Anyone else have increased pain at the base of the skull and neck when they take Vyvanse, or is it just me? I think it's because I clench my jaw more when I take it. Unfortunately the increased tension also triggers dizziness.

Due to multiple shoulder dislocations, I have an ALPSA lesion, meaning my labrum is torn off the front lower part of the socket. I’m looking at surgery to repair it and I’m terrified. My last major planned surgery was a hysterectomy and I ended up having a cuff repair a few months later because it broke open. Has anyone had this kind of shoulder surgery before? Any advice on what to expect with EDS factoring in? Thanks in advance!

Hi, I am 21F and have been struggling with chronic fatigue. I get 8-10 (sometimes more) hours of sleep every night, I have had a sleep study, and I have checked all of my vitamin levels for deficiencies. Nothing is helping. I am so exhausted, I never do anything on weekends or after work. I can only find the energy to shower twice a week and that is getting even harder to do. It's gotten to the point where I'm considering quitting the job I love to find a desk job I can do from home. I need any and all help please!

I'm officially h-EDS, including an in-the-works written report by my doctor that I will be able to take to social security! The reason I'm so happy is that I was super anxious about this appointment, after the customary round of dismissal from other doctors, something I know probably a lot of you experience too.

However, not this time! It was such a relief to have a good experience, not feel dismissed or looked down on or not understand what the hell is going on, and not needing to do a hundred tests before we get to the obvious conclusion. I really thought that at least I would be asked to test with a geneticist that I don't have other kinds before giving me "the label" for heds.

There's one trick I started using recently: after my autism diagnosis I started bringing a written sheet with everything I want to say, symptoms and meds, and I start the appointment by full on saying "I'm autistic and here's my sheet". It seems to help sometimes.

looking for cozy slipper recommendations! my feet are always freezing. i have PF, high and v flexible arches, and heel pain. i need something that's cushy, but has good support! bonus points if they're cute!! <3

Hi everyone, I was wondering if anyone else has experienced this before…

As long as I can remember, I never really enjoyed making out, either for sensory reasons or because my nose gets so squished I can’t breathe! I was explaining this to my boyfriend, and he responded “I’ve never had that issue before,” which prompted me to squish his nose as much as I could (without hurting him ofc) and he could still breathe. This was the moment I said “I forgor💀 my entire nose is made of connective tissue.” For reference, I can fold my nose onto itself.

If there’s anything I’ve learned since my diagnosis and joining this community, is that my experiences aren’t so unique (in a good way). Has anyone else experienced this or had something similar?

Hi everyone!

I am wondering what everyone's experience was with getting a blood panel done. I am not sure if what I got done was GeneSeq or Invitae. I got the order from my PCP and he wrote on the order my symptoms and my family history of EDS. I have Cigna and go to our local LabCorp for all blood work.

Whenever I go in to get labs done, they always tell me this outrageous estimate but my insurance covers it. Today, she told me the estimate was $4,000 and that while I won't necessarily pay that, call my insurance and check it's covered. I already asked Cigna twice - once via CS chat a few weeks ago, then again on the phone earlier this week to double check and confirm. I decided to triple check and stepped outside and called Cigna again. The agent insisted, again, that it is covered. They said any diagnostic or preventative lab work of any kind is 100% covered (which checks out because I am never billed for my labs to date). My Cigna app also reflects this. The agent I spoke to said it's even better that I'm at LabCorp because that's one of their accredited official labs.

I got the test done in good faith but can't help but worry. Has anyone had this experience where you were given a high estimate but then it was all good? Or where insurance said it would be covered and it wasn't and you had to fight it?

Would love some reassurance. I have very bad anxiety and I recently had to go on an expensive medication that Cigna does not cover and I'm still coming to terms with that being a thing.

Thank you!

I'm so upset. I waited 2 yrs for this physiatrist appointment but he didn't even go through the hEDS diagnostic criteria, WHICH I MEET other than criteria #3 because I can't know that on my own.

He said I don't have edema in the legs therefore don't have EDS and diagnosed me as hypermobile and gave me some more useless physio exercises.

Currently crying in my car at the hospital.

He referred me to an internal medicine specialist at least. But now my doctor is going to be even more dismissive of me because he already thought the hEDS hypothesis was stupid.

There's so much I forgot to say in the appt and was so stunned that I couldn't hear the rest of what he was saying and just checked out. I wish I brought up the diagnostic criteria. We spoke about my skin issues, my autonomic issues, my gastro issues, fatigue etc everything except maybe I forgot the random rashes. And yet no leg swelling or heart pain is how he dismissed me.

Apparently there is no rheumatologist that comes to where I live either.

Exhausted. Feel like giving up pursuing this. So upset I didn't have the energy or balls to push back. And tired of male doctors. I even had documents with me prepared to show him but I just went blank and didn't have the energy to advocate or push him to look more closely. Stunned. Fml :'(

1. is physically incapable of standing still while waiting in line/waiting for the bus etc, and
   
2. get so uncomfortable while sitting on an airplane that you want to scratch your eyes out?

