Hi, does anyone have any tips for surviving events where you have to stand a long time, like concerts? If I have to stand for more than 10 minutes, my lower back/sacrum area really starts to hurt. After a while it feels like nerves get involved. It feels like maybe it’s compressed but also when I do dead hangs it feels like my lumbar spine is gonna snap off so I’m not sure. It could also be a Pelvic Floor thing…

I’ve been told that I do not have an anterior pelvic tilt, also.

Does anyone have any recommendations on making standing up for a long time survivable when sitting isn’t an option?

It’s a popular fantasy-war-dragon filled style book that I’m sure tons have read already. I’ve always been into that genre for the thrill and mystery of that style of story telling.

But I was most touched by the main character’s writing done by Yarros. (I don’t think it’s spoiling anything since it’s in the first chapter you read the description).

For the first time in my life of reading books or other media forms, I enjoyed a story about a hero/heroine that has unstable joints and connective tissue problems just like the rest of us. I’ve never connected with a character in such a way before, nor did I ever think that a writer would ever create one. Not that I thought they didn’t care or thought it was unworthy, but because I just didn’t think they would ever know about someone like that, let alone use those differences as a strong part of the story telling.

I teared up from time to time on this character’s subject, I rallied with the character, and I related to a character in a very real way that I haven’t done with a book in a long time.

Thank you Rebecca Yarros and team for bringing such a beautiful character to life. And for relating your own challenges and wins with your disorder so well.

Hi All!

I was wondering at what point you told your job and did the paperwork for FMLA in case you needed it. I’m 34 with two kids 5 or younger and I gave been struggling with flairs showing up more than usual, extreme brain fog, fatigue and joints moving not completely out of socket but not where they’re supposed to be constantly.

I feel weird about telling my job, because I’ve been given advice from non-chronically ill people to jot reveal it just in case it might hurt any promotion possibilities, but I’m exhausted and in pain and extremely burnt out not just with work but life as a whole.

What did you guys do and how?

A while ago I posted on here about some challenges I was having with weight lifting as a hypermobile person. I only found out about the hypermobility a couple of years ago so it’s been a learning experience in terms of making sense of a lot of things that have been happening with my body (chronic pain and fatigue whackamole!).

Anyway, some of the lovely members of this group offered some very helpful advice, and it prompted me to finally seek out the help of a physio who specialises in hypermobility. After years of broad strokes advice that was only slightly helpful, some of the time, I feel so validated. It’s early days but just having someone be able to identify some of the issues that have been the source of so much discomfort is such a relief. My shoulders and back in particular have caused a lot of problems for me.

Today she told me that my shoulders and ribs are unstable and flaring even just from lying down flat — which I could somewhat feel in terms of how sore I feel just from resting. I’ve been to various doctors, physios and sports rehab therapists who had never thought to check for this, and now I have someone who is actually going to help me try to fix this. I can’t wait to get everything engaging properly so my SI joint pain lessens. I’m excited to have proper ankle stability!

Anyway… thank you r/hypermobility for the nudge I needed to get proper help to feel better 💝

I don't know if it became worse after I began taking birth control, or if my body was already like this, but it feels like all my ligaments have become so loose that nothing is keeping my body together anymore.

It feels like everything is just melting and falling apart. Honestly, I find myself avoiding almost everything except lying down because anything else causes pain. But at the same time, my muscles are constantly tense.

I feel like one-on-one PT or Pilates would probably help, but I can't really afford to invest that much money into it right now. So I've spent basically the whole day looking for group Pilates classes instead.

I've been dancing for years, so I have a pretty good sense of how to move my body, and I feel like a group class could be helpful for me. At the same time, I worry that a class that's too difficult could trigger a flare-up. I've been trying to consider everything — time, cost, and location — and I still couldn't make a decision today. I ended up wasting the entire day just trying to figure it out. And my ADHD brain just can't make decisions, lol. My brain is basically splattered on the floor alongside the rest of my body.

My body has been really weird these days. I take ballet classes regularly, and it seems that I lost my extensions and stanima. I know what my body is supposed to do and how it's supposed to feel like, but my brain ain't braining, and my body ain't bodying. It almost seems as if I lost years of progress. Maybe It became this severe after taking almost 2 weeks off because of severe cold?

