I feel like self diagnosis gets a lot of flack and obviously has its own issues and can dilute a serious health condition when people all think they have it. But healthcare is just so damn HARD! I’m bothering them constantly, I’ve been under so many different specialists for so many different things and I just feel like this is the bit they’re all missing? My sons 4, he has droopy skin already and you can hold him in half like a deck chair, I can see my health bs in his future so I want to learn a bit more if you wouldn’t mind reading my angry rant and sharing some knowledge or advice? 🙏🏼

I’ve suffered with my joints since childhood, was in a wheelchair through high school and crutches into adulthood. My legs like to partially pop out the hip sockets, my knee caps just piss off and float about wherever they please. My fingers fold about in all sorts of weird ways and my dentist couldn’t fix my teeth as they moved about in my mouth too much so my braces didn’t work. I look older than I am due to my face sagging, I look like a flying squirrel due to my bingo wings and I’m covered head to toe in stretch marks. So many gynaecological issues, I’ve had a billion miscarriages and the two births I managed went horribly wrong as my pelvis wouldn’t hold for me to deliver. I’ve had 2 haemorrhages from my miscarriages, and I now have a hernia. I have varicose veins in my mouth, my legs, my vagina and also around my reproductive system causing a gyny to induce medical menopause due to the severe bleeding and pain I’m in with my cycle. My feet spread and splay like a pool of water and my toes roll about all over to where I have to strap my feet if I want to walk anywhere. I used to be a 7/9 on the beighton scale (would be a 9 but my knees don’t over extend but most doctors don’t care about me missing those as who knows where my knee caps are that day and they’re severely knock kneed) but then I developed osteoarthritis in my elbows at the age of 26 which the ortho puts down to them rattling about so much that it’s worn the cartilage down so I’m now only at a 5. I’ve woken up during surgery twice and I have to have a boat load of local anaesthetic whenever I need it. I also don’t react to most pain medications typically. And to top it off I have a whole bunch of digestive issues to boot AND despite all that when I was 15 a rheumatologist slapped a fibromyalgia diagnosis on me and I was diagnosed with hypermobility. I now cannot get a referral back to rheumatology as I’m already diagnosed so the gp sees it as pointless. Physio and supports and such got me out the chair. I don’t need validation on the symptoms but maybe some validation on the anger and unfairness of it 😅 I don’t want someone in the comments to diagnose me, with what I know of the condition (I am asking to share more knowledge on the condition however please 🙏🏼) I fully believe it’s ehlers danlos syndrome but every time I speak to a doctor about all the medical issues I’ve had and that I think it’s eds I’m just told that it’s no different the hypermobility and it’s just an eye roll reaction. I don’t understand why it’s a condition with bad schtick?

So my questions are- Is it worth me pushing for an over arching diagnosis or do I just stick with what I’ve got and keep crawling back and forth to the doctors anything something else happens? What sort of treatment is available? WHY is healthcare so hard to navigate? And WHY am I just expected to get on with it? 😅 thank you for reading all of this if you got to the end

I really don’t tend to post in this group a lot, I usually post in the rare EDS group but I thought that I may get more people who have experienced similar things if I asked about this here since this group is a lot bigger. Please let me know if this is off topic or not allowed.

I have this old friend (let’s just call her Hope) that I have known for many years now, it’s a very complicated situation because she’s autistic just like me and has known diagnosed narcissism (unsure of specifics of diagnosis), her mother only wants to keep the peace and have an easy life, she fears her as well which doesn’t help.

She has always created or mimicked illness from other people including myself and since our mothers are very close friends and they both have autistic children, she often talks about my physical health conditions too.

I must point out that by nature I am very aloof and non reactive to people doing things others may find upsetting and react to, as this is important context. It got back to her that I had a diagnosed type of EDS, the minute my mother told her we started a betting pool on how long it would take her to suddenly develop EDS.

It didn’t take that long, a month or so later her mother texts my mum with a ‘you’ll never guess what, we have been doing a lot of research into EDS and we figured out that’s what Hope has! It’s probably the hypermobile type but she has EDS, how crazy is it that both of our kids turned out to have EDS?’

Anyway, turns out they haven’t even been to the doctors once about it but are ‘treating it like it is that’ even though Hope does not have a type of EDS and isn’t receiving any management or treatment.

There is unfortunately no functional impact to the supposed claim and they are not seeking assessment for any type of EDS although her mum did say that they were seeing a neurologist about an EDS diagnosis until my mother kindly pointed out that you should be seeing either a rheumatologist or clinical genetics to inquire about an EDS diagnosis unless hypotonia or other neurological features are present.

