My wife is 34 and suffers extreme pain daily that’s really effected her quality of life. She’s been diagnosed with EDS, but as it’s a rare disease, she’s been unable to find a doctor in the City really familiar with treatment options and/or willing to put in the time and energy required to provide her some quality of life improvements. If anyone either is a doctor with knowledge of this condition, or knows of one, please let me know so she can reach out and try to get back to doing the things she loves. Thanks!
Here’s the link to the EDS Society’s website for anyone interested. https://www.ehlers-danlos.com/what-is-eds/
Thank you all so much for taking the time to reply. I see there are some others on here with EDS. My wife has made a Facebook page for a local EDS group so people going through this can share helpful tips etc. here’s the link if anyone is interested: https://www.facebook.com/groups/271406011627243/permalink/271417538292757/
Hey,
I have EDS (hypermobile) and because of that I am on testosterone replacement therapy for the last two years. It really helps with my overall energy, fatigue, muscle streangth, regeneration. It does not help with any of my chronic pain.
But here is the twist. I am a mtf transgender and plan to start estrogen therapy. But I am really scared that I will lose all of the benefits of the testosterone replacement therapy and even feel worse than before the testosterone therapy, because I read some posts, that estrogen could make symptoms worse.
Now I am scared and don't know what to do!
Is anyone in a similar situation?
I saw some very interesting data that the Ehlers-Danlos syndromes are actually more common in people who are also diagnosed with Anorexia Nervosa, than the general population. It's so fascinating because it suggests there might be some psychological or maybe even physical links! Anyway, as someone who has the hypermobile type and suffers from amplified effects on my joints, skin and general health, I'm wondering if anyone else has it and how they cope with the struggles? I feel so useless, because there are a lot of careers I'm currently unable to pursue due to chronic pain and injuring myself too easily... And I know Ana is not helping, but I just can't bring myself to recover, it's such a vicious circle. I just don't know what to do, but I'd love to hear about your experiences and any tips at all would be greatly appreciated!
I ask because he is a tall skinny man with abnormally long limbs, a relatively small trunk, microcephalia, and a raspy high-pitched voice. He even has a mild hunchbacked gait.
Hello, first time poster here! I am 20/f living in the US with questions about some symptoms I've been experiencing and if any women with EDS also experience these. I am not diagnosed and just exploring EDS as a possibility. As those living in the US know time with physicians is short and expensive, so I'm looking for some clarity before bringing it up to my PCP.
Also want to clarify I'm not asking to be diagnosed or asking for medical advice, just wondering if these are experienced by/ common in women with EDS. I understand that there could be another explanation, I'm just exploring the possibility. I appreciate any feedback and also appreciate that your community is so open, especially when healthcare in the US is so inaccessible.
Lets start with the stuff I know is consistent with ehlers danlos
- hypermobility- scored 9/9 on Beighton score, struggling with hyperextending knees/fingers/shoulders. Lots of subluxation in fingers/shoulders resulting in pretty chronic pain and joint stiffness. My PT was actually the one who pointed me towards EDS
- skin hyperelasticity- I'm very stretchy, has very soft thing skin, bruise easily, get some funky scars
- Acid reflux- this one is a little newer but for a year or so have been getting lots of heartburn and other acid reflux symptoms
And off to the things I'd love to hear about cause I'm not sure they're related
- - bladder stuff- frequent urination, always having the urge to pee, not completely emptying bladder (I'll pee but the sensation that I need to go doesn't go away), some mild incontinence
- Dizziness when standing
- ADHD/GAD/depression - an iconic trio
- Inconsistent appetite- sometimes I have 0 interest in food or feel nauseas at the thought of eating, other times I feel like an endless pit and I could eat everything. Along with this just general GI weirdness.
- Chronic fatigue- I could sleep forever, or when I'm not sleeping I want to be laying down.
This isn't an exhaustive list of symptoms, just the major ones. I have been struggling with my health since around puberty with little help from doctors. I have the age old story of being brushed off by doctors because of multiple seemingly unconnected symptoms. Not to say that I don't trust doctors, I do, and I know that they can only do so much, but having pain written off as psychological when it clearly isn't is... frustrating.
Anyway would love some feedback, and please feel free to correct any issues with language or approach. I want to
... keep reading on reddit ➡
Hello,
my genetic results came back today. my geneticist told me i have an ehlers danlos of unknown significance i didnt really managed to understand him... he said that probably no one else have the same issue as me in the world,when i asked him what type is it.
is it heds? i read on the internet that you cant diagnose heds through genetic testing...
i was tested because doctors thought i have marfan at first(severe hindfoot deformity,pectus carinatum,scoliosis,kyphosis,positive thumb and wrist sign,stretchy skin,hypermobility)
im afraid i have diagnosed with something really bad... how likely it is heds?
nvm,its classic
It's a really Deep rabbit hole but once you get in you'll be pretty fucking annoyed to learn it's all connected.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6917879/
https://pubmed.ncbi.nlm.nih.gov/8838976/
https://onetherapy.com/the-pelvic-floor-hypermobility/
i have an aunt in her early 40’s with down’s syndrome, i was recently diagnosed with eds and several of my family members are working on getting their diagnoses. i’ve noticed a lot of symptoms in my aunt, including a 9/9 on the beighton scale, but when i bring them up to my mother (her guardian), she says the symptoms are only related to her down’s.
google hasn’t been much help. should i continue to advocate for my aunt to get a diagnosis or should i go along with what my mother says?