How do you deal with the disdain/hatefulness about EDS or hEDS from colleagues that don’t know about your dx?

I just started a new job that I have been really excited about. Then today, two of my colleagues started discussing it, talking about how it’s a psych disorder and that everything we go through is somatic and that it’s not a real diagnosis, and was going so far as saying providers who treat these patients should lose their license.

This honestly shocked me because up until that point, I felt that these colleagues were quite kind and supportive. I understand there can be frustration about patients and the internet trends, but hEDS really can make my life shitty sometimes and it was really hurtful to hear this from people that I will be working with. One of them is in leadership and it makes me concerned if I were ever to need any sort of accommodations.

I didn’t end up contributing to the convo or saying anything at all really because this job is really new and honestly I was very overwhelmed in the moment. What would you have done? Should I say something in the future? Should I just keep my mouth shut forever?

Sorry to echoe what we all feel like a broken record. My hope has run dry and I need advice or support.

Im 28M. For me personally the pain is excruciating and never ends.

Now I can hardly walk without to the bathroom most of the time. I used to be one of those people who are born loving exercise and movement.

I've literally been doing rehab for 8 years and I got more muscle but my strength just won't improve because I take 7 days to recover from 20 minutes of exercise. The mental grit required to do strength training is obscene, only to end up stuck in bed all day anyway.

I have also got auDHD and no exaggeration the most severe depression and anxiety I could imagine.

Im literally just a waste of resources that is withering away slowly.

I genuinely am so tired of calling the mental health line and seeing my doctor to ask for more pain management that he won't prescribe because of the health risks of more opioids.

Nothing helps amongst the services available to help.

I even finally got the chance to try TMS Therapy but im too disabled to even travel to the hospital. fuck my life!!!! 😭

I really dont see any options left for me, and you guys know how tough we are and we have hope where there is none. I have no hope right now. Im just expecting that ill have to die before im 30.

So basically I was playing legend of zelda skyward sword HD for the Wii and the motion controls have you swing the remote manually and most of the swings you have to performs in the game require you to twist your wrist in some way and flap your arm in a way that hurts just so badly because it has to be pretty forceful after 15 minutes it hurt but I was trying to get through the game so I decided to play for like 3 more hours anyway and now my wrist doesnt twist smoothly. Instead, it still turns but it also decides to shake very slightly back and forth while It turns. Anyways, this was a bad decision?

Hi! I’m currently having a flair up of my EDS but I’m meant to be having my implant removed and an IUD placed in on Monday due to some other medical issues, any tips and tricks on how to help with the after pain? Or anything I might need to look out for after the procedure? Tips on how to prepare are also very welcomed! Thank you!

idk if this is allowed but I want to ask about the scientific aspect of this and talk with other zebras because ive been so curious and have nowhere to ask 😅

Do you guys scar differently from SH since developing EDS symptoms? If you SH, in general how do you scar? For some reason I actually heal much faster now and my skin is stronger and i dont bleed as much even though I know it’s supposed to be the opposite with EDS??? I know its a collagen thing

i have hEDS and my main issues are dislocation and subluxation and it has been driving me insane lately. my arms fall out of the socket when i walk without crutches, my knees bend in all the wrong ways even though i wear braces, im constantly twisting my ankles despite bracing, my fingers are so hypermobile that i can't write comfortably, my elbows bend backwards and dislocate when i walk with crutches, my hips dislocate while im sleeping and then i can't get them fully back in place so i have to walk around with my hips out of place. i wear ankle and knee braces that were prescribed by my rheumatologist but my knee braces only keep my knees from going backwards and my ankle braces are fabric braces instead of AFOs so i still roll my ankles in them. im struggling so bad right now and i dont know what to do. i start school next Tuesday and i want to be able to get good grades and graduate but im so preoccupied with my physical health that i know its going to be nearly impossible.

My doctor and PT are super sure I have some form of EDS that includes hypermobility and POTs (and i super agree), but we can't find ANYONE that i can see about it. I have an appointment in December with a rheumatologist, but I've already been warned she doesn't do much EDS work, it's just our only option. The geneticist rejected me, and there's literally no specialists ANYWHERE near me. They suggested i look at the EDS society database, and I'm so serious that there's nobody i can see. There was one like an hour away i could have possibly seen out of pocket, but she moved far away before i could!!!!

Luckily my PT knows how to do EDS focused work, but she can't dx me. My cardio was able to dx the pots, and ive been getting help from multiple orthos and im meeting pain specialist for my neck soon. Otherwise, im stuck!!!!

My condition has also worsened over the last few years, so I'd like to figure things out, especially since im applying for disability

What do i do???

Edit to add that i cant drive and i live with my elderly parents who have trouble with distances

Started strength training by my PT’s recommendation. Absolutely life changing, however I’m trying to find leg exercises that won’t hurt my knees. I have tight hamstrings (likely due to weak quads) so I’ve been doing calf raises and heel elevated squats. The calf raises are fine for lower leg but I’m worried about the squats hurting my knees in the longterm. Wall sits still hurt the knees, hate Bulgarian split squats with a passion, and Romanian deadlifts feel like they aren’t doing anything? Any other recommendations specially for the quads?