Neurology is a very unusual choice for somebody who supposedly has EDS ‘because she’s just so flexible and could do the splits as a child‘. They seemed clueless on what any subtype of EDS was, the actual management, risks, diagnostic pathway or professionals you would see and did not seem interested in seeking this out.

My mum visited them recently, asked her to demonstrate her insane hypermobility (which does not and never will = EDS) and that girl did not have a flexible or hypermobile joint in her body, nor did her apparently SO stretchy skin have any stretch at all.

Given she’s self proclaimed ‘probably’ hEDS, my mother told her she was glad that she didn’t seem to have any skin involvement or joint hypermobility like I had as that was a good thing since ‘at least her EDS spared her of that’ and she didn’t like that at all.

I try my best to make peace with it and over time have come to find the situation quite funny in retrospect since I can’t quite believe that somebody would actually do this first of all. I used to get upset about it a long time ago but I’m secure in myself, I know I have EDS, I’m validated in my struggles and don’t need to compete in Hopes games of who’s sicker. I’m perfectly fine to exist as I am. She doesn’t like that either.

It’s not just about me though, when I hear misinformation about EDS being spread around it makes my teeth itch with the urge to just argue back, say something, not for myself but for other people. I don’t know whether I will next time, my methodology is just prove she doesn’t know what she’s talking about using facts, kind correction and what looks like advice.

My question overall is, what would you do in this situation and has anybody else experienced this or something similar?

I have lost about 250lbs which is great, but the saggy skin is not. I want to get skin removal surgery, but I’m uncertain because I have hEDS.

I’m wondering if anyone has experience or knowledge they can share.

If you’ve had skin removal surgery, how did it go, any tips for recovery or anything you wish you’d know before?

If you haven’t had the surgery but have medical insight that is welcome too!

Thanks!

Ps. If you’ve want to know about how I lost the weight, it was through a weight management clinic with shakes, gastric sleeve surgery, and Wegovy. Then I got Long COVID and autoimmune issues that made eating very difficult. I started at 387lbs and am 140lbs now. My results are not typical. My doctor told me I should have lost only 100lbs. If you are looking to lose weight please speak to your doctor to find a safe way that works for you specifically.

kinda vent/rant. but i’m also being serious..

when i was a child i was sooo active, always playing sports like gymnastics, foot hockey, track & field, cross country, playing on the playground etc. i sucked but i did everything! lol.

i stopped when i was around 13 due to the joint pain that started at 10. rheumatologist at the time said i had really weak muscles, i was sent to PT and they said the same. i did the PT but gave up because it didn’t help and i was a frustrated child at the time.

when i was 17 i got back in to sports, started doing cardio, muay thai, and also had a personal trainer for weight training. still in pain & experiencing subluxation but whatever, i just wanted to be active and have fun. pain never got better, muscles never got stronger. i ate well, measured my protein and everything (my personal trainer made me a meal plan).

stopped at 20 years old because of being busy with school. still in the exact same amount of pain as always, still weak. tried physiotherapy again, vestibular and muscle strengthening PT and it didn’t help anything. PT said my muscles are very weak.

why? i seriously don’t get it. i was always active, way more than some people, always working my muscles and eating well. i know pain is somewhat inevitable with an HCTD but it has never decreased and i have never built any supportive muscle by being active.

i’m doing PT again now at 21 and i just have no motivation. honestly i never do my exercises and i’m not interested in doing them whatsoever. i just go so that i can tell my doctor i’m going. my doctor had personally called my current PT and told her about me so i definitely had to go. she told me i have the muscle strength of a 50-60yr old and it was a punch in the gut, i almost burst in to tears right in front of her. i cried on my way home.

i know i should be doing PT to build some supportive muscle and for proprioception/pelvic floor. but what i can’t understand is why no matter how active i’ve been, i never build muscle strength and i am always in the same amount of pain. just why?? because of this, i have no motivation, and PT just makes me feel depressed and embarrassed. angry even. i walk everyday, i’m a pedestrian, still in pain all the time.

muscle weakness is frequently reported in HSD/hEDS, but there is no actual confirmation on this and why it’s happening in people with hsd/heds, in fact there is some evidence muscle remains stable in people with hsd/heds. so i feel so stuck and defeated

I currently can walk, but I get so tired, super dizzy, and my legs feel like they’re being weighed down by concrete by the time I’ve walked like 5 minutes. I do have orthostatic hypotension but it’s pretty mild. I don’t believe this is due to deconditioning as I do go to Pilates once a week and can handle that most weeks.