I am thinning considerably. I also have ehlers danlos (EDS) which is mostly affecting the dermis (Classic EDS / Classic-Like EDS)hyper elasticity and higher propensity for scarring. Does anyone have a medical pov on whether or not it’s advisable to get a transplant, or is the EDS too risky re scarring / the new follicles taking?
I am 18, male, I’m 5’9 and weigh 150lbs. I dont drink or smoke, though I would like to know if weed has any affects since I get a lot secondhand and am thinking about trying it in the near future. I take Dexmethylphenidate for ADHD.
I was diagnosed with Ehlers-Danlos as a child, and I never knew what it meant. I scar very easy, and my joints are overly flexible, which J contribute to this. Recently, I found out it affects my blood cells as well, but I dont understand how, when trying to research it its very confusing. Do any medical professional know anything about this I should know as soneobe whos diagnosed?
My joint hyper-mobility and elastic skin is key to my experience of Kundalini—both in creating the blockages, and the tingling/whooshing/flowing energy that is released when I realign physically.
I feel that the energy is Kundalini, and my relationship with my joints/tendons/skin are just my own personal puzzle to work with on this journey, and make for a particularly “embodied” ride.
But it made me curious: anyone else here have EDS or similar symptoms? And how does it affect your Kundalini path?
Hey everyone!
I'm 33 and have a moderate-to-severe case of EDS, along with a 45/41 degree S curve. My sister wore both the Boston and Charleston brace and my mom had Harrington rod surgery and then revision flat back surgery... so everyone was shocked that my scoliosis went undetected until I was 19 and it was too late to brace 🤣
In the past few years my scoliosis has very slowly been progressing. Because of the EDS, doctors have kept surgery off the table but in the last few months I can feel my spine grinding into my shoulder blade all day, every day—and this shoulder already dislocates. I have to crack my neck and back at least every 10 minutes and it does not bring relief at all, it's just so I can move. Any sort of twisting hurts. Luckily my lumbar isn't in all to much pain, despite that's where most of my degeneration is.
I'm doing pilates 3x a week, bound for yet another set of facet injections (the only thing I've tried that brings a tad bit of cervical/thoracic relief, granted it did nothing for lumbar). I take at least 5 epsom salt baths a week. And if you name a medication, I've probably tried it.
What do people do in their 30s? My mom's spinal deterioration was severe and her revision surgery was brutal—and her EDS is much more mild than mine is so that's my only frame of reference. Operation is an obvious last resort but I'm at my wits end. I don't know how I can live with this pain for the rest of my life and since everything keeps progressing PLUS the rest of my joints are frequently dislocating and deteriorating I'm just at such a loss.
I have been diagnosed for 4 years and just looking for people that share the same struggles.
Need advice to help severe rib cage pain or just pain in general . I am getting to the point in my life where I feel like I deserve actual pain killers, I am in pain every single day. I’m too young to be dealing with this. I try so hard to be positive but it’s starting to become exhausting to do so. I also have to wear a knee brace and use a cane. Also my toes closest to my pinky ones are curling under the toes beside them 😞 I’m an absolute mess. I’m waiting to see a rheumatologist again but it takes so long. I also tested above average for a high Ana test.
Long time GERD sufferer, I recently discovered I also have alternatively LPR. I've been also diagnosed with a 5cm sliding hernia. That was 1 year ago. Since then, GERD has been relatively ok after 5 months of 80mg PPIs per day and an extremely bland diet. It's seriously no fun and I lost 10kg in the meantime.
I managed to stop my PPIs medication and kept my GERD under control. But I have pretty bad LPR and nothing seems to keep it under control.
Anyways. In parallel I'm undergoing a diagnosis for Ehlers Danlos syndrome (EDS) and doctors are pretty sure I have one type. Either hEDS or cEDS. I know that if I had a hernia surgery all my GI symptoms would be kind of fixed. I am 30F, I have abandoned the idea of being pregnant since I heard about the hernia, and even more since the EDS diagnosis. But still, with no pregnancy, a hernia surgery isn't adviced on younger patients. And probably even less with EDS.
Anyone here with the same history and symptoms? I don't want to have Barret's esophagus or destroyed LPR lungs because of this fucking stupid hernia.
Hey,
I have EDS (hypermobile) and because of that I am on testosterone replacement therapy for the last two years. It really helps with my overall energy, fatigue, muscle streangth, regeneration. It does not help with any of my chronic pain.
But here is the twist. I am a mtf transgender and plan to start estrogen therapy. But I am really scared that I will lose all of the benefits of the testosterone replacement therapy and even feel worse than before the testosterone therapy, because I read some posts, that estrogen could make symptoms worse.
Now I am scared and don't know what to do!
Is anyone in a similar situation?
Anyone else in here diagnosed with EDS?? I just learned I have it.
