I could be wrong, but I feel like I've seen a couple people mention these things, and I certainly have had Mononucleosis and am hyper mobile, so I'm curious if these may be risk factors for long covid.
Occasionally I’ll pop by this sub and I’m always pleased to see some posts about BJHS or EDS and other hypermobilty or connective tissue disorders. Every time there are many people talking about it or discovering that they also have some pretty bendy joints.
What I never see however is it’s connection to occult tethered cord. If you have Bendy joints and other issues like PFD, POTS, CFS etc than this is something you need to look at as a possible culprit. Only issue is, only a handful of docs know it and it’s not visible on normal scans so it’s never diagnosed.
So I’ve had numb penis, erectile dysfunction, low labido for a couple years now. The muscles in my pelvic floor are vice grip of tightness. Constant peeing and the urge to pee, and also it takes forever to get a weak stream going.
Muscles weakness is a common focal point here , for good reason. My muscles got very weak , and turns out it’s because of an occult tethered cord.
For anyone else interested in it, please look up Dr Petra Klinge , and watch her lectures on YouTube. She told me she thinks I’ll get my feeling back and that PFD is directly linked to this.
I’ll make another post after I get my surgery and see how much it helps. Fingers crossed
My rheumatologist diagnosed me with this after saying that hEDS is very rare, so I couldn't have it. I did a bit of research because I'd never heard of this term and found some strong evidence that it is an outdated diagnosis.
I brought this up to my GP but she said regardless of the diagnosis, the treatment would be the same, but to me (and my autistic brain that likes things to be in concrete categories) it does matter that my diagnosis is correct.
Has anyone ever been diagnosed with this or does anyone have any thoughts on this?
I'm mildly hypermobile and sometimes my joints, usually my ankles but sometimes my knees, kind of give out and roll. I've sprained my ankle twice this way. Is this a hypermobility related issue or is it something else?
My situation is slowly getting worse, it literally started as just a steadily growing numbness on my right butt cheek, descending down my leg.
Had a MRI, it revealed nothing.
If I walk, I'm fine an can barely feel it.
If I stand the numbness is almost immediately resolved.
Considering the MRI on my lower back/sacrum revealed nothing I'm trying to find out if I have some SI joint issues? How would you test for them?
I've got PT tomorrow, so I'm going to see if they can help, is there anything I should ask them to test for?
They seem clueless tbh.
Hi! I recently got diagnosed as being hypermobile, which I essentially already knew, when I went to the doctors recently regarding my constant leg pain and my frequent inability to walk. I was also diagnosed with Gluteal Tendinopathy which has been created from an imbalance of muscle in my legs due to my hypermobility, however the doctor never said I had JHS, just hypermobility. He didn't do the full beighton test either, he only did half before deciding I was hyper mobile. I have flat feet and poor posture too.
Over the past few months, walking, driving etc. Has become increasingly more difficult. Unprovoked, I get a sharp pain in my hip joint and it becomes more and more difficult to walk on that leg as it burns or twinges in the joint and becomes limp. Similarly when driving, my leg will start to twinge and ache in the joint, however I have to ignore it. There is no preferred leg, each frequently hurts. I get twinging in my knee caps and cannot stand for long periods of time without my hip joint wanting to give way. My legs will sometimes "snap" when I'm walking causing a sharp pain throughout my leg.
My question is, what differentiates someone with JHS and someone with just hypermobility? And my follow up question, do I have JHS or just hypermobility with joint problems?
Saw a rheumatologist yesterday who did admit that he didn't have a lot of knowledge on connective tissue disorders like EDS....
So after all the hypermobility exam and such said that I had benign Joint Hypermobility and when I asked about EDS he said it's essentially the same as EDS Type III but he wasn't calling it that. As far as I can tell, they are different and BJH is joint pain after activity but this is all the time so I'm frustrated. Made an appointment to further discuss with my GP.
Did get a referral to another rheumatologist who has a special interest in EDS so while I can't see him until 2022 at least there's that.
Just another step on the way
I'm just wondering if anyone here has any experience or advice they could share about using swimming as an exercise to help strengthen hypermobile joints?
