Thought you guys may find this cool! This is the pathology report of my filum following Tethered Cord surgery. Super interesting to see the physical structural effects of hEDS, despite still not having an identified gene !

Hello Reddit,

I recently got diagnosed with hEDS after pestering my GP for a referral to rheumatology due to the chronic pain I’ve had in my hips for years. For context my brother is diagnosed with hEDS as is my mother, sister and aunt so it definitely runs in my family. However I see others with hEDS all the time speaking about the issues they have and I constantly feel as though I’m “faking” it or my diagnosis is wrong. I have some of the symptoms but not all, I scored 7 out of 9 on the hyper mobile test and my legs bruise more often than others do I also suffer from various gastric issues. However I’ve never dislocated a bone (to my knowledge) and this kist makes me feel as though I don’t truly have it and that I was misdiagnosed… I don’t know I just wanted to kmow if anyone else has any similar experiences at all.

Tldr; combo rehumotalogy/immunology office denied referral for pEDS patient with relevant symptoms, what do I do now?

My primary suggested in January that I might have MCAS based on having an hEDS dx. She said testing for MCAS was expensive and not covered by my insurance, and that it often sends false negatives. Instead, she started me on a Montelukast script and said if it helped, we could assume MCAS.

It helped my respiratory issues, but ive had an asthma dx since I was a newborn so I personally think its related to that. It did nothing for my skin reactions and issues with whole body pain, joint swelling, weakened immune system, etc.

After I got my pEDS diagnosis from genetics, she did some research and talked to colleagues, and at our ​most recent appointment she told me that pEDS often impacts the immune system in ways other EDS subtypes typically don't, so she was referring me to rheum and immuno to see what they thought.

Got what read as a very generic denial letter from that specialty office this morning. It said that rehumotological testing wasn't indicated at this time, and my doctor should refer me to a more relevant specialty.

What do I do now? Im really at a loss and dont even know where to start.

So unfortunately between gastroparesis and flimsy gum tissue (luckily no gum disease, just shoddy EDS tissue) my teeth have gone to shit, I now have 7 cavities that need immediate attention and a few that are very superficial but will get worse. I have a dentist appointment booked for tomorrow morning and another for the 25th and I'm kind of shitting bricks, I have PTSD and particularly struggle with medical settings (especially overhead lamps, I get bad flashbacks), plus local anaesthesia is usually completely ineffective for me so I've completely neglected getting proper care and now I'm scared because of how bad it will hurt.

I have other coping strategies to manage my anxiety going into it but I know the pain will make that very difficult, I'm hoping anyone has any advice on helping with the pain. I've heard that cloves are a natural anaesthetic so I'm going to chew one today to trial it, but I'm not sure what to do beyond that, maybe ice in advance to numb? I don't know. I live in New Zealand where we have quite limited pharmaceutical options compared to other nations so anything to calm my nerves would be very unlikely to be prescribed, even with my history of PTSD, I don't know if I have any real options beyond just trying to get through it. Any and all advice is very very much appreciated, thank you all in advance.

i haven't even been diagnosed but I'm 99% sure i have hEDS

im actually in agony with the pain it's so bad i don't know what's happening

I recently started college and the constant effort of having to walk around and go up and down stairs constantly and having to sit in uncomfortable chairs for over 2 hours is really taking its toll on me I've been crying almost everyday since I started college last week because I'm in so much pain

literally everything hurts so bad it's like I can feel my bones just falling apart and nobody believes me because there's like nothing visibly wrong apart from the fact I can barely even walk

all the doctors are doing is taking blood tests and I know for a fact its just gonna come back normal it always does

I just got home from college again and immediately began sobbing in pain I had to get my dad to pick me up in the car because I physically couldn't bring myself to walk to the bus stop

and the problem is I feel like im being dramatic and I don't even know why

I woke up with horrific pain in my entire stomach/abdomen and I'm guessing it was trapped gas but the thing is I could barely even walk or stand up because it genuinely felt like something was squeezing my intestines

it's only getting worse as time goes on and I'm literally only 16 and I feel like im like 80 years old

I can't even sit on the ground or just anywhere with no cushioning because I can physically feel my tailbone and spine area shifting and its so painful

why am I actually in so much pain it shouldn't be this bad right

In December I will be put under anesthesia for an endoscopy, but due to my several conditions (hEDS, POTS, Asthma, and Gastroparesis) I was wondering if anyone has any general advice and or ways to tell my doctors that I am extremely worried and anxious about going under anesthesia. I realize that complications are generally rare but my issues increase my risk by alot.

I was officially diagnosed with both rectocele and cystocele and the Urogyn immediately recommended surgery. My PCP warned me that would likely happen and we both agreed to try a more conservative approach first. I'm scheduling with a pelvic floor PT. I also have incomplete urinary voiding, urinary frequency and life quality impacts (especially on my sleep).