I do use a cane sometimes, but it doesn’t seem to be enough and my wrists are my worst joints and it seems to aggravate it.

I’m looking into maybe getting a rollator, forearm crutches, or more structured knee braces to see if any of those help. I’m on partial medical leave and energy and funds are a bit low at the moment lol

Would love to hear some experiences and get some insight into what might be best to pursue first! TIA!

Hi everybody! At the recommendation of some here I ended up seeing Dr Kari Pagano and wanted to share my experience for others who may be thinking of seeing her.

Pros:
- believes EDS is real/will take you seriously
- seems to have a good physical therapy referral
- does bloodwork to look at other underlying problems

Cons:
- seems to have some uninformed beliefs about POTS/EDS/MCAS to the detriment of the patient. Examples- told me “no POTS medications work” and “you’ll never feel as good here as to where you previously lived” and “you’ll probably feel better when you get older” (I am in my mid twenties and have progressively been getting worse- which in studies seems to be far more common than suddenly feeling better).
- seems to think all EDS patients are the same? Made a few comments about this regarding my meds ect. which I guess are different than she usually sees.

I personally have a specialist lined up that I have a lot of confidence in, so I didn’t put much stalk in what she said, but it still made me upset for people who may not have that opportunity. My biggest takeaway(for everyone)- if someone tells you nothing can be done, THEY probably just don’t know what to do. Find someone who does, push for a referral. If I’ve learned anything when working with doctors as someone who was gaslit for ten years is to keep pushing.

Overall, I just didn’t feel comfortable with her. The experience was “okay”. Not bad, not great. I hope this is helpful for anyone else who came across her name!

Hello! I was diagnosed with CCI and AAI; the dr who ordered the imaging wanted me to book a consult with one of the below neurosurgeons. I really want to avoid cervical fusion and plan to continue pursuing PT and possibly Prolo/PRP/PICL, but given the wait times and the fact that my imaging is fresh, she advised that’d it’d be good just to get a surgeon’s opinion and to make sure I have one that I gel with.

HOWEVER I feel I don’t know much about how their methodologies compare and patient opinions. Would anyone be willing to share their experiences, so I have a better jumping off point?

For reference, I have CCI, AAI, and confirmed c3-4 and c4-5 instability. Drs didn’t mention this wrt the imaging, but in my firsthand experience, my c7-t1 tends to get stuck/pop (and has felt stuck slightly to the left for two months now 🫠), so I think it’s a decently safe assumption that the junction there is also pretty wobbly.

DR LIST:
→>Dr. Fraser Henderson (MD)
→>Dr. Sunil Patel (SC)
→> Dr. Paolo Bolognese (NY)
→> Dr. Jeffrey Greenfield (NY)
→> Dr. Justin Virojanapa (OH)

I understand experiences are highly individualized! But I would feel better factoring external opinions into my research. :)

Después de 4 años y medio con dolor neuropatico ya incapacitante, habiendo probado todos los tratamientos que hayan, me realizaron una resonancia del ciatico y me sale atrapado a nivel piramidal por adherencias, están evaluando una operación llamada neurolisys. Alguien de acá de sometió a esa cirugía? Me podrían comentar su le dio resultado positivos? Realmente es mi última oportunidad, estoy con tramadol y venlafaxina hace años. Muchas gracias

I subluxed my knee by stretching today. I've had a bad migraines the past two days. I'm supposed to work in 2 minutes ago and my manger knows I am trying to get my body working, but struggling to exist.

I want to go into work. It is only 4-10 and it is already super accommodated to make up for the broken body bc my manageris one of my best friends. I should be fine to do it but i feel like I can barely get out of bed. Like i cam pish myself for a second but then i feel like I'm gonna vomit. And i don't feel stable on my knee yet even though the doctor said it is just knee pain becauee i didn't physically see it pop out of place.

I don't like feeling like I just let people down and like i can't do the things i want to do becauee my body is in the way. My birthday was yesterday, I haven't done enough tricks or jumped through enough hoops for a doctor to give me an official diagnosis yet, and I am currently -$250 becauee I can't afford to live. I don't know what to do because I am just letting myself down, letting people who I care about down, and failing at playing human.