Where I am we've come out of lockdown enough for me to get to the beach to swim more reliably so I'm hoping to start going more regularly but my physical fitness (mostly cardio) has also been hit fairly hard from being stuck indoors for more than a year. Any advice anyone can offer would be greatly appreciated
I finally got an appointment with a geneticist. She said that while I have significant joint hypermobility I don't qualify for an heds diagnosis because my skin isn't velvety and heals well. I also don't have any serious GI issues. Does anyone know about the difference between these two genetics wise and potential issues? I have children and worry about what this means for them but I can't really find much on joint hypermobility syndrome.
So I have a lot of tightness in my muscles and really bad knots in a lot of places. Normally, I would stretch to loosen up those muscles & work on knots. But bc my joints are wonky, some stretches don’t work at all, others I’d have to hyperextend my joints to feel any stretch. And I’m not supposed to intentionally hyperextend my joints anymore, so idk exactly what to do if I want to not be extremely tight in all my muscles. Are there ways of stretching without making hypermobility worse? What has worked for other folks in this sub to deal with tight muscles, knots, etc?
I took my girlfriend with me to the pt & she showed her a few things she can do to help for my ribs and my shoulders & it was pretty helpful. I keep wishing some pt’s would get together & make a class we could take our partners to so they can learn how to help us better when we cant get to out pt soon enough for acute issues. Like technically I can put my ribs and other joints back myself but it’d be super cool if I didn’t have to wreck my hands trying to fix another joint 😅😭 Just a thought I had…could be helpful idk 🤷🏻♀️
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5335885/
I've been a Med Tech for 17 years, so between school and running labs for funsies over the years I have a lot of data points for Total and Indirect Bilirubin. When I was a student a teacher asked if I had been checked for Gilbert's syndrome because the TBili was always elevated, with direct bili and other liver function tests being normal. Indirect Bilirubin interferes with collagen production on the molecular level. Now my hyper mobile joints, weird skin elasticity, and fragile veins make more sense.
If other people with joint hypermobility have access to their old lab reports, it might be worth looking at the Bili numbers. I found it super interesting, but I'm also a lab nerd, lol
I (26f) have had joint pain in my wrists, knees and ankles for years. I didn't think much of it as my work is very physical. January 2020 I went to a doctor who told me it was tendonitis.
January 2021 I went to a new doctor who told me it was definitely not tendonitis, who got me blood tests, x-rays and a physiotherapy appointment. Nothing in my blood tests or x-rays. The physio said it sound like hypermobility, but that was it. No follow up on that or anything.
My fiancé looked up some things online and I can do things that are linked to hypermobility.
Problem is, without a real diagnosis, I can't just say I have joint hypermobility, and I don't know where to start on getting a diagnosis.
Does anyone have advice or resources on where to start? Any help is appreciated for I am in so much pain and would just like some answers
Hi everyone, I’m desperately looking for some shoe advice. I have flat feet and mild form of JHS, and I really struggle to find shoes that I can wear comfortably. There are only a handful of sneakers I can wear that won’t give me knee pain, but at least they exist. I can’t seem to find any men’s dress shoes that work. This wasn’t always a problem for me but it’s become one in the last several years.
Does anyone know of men’s dress shoes that might be good for someone like me? I’ve thought about trying to get totally custom made shoes. Has anyone tried that? If so, where did you get the custom shoes from?
Edit: I already have custom orthotics, but I’m still in pain if I don’t put them in shoes that also provide me a lot of arch support.
Does anyone else here have joint hypermobility? I am wondering if this is a condition that makes us more likely to get floxed. Almost one month in, and I have to be extremely careful that I don't bend my elbow and other joints too much otherwise it hurts quite a bit. Normally, I can flex my body beyond most people's normal range of motion and not hurt. Other than that I can barely walk and my achilles tendons are in pain much of the time. I'm wondering what other people's experiences are like with joint hypermobility and being floxed?
Hi!
Looking for one scientific paper/blog post/any resource (whatever the language) that mentions all these symptoms and signs of Ehlers Danlos. I know that some overlap with other conditions, but I also noticed that they can all be linked to EDS.
I am officially diagnosed as hypermobile but noticed that I have all these problems and they are frequent in my family; I will go check this with my rheumatologist and ask for a follow-up, but before I'd like to gather some resources and documentation, in order to show her 'in case if'.
