Noticed this morning a few of my toes are bruised and slightly swollen but they don't hurt anymore than usual and I don't think I've injured them. Is this just something that will keep happening now?

I got diagnosed with hEDS without a genetic test to rule out other EDS types (probably because the nhs don't want to spend money if they can help it), but I'm starting to suspect something has been missed. My skin is very fragile and I bruise and bleed seemingly for no reason, or after a very light contact with a surface. I have heart problems and am having test for peripheral/small fibre neuropathy. My parent say my skin is alot softer and alot stretchier than anyone else in my family and are freaked out my how early my joint come out of place. Wounds heal very slowly and leave big scars and I've even had som wounds for years that show no sign of healing anytime soon.

What's the criteria for cEDS /clEDS (for example) that would've prevented me getting a genetic test? The same has happened to my cousin and she's having to fight for a genetic test after being told she needs bladder,shoulder and heart surgery that don't seem normal for someone with hEDS.

I have EDS. (Veds) I am 51F. I just went through a very traumatic year and I'm also pretty sure I'm going through menopause so I have declined significantly in the past 3 months. I can't seem to stay out of the hospital and my life is pretty miserable at this point as I'm in a significant amount of pain no matter how much pain meds I take and I'm having health problem after embarrassing health problem. Someone close to me has offered to take me to Mexico so that I can have a stem cell transplant. I just got out of the hospital so I'm trying to do some research and I'm seeing really mixed reviews. Anyone know of someone who has had this procedure specifically for EDS? Everything I'm seeing isn't really about that. So I thought I'd see if anyone has any personal experience? I have had surgery in Mexico in the past so I'm not as concerned about the medical tourism aspect. I'm more concerned with if this is going to be a waste of money or hope. Some things I'm seeing are saying that it is amazing and some of the stuff I'm seeing says it's bogus. Not asking for any medical advice just asking if anybody knows anybody else who's done this and how it went for them. Please help! Thank you in advance. TLDR: I have Loosey goosey syndrome. Will a stem cell transplants help that?

First let me give some context. I had my second kid in July before I knew I had a chronic condition. I was recently diagnosed with hEDS and pots. I've already had a surgery on my lower back due to disc instability which I thought was just bad luck at the time.I am in physical therapy but I still experience a wide variety of symptoms from both the hEDS and pots. On good days I can walk around and do mild activities but on bad I'm hardly able to get out of bed or walk without the use of mobility aids.

I'm married and together we have two kids. Like I said we didn't know I had these issues before the kids were born and after the birth of the second my issues seem to have only gotten worse. Lately I find myself having my husband come home early or miss work to help care for our kids on days where symptoms are really bad and I can't watch them (the oldest is almost three). We don't have any family or friends that can help out and childcare is outrageously expensive so it's our only option at this time. However he was just fired from his job for missing so much work to take care of me and the kids because of my health issues. The employer said it was due to him "obviously quiet quitting for awhile now" but it's pretty obvious it was due to my husband missing work for us but they needed a reason more valid than that.

We live in Oregon and I'm pretty sure there's laws in place but I don't know if there's anything that will help. We've lost our sole income and while he's diligently applying to other jobs we don't know what to do. I've considered applying for disability but I worry I'll be denied because I watch our kids all day while he's gone with about a 70% success rate and won't be considered "disabled enough". I don't know if I've given enough information here but I need advice on ways to make things better or easier for us.

Hey everyone, I've been in the middle of trying to get a diagnosis for hEDS and POTS for a while now and I've put my decision on what kind of birth control on pause for a while, but now I'm living in a red state post Nov 6 2024. I've always been worried about hormonal birth control impacting my chronic pain and effects of IUDs, but now I'm not sure what my best options are if I want to go down the birth control route.

What are some recommendations? What's worked for you all?

Hi all, so I have hEDS.

I'm currently staying in a women's shelter, I was in a double bed I was comfortable in. They recently moved me to another room for a couple of their reasons one being they were expecting someone who never came who needed that room and me and my son in a different room.

This room is a small twin bed against the wall and the only other options are hard bunk beds. I can't lie in a way that my back and hips aren't sore.. I saw someone post a picture of it on here not long ago and it's the ONLY way I can sleep. One night on this bed and my crying and miserable I current only have toradol to take as my Dr is off and I've almost puked a few times today from it.. I couldn't even remember which medication I took this morning I was in such a brain fog which isn't normal (I didn't accidentally double dose anything, luckily)..

I told people multipe times I can't do this and they've noted it.

Chronic pain and abuse makes you so silent I don't know how to make anyone understand how difficult it is and how much sleep and a proper bed is important.

