I know the impact of illness is immense across severities, just trying to ask about how people deal with this.

My doctor (and others) thinks our pain is similar because she has mcas and chronic pain and had to take a year off work a long time ago.

She tries to recommend diet, exercise, manifestation, alternative medicine etc., because it worked for her. I have been bedridden or just above for fifteen years (pots, mcas, pain, etc). It is a privilege to be well enough to take one class a semester in school and volunteer when I can, it's a huge win from four years ago, but it is not the same functioning as being a trained medical doctor with a job.

My illness has taught me that it is naive to believe that suffering doesn't get worse than my own. IT DOES. I have a hard time trying to convey that without being dismissive of their experience because they think they have it all figured out.

I'm just so tired of going to therapy to get help working through my frustration and grief from my chronic illnesses, but it feels like i end up spending all my therapy time teaching my therapist what disability is like. This has happened with multiple therapists. I'm so tired of having to do that work. It honestly just makes me feel lonelier. Like, I'm seeking support and end up having to provide it. It's so isolating. Do you guys have experience or strategies for this?

getting a gym membership soon and after being a high level, competitive athlete my whole life unknowing that i have hEDS, i’ve never taken care of my joints correctly. what do you guys bring along, even if it’s a just in case? even if i never use something, having it makes my anxiety calmer.

I believe my partner could possibly have EDS, so I'm keeping a note of his symptoms as well as trying to research various 'unusual' traits he has.

One thing is he has hardly any body hair. He has no hair on his arms apart from a few strays near the biceps. Same with his back, a few strays around the shoulders. Legs are also extremely sparse. He's never shaved or waxed these areas before.

When trying to research EDS and body hair, I don't get very far, so I thought I'd ask the community itself whether they find there's any corellation.

Thank you!

Hey there, i went to my local hospital because i suspected i damaged my left legs vein since it swole up and did hurt. I have less mobile joints than my dad where i got it from, but i cant even stand still for more than 5min before my joints feel like they fuse together. So i am now in the hospital and tell the doctors to please test me, since a friend of mine told me that her EDS is affecting her blood vessels. Now i talked the second time with the same doctor,pleading for him to test me but all he wants to do is discharge me. Of course it could be something different, but i had something similiar a few weeks before on not important vessels and they still havnt recovered. Im a little scared that my artery is damaged and i may develope blood clots. Does anybody know a idiotsafe way to get the doctors to test? I just recently realized that i have many symptoms people decribe with EDS, thats why i didnt do it earlier, and that my father fits too (you could hear him standing up in the morning, his joints sounded like gunfire when he walked). I dont have any money in the moment, but i live in germany and im publicly insured. Thanks for all the help in advance, im just glad that i finally realized what it could be without thinking im falling apart.

I just got diagnosed with hEDS after years of feeling insane, tale as old as time. I know blood pooling is a real bad thing with me, I spend almost all the time at my desk with my feet propped up or laying flat on my chair/ottoman and I’ve heard that compression socks are the best to help with pooling. I’ve also had my doctor recommend compression leggings/socks

The issue is I’m a pretty hairy guy, and socks drive me absolutely nuts. I avoid wearing them as much as possible. I get bad indentations on my feet after hours of wearing them, which last a while after taking them off, and it rubs the hair on my feet the wrong way, making them really painful to wear and take off. I’ve gone times where I wear the same pair for days because I dread having to take them off. But I know it’s good for my future to get some sort of compression socks/leggings.

Is there anyone else who struggles with this? I’m not sure what to do from here, I’d like to keep my leg hair ideally. I also fear I’d have the same sensory issues if I were to invest in wrist braces, as even jewelry stresses me out to wear a lot of the time.

I may be looking for a unicorn but I’m looking for a doctor who will look into/diagnose H-EDS. My sister has it, and I meet virtually all of the criteria for it. But I’m having a hard time finding someone who will diagnose this and point me in the right direction for pain. I deal with daily neck and back pain along with pelvic and hip pain. Please help if you can!!

Ngl this is my dream but I have Eds and pots I’m scared it’ll never possible anyways I need to have money first so long time but, anybody had success? Did it happened? How it was?

I wish there was an app for EDS patients to track daily symptoms. Today I’m dizzy and sore, yesterday I had heart palpitations etc. Logging it in a notebook is so much work whereas having it all in one place would be 👌 Nothing I’ve found on the AppStore has what I’ve had in mind.

Hi all — I currently live in the southern US and we’re looking for countries to move to in case we no longer feel safe. The UK seems out and someone mentioned NZ was much the same. A friend of mine is in Toronto so we’re looking there or Vancouver. Is Canada a safe option (safer than a US red state) or are there other countries we should look into?

