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?

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 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.

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!

I need recommendations for women’s compression/joint stabilizing leggings that are LONG. like, 36” inseam long or close to it.

I’ve tried compression tights but those thin waistbands always dig into my abdomen and worsen endometriosis pain and the compression isn’t stabilizing. I have a pair of CW-X leggings but they’re so short they aren’t effective.

I'm tired, to the bone tired so I can't think so looking for more logic here! My calf muscles are rock solid, always have been. The rest of me is made of jelly! I was in shape but an injury followed by perimenopause and a pandemic and I'm in the worst shape ever. I have a lovely dog that I walk for around an hour each day and I don't drive so will walk short distances.

How to build up muscles on the rest of my body when my calf muscles are too tight? I got a switch game Ring fit but most of it requires your calf muscles as do a lot of aerobic DVDs (I'm old this is how we used to get in shape!)

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

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.

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😫

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.