Thanks 💜
I'm a 30/F with a history of 2 ACL repairs, and back and shoulder injuries from being a nurse. I've known I'm predisposed to having joint issues, and I'm very flexible. But I've never been diagnosed with hypermobility.
I never even knew hypermobility existed until this fall. I'd been struggling for months with foot pain, and suddenly in the fall, I started injuring multiple joints doing things I'd previously been able to do-- playing guitar, opening a door or even just holding my phone. It was too heavy for my wrists.
My sister introduced me to Martina on youtube and I discovered the #buildaladder community. I found so much solace in it because my symptoms were so similar. That's how I discovered hypermobility.
Backtrack: A year ago, I'd had an IUD placed. I stopped having periods for the first year (a normal and desired side effect), but they were starting to come back. After a few months, I realized my joint issues flared up before my period!
From the lack of information, it seems to be an uncommon occurrence. Luckily, I was able to find one article from a hypermobility specialist! Apparently, estrogen has collagen stabilizing effects and progesterone (IUDs release progestin) has destabilizing effects.
https://www.hypermobility.org/hormones-and-hypermobility
I had my IUD removed about a month ago and my symptoms immediately improved. I am now tracking my ovulation cycle. Progesterone peaks after ovulation, and my symptoms have returned after ovulation. I am hoping they will improve after a few cycles. I wanted to share this information with the females in this community as a cautionary tale.
TL;DR. Progesterone contraception may worsen symptoms of joint pain and laxity in women with hypermobility and rheumatoid arthritis.
Edit: The FDA has a website for reporting adverse effects. https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program/reporting-serious-problems-fda
Hey ppl, my sis has just been told she has benign joint hypermobility syndrome (We're in UK if it matters). But we're looking at getting her seen by a proper rheumatologist that has experience with these conditions (JHS/EDS) because we think it could be EDS but want an expert involved. For now though we're all confused as to what benign joint hypermobility syndrome is. It sounds like it's not a problem, it can't really bother a patient or doesn't do harm. But shes in pain! She keeps putting her back out. The joints in her hands pop out sometimes. Like that don't seem benign to me. The Dr said that people with benign joint hypermobility syndrome have depression and anxiety and that's why they're in pain but this guy don't know my sister! He also told us to look this video but it just made us angry, my sister especially. I feel so bad for her because its affecting her life but it looks like its not taken seriously.
I'd like to know more but everything online contradicts. One place says it's not a bad deal and another says it is. Would love feedback, thanks!
EDIT: I just wanted to share what my sis said after we read the replies together: SHe asked me to thank everyone here. She said her heart feels filled with support and she feels heard. I think she's going to join reddit just for this sub tbh! We read through the criteria for EDS again and she ticks all of the boxes that would lean toward her having it. But shes going to see a professional to make sure. She said this morning that for her it's not just a label its now a reason for what's been going wrong for her for so long. I get the impression it's a validation. But also the Dr who said it's BJHS said he can't help her and no one can that she needs to see a talk therapist and go on antidepressant. She's not depressed and doesn't have anxiety. This is part of why she was so angry. From me I just wanted to thank everyone who commented with a lot of care and consideration. I'm really blown away tbh. Thank you so much! I know that my sis is in good company! :)
Hi
I'm 26 (and female) and just got back from the rheumatologist. I've waited a whole year to see them so today was ''the big day''. My GP thought I had Ehlers Danlos which is why he referred me to the rheumatologist.
Anyway, after about 5-10 minutes they concluded I have arthritis, that I go for a blood test to see if my arthritis was autoimmune, and that's it.
My symptoms are joints dislocating with not very much force (like hanging from monkey bars, which happened when I was 5), pretty much every joint in my body is hypermobile (my elbows bend backwards, I can pull my thumb so it touches my wrist, my knees bend backwards and I can touch my toes without bending anything.. etc), tired all the time, always sweating, brain fluid leak and I get a rapid heartbeat when I stand up. My joints hurt and sometimes seem to move out of place and then I have to click them back into place..I have stretchy skin. Also wounds heal very very slowly.