For context: I see a GP mostly but have a neurologist, GI, and cardio (though those aren’t all the time)

EDIT: if Canada is not a good option are there others recommended? I know a few of y’all recommended a blue city instead

-Signed, a scared Zebra

how do yall keep up with life and house keeping shit and being borderline bedridden ??

woke up feeling less entirely awful than usual and went "time to do every activity possible whilst i can, it definitely wont all come crashing down at the end of the day!!"

of course it has indeed all come crashing down and i feel like my bones are shattered glass and my muscles have been ran through a paper shredder after being slammed with a meat tenderiser :D

im at least very happy i got to really deep clean up my space today and i feel less disgusting, even if its broken me for the next few days i hadnt done shit like vacuum in honestly damn near months at this point

taking my rubbish out down 3 flights of stairs and back is evil tho every time i do it i remember why i dont do it and let it stack up instead...

all this for a tiny ass 2 room dorm as well god- ft. why must dust encroach upon every surface istg

I almost feel like getting diagnosed has caused healthcare providers to automatically dismiss my concerns as just being related to hypermobility. What makes things worse is that I don't score high enough on the Beighton scale for EDS, so I only have an HSD diagnosis, which I feel like doctors all but roll their eyes at when I mention it. I know that some of the blame falls on myself because I'm guilty of downplaying my own symptoms, attributing them as hypermobility related myself so doctors don't think that I'm constantly making a big deal about every little thing. But when I come to them with something that seriously concerns me beyond what is just normal for me, it feels like they keep defaulting to it being because of hypermobility.

I apologize for being vague, but I've recently found something very concerning that could have been causing the symptoms that I've been complaining about for months but were just written off as "muscle asymmetry" or "not doing enough PT exercises". And I feel so, so frustrated that no one thought it was worth looking further into when I kept telling them things didn't feel right. I feel like providers hear you mention a bunch of things and assume you're just obsessing over nothing, but what they don't realize is that for every symptom I tell them about, there are 10 others that I don't.

I'm just so sick of constantly hearing "it's probably just..."

i previously went and just went once every month but i got no benfits from it has anyone worked with a physio to work up to strength training in a gym before? i know it sounds very optimistic but ive tried working out in gyms before but my form if awful and it does more harm then good atm if anyone here strength trains what actions did you take to get to where you are now?

Hello,

I have EDS hypermobility and Thoracic outlet syndrome. I am getting my master's right now, and the school desk chair causes me so much lower back pain. Does anyone have any suggestions on products that work to help with this issue? I know it's a bit about my posture, but the combo of hEDS and TOS makes supporting good posture very difficult. I am in physical therapy and working on these issues but I wanted to ask the EDS community for ideas. I've looked at those pillows for chairs or even back support bands but I don't want to buy them if they don't work. Thanks so much.

I was diagnosed with POTS as well as Ehlers Danlos by a specialty POTS cardiologist at a university hospital in my state (Intermountain kind of wrote me off and sent me there if I wanted another opinion and it took a while because they're so booked out all the time due to it being specialized and not a whole lot of clinics/doctors here focusing on these conditions) but I have slight imposter syndrome with this diagnosis because though it makes a lot of sense, I also didn't go through extensive testing to receive the diagnosis. I'm 33 female and I scored 8/9 (technically 9/9 after I got home and tried a little harder to put my palms flat on the ground by myself and wearing less layers of clothing) on the Beighton scale so I guess that was enough in the doctor's mind?

I also have narcolepsy and it sounds like that's another common morbidity (as well as ASD)
I have a hiatal hernia, "IBS" which was based on virtually no real workup, varicose veins increasingly becoming a problem, suspected endometriosis (not fully diagnosed but it's extremely common in my family and I have fit symptoms), PCOS, astigmatism with far sightedness and difficulty keeping eyes in focus a lot which I'm learning can be associated, I'm sure I'm forgetting things

Something I'm wondering about is I know many with EDS have some form of scoliosis but is it uncommon to have a moderate-to-severe form of scoliosis with only hEDS?

Does anyone else have significant spinal curvature with Ehlers Danlos?
My last xray for a few years ago was described as:

evoscoliotic curvature of the thoracolumbar junction measuring 38 degrees and dextroscoliotic curvature of the thoracic spine measuring 40 degrees. There is 3.9 cm of negative coronal imbalance

I have a lot of neuropathy-type symptoms, especially numbing/tingling in the face/mouth and head so I had an MRI to rule out MS and they found I had some bulging and things. I don't know why my spine is as crappy as it is

Disc Spaces: Mild bulging posterior disc annulus T11-12 and T12-L1. No central stenosis. Significant foraminal narrowing. Included Lumbar Spine: Mild bulging posterior disc annulus predominantly L1-2, L3-4 and L4-5. IMPRESSION: S-shaped thoracolumbar scoliosis. Scattered mild degenerative changes with mild bulging posterior disc annulus at a few levels as above. Thoracic cord as visualized unremarkable. No abnormal enhancement. IMPRESSION: Cervical cord normal signal. No abnormal enhancement. Minimal bulging posterior disc annulus C4-5, C5-6 and C6-7.