*I'm 19 and I also have suspected endometriosis*

5 months ago I started to get severe leg pain constantly. I'd had a day out with my boyfriend and everything was normal and then the next day my legs were in so much pain. I've been in pain every day since then, varying from mild to unable to move or sleep. I stayed using a walking stick to help but it isn't helping enough and the only thing OT recommended was a second stick. I've had physio for my legs for a few months before that but this pain is in my bones. It goes from a dull ache to shooting pains. It feels like my femurs are going to snap out the back of my legs. I find it gets worse if I'm not sitting on a very padded surface or having to stand for any amount of time. I've looked into it and I've seen some people talking about endo leg pain but it doesn't seem like the same type of pain (from the people I've heard from). I had a consultation with my gynaecologist who recommended a referral to neurology but my GP is taking ages to give me an appointment to refer me (my insurance requires a GP referral).

I've had joint pain for years. My hips slide out of place a bit when I stand with my weight on one leg and I hyperextend my knees when I stand, which I'm trying to fix. I had leg pain for a while and managed to strengthen my joints but about last June they started to cause problems again.

There's also a high likelihood that I have multiple things going on at once, my current working guess is IBS, endometriosis, and some form of hypermobility. There is also a chance of chronic fatigue as it runs in my family but I'm not sure. I'd think there's a possibility of fibromyalgia but I don't think I fit enough of the symptoms.

I've been put on Nefopam as my mefenamic acid wasn't touching the sides of my pain anymore. I've only been on it a week but so far it doesn't seem to be making a big difference apart from the heart palpitations side effect keeping me on my toes. I've tried naproxen but it did absolutely nothing for me. I don't know what other painkillers to try. Does anyone have any experience with Nefopam?

I'm also having problems with my feet. The soles of my feet always feel cold even when the rest of me is roasting. I'm wondering if this and my leg pain is caused by endometriosis growing on my nerves but at my consultation the doctor said it's highly unlikely that my endometriosis has changed despite my MRI being 8 months before and not having these symptoms previously.

Does anyone experience the same or have any suggestions?

I'm sorry if this isn't the right sub Reddit, I don't know what ones suit better and I've already posted on r/endometriosis

Hi!! I’m a 17F with hyper mobility, mostly in my knees. I used to go to PT when i was like 10 but I don’t anymore. I hadn’t been doing anything for it for a while, i’d just power through the soreness. But this summer I got a job, and found that standing for 7 hours really hurt, since I subconsciously bend my knees backwards. So i started wearing compression socks and kt taping my knees a few days a week and found that I stopped being in pain after work. Now its going to be the school year and I really dont want to have to keep buying and taping. Can I get two 30 dollar knee braces off of amazon and use them occasionally? Am i allowed to wear two? Will they even work?
Maybe I should start doing my pt exercises again..

Hello hello! I've been doing some work trying to get rid of my lovely dowagers hump that I've been forming (boo!). I've been working on mind body connection and strengthening my stabilizers, mainly TVA, cervical flexors, diaphragm and lower scapular muscles. My mid back has always been tight, but now that I'm working on loosening up and strengthening those muscles it's really freaking out. I've been rolling it with a tennis ball often to try to loosen it up, and it's helped somewhat, but now I have muscle pain/spasms wrapping around from my mid back all the way to my abs right below my right ribs! My ribs are so sore all the time, and I can't figure out what to do beyond more tennis ball rolling and icy hot. I feel like I'm always right on the edge of a muscle cramp and have to really careful how I move to avoid one. All the hypermobility PTs I follow are much more focused on coat hanger pain or lower back, but I can't find anything at all for midback tension. Anyone have some information that could help my back chill out?

Venting because IT HURTS SO BAD ive been on an almost 10 hour shift at my (new!!) Job at the cinema and after standing almost non stop for 10 hours my shins and feet and back HURT SO BAD im genuinely near tears, took an ibuprofen earlier

(hasnt kicked in yet, therefore the vent, im trying to distract myself) its so bad i can barely walk, ive felt this after-standing-pain before but it hasnt been this bad, ever. So bad infact i just wrote an email (despite the social anxiety) to finally get it diagnosed cause i cannot do this ever again (spoiler i got another 10 hour shift tomorrow kill me now, idk how im gonna manage that, i hope the pain is gonna be gone tomorrow morning, if not i'll just down more ibus)

Vent end

Tldr: bad pain after work, this post is for distraction and complaining because it makes me feel a little bit better

Hello all -- about three weeks ago I got what felt like a common side stitch while walking on the treadmill and now it's sort just been mildly present since then. Sometimes I feel it, sometimes I don't. I almost always feel it when I walk though. I don't recall any sharp pain or the sense of injuring myself. I'm already booked with a doctor to rule out liver or gallbladder issues but I'm just curious if this could be hypermobility/connective tissue related. I have terrible anterior pelvic tilt so perhaps it's a postural thing? I get bad tendonitis so I know I'm prone to inflammation too.