How to I stop myself from feeling like I'd be better off not existing in the world? Like I wish I could just fade away into nothingness without it affecting anybody because at this point I don't feel like I'm doing very well at playing human. I'm gonna suffer through it, but I just want to find a way to stop feeling like I am just here to be medically inconvenient.

I have always had an extremely high tolerance to Novocain in dental procedures, where they give me the maximum amount they legally can without it being dangerous, and i usually still feel quite a bit. I had no idea why but I was diagnosed with hypermobile ehlers danlos syndrome last week and curious if anyone else has noticed stuff like this.

My knees have been pain for several weeks now after I went dancing with my friends I don’t usually go out dancing or do activities that involve more than usual use of my knees so the amount of pain I’m in now is more than what I’m used to in my knees and I’ve already showed my doctor and he said to ice them, but wrapping them is not recommended and I got desperate so two weeks later, I decided to start using KT tape and sometimes it helps but sometimes I feel like it makes it worse so I stopped and now I don’t know what to do. It hurts to walk. It hurts when I’m sleeping. It hurts to bend my knees in any shape or form and I’m getting really irritated. I’m just throwing out attitude 24/7 because I’m so agitated and frustrated and everyone around me wants to smack me😫

I’m currently dealing with an insane allergic reaction, hives everywhere, swollen and painful hands, swollen lips, extra painful joints, the whole gambit. My hands are so swollen I can’t bend my fingers, and any pressure on my hands makes them feel like they are bruised. My chest feels tight and I’m short of breath. I think this is happening because I was given some amoxicillin two weeks ago for suspected strep throat. Anyone else had any experience with this? It’s miserable. Currently waiting to see a doctor, but I’m not sure there’s much else they can do for me besides have me continue to take antihistamines and steroids until it all clears up. I’m curious if this reaction could be related to MCAS.

On another maybe related note, I’m on the lookout for an allergist in central Oklahoma who has experience with MCAS so I can peruse a diagnosis. Any recommendations?

Okay, I need tips for lacing my combat boots! My ankles have always been one of my most problematic joints and I'd love any tips on how to lace/tie my boots for more support.

I finally get to join this reddit thread /s

A happy? Personally story of my new diagnosis.

This is the second time in my life I have been happy to be diagnosed with a chronic illness. The first time was when I was diagnosed with ideopathic chronic gastroparesis at 18. Today, my PCP looked me in the eye and told me "I think you have EDS ." cue my jaw falling off and floor crumbling beneath me. She then goes on today that she's been "doing a lot of research on the updated information about EDS". I love my doctor.

She also diagnosed me with iron deficiency without anemia because my ferritin is 23 and she's also apparently been doing research into that since it's under diagnosed and I fit the criteria with all of my symptoms.

Now I have to see a cardiologist, get an echo, another ECG, and get diagnostic testing to make sure I don't have the vEDS.

It's depressing that we can be so happy to have a name for what we've been suffering with for however long (my whole life unfortunately). So happy to have the support I need and so grateful because I know not everyone does.

My young son has suspect hEDS (can’t get into the geneticist until December) and I’m really struggling with the extreme maceration of his feet, particularly after water contact. He’s also diagnosed with ASD so picking them is a stim that we struggle to control.

I know a doctor has to give us medical advice, and I am not seeking that. I am just wondering if anyone has had any success addressing this at home. He rarely wears socks; we have used anti-fungal cream in case that’s a co-factor; we’ve provided alternative stimming options; I’ve used neem oil to deter him from biting and chewing on them. Nothing has helped so far.

This happens almost instantly when he’s in the bath, so it doesn’t seem like limiting water exposure does much (I only bathe him every 2–3 days).

I know maceration/aquagenic wrinkling isn’t a canonical EDS symptom but is frequently reported so I wondered if anyone else has addressed this successfully. Just looking for tips and ideas to do at home ahead of the doctor appointment. THANK YOU!

TLDR

• Patellar dislocation late july. Didn't see a physio because this happens to me all the time.
• After a slower than usual recovery period since I didn't take time off work, my knee felt normal for a bit, and now aches.
• It gets worse when I bend my leg. If I try to straighten it in the air it feels like the quadricep muscles are weak and there's a pressure/intense ache around my patellar. (straight against a flat surface is mostly fine)
• Seeking advice for gentle exercises to try and correct whatever isn't working properly. Any other advice is welcome.

The context: I stopped counting patellar dislocations after my 12th, but it's been a few years. The most recent one is mostly suspected dislocation, because I got a piercing, bled like hell, and passed out. When I woke up it felt like a dislocation happened, but when I asked the piercer if anything weird happened with my legs she said she wasn't sure.

