hi all :) recently dx HSD, re-evaluating next year after updated to diagnosis.
i’ve always noticed that despite not rubbing my skin on anything, my skin, especially in more thin and fragile areas feels sore, and raw. almost like a carpet burn?? and i look at the area and it’s not even red it looks fine.
is this something that anyone else deals with? could it be related to EDS/hypermobility?
i’m looking for a fitness coach who specializes in hEDS and POTS. I need to completely relearn how to exercise with this. i want to learn how to stop bracing constantly and to stabilize myself. are there any recommendations? online is preferred. ty!
ive always answered "no" when a dr asks if ive ever had any dislocations etc but this round of my shoulder acting up is definitely having me wondering the truth😭 this is what it looks like when I fully relax my muscles. i can conciously tighten my muscles to hold it up for like an hour at a time but that gets sore FAST
im on waiting list to see a geneticist, saw rheum when i was 16 (im 20 now) and was dx with "benign joint hypermobility" because she was incompetent and it was literally her last day so she didn't gaf💀 she just did beighton score and ASKED if i have stretchy skin. didn't even check for herself, I said "in some places" and she marked it as "no" and said that that ENTIRELY DISQUALIFIED ME from having any form of eds🙄🙄
my mom was dx with hEDS in the summer but it's from a different country so my pcp is unsure if that is able to count as family history in the criteria
edit to add:
the drooped shoulder is causing shooting pains down my arm and my hand starts to go numb if I let it droop for more than a few minutes, and there was an (albeit mild) "injury" that started this a few days ago. i basically stretched it a little too much and then a bunch of things crunched and now it's like this. this has happened countless times in my life (multiple times a year) to both shoulders. i can't get it "back into place" but it goes back to mostly normal after a week or two. its been happening more often as i get older but im only 20 so im wondering if it's bc of increase in breast size (had A cups until i was 16, now im a D or DD)
Sometimes when I lay on my shoulder weird when I shift out of that position my shoulder feels kinda hard to move, not a full "dead arm" feeling but it's more difficult to move the arm. It also seems to have a limited or weird range of motion, almost like it "pops" at a certain point. It goes away after some time, but I don't know if it mechanically went back into position or if it was a nerve/muscle thing that faded after some time off it. There's no pain, and no sounds, but other than that it seems like it could be a subluxation.
One of my doctors thinks I might have interstitial cystitis (IC) and wants me to try medication for it but I recently learned that hEDS can affect your bladder as well, which I didn’t know, so I would like to know how people with hEDS with bladder problems suffer before I start a treatment for IC.
I get that this is a TMI topic and can be embarrassing but I think that we should talk about it more, even if it’s privately, so those of us who struggle feel less alone. If you don’t want to answer here but wouldn’t mind sending a private message, please do before I maybe start a wrong treatment… 🙏🏼
Hi, never posted on reddit before. Im a 22f that just got confirmation of having hEDS after suspecting basically ever since i can remember.
Ive dislocated my knee horribly, shoulders, ankles, you name it ive done it. I also have horrendous chronic pain at the base of my neck/ top of spine and lower back pain to the extent of winding me just when I stand.
I went into the doctor looking for an official diagnosis but also some way to help, and all i got was ways to manage but theres no “cures”. Ive gotten X-Rays and blood work as well and theres nothing they can pin point is wrong or causing my pain.
How did everyone come to terms with the fact the pain doesn’t go away.. its making me so freaking sad that this is just how it has to be. Like ive been living with it for years so nothing has changed, but having it confirmed theres nothing but management to be done was heart breaking. Ive already been dealing with a bunch of mental health stuff and this feels like the cherry on top lol.
How do I accept that this is just how it is?
TLDR: how do i mentally cope with my hEDS chronic pain that has no cure
I have done loads of research, and I based on everything I've seen; I could definitely have Hypermobile EDS or at least HSD. The internet says that since there is no genetic test for hEDS, and a diagnosis is purely clinical, it is important I find someone who is experienced with hEDS. I mean, your regular joe doctor probably won't know what doughy or velvety skin feels like, right? Unfortunately, there isn't anyone near me on the Ehlers Danlos Society website that isn't a physical therapist or a geneticist.
So, is it really that important to find someone that has special knowledge in hEDS? And how on earth would one do that? Could a physical therapist or geneticist diagnose?
Also, how hard was it for your doctor to believe you? Is bringing a thorough joint and medical history necessary so they take you seriously and not try to write it off as something else?
Anything else I should know?
Thanks in advance!
just curious, has anyone with heds taken cymbalta (duloxetine) and i also am suspected to have POTS and i also have Vasovagal syncope. If you have taken it did you feel super overstimulated by everything? i keep getting like waves of this static and energy and i figured its just my nerves being stimulated but just wanted to see if anyone else has dealt with this? what did you do that made it better?
I don’t know if I have hEDS or not. I’ve looked over the diagnostic criteria and from a self-examination, I’m 95% sure I have it. My mom has worse symptoms than I do. She is almost 50 and can touch her thumbs to her wrists. When she was younger she used to be able to put her feet behind her head.
I want your input on my situation because you have experience with EDS.