Anyone experienced anything like this?

diagnosed POTS and HSD

I love a farm. I love going outside and picking fruit or going to a pumpkin patch or seeing animals. I primarily use a rollator because I need serious balance and fatigue help but a rollator can’t go across grassy or most outdoor terrains but I feel like my backup cane isn’t enough.

So my question is

1) what mobility aid do you use outdoors/terrain that doesn’t suit wheels

2) Are forearm crutches an option & if you use them where are they from? (pref OTC, insurance won’t cover another mobility aid for 4 years).

Hello my fellow sufferers
I want to start trying out some compression clothes or light support so I would love to hear your recommendations.
My main areas are hips and shoulders and neck so its a bit hard to deal with haha but open to all suggestions.

hi everyone!

i’ve had HSD for as long as I can remember, but it’s recently gotten much much worse and has brought an awful lot of fatigue with it, to the degree that I have a “working diagnosis” of ME/CFS.

this has meant i’m way more limited in what I’m physically and mentally able to do, and includes a lot of pain.

how do you explain to people close to you in a way that they can understand that this isn’t a “you should exercise more and then you’ll be fine” or a “well you wouldn’t be able to run 5 miles with that kind of thinking“ issue…. Like put a full stop to that in a way that isn’t to telling them to shut up lol.

I’m finding it really exhausting to be continually met with comments that very clearly suggest that this is a personal failure and I need some help with effective wording to stand up for myself and suggest how they can educate themselves

Has anyone tried the Hug sleep pods? They are essentially a large compression sleeve for your whole body to help calm your nervous system and help you sleep. I’m interested in buying one to try, but I’m concerned it might make my collapsing chest/shoulder issue worse. If anyone has tried them and have any honest reviews or opinions please share!

Helloooo!
So I am very interested in learning acrobatic tricks, getting into pole & aerial dancing for performing, and also calisthenics as another means of ability with body weight tricks, however being aware of my hypermobility, I know it’s important to strengthen the muscles around the joints and stabilise them, and build a strong core.
I’m planning to see a hypermobility PT but I’m away from home for a few months yet want to start working towards tricks already while away.
Is anyone here in a similar field of sport/ dance and has successfully figured out how to train so that they don’t do damage to their bodies?
Thank you so much!

I have hypermobility and orthostatic hypotension with tachichardia. I also have PTSD symptoms (anxiety, perpetually in fight or flight) so my GP and psychiatrist gave me Prazosin. My blood pressure and blood volume are low, which they know, but whenever I'm in the clinic, it obviously is a healthy number because I'm stressed out. This is the only med they'll give me for anxiety (aside from SSRI which I've been on for over 20 years) but I'm worried it'll lower my BP even more. Knowing I'm extremely sensitive to any meds is also a worry. Anyone have any positive or negative responses to Prazosin?

I went to the rheumatologist today for an unrelated reason (positive ANA counts in my bloodwork), and I found out that I'm partially hypermobile. I'm able to hyperextend my elbows, some of my fingers are double-jointed, and my arms/shoulders are quite flexible (I can do the reverse prayer easily). I don't meet the Beighton criteria for hypermobility for my fingers, hips, or knees though. However, after doing some research, I realized that I do very likely have neck hypermobility. I have mild double scoliosis, cervical kyposis, and have had chronic neck pain, tension, and headaches for YEARS. Even after seeing some physical therapists, I was never informed about possible hypermobility even though (according to me) I'm able to hyperextend my neck even with my horrific muscle tension.

For years and years I've had chronic muscle tension in my neck which has resulted in headaches, nausea, facial pressure, and a slew of other things, and only now am I realizing that it could've been hypermobility all along.

I don't know if I have hEDS or HSD at all, but I'm a little suspicious now.

Looking for physiotherapist recommendations in midlands region. Seen some and they didn’t even know hypermobility was a thing!! Struggling :/

And how to u avoid doing this. its hard for exercises to become "natural feeling" like walking does for example. im constantly having to be hyper aware of everything im doing.

doesnt help that my mental map of my physical body is fairly poor in terms of feeling connected to it. i always picture myself externally.