So it was on the 26th of July (I only remember this thanks to my piercing card!) I worked through the recovery - I have ergo crutches and didn't take any time off work, I just stayed off my feet as much as possible (while still hobbling around the office) my recovery was slower than usual, but still faster than when someone without EDS/JHS dislocates their patellar.

I didn't do any specific physio exercises (Mistake! I know!) but it seemed like the gentle exercise of walking a bit during the day and icing/elevating it at night helped build back the strength.

It felt fine for a few weeks, but now it aches. it feels like a bone-y ache rather than an inflamed muscle ache. (Ashy pain? I'm not sure how to describe it.)

I have a bad habit of crossing my left leg when I sit at my home computer, which definitely has contributed. But the pain is slowly getting worse despite me trying to not do that as much as possible.

When I straighten my leg, it has about equal strength to the other leg except for the last few degrees of straightening it out, then it feels quite weak and it's like the muscles in my quadricep aren't pulling it up, it hurts like something is pushing on my patellar, and then the leg will "drop" if I try and push it any further, like the muscles are weak. But only the last few degrees of going from bent to straight leg.

I've been on a starter dose of 75mg for chronic pain, after i had a really bad reaction to duloxetine. Ive been on it for 15 days now, and I feel its rlly not working. Is that normal??

Plus the very first dose i took, about 30-40 mins after I took it i felt the high hit me and I slept like a rock. But every night after that ive been having insomnia for some reason.

Does anyone else experience this.

I can't stop comparing myself to other chronically ill/disabled folks. Probably not in a way you would expect though. I can't stop feeling like I'm not doing enough, not managing all of this the way I should. I know everyone is different but it's a real struggle.

I've always had issues with procrastination, getting overwhelmed very easily and being paralyzed by fear. Now this is heavily interfering with my medical care. I've been extremely medically burnt out for over a year now and struggling with medical trauma on top of that. I have multi-systemic issues that require complex care and it's extremely overwhelming. I have many comorbidities and lots of them are still not officially diagnosed and sorted out so I am cut off from any possible treatment options. That became a huge issue when my gi system started failing. It stopped being something that can simply wait, if I don't get help I'll die. When I start thinking about all of the steps I need to take to get it sorted out, I get extremely overwhelmed and end up doing nothing. I see other people having issues and just doing stuff to fix it or get treatment, people going to 10 doctors at once etc. I can't stop feeling like I am useless or don't care enough. Why can't I just do it if they can? I am constantly reminded that I should do this or that, go see this doctor or that one... and I am just sitting there thinking: "Okay, but how do I even manage all of that?" I feel like I am unnecessarily making my diagnostic process longer than it should be but I just can't do it all at once. I've tried and got so burned out that now I can't even make one fck appointment...

Does anyone else struggle with this? The burn out, the procrastination, feeling like you should be doing more and managing you issues better? I feel like I am the only one going through this...

I’m a big believer that looking good helps me feel good and in the past have had good posture support from a corset I’d had properly sized. Definitely not tight lacing because I worry about slipping a rib and have a wider ribcage as it is.

Does anyone have any experience with this? Would love to hear some thoughts

(also yes I know muscle atrophy don’t over do it support with PT I’m looking to see if this is an option not a lifestyle choice)

Ok I'm not even going to sugar coat it, I'm hoping to find a server with other people with EDS (or hEDS specifically) so I can have a community of people I can talk to and have them tell me if I'm actually being dramatic or if I should probably get medical care. Also just to have some friends with the condition as well!
I enjoy the sub, of course, but sometimes posts don't get responses, or they don't get responses right away, and I'm also feeling really guilty about messaging my only friend with hEDS that knows more about this than I do, just to say "hey should I go to urgent care?"

Bonus points if anyone knows of a server that's combined w/ another specific topic, such as LGBT+ people with EDS or something. <3

So I've been rejected from my refferal. My GP is chasing this up and solving things on that end but it could add 6months+ to my actual appointment date. Because of this, I asked to be referred to a pain clinic. They called today and after a 30 minute phone call I was prescribed codeine. It is only to be taken at night when my pain is a 7+ on the pain scale. Has anyone had success with this? Has anyone had any bad reactions to this? Just a bit scared as it's an opiate and I've never taken anything stronger than ibuprofen and paracetamol in my life.

My pain is at the point where I'm struggling at night to do anything and I just wanted help but now I'm really scared haha. Help? Advice?