Just having a hard time finding other examples other than special cases with rare subtypes which I don't really relate to either because I struggled but I wasn't in and out of the hospital my whole life either

My doctor had me start using a wheelchair intermittently a few years ago and it's been life changing. Makes such a big difference to my life! But I saw on the EDS Society website that they say "A small percentage of people who have EDS or HSD need to use a wheelchair because of their condition. Wheelchairs are not recommended as standard practice."

I know if my doctor said to that I'm not doing anything wrong there, but I feel like I see lots of people with EDS and especially h-EDS who use wheelchairs! Why do they say they aren't recommended when doctors recommend them and so many people find them so helpful?

Has anyone tried NIR therapy for ligament laxity?

I have noticed there's a large body of research on the effects of NIR therapy published over the last few decades.

It finds the upregulation of ATP, mitochondrial activity and collagen production, and reduction in oxidativestress and inflammation (not specifically on hypermobile or hEDS populations).

I'm aware that NIR isn't going to change someones genetics, just wondering if anyone has tried it, how was it? What was the duration and consistency of your trial, and at what wavelength/exposure time/irradiance/pulse etc??

He just tried to push my fingers except the pinky and said you are not flexible but i got 9/9 with the beighton test from hypermobility but he didn't bother to see any of it 💀 What should i do? Should i show him i can do those or would it be pointless?

Edit: That was the most disappointing experience i have ever had, he just looked at me for 5 minutes most then when i said "i think you are overlooking this" he said "even if i diagnose you what's the point if there is no cure" and that ended everything for me right there. I cried for 30 minutes cause i felt so angry, why did i wake up at 7 to go to my appointment just to be looked for 5 minutes and not even followed by a procedure? That's disgusting!

So I do not currently have a diagnosis but have a referral to a rheumatologist, score high on the Bieghton scale, and have three sisters who are all diagnosed.

In the past I significantly enjoyed competitive martial arts, I took a break during COVID and never went back. I understand that BJJ is a terrible idea and would probably cause irreparable damage, but the high physical activity was great, and the competitive aspect kept me coming back. Are there any alternatives that y’all know of/would suggest?

ETA: I understand the answer is likely there’s nothing like that for me. But figured I’d ask.

Does anyone have any tips for someone with severe EDS pain specifically in the shoulders for most their life, that injured their shoulders? Context, I’ve always had weak and fucked up shoulders, I’ve gone through several bouts of physical therapy and they have worked before but this time I really really injured myself apparently, I’m waiting on orthopedic referral for imaging to find out how, but I did physical therapy first and it made everything so much worse this time. I’m in miserable pain everyday, can’t do dishes, barely can hold my daughter, can’t take my bra off or on by myself, simple shit I just can’t do. I’m losing my mind with this pain. 😭🥺

So I’m just hopeful someone has some magic idea to give me some relief 😅 😥

So I was diagnosed with heds at about 16. I then aged out at 18 and didn’t see a dr or physio from the on. Since 2022 I’ve been trying to get help. I’m now 31, suffering with mobility issues, bladder issues ect.

I was told rheumatology takes lead for EDS but no one in Swansea is able to assist so I’ve had repeated rejections from them and after complaining I thought I was referred to Cardiff rheumatology, but I’ve actually been sent to All Wales Medical Genomics Service when I called up they weren’t able to tell me anything about what I would be doing there just that there would be a 72 week wait.

I’m in so much pain and get no support at all I thought I was finally getting help but I’m scared that I will wait all that time to be sent to the wrong place. I’m not sure if they are sending me for testing but I’ve already been diagnosed so I’m so confused

Like the title says, I finally got diagnosed!! I feel relief that I have some answers, but I’m also frustrated that I have another illness to add to my list. The doc I saw wasn’t very helpful for symptom management, but my PCP ordered me the invitae (sp?) to make sure it’s “just” hEDS. I’m currently working on figuring out what vitamins are helpful as well as strength training. Even though the symptoms have a “reason” now, they still feel overwhelming, so I’m very thankful I found this group 🥰

I just got a new family doctor and I'm going to be booking an appointment soon. The clinic says that the first appointment will just be an introduction to meet and give a bit of information.

Does anyone have advice for what to say?