I don't get any swelling or redness in my joints and my body temperature is always lower than average. I was asked if I had gut problems or hair falling out. I said no. He also asked if I had skin problems or anyone in my family had skin problems and I said no.
I'm wondering how Arthritis makes you flexible and causes stretchy skin? Also can arthritis make your skin really smooth like velvet, I get complimented saying I look young always. I also have these white polka dots on my heels when I put pressure on my sole but I'm not sure if they're related to the Arthritis because the doctor didn't ask to see my feet but I wasn't going to boss him around and tell him to look (because that's rude).
But something's bugging me about this, like something isn't quite right but I can't put my finger on it, am I just going mad?
The whole thing seemed strangely...empty and rushed? He didn't even ask me to show him my bendy arms or knees, didn't get out any type of measuring tools, or do any kind of examination other than pressing on my joints asking if they hurt. He didn't read the EDS criteria to me.
Has anyone tried using TRT or anabolic steroids to fix joint hypermobility? Would like to hear some anecdotes and if that's even possible. Not a ton of research on how to fix joint hypermobility other than small muscle strengthening via PT.
Hi all! I have a marina IUD and also have a condition called Joint Hypermobility Syndrome. (My joints and soft connective tissue are in bad shape) I have read on a few websites that progesterone like birth controls can sometimes make those symptoms worse. Does anyone have any suggestions or knowledge on the subject?
I’ve tried asking doctors before but everyone seems unsure.
Thanks!!!
Hey guys,I really want to start bass but don't which bass would fit me better.My fingers are short and whenever I extend them completely they turn like 15 degrees.Is a short scale better in this occasion?And if anyone else has joint hypermobility here,how do you deal with it?Music stores in my town don't let you touch or try instruments these because of Covid,which sucks.
Hi,
I've been testing out different insoles to support my arches, but I'm also noticing that my right foot in particular is flattening a bit (especially after 6-8 hours on my feet).
I go backpacking once a year and use brand new insoles on my broken in shoes, and I'm now using Chacos as slippers for the arch support.
I'm wondering if there's a more permanent solution here. For the record I've had bursitis before and have been told my hip flexors are super tense, and that my mobilizers were doing the work of my stabilizers & caused my injury at 18.
I'm always hesitant to try new work-out things because my proprioception isn't the best, and because I've done some real damage to myself bc my joints are floppy.
Any advice on what I can try vs stay away from? Warning signs that something isn't working out?
OMG! 😱
She then went on to relate a lot of my symptoms to EDS, even though (as you can see), I’m not actually diagnosed.
I was seeing her for “chronic migraines,” (that literally never ever go away), and she thinks I might’ve had a CSF leak since childhood.
This is plausible. I had one after back surgery, and while it was bad, I’ve definitely felt worse.
Like when I had RFA on my occipital nerve... which makes sense, because I might have a CSF leak making my face constantly hurt!! 😂
Anyway, off to get a brain and full spine MRI —
Any success with binding? I can only bind for a few hours before I start to get pain severe enough that it has made me throw up before. I’m skinny with big t*ts, usually wear a size UK8 and this is with a gc2b size XL. I don’t leave the flat much because of my disability so I usually don’t mind, but I’m going to be starting T soon and I’m worried that it may be unsafe for me to not bind in public once I start to pass more. Thanks in advance. I’ll probably repost later once the Americans are online :)
I just saw a doctor who suggested I may have hypermobility syndrome based on the random other symptoms I’ve had throughout my life. Those being acid reflux, retina detachment, ADHD, IBS, bruising easily, Raynauds. I am a relatively flexible person, but I have never been double jointed. My bones pop a lot but other than that, no joint issues. Can this still be hypermobility?
Hi
I'm 26 (and female) and just got back from the rheumatologist. I've waited a whole year to see them so today was ''the big day''. My GP thought I had Ehlers Danlos which is why he referred me to the rheumatologist.
Anyway, after about 5-10 minutes they concluded I have arthritis, that I go for a blood test to see if my arthritis was autoimmune, and that's it.