Any help at all is greatly appreciated.

I don't know if I'm just oblivious and should have absorbed this fact a year ago when the info was published, but I've just found out that apparently supplementing with methylated folate (B9) can help our symptoms massively!

I'll link an article that summarises the findings and also the study itself:

https://news.tulane.edu/pr/could-vitamin-deficiency-cause-double-jointedness-and-troubling-connective-tissue-disorder

https://www.cell.com/heliyon/fulltext/S2405-8440(23)02594-X

I spoke to my sister about this and she said her understanding is that the regular kind of folic acid is actually counterproductive for us as it can block our absorption of the methylated kind if we take it, so she advised to avoid things that contain added folate unless it's methylated. Take that part with a grain of salt as I haven't researched it yet to confirm, maybe someone here can advise on this?

Anyway, I've ordered a new multivitamin for my son with the methylated B9, and have ordered some for myself, too. I can't believe that this is such a simple thing that seems to really help people, and that it isn't more widely known (unless I'm literally the only person who didn't get this memo!)

Also, I found the text of this recent study weirdly validating. It's been shared here a lot, but in case anyone missed it:

https://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.63857

I struggle with impostor syndrome and sometimes feel almost like I'm lying about having EDS (for no reason, I absolutely do have it and I don't know why I feel like this, but I know it's not uncommon. Perhaps a side effect of being treated like a malingerer for so long before diagnosis?) Anyway, the study describes the impact of EDS, listing a lot of the systemic issues involved and talking about the mental health impact, too. I suffer from every one of the variety of issues mentioned, and it helps to remind me that it's very real and very debilitating, and that it's okay for me to feel like life is hard and somewhat awful, because I AM actually dealing with a lot of different health issues, I'm not just making it up. I really needed that as I'm not doing great at life because I feel like shit, and sometimes I need to see in black and white that yeah, EDS is no picnic.

So hopefully even if you all knew about the folate thing, someone else will also find the newer study comforting/validating and will appreciate seeing it discussed in the way it is.

Solidarity x

I know this sounds ridiculous but I have been really struggling to keep up my energy lately and just on a hunch I decided to sneak more salt into my diet. Well. You can't taste a sprinkle of salt in a cup of coffee so I salted my coffee.

This is the first day I've had any energy in weeks. So I'm going to buy a salt shaker and put it in my drawer at work with my nutmeg and vitamin D drops. It's weird. It's really weird.

But this beats having to eat a ton of pretzels every day. I'll take it. (Also, guessing it'll work especially well with the caramel creamer someone brought in for us.)

Hi all, last year I was diagnosed with fibromyalgia but I never had anything other than a blood test that showed no inflammatory markers (I couldn’t tell you which ones were tested from memory) and later a physical exam by a rheumatologist.

The medication I’m on definitely helps with the pain, but if I’ve been misdiagnosed I want to get the correct diagnosis. hEDS matches my symptoms a lot better. I’m just wondering if there’s anything specific I can ask the doctor to consider/test to help with this.

I’m planning to take a printed and filled out diagnostic criteria form and discuss the symptoms I have that match hEDS better (bad teeth, pain more centred around joints, hyper mobility), but is there anything else folks with a diagnosis would recommend me including? I’m just nervous of being brushed off.

Any advice is welcome, thank you!

I just worked an event for the first time and was standing and some tiny walking for 5.5 hours. For the most part, I was fine, until about the last hour or so and the pain on quickly. It's been a few hours now and everything is stiff and hurts so bad, from the heels of my feet to my knees and most of my lower back. Other areas hurt like the back of my neck and shoulders, but those are minimal in comparison.

I feel so sad and upset. It just feels worse and worse the older I get.

Does anyone else experience this?

To help on a multi-hour solo drive, I stuffed it in between my leg and the car door to (1) support my arm and (2) keep my leg straight thus helping my back pain!!! Joelle (a sleepamallow Bigfoot) is a real one 💙

Hello!! I'm just having a problem, I have many symptoms of EDS, and in no way am I diagnosing myself, but I want to see a doctor to see if it's EDS or something else. But anytime I bring it up to my mom she ignores me. I'm 15 BTW. ONCE I went to the doctor for all my symptoms and the doctor just wrote it off and said it was my anxiety and that I needed to get more exercise; she didn't even do in depth she jsut asked what the problem was I sated my problems and then she said "Your young so it's nothing, probably anxiety, get more exercise" That was a while ago and I'm getting plenty of exercise but I feel like my symptoms are worse. Most recently I was in so much pain for 2 days I could barely move. How can I build up the courage to ask my mom to get me a doctors appointment and what can I say to make her take me seriously.

