r/Hypermobility

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?

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!! 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..

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?

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 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?

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

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.

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

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!

Hey guys, I'm going to Japan in October and like many others, sitting "regularly" SUCKS.

I find it so uncomfortable to sit normally for more than a minute. Usually, I put one leg over the other and swap them every few minutes to stabilise my hips.

However, because I'll be on a plane for 17 hours with very little room, I need to find something to help me sit comfortably OR knock me out for the whole flight lol.

Any tips would really be appreciated!!!

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.

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.

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.

Who should I see about severe fatigue? My rheumatologist has done absolutely nothing for me in this aspect of things. I've been in the care of my rheumatologist for about two years and have brought up my worsening fatigue every time. I've already seen a sleep specialist and had a sleep study to rule out sleep apnea and other disorders. It's gotten to the point where I'm worried about losing my job because of how much I call out due to fatigue alone. I just don't know what to do.

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?

I breezed through the Muldowney Protocol's Lower Extremity Exercise Progression but the Neck, Mid Back And Upper Extremity Progression is soooo hard! Anyone else struggling here?

My question: Is the top level of each progression intended to be a "normal" person's baseline?

Are there any standards for what is considered a "normal" level of strength for things like TYI exercises, lateral raises, tricep pushdowns, etc. other than "train them until it stops hurting"? Having a goal makes it easier for me, psychologically speaking, to know that there is some kind of end point.

(X-posted in r/eds but didn't get any response so seeing if anyone here has experience with this they'd like to share)

*PLEASE ACTUALLY READ BEFORE JUMPING DOWN MY THROAT! k thanks! *

So ive been looking into pain relief. Ive asked about specifics in the past, like peptides etc, just for opinions and views, but in general, living in scotland with the NHS is actually a bit of a barrier to alternatives....

So currently im on opioids. They do nothing. Occasionally they ease things. But it is occasionally. Luckily im off work today, but everything is screaming. Im not sleeping. Im sweating bullets. Actually think I might be in perimenopause tbh, but whether thats relevant I dont know.

What I do know is I am so sick of this. The pain is worsening, and I know hormones can play a part in that. The flares are more often. Longer. More burning. And so im on a stupid number of tablets a day. I know people with chronic conditions who require medication to SURVIVE who are on less than me, and I just need it for relief!

My next step is morphine. Im not even 40. I do the physio. I do the strength exercises. I do the heat and cold, the support, the light stretches. I do everything im supposed to but my BONES are on fire. And the meds? Meh. I no longer want to scream i guess. But I want to rip all of my skin and muscles off and rub my bones. I want to do a silent hill movie, rip off my skin suit and stretch out all of my muscles to reduce how tight they are. Im not sleeping. The IBS is unbareable (try not going for 2 weeks then tell me your stomach hurts). Because although I managed to skip the major organs, my hearts good, my livers, kidneys, my gastro tract ain't so good. Who the hell has a hypermobile bowel?? Welp. Apparently me! So I dont even know i need to go until im already packed. And 2 weeks later, anything short of agent P (cookie if you know that reference!) Isn't gonna help...

So im looking at alternatives. THC, nettleroot, jesus I will smear my joints in warm pig sht if it'll help...

Mushrooms, magnesium, night time gummies with melatonin, please people I am on the verge of snapping because all I want to do i be able to lie here, on my day off, and not jiggle my joints and limbs like im seizing because that is genuinely the only comfort im getting! But even then, you do it too much you fatigue the joint and you end up sore again! 🫠

Im usually on here trying to support people. Help them with advice and whats worked for me in general. What bandages to use, how to do heat therapies, what exercises to avoid unless your physio says its ok, and how to treat flares... Ill ask questions out of curiosity, not desperation... but now I am well and truly desperate. I cant ask my husband to rub my legs 24/7. It actually feels like the worst type of growing pains!

Please just.... can anyone give me anything! Any info, any studies, any alternative meds, theories, tests just something... ive barely slept in 4 days (which i know isnt helping) but the meds knock me out then give me nightmares so im awake by 2am, but I dont take the meds and I dont even get those couple of hours because the pain wont quit...

I will try anything. If I thought taking a hacksaw to my legs would be a viable option I would but knowing me id be the one to get phantom pains because thats just my luck...

So please. Can someone give me anything thats worked for them? I dont expect a miracle cure, I dont expect a teaspoon of honey and a cup of miso soup to fix this. I just need some relief. Something to take the edge off. If you've done this through peri/menopause even better (im under 40 as above but... well let's just say ALL of the symptoms are there, and my nurse is fairly confident if im not there yet I will be in the next year or so).

I just want to sleep. Lie on the couch and not fatigue my legs by jiggling about which makes the pain last longer but it helps at the time... if I need to speak to the kid down the street and slip him a tenner 20+ years after I quit smoking i bloody will (not endorsing illegal activity mods! Just saying, I am that desperate!)

Please help me 😭

Hi friends, after a recent diagnosis and joining this community, I (28M) have experienced how helpful it is to have people around that can help with what I’m going through. Sadly, a lot of the research tends to lean toward women with EDS, which makes perfect sense given the majority of those who do get diagnosed are women.

As a guy, though, I’ve been having some trouble finding other men to talk to about EDS. Women have of course been extremely helpful, I would just love to hear about more experiences from guys like me.

I created a community, r/MenWithEhlersDanlos, for **anyone** to join and be a part of, almost as a sub-community of this one where people can go for posts and advice geared more toward men. It is not exclusive in any way, anyone is welcome to post, I just wanted to create the place I’d been seeking. I hope this is allowed, my intention is pure🫶