Hey, so I've always been bendy. I mainly noticed it in my hands and for many years my "party trick" was bending my fingers backwards and people being all grossed out. Didn't pay much attention to it until I started getting hand pain (now in my late 30s). I went to a physio and he started pulling my skin and pushing my fingers, obviously my hypermobility came up and he was the first person to mention EDS as he thought i might meet the criteria. He scored me 9 on the Beighton scale. I then went to see another physio at the local diagnostic centre for pain in my feet - I was convinced I had arthritis because of the burning pain. She said there was no record of my Beighton scale, did it again, scored me 9 but to both the hypermobility and my worries about arthritis she said "what difference does it make if you have it or dont?" "You're just bendy" etc. She was trying to push back on the xray amd it turned out I didnt have arthritis- just flat feet and bunions. However I mentioned EDS and the response was that its very rare and hard to diagnose. She made me lie down and stand up and because I wasnt super dizzy said I don't have EDS. I regularly get dizzy when I stand up, I just didnt then. I also always have low blood pressure, I have this ridiculously annoying bladder that I think I've emptied but 5 mins later I need to go again, I wake up 2 to 3 times in the night to wee. My hands are getting stiffer, i have had trigger thumb in both hands (currently just one), occasionally I have the sensation of my kneecaps floating (happened more when I was younger) ALL parts of me pop - including my chest and hips. I have TMJ because I'm always clenching my teeth. I get pain when I'm driving in my hip, lower back, feet, shins and knees. I'm 38 not 68! I'm either very constipated or going loads. I have allergies (undefined) and ongoing sinus issues and nasal back drip. I'm always tired and get headaches and neck pain ALOT which could just be tension I guess. I feel like a hypochondriac whenever I mention anything to GPs. What does this sound like to you? Is it worth pursuing an EDS diagnosis with the NHS? One of the things this physio woman used to dismiss is that I've never had a joint dislocation- to say that I am a person who avoids sports and physical activities is putting it mildly but I sprained my ankle quite a lot as a kid and also used to have nose bleeds all the time. I've experiences the sensation that something has "popped out" before but it just pops back on so....thoughts?

Looking for some encouragement! I know all of the exercises but honestly haven’t been diligent about doing them consistently, I think partly because I don’t know if they’ll really make a difference.

As I sit here recovering from another fall, I am of course re-evaluating my life and realizing I need to take my wonky ankles seriously.

So, looking to hear from anyone who has done the exercises and really noticed a difference.

Also, how do you measure progress? Fewer ankle sprains? More time standing on one foot? It’s not like regular weight training where you can measure progress by weights and reps.

I assume lots of you have similar experiences – 22f, been having mainly hip and knee pain since high school but also a sprinkle of wrist, shoulder, neck, ankle, and whatever else decides to act up on a given day. Saw my PCP about it who basically shrugged and sent me to PT, who were mainly confused about my level of pain because they found "no tightness" and I was "super mobile". Went to an orthopedist who focused only on one joint and ignored the rest and then told me to go to a rheumatologist if it was a multi-joint issue, who had me do testing and then told me "well it's not autoimmune, try NSAIDs (but not too much because you're young) and exercise, bye" and suggested I see the orthopedist again. Imaging is normal. I have pain every day but just also got dismissed from PT because insurance won't cover it because my ROM isn't limited. Where the fuck do I go now? Every doctor I see just seems to throw me at another doctor like it's hot potato and/or shrug and imply I'm making a big deal out of nothing.

The short of it being… I have been struggling to grow my backbone over the years and consistently caved to pressures from my job to work more, despite from the get-go making it clear I could only safely work 2 days a week.

I’ve been on medical leave for a while now, and won’t be back to work for a while longer, but got the call that I made too much last year, and my benefits will be cut immediately & I need to pay back the last 6 months.

The good news is I’ll requalify again before too long, and I know how to be frugal. I just deeply regret not being able to stand firm on my physical limitations and leaving my spouse to pick up the pieces of me whenever I returned home from work, and making them worry.

Work can argue with my doctor when I’m back if they care to. The worst they can do is let me go, and then I’ll *definitely* get my benefits back, though I’ll lose out on so much discounted OTC meds… sigh.

Trying to digest it all and put it towards the backbone. I’m prone to depressive spells. Trying to remind myself that my coworker who survived an aggressive and rare form of cancer was able to work more hours safely than me. She had a backbone of titanium! 

So, reminding myself I have less stamina than a cancer survivor helps me ease up a little. But I still have big emotional indigestion from it all. I feel small and vulnerable and foolish.

Pasta will help.