I have EDS and suspect vascular EDS, but my various doctors won't refer me for testing because of some weird territory thing (each doctor says it's not within their authority to refer to a geneticist). I saw a cardiologist, who was amazing, and said I have mitral valve regurgitation after extensive testing, which results in a chronically high heart rate, and over the last year or so I've developed high blood pressure. I also have ADHD and am trying to get my heart rate and blood pressure under control because my cardiologist said if I continue to have long term strain on my heart, I may have to quit my ADHD meds, which I literally cannot function without.

I'm trying to look for a relatively cheap ($50 or less), but accurate heart monitor watch so I can keep track of my heart rate throughout my work day and use breathe exercises/mindfulness when it's getting high, but everything I find is very expensive, suspicious quality, and/or tries to sell the whole "apple watch" knockoff thing hard. I actually DON'T want a watch that will send me calls and notifications, it gives me anxiety to feel chained to my phone, I literally JUST want something that will monitor my health, but it would be nice to have something Bluetooth compatible so I can log/show my doctor on an app.

Does anyone have recommendations?

I recently got accepted into Mayo's EDS Clinic for January. I'm not really sure what to expect and was wondering if anyone is willing to share their own experience?

I try to do the least standing possible on the weekends to be able to walk during the week without it hurting my knees or tiring them but my mom gets super mad at me when I don’t want to go hiking or walking with on weekends. I don’t want to make her mad because it makes the whole energy in our house uncomfortable but it literally worsens the pain in my knees so bad. I don’t know what to tell her since she doesn’t take me seriously and it makes me really sad :c

I commented on a post earlier about trying a new KT tape brand specifically meant for EDS. The brand is "TRUE POWER “Far Infrared” Kinesiology Tape". I was really excited for this as the reviews have lots of EDS people using it. As a KT tape it is honestly really really good quality. I applied milk of magnesia as per a recommendation before hand and then my PT applied tape on my shoulders on Thursday. I ended up taking it off Friday afternoon as it was itching and burning. I took it off with baby oil and warm water. I tend to form blisters under adhesive, and that's what happened here. I have clusters of blisters on my shoulders, popped blood vessels, and just raw skin. It also struggled to stick to my skin because of my texture, which was annoying. But, if you have less sensitive skin than I do, it may be a really good option.

I'm looking for two things:

I've seen ring splints and everything and I'm very interested in getting some. Does anyone know of a brand that also has splints for the ulna bone area? This is where most of my instability is, so it would be helpful to have a full set that supports everything. I'm a crocheter/knitter and really miss doing it.

Also, what do you all use for under the legs pillows? My pillows are pretty flat now and not doing enough so I'm looking for a new one. I shift between my back and sides, so I'm struggling to find something that will work both on my back and in between my legs when on my side.

Thanks!

Here are my experiences with it.

• I’ve had benign fasciculation syndrome (BFS) since childhood.
• It only occurs after very long walks and starts once I sit down.
• The twitching slowly fades away after 15-30 minutes of rest, even without water or electrolytes.
• It feels like a random, invisible popping or twitching sensation that isn’t in sync with my pulse.
• It affects only my legs after long walks and never happens in my upper body, even after strenuous exercise.

After recent events with my health I am sick of how long ive been holding out on the nhs for a genetic diagnosis, medical gaslighting, rejections etc..

I'm seeking a private (full connective tissue panel) genetic test.

Id be really grateful if anyone who has also done this in the UK could list the provider and the total cost.

I am also happy to travel within Europe for this. I just can't seem to find much info no matter how much I research

(FYI london hypermobility unit/network rejected me via email)

So my dentist is recommending I get my wisdom teeth out along with a molar that has decayed beyond repair. I’m super afraid as my primary has recently referred me to get checked out for EDS and I know it can affect healing. I put on my form at the dentist that I’m going to be evaluated/that EDS was suspected, but I know that’s not always checked and people may just not know the extent that it affects healing. Does anyone have experience with wisdom tooth surgery and healing with EDS?

Now waiting on the blood work. Really worried about the vascular component. Also pretty disheartened that I was told outside of PT and supportive braces…this is it. I feel like there is no help and my life is day to day. I liked the geneticist (very prominent hospital) but I wished at the end of the very long appointment I had some hope. I feel like it’s just another label and possibly more bad news. Welcoming any help or anyone that feels the same. 🫶🏼 🦓

i’ve been looking for a mattress but i’m terrified to spend such a massive amount of money only to be in more pain than i already am! i’ve been looking at Emma mattresses because they’re on sale currently- do any of you have any tips?