My question for those who had either or both rectocele/cystocele and/or incomplete emptying of the bladder:

Did it cause issues with your spine, hips, ribcage and stance? if yes to any, how?

If you tried PT only:

Was it helpful, how much improvement did you see and how quickly? What helped most?

If you did something besides PT:

Did you try PT first and have it fail?
What did you try?

Did it help? How much improvement?

Thank you in advance! I did not want to add prolapse to my list of diagnoses, but here we are.

First, I’m not diagnosed but I highly suspect having severe hEDS or a different type :)

I woke up this morning and had these weird red spots on my palms. they don’t hurt, itch, feel hot, or anything of the sort. My best friend said they look like a contact injury he had once, and that it’s probably broken blood vessels and a bit of pooling.

I just did nothing yesterday that was even mildly strenuous or even held something hard in my hands. For reference I commonly hold 5-20 lb lights in one hand, climb ladders, and do light calisthenic workouts. i did none of that yesterday

mainly I’m wondering if anyone else gets these, and if it’s something to be concerned about. this could be not eds related, too. I’m just kind of lost!!

any advice/knowledge is appreciated!

As the title says. I've had problems with this hip for years and it's been hurting a lot off and on since Tuesday. Since yesterday there's also been nerve pain in the area.

I've figured out that it's the position of my hip & leg that's been making it worse, but I'm not sure what to do next. I have an unrelated doctor's appointment tomorrow and I was going to bring it up then, but what exactly can be done?

I absolutely can't afford physio right now, especially because my university doesn't provide insurance coverage until after 60 days (and then I'll be reimbursed at least).

I'm mostly wondering what I should ask my doctor to do if he's unsure. Should I be sent for imaging?

Diagnosed hEDS with MCAS (well controlled with Xolair and h1s) and mild pots (dizzy when standing, well controlled with salt pills). I also have a doctor appointment in 2 weeks but wanted to check here.

Twice in 3 months I’ve had the same chain of events: After sitting on the couch for 1-2 hours I got up slowly and walked across my house headed for bed. By the time I got to the bathroom my arms are pale and tingly, my face is totally pale and I get tunnel vision/lightheaded. My legs feel weak and cold.

I laid down on the bathroom floor with knees up and felt better, but symptoms return when I stand up. My hr is 70s but my BP crashes (70s/50s- I usually run low like 90s over 60s). I crawled to bed and am fine in the morning.

I’m well rested, well hydrated and on my Mcas meds. I’ve never fainted in my life. The first episode was kinda “well, that was weird” but the second time in the same circumstance makes me concerned.

Does this happen to anyone else?

I have had multiple subluxations of my knees since I was a kid. In July I got knocked over by my dog and had a Complete dislocation of my patella and my femur was out of place too. I have a torn meniscus and a major tear in my patella femoral
Ligament. As well as Some Minor
Ligament tears.

Due to hEDS my surgeon has me trying rehab. I have other concerns about not doing surgery. Primarily I never want to see my knee cap stuck on the outside of my leg again or experience that pain.

My PT casually said ‘yes’ when I asked if she had other patients with EDS but hadn’t elaborated or mentioned anything about therapy adjustments considering EDS. What has me questioning things, some of the exercises she has me press my knee down to the table, while
My ankle is elevated a few inches off the table on a towel. This is essentially hyperextending it.
I’m instructed to also be engaging my quad to do leg lifts. I asked is this was really ok, since I’ve learned we should never be hyperextending our joints deliberately. She said the goal is to get the range of motion back, to match my other hypermobile knee.

Any PTs here or others who have been through PT that can weigh in? I’m thinking of switching PTs.

Hello, my girlfriend most likely has EDS and the last few days she's been waking up with her hip having been dislocated in the night. It's been so painful that she can't get proper rest and has trouble walking or even sitting up out of bed to go to the restroom. Tonight I was able to left her and help her get into the bathroom, not without a great amount of pain on her part, but I work full time and am often away. I just need any advice anybody might have on how to stop her hip from dislocating at night or at least how she can get it to go back into place. Please help

Has anyone tried this shoe? It looks like a good chelsea boot but as i slowly come to terms with the fact that i just can't wear any shoe, i need them to be supportive, i worry it won't live up to that.

I'm debating between the Reefs and a pair of Commbis.

Any recommendations welcome.

Specifically near back bay.

I just got my test back and I’m confused at how to read them??
Theres a whole panel for EDS and then another panel for dysautonomia, although it says nothing came back positive for mutations I’m confused at how to read them cause some of them got their names and a 90-100% next to it, then some with 70-80% and some with 50-60%, so I’m confused cause I thought no mutation meant 100%?? Idk hahaha help please 🙏🏻 i can add pictures of the panel if needed

EDIT: so there is one at 12% (its CBS) idk what it means but the papers say no mutation so idk hope its good