My symptoms are joints dislocating with not very much force (like hanging from monkey bars, which happened when I was 5), pretty much every joint in my body is hypermobile (my elbows bend backwards, I can pull my thumb so it touches my wrist, my knees bend backwards and I can touch my toes without bending anything.. etc), tired all the time, always sweating, brain fluid leak and I get a rapid heartbeat when I stand up. My joints hurt and sometimes seem to move out of place and then I have to click them back into place..I have stretchy skin. Also wounds heal very very slowly.
I don't get any swelling or redness in my joints and my body temperature is always lower than average. I was asked if I had gut problems or hair falling out. I said no. He also asked if I had skin problems or anyone in my family had skin problems and I said no.
I'm wondering how Arthritis makes you flexible and causes stretchy skin? Also can arthritis make your skin really smooth like velvet, I get complimented saying I look young always. I also have these white polka dots on my heels when I put pressure on my sole but I'm not sure if they're related to the Arthritis because the doctor didn't ask to see my feet but I wasn't going to boss him around and tell him to look (because that's rude).
But something's bugging me about this, like something isn't quite right but I can't put my finger on it, am I just going mad?
The whole thing seemed strangely...empty and rushed? He didn't even ask me to show him my bendy arms or knees, didn't get out any type of measuring tools, or do any kind of examination other than pressing on my joints asking if they hurt. He didn't read the EDS criteria to me.
Hi
I'm 26 (and female) and just got back from the rheumatologist. I've waited a whole year to see them.
Anyway, after about 5 minutes they concluded I have arthritis, that I go for a blood test and that's it.
My symptoms are joints dislocating with not very much force (like hanging from monkey bars, which happened when I was 5), pretty much every joint in my body is hypermobile (my elbows bend backwards, I can pull my thumb so it touches my wrist, my knees bend backwards and I can touch my toes without bending anything.. etc), tired all the time, always sweating, brain fluid leak and I get a rapid heartbeat when I stand up. My joints hurt and sometimes seem to move out of place and then I have to click them back into place..I have stretchy skin. Also wounds heal very very slowly.
I don't get any swelling or redness in my joints and my body temperature is always lower than average.
I'm wondering how Arthritis makes you flexible and causes stretchy skin? Also can arthritis make your skin really smooth like velvet, I get complimented saying I look young always. I also have these white polka dots on my heels when I put pressure on my sole but I'm not sure if they're related to the Arthritis because the doctor didn't ask to see my feet but I wasn't going to boss him around and tell him to look (because that's rude).
But something's bugging me about this, like something isn't quite right but I can't put my finger on it, am I just going mad?
Hi
I'm 26 (and female) and just got back from the rheumatologist. I've waited a whole year to see them so today was ''the big day''. My GP thought I had Ehlers Danlos which is why he referred me to the rheumatologist.
Anyway, after about 5-10 minutes they concluded I have arthritis, that I go for a blood test to see if my arthritis was autoimmune, and that's it.
My symptoms are joints dislocating with not very much force (like hanging from monkey bars, which happened when I was 5), pretty much every joint in my body is hypermobile (my elbows bend backwards, I can pull my thumb so it touches my wrist, my knees bend backwards and I can touch my toes without bending anything.. etc), tired all the time, always sweating, brain fluid leak and I get a rapid heartbeat when I stand up. My joints hurt and sometimes seem to move out of place and then I have to click them back into place..I have stretchy skin. Also wounds heal very very slowly.
I don't get any swelling or redness in my joints and my body temperature is always lower than average. I was asked if I had gut problems or hair falling out. I said no. He also asked if I had skin problems or anyone in my family had skin problems and I said no.
I'm wondering how Arthritis makes you flexible and causes stretchy skin? Also can arthritis make your skin really smooth like velvet, I get complimented saying I look young always. I also have these white polka dots on my heels when I put pressure on my sole but I'm not sure if they're related to the Arthritis because the doctor didn't ask to see my feet but I wasn't going to boss him around and tell him to look (because that's rude).
But something's bugging me about this, like something isn't quite right but I can't put my finger on it, am I just going mad?
The whole thing seemed strangely...empty and rushed? He didn't even ask me to show him my bendy arms or knees, didn't get out any type of measuring tools, or do any kind of examination other than pressing on my joints asking if they hurt. He didn't read the EDS criteria to me.
)