred me to see a doctor that specializes in it.

I have a lot of symptoms that align with it but one I’ve been having recently, I can’t seem to find much about. I don’t know how to describe it other than this; I am so tired that it often feels like my brain isn’t getting enough oxygen. It feels heavy ish I guess?? And I’m just really exhausted. Like having trouble getting through the day kind of exhausted.

The only thing I can find that sounds like this is air hunger but from what I understand, that’s mostly associated with the chest. Something else is brain hypoxia which is a medical emergency and is associated with more concerning symptoms I do not have.

Any ideas?? Is this something that’s common with hEDS?

So, I’ve had pretty bad shoulder pain for the last two weeks, I’ve seen my GP about it but he’s said its normal EDS stuff and i should just rest it - the issue is i don’t think it is.

Basically it feels like a blade is wedged in my joint and that its sending pain up my collar bone? When i lift my arm above chest hight it hurts so much i feel physically nauseous :( i rang NHS 111 and they just said “go to your GP”

From what I’ve found online it seems like it might be damage to the superspinatus? But regardless…

Anyone got any tips on how to get a doctor to not write something abnormal for you off as just your EDS? Im at a loss here

Hi! Im currently seeking hEDS diagnosis. I finally got to meet a specialist and essentially the result was "almost yes but technically no", I missed a point because ive only had one hernia and not multiple. I know I was nervous at the appointment and I have pretty bad memory issues so I remembered a bunch of stuff that I could've mentioned later, some of them being:

a hole in my heart as a kid (it grew together on its own),

stretch marks appearing on the backs of my knees, thighs and groin area before puberty and growth spurt,

the fact that ive had braces bc of dental crowding,

clicking jaw that also gets stuck,

I pee super often and have difficulty holding it (I only talked about nr2...)

Recently got officially diagnosed with POTS (that same morning actually)

I still have my genetic testing results coming in August, what should I do? She gave me her contacts if I have any questions, should I email my doc with the info I forgot before or ask for any kind of second opinion or should I just want for the gene test results first?

Its so hard to let go of this im driving myself insane with this :C

To also add, my mom and grandma have had all of the same issues and symptoms that im currently dealing with.

Any advice is welcome ❤️

Edit: currently with HSD diagnosis

So after 30+ years of symptoms, 1.5 years of subluxated rib, torn ACL from walking, getting sent back and forth through the K*iser system… today, my PCP (who previously refused to diagnose me because she “isn’t comfortable” due to the complexity) finally agreed to diagnose me with Hypermobility Disorder, “pending genetic testing for EDS”. I had to explain to her that hEDS does not, in fact, have a genetic marker, and that I actually already did genetic testing and it’s in my file, but ultimately I told her I don’t care about whether it’s HSD or hEDS at this point, because the Rheumatologist working on my MCAS diagnosis implied that he wants my PCP to make this diagnosis before we jump into confirming MCAS as the source of some of my issues and treating it.

At this point, I really think I need a specialist, but I haven’t been able to find one in my area that’s taking patients, so I’m kind of just begging for scraps at this point. Wondering if I should call the K*iser overlords and beg them to find me a provider that is more comfortable working with….. this *waves hands at self*

Does it matter whether it’s HSD or hEDS? Am I going to be taken more seriously either way? I know the answer is no there. But will it affect my treatment plan? Either way it seems all I’m being recommended is physical therapy (MCAS stuff aside). Which…. I can’t get scheduled because healthcare system broked.

Also, I remember reading a report from the EDS society that seemed to imply that HSD and hEDS might be consolidated in terms of diagnoses, so does it EVEN FUCKING MATTER 😭😭

I did not sign up to play this shit on hard mode