My shoulder has been in this state for almost two years. I got an MRI yesterday and it was “unremarkable”. I’ve had X-Rays that came up normal as well. My shoulder ached more after the MRI, the vibrations agitated something in there.
I have full range of motion with my right arm, but there is this clicking within my shoulder, it feels like the joint? It doesn’t hurt when it clicks though. My muscles used to shudder really bad when I would move my arm from the side to in front of me.
I’m going to try to describe the pain best I can, but I find it difficult to properly explain it.
Right about where my tank top touches my shoulder, I had this slicing/searing pain, on the outer side of my shoulder above my tattoo it feels like there’s a burning pressure. My tricep constantly aches, and as of Monday I had pain in a new spot. It was in my armpit and felt like uncomfortable pressure. The red X in the second picture is where I feel pins and needles if anything brushes my skin. I don’t know if this is related, but recently I’ve been able to pop my the vertebrae between my shoulder blades just by pulling my shoulders back. My shoulder was so bad off that I couldn’t even write without feeling intense pain all over.
I would appreciate any and all advice, I just want my shoulder fixed 🙏
EDIT: I went to see my chiropractor and he put my shoulder back in the socket
So hi
Trigger warnings for abuse and sensitive topics
I started looking into conditions online after my health started chronically failling everywhere and heard of heds an dismissed it thinking i only have 90 degree fingers on the beighton scale so that musn't be it . But it really seems to be and I've been having mysterious chronic pain in my foot that has now reached my leg .
But I've heard people with heds say that the beighton scale is not that accurate and hypermobility can exist beyond that
Nothings wrong with my bloodwork so as you know the usual dismissal as I'm not even 20 yet so how could i have it .
I just had lower vitamin d and slightly high uric acid and they blamed it on that and made me take vitamin d pills and avoid foods with higher uric acid content .
But it's obviously not that so my leg only gets worser and worser .
I have gotten xrays and they're normal .i did finally convince my orthopedic to get me an mri scan and it revealed that there's fluid in my third and fourth joint of foot. My rehumatologist prescribed more bloodwork and it was all negative .It's not any arthritis or organ issue basically and paracetmol and some form of steroid hasn't worked either .
The reason it started was because i had dengue fever and took like a month off and my mother is abusive so she was pissed i wasn't attending my achedemics and hit me about it and stomped on my foot badly .
There is no evidence of physical injury on my foot like mircofractures but who knows those radiologists must've missed it .
I have also been taken to a psychiatrist and have gotten the excuse of psychosomatic pain and that it's all in my head I'm being a weird high schooler at that point and faking pain which literally gets me nothing but weird stares hurtful comments and condescending and mean comments not to mention exclusion .
but my theory is that it's my shin that got hurt and the pain is manifesting in the middle of my foot instead .
It gets worse with action basically and i have been disabled basically and it keeps getting worse . It swells post activity .it looks like quite reddish and bruisey afterwards and i can't move much obviously and it bends at a triangluar way sometimes .
Idk what's going on I'm tierd of this and I've come here to ask does anybody know whats going on ?
My leg looks visibly bent in a way yet no doc considers it . I don't think it's misaligned either cause nothing was made out in the mri and it was just fluid between joints .
Thank you for reading this wrong .
I got a tattoo on the last Friday the 13th and when I came in for a touchup on another tattoo the artist realized that it shrank. Another artist asked if she used a 3 and she said she used a 7. I was wondering if anyone else has experienced this?
I had my first ever rheumatologist appointment yesterday and I could have been my own rheumatologist. He did NO blood tests, no imagining, no nothing. He grabbed the skin on my arms and chest and pulled. Rubbed my hands (yes… rubbed) and that was it. I showed him all the pictures/videos of everything hypermobile that I can do and his student was more interested in them than he was. He told me, “light exercise, wear braces, and you’ll be alright.” I already do light exercise because I have POTS and I wear knee braces and a back brace because my knee caps move out of place when I walk and my lower back hurts so bad when I walk too long. And I wear a compression band over my hips because they pop out when I walk. He told me that he could not diagnose me with hEDS because clinically he just can’t do it. I woke up today, had a new office visit summary and at the assessment part of the document… This is what it said word for word:
“Hypermobile joint syndrome of multiple sites
Hypermobile joints multiple sites with hypermobile joint Ehlers-Danlos spectrum disorder.”
I’m so confused!!!
I told my primary care physician and she apologized for how badly the appointment was and I told her to just send me to a geneticist. And she sent a referral, so I’m waiting on a call from them. I am so confused and irritated. But I know that going to a geneticist is a good thing and I’m happy to be going to one. Has anyone had a similar experience to me?
Hi I’m 23f, just recently diagnosed (about a week ago) and looking back at my life a lot of things make sense now
Examples:
As far back as i remember I’ve had a “weak bladder”, coughing, laughing, jumping, being ill, all caused minor leakage/ inconstancy
I have always twisted my ankle just walking on flat ground, tripping over nothing
I have had 2 birth control coil displace
Migraines have ruined my life since I was about 7
And there is so much more, I just need to know I’m not alone in this realisation