So....nightmare situation. I had a fold down shower seat attached to the wall in my shower for around a year. About a week ago, it fell off the wall while I was using it. Looks like it hadn't been installed correctly and the screws used hadn't been long enough to anchor it properly into the timber framing installed behind the tiles to support it. I landed heavily but thankfully fell forwards rather than backwards, so I didn't impale myself on the screws. I'm shopping for replacements while the tiles are being repaired, but I've lost faith in wall mounted ones. Anyone got any product recommendations for a free standing shower stool/chair? I'm 5'8 and approx 200lbs so it needs to be able to handle that - I DO NOT want this one collapsing under me! Thanks 😊

I hope this doesn’t go over weirdly since I’ve seen numerous posts/comments debating in this sub that ribs can even regularly sublux. I’d like to preface by saying the semantics is broad and I don’t think there is a dedicated word for what my rib issues are in medical literature, but I call it a subluxation because that is what my doctors have called it (in terms of the whole constellation of rib instability issues I have, outside of slipping ribs). This is just the easiest verbiage for me to use, rather than “out of place due to overly lax ligaments”— and frankly, any body part I have to manually set back into place feels tangential enough to be considered a subluxation, at least colloquially.

So, that said.

(Caveat 2: providing abundant context and background below.)

I was diagnosed with bilateral slipping rib syndrome in 2016, affecting ribs 7-12. Did PT for basically 2 years, had a gap year of dealing with other medical issues, then spent a year in network trying to find a good surgeon. I was allowed by my insurance to go out of network to a leading specialist. The head of the department of cardiothoracic surgery at the university hospital system local to me wrote the letter / vetted the out of network medical necessity forms for me, and also basically fought for insurance to cover for all the surgeries, because he said I was a severe case and nobody within network had experience in treating someone with my constellation of intercostal issues.

In 2020, I had bilateral surgery on the 8-12 ribs, and I was a mess in there. For the first surgery, on the right side my surgeon partially removed 11 & 12, and then did a combination of suturing and using hardware on my 8, 9, and 10th. On the left side, he fully resected my 12th rib and partially removed the 11th, then did the same suture/hardware situation for my 8-10. The specifics are beyond me.

I ended up having a stomach flu post op and ruptured my hardware on the left. Had a revision after that; ended up fully removing one of the ribs (well, it’s a nub now). Had another revision after that - a little over a year later - because my right side was still so mobile, some of the hardware was loose again, and was compressing/pinching my insides when my ribs still popped around, so the hardware was taken out unilaterally.

First surgeon warned me that I was the worst case he’d seen and surgery could improve my floating ribs but eventually cause problems with my upper ribs, above where stabilization occurred. Unfortunately, I now have issues from ribs 2-7, right sided.

My original surgeon said after the third surgery that he was at the limit of what he could offer me and told me to look into other specialists or thoracic surgeons who deal with complex chest wall reconstruction, as a baseline, because isolated SRS specific surgery is unlikely to help me.

My primary recently ordered imaging for what we thought was unending costochondritis, but it was actually costochondral separation of my right side ribs, in a segment, mysteriously multiple already old fractures (???? did not know I ever did that), and my xiphisternal joint is garbage- the xiphoid process is not even connected to my sternum and is rotated at “an incorrect angle” and the radiologist recommended a consult for a potential xiphoidectomy. There are also a slew of issues in my costovertebral joints as well due to their laxity, and although I never had scoliosis to my knowledge, apparently I have moderate scoliosis (but my spine scans from 2 years ago showed no scoliosis, for what that’s worth).

All this to say — I really don’t know where to go, and it seems like neither do my doctors— which is understandable, when approaching this from a slipping rib syndrome surgical perspective. But since there isn’t really a word for the diorama of rib struggles I have, I don’t know how to find a surgeon to take on my case?

I looked into the society of thoracic surgeons and wondered if reaching out would be useful, and I also looked into chest wall doctors who do things like NUSS procedures.

I also emailed my original surgeon who I’ve admittedly not reconnected with since 2021/2022 when I had the last surgery (I can’t remember if it was December or January haha) to see if he had any specific recommendations for who to see next. When we last spoke, they weren’t as bad as now, and I was in the midst of complications from a jaw surgery so I put the rib issues on the back burner until they severely impacted my quality of life again— for about 18 months they were painful and unstable but it was at least predictable and manageable, until it wasn’t. I hadn’t asked for any specifics at the time, since I was unraveling other issues.