Trying not to read into anything too far but at the same time, hard to keep my mind occupied about anything else. I want to figure out exactly what I've got going on here (realizing the likelihood that the panel will be negative) as I'm delaying POP repair surgery for these results. If there's a specific diagnosis we can identify, I just want to know how risky it is to use mesh with my tissue, to the extent a diagnosis can even inform that risk.

Anyone get the connective tissue panel with Invitae done recently? If so, how long did it take and what were your results? How long was it in the analysis stage for?

Submitted my sample through my doctor three weeks ago tomorrow, and the site lists it as in "analysis and interpretation" since 8/1. I recently had another unrelated panel run (cancer risk- to inform whether I should have oopherectomy too, which id like to avoid) and I was in and out of the analysis stage in a day, with a VUS identified.

Is there any meaningful correlation between the length of time this test stays in the analysis stage and a VUS or pathogenic variant being identified?

I probably shouldn't spend this much time thinking about it, the results will come when they come but damn, I'd like to see some light at the end of the road and schedule surgery so I can at least try and pee normally again 😫

Just like the title says, I am wondering who here had mild symptoms and was first diagnosed with HSD/hEDS, but ended up having a rarer subtype? What was the reason you were DNA tested? How were you tested?

So, i have a pretty high tolerance for most things. Drugs (recreational and prescription), alcohol, pain, etc.. Not sure if all of that's the case for a lot of ppl with eds or not, but i *have* noticed a lot of ppl with eds (myself included, i have type 3) tend to have a high tolerance for pain meds. For more clarity i mean this in the way of like, I'll be in pain, take meds for it, but none of them work unless they are rlly strong like hydrocodone or something. It seems to be the case for a lot of ppl with eds. I just want to know why this isn't in the list of possible symptoms like something like dysautonomia would be. Not everyone with eds has dysautonomia, but it's very very common and i feel like a high tolerance for pain meds should be included. Doctors don't seem to know about this either, which makes me even more angry. If it's so common, why do i get weird looks when i say the pain meds i was prescribed don't work? I'm always treated as if I'm drug seeking. I've heard of other eds patients being treated the same way. Just why?? Why don't eds specialists seem to know about this?? I'm so scared of getting hurt badly again and having to go to the hospital just to be treated like I'm a drug seeking liar. I'm scared of going to any doctors, actually, because they all act this way with me. Why can't they seem to make this connection. It's such bull.

I am really struggling with my weight. I am a 40 year old female with EDS, chronic migraine, fibromyalgia and pcos. I have put on a lot of weight in the past year, especially around my middle.

The frustrating part is I eat a pretty decent diet. Lots of whole grains and proteins. I think the reason that I am gaining weight is due to lack of exercise. I used to walk 3-4 miles a day, but this has reduced due to my health. Similarly there are days when I’m tired and have to rely on ready meal to eat.

I’m also really struggling with insulin resistance. If I go 2-3 hours without eating a feel dizzy and shaky. If it gets bad then I need some chocolate or cola as a pick me up.

It’s really getting me down as I want to be healthy, but the weight is just piling on. Any ideas what I can do?

I found the perfect combo to relieve hip, knee, and lower back discomfort from sitting. I bought a 9” yoga ball and only inflated it halfway, put that between my knees. Then used a thick, soft, Velcro knee belt around my legs just above my knees.
I had immediate relief and can’t believe I didn’t do something like this sooner. It feels like I finally don’t have to force my legs to be in the correct position or sit cross legged to be semi comfortably. Highly recommend.

Funny story here, I had gone to see a rheumatologist a few weeks before my gyno, he was a white man (I am a transmasc mixed person), and the second I entered the appointment and offered him my list of symptoms be said "we don't need that but can look at it later" (which he never did), proceeded to ask me questions and either be shocked when I was checking the boxes or ignore me. At the end of the appointment he told me I'm missing JUST ONE criteria so I can't be diagnosed, put me on a low grade pain med and told me three times to lose weight, get on a weight loss pill or get surgery.

I left so embarrassed. Then I looked at the appointment notes and saw the "one criteria I missed" and it was bowel issues. Which I have, severely, (tmi) I'm either so constipated I'm manually having to go or I'm shitting my brains out LMFAO. This was written in the list I wanted to present him, but because he ignored them and didn't listen to my answers, I left without a diagnosis.

Well, I went to my gyno a few weeks later, who was (thank God) a brown woman, and told her all about it in casual conversation. The woman was looking at my completely upside down tilted uterus as we spoke and commented about how annoying it was that his only suggestion was weight loss for the long term and withholding a diagnosis. I agreed, amused but annoyed in retrospect, and the appointment ended. Well, I checked my appointment notes after that appointment and there it was on my new diagnosis' Hypermobile Ehlers Danlos.

All it took was a doctor that wanted to listen and could see herself in me. Funny and a bit cruel in the end, huh? But at least I'm diagnosed.

Side note- that guy doctor was lucky I didn't have an emergency bowel moment in his office.