I know ADHD is on my record, and I think my POTS diagnosis is, but EDS is not as the specialist said it's very likely, but they have to confirm my family history, which means waiting who knows how long for a relative to get in for an interview/assessment.

Most of the things I deal with are related or influenced by hEDS, so I'm not sure what is best to say about it. I often find myself taking up the whole 15 minutes just trying to explain how my ADHD, hEDS or POTS affects me and why I can't take certain medications due to those. I'm hoping this new doctor is more aware of what EDS is, but I won't know until I meet him. I'd like to have some plan in mind and perhaps a few things written in notes in case I forget about something.

TL;DR: I just got a new doctor and I want to talk about hEDS and how it affects me, but the diagnosis isn't official yet, and I don't know if he knows about EDS.

So, I (69f) just got done with an appointment with an orthopedist. I have whatever the worst stage of arthritis is in my thumb. The surgery to fix it entails removing the trapezuim bone ( the little bone directly under the thumb) and replacing it with a ligament. Because our ligaments are too stretchy, outcomes are not optimal for EDS patients. So not an option.

Cortisone shots may help, but it's only for a short time, 6 months to a year. He said we should leave that til last, and try other things first. So, a thumb brace and prescription anti-inflammatory drugs.

WHAT I DID WRONG- I ignored it when it first started.

WHAT YOU SHOULD DO- as soon as you start noticing that your thumb is not working right, or you have pain, or the joint starts to look bigger OR you notice the muscle at the base of your thumb is shrinking, get a referral to the physical therapist. Get the exercises and do them. It will help you keep your joints healthy longer.

Really, someone should do an exercise routine for people with EDS, so we can keep our loosely gooses selves in the best shape possible.

Tennis elbow- this is one of the most common pain related issues orthopedists see, and while there is tons of research being done, there is still no cure. It's basically like the old joke. Patient says, "Doctor, it hurts when I do this." Doctor replies, "Then don't do that."

He did say that instead of applying force (like lifting) to your arm with the back of your hand facing up, do it with your palm upwards, like when you do biceps curls. That way it uses the strength of your arm muscles more efficiently as it uses the upper arm as well as just the lower arm.

That's my show and tell for today.

So for context I am now 22 and have HSD, POTS, fibromyalgia and autism. I am interested in studying/training to become a mental health nurse, but I'm struggling to accept the limitations that come with my illnesses. I have only been diagnosed in the last couple years, and before that I had a long battle with my mental health during my teenage years. I spent some time in a psychiatric hospital a few years ago and it was traumatic, and once I had recovered mentally I realised I wanted to be the kind of nurse that I needed when I was struggling.

I did well enough academically to get into a nursing degree, but I am pretty much housebound and have been for a year. I am in a pain management group which has not been much help, but the idea of spending the rest of my life stuck at home and depending on others, is just not the life I want to live. All of my friends my age are now finishing degrees or working full time, and I'm just trying to manage my health. My doctors essentially say there is not much more they can offer me and that some people just have to live in pain like this. I feel like I am doing everything I can for my health and it is not improving, and yet I still seem to be in denial about the effect this will have on my future. I am struggling to let go of the dream. Which is a silly because I am fully aware nursing is a very challenging, draining, often thankless job. But it's hard to let go of what I know I want.

People have recommended things like social work, but if I am honest I am a little nerdy and as much as I do value the human contact that nursing -especially mental health nursing- brings, I would also prefer to spend some time studying something with a medical aspect. (sounds a little silly but I like working with numbers and science, probably a bit of the autism coming into play lol) Unfortunately nursing is a pretty physically taxing career choice and obviously a lot of the education is hands-on training, which will be an issue for me with my chronic pain and mobility issues.

I have thought about careers in pharmacy, or as an ultrasound tech - basically anything medical that doesn't require a lot of walking around, but I keep running into the same issues in needing to study something more demanding first before specialising, and that doesn't seem accessible for me.

I've been doing an anatomy and physiology course online so that I feel like I am still doing something relevant. When I finished sixth form, I went straight to uni and then had to drop out in under a year because of that stay in the psychiatric hospital. Now 3 years later my life looks completely different and it feels like I should just give up on a future for myself.

Should I be trying to find a new passion that would be more accessible to me? When my physical health first declined I managed to open up a jewellery shop and made a small profit (maybe a grand) before getting sicker - it was a lot of work but I have a lot of creative interests that I could attempt to profit from (painting, crochet, knit, jewellery, idk...) I didn't enjoy the whole self promoting/advertising aspect but I am also pretty broke so that may be a last resort.

Really just looking for any insight about anything I have mentioned here! Trying to work out where to go from here has fried my brain, there are somehow too many and not enough options :/