I was considered a failed surgery on all 3 previous surgeries, through truly no fault of my surgeon - he did essentially fix my left sided issues, after surgery 2.0, but the right side is a real monster. I can’t raise my left arm, bend over, roll over, shift my hips, straighten my spine, or breathe deeply without yelping.

Googling for only US slipping rib specialists shows 4 doctors- one in Seattle, my original surgeon, Hansen at WVU, and a California surgeon. I’m in the works of consulting with Hansen and the doctor from Seattle, but wanted to open the floor so to speak to other folks who may have had similar issues?

Also, an aside, but if it would add credibility to the “rib subluxation” discussions, I have video recordings that I took to show doctors in appointments, so I wouldn’t have to do a live demo since it exacerbates the issues. I did not include the video as I was unsure if that was/was not a party trick.

Also, my tenth PPS here, but I am asking not for specific medical advice about ribs themselves, although I am asking anecdotally for any tips/advice on navigating complex health issues that don’t have clear solutions, especially when there is no designated care coordinator to help. If this is too close to asking for medical advice though, I will happily delete!

Would be wildly appreciate for any hot tips - broad or specific. I’ve always had fairly 1:1 referrals before and this is my first nonspecific “well, there really isn’t any protocol for this!” quest. Any tips on navigating the healthcare system when you’re sort of in a very small niche would be helpful too! Thanks so much.

This is long, sorry in advance:

Hiya, I did the at-home genetic test from Sequencing.com and used my results to get an appointment with a clinical genetic counselor. Both my local hospitals that do DNA testing denied me for EDS testing despite my doctors immediately agreeing with me about getting checked for it (they had a list of documented issues that I needed to have already on record to be accepted for testing, because hEDS is more common and doesn't have a genetic marker yet)-- thankfully there is an allowance for 'irregular genetic result' so after using sequencing they finally allowed me to make an appointment, but unfortunately it's not for months.

So now I'm sitting with my Sequencing results and trying not to gnaw my fingernails raw. My primary said that he doesn't know much about Loeys-Dietz so he wasn't comfortable giving me any immediate info about it and wanted to wait for the genetic counselor, but he thought that me being a carrier for two types of EDS would explain my symptoms... However, all my Google-Fu has only cemented the fact that being a carrier means that I shouldn't have ny symptoms at all, even if it's for two types?

And introducing Loeys-Dietz Syndrome into this is an extra bit of anxiety: Sequencing just says 'possibly detected' which is frustratingly vague. I'm so absolutely sure that something is wrong and honestly the unsure language of my sequencing results is just making me go in mental circles.

How trustworthy have we found Sequencing.com? Has anyone gotten an unclear result from it and then had it re-tested with a clinical-grade test and how did it compare?

background: my friend is in a graduate program and i offered to help her study by being a fake patient. she measured some ranges of motion on me that i never considered out of the ordinary, and it turns out that there are a lot of hidden ways i'm overextending all the time without even knowing it

i've had some more specific PT before, but now i'm wondering if it would be worth it to just ask for a physical therapist to measure every joint of mine and tell me exactly what a normal range of motion is for each one so i can stop accidentally injuring myself. has anyone had this experience or asked this of a PT before?

does anyone else bruise when you rub your eyes (even softly!)?

You can post about whatever you want during Off-Topic Saturday! All other rules are still in place during this day.

• Off-topic posts can only be posted on Saturday as their own individual post.
• Off-topic posts must be posted between 12:00 AM and 11:59 PM Eastern Time.
• Off-Topic posts must use the “Off-Topic Saturday” flair.
• Topics or pictures that could be triggering need to have a Trigger Warning in the title and must be spoilered.

Some ideas for posting:

Your favorite pet, relationship advice, new recipe for a fantastic dish you made, your most recently finished crochet project, or your enormous collection of PlayStation games.

--

Whatever you want to post about, do it today!

Posts regarding EDS are also allowed during Off-Topic Saturday.

Hey EDSers

My spouse and I are having difficulty with my lack of drive/libido. EDS plus endometriosis makes it really hard to want to engage. What has been your biggest help if you experienced this? Hubs just restarted therapy, I’m in PT and MH therapy year round almost and getting ready for two spinal fusion surgeries. I’m afraid this rift may ruin us. TIA

I was wondering if anyone had any experience with tertiary contractions in the esophagus? I just got an esophagram this morning and he said they found those and told me I had dysmotility. Anyone else have experience with it?

I know we’re supposed to look young forever, but I’m starting to get really deep 11s and smile lines. My neck is starting to sag. I’m only 36!

I’m afraid to try anything that stretches the skin but maybe that’s what I need to do to circulate blood flow?

cEDS over here!👈🏻