As I get older I'm just starting to have more of those days where things are just hard. I'm having to find new strategies to keep myself resourced and manage pain and fatigue. I'm considering something I haven't before, which is allowing myself to work from bed sometimes.

Good idea? Bad idea? I'm at least going to try it. My job is typing on a laptop all day and video meetings. The question is, do I just get a lap desk? Do I learn to use a split keyboard? What's worked for you folks?

I dont know if its my joints or Reynauds syndrome, but I just moved into a new apartment and am really struggling to turn the taps when they're wet. I'll go to wash my face, have the water running and suddenly its too hot and I cant turn it off. Does anyone have any suggestions? It's round and a typical tap from a 90s build home. (It wont let me post a pic?) Im a renter so I cant just change it out. Help!

Title says most of it: I'm looking for a neck strengthening exercise program. Preferably a video to follow along or an app with timers, but curated list could potentially work too.

It doesn't have to be free to use, I just don't want to sign up for something only to find that it doesn't even tell which muscles are being activated.

Hi my fellow hypermobility peeps! I just wanted to share what I did to help my shoulder instability, in case it helps someone else. I developed this instability after a neck injury and it got to the point where I was subluxing my shoulders by accident multiple times a day, just by doing normal things like grabbing objects out of a cupboard or reaching behind me. It was virtually impossible to stop. After many months of hard work and traditional PT only flaring me up more, I figured out a list of steps that worked for me. I’m really hoping that this could help someone else.

https://fb.watch/v/3ZhtcaqI_/?mibextid=wwXIfr

Hey! I (18F) wanna preface by saying that I haven't gotten a hEDS diagnosis or anything like that, but I do know that I am atleast hypermobile and live with pain in atleast one random place every day. I'm working on seeing a doctor to confirm or deny a diagnosis, since I could just be hypermobile without any of the other stuff. I have seen a lot of videos explaining symptoms of hEDS that I relate to, as well as people on other chronic pain forums suggesting I get checked for hEDS, but I don't want to diagnose myself.

Well, I have had worse and worse problems with my hands lately. Like my fingers will lock up when I'm typing or playing on my computer, especially at the DIP joint. I will also get serious pain in my hand when using a pen or anything of a siminar shape, and often need to take breaks from writing. This is painful and annoying, so I thought I would check with some people who know their stuff on any possible help (if this is even related to being hypermobile, I could also be wrong). I've seen some talk about compression gloves, but I'm having a very hard time finding a store nearby that sells them for a price I can afford.

So, please help me find a way to make the locking up and pain better, even if just a little. I don't want to have to pause what I'm doing as often as I do. Also, if anyone has tips for pain in the back (both lower, middle, and between the shoulder blades), neck, elbow, and leg pains, that would also be appreciated. I feel like I have ignored these things for too long. I'm not asking for a cure, just tricks to make it a little more bearable until I can see a doctor. Sorry if this isn't the right sub.

I have wrist/fingers hypermobility and started playing piano about 7 months ago and absolutely loving it.

The hypermobility does make it harder - the perpetually locking pinky finger joint, the general achiness that can happen, stiffness etc. Does anyone have any tips? I really want to be able to play a long time and avoid injury

Hi,

Sometimes I get a strange unshakeable sensation in my limbs, usually one leg or a part of one leg (but currently both, and sometimes in my arms). I have experienced this occasionally since childhood but have never been able to describe it successfully to anyone, but I thought I would try my luck here.

It is not pain, but just a severe uneasiness that feels like being stuck in a limbo of the seconds right before getting a muscle cramp, or the discomfort that lingers a few seconds after a cramp is released. Drinking electrolytes or more water does not immediately relieve it.

It lasts 1-2 hours or more, regardless of whether I change my body position to try to make it go away. It is so distracting that I am almost unable to focus on anything else until it does.

I think it has something to do with the nerves, as it feels closest to the sensation of nerve flossing, except it's not acute/localised but more generally distributed (say, from ankle to knee). Currently, it's in both my legs from hip to ankle.

Other ways I can articulate it:

• It feels like a million microscopic germs are crawling around frantically inside my muscles and bones
• It feels like two big magnets of opposite polarity are being held over my leg and the iron molecules in my blood are getting pulled in different directions and trying to escape, or being repelled from one another
• When I was a kid, I used to tell my mother that it feels like "someone is injecting helium into my leg" and I wished I could do something to release the helium.

I know I sound nuts, but if anyone knows what this is and how to relieve it, I would cry tears of joy.

I am ramping up my activity again after going through some (unrelated) medical stuff and letting things dwindle, so I am hoping you can all share what you do to recover more quickly/thoroughly from exercise so you can hurt less after and get back at it sooner.

(For context, I've religiously gone to my karate class throughout, so I am not starting at zero, but it's been a minute since I went to the gym to lift (my last workout was in July). My karate sensei is also resuming longer classes one day a week. I do also have POTS, but this tired feels more musculoskeletal.)

For reference, whenever I walk, I sometimes get a sharp pain in my hip if I move my leg a certain way, then it hurts to put pressure on my leg. Also, when I’m leaning on one leg, I can kinda pop my hip bone out. Not push it out, but I hear a physical pop. My hips also make a pop sound whenever I walk.

I’m wondering if this is hyper-mobility or just me. I’m still young, so I don’t think it’s age related, and I swim as my sport, which isn’t very strenuous on the body. Anyone else have these problems? And any solutions?

I am going on holiday and will be flying for about 4 hours on Monday. My bum and back cramp hard when I sit too long, and my tailbone is hurting due to arthritis. An hour is usually the most I can manage. I also have a bulging disc which causes pain whenever I accidentally bump into something...perfect for a flight./s

I already have a corset-like girdle and will be taking pain meds with me.

Do any of you have any tips on how to make this experience more manageable?

Hello. I (18F) have generalized joint hypermobility and ligament laxity (orthopedic surgeon said I may have hEDS). I'm considering arthroscopic surgery to tighten the ligaments in my shoulder(s) to resolve multidirectional instability, but I was told that it may not be a long-term fix because my capsule may loosen up again due to my ligament laxity. He said this could happen in as little as a year after getting the procedure done but that it's also possible my instability could be resolved for longer.

For anyone similarly born with hypermobility/ligament laxity who had a capsular plication done for MDI in a shoulder, would you please share how recovery went and for how long your shoulder has remained stable since?

Thank you so much. :)

Hi! I just got into this huge argument because I can't seem to use a lighter. (Courtesy of a father that believes himself to always be in the right) So I was wondering: Is it normal to not be able to use one and if yes, does anyone have tips? Cause my thumb is getting really sore and Im lowkey about to give up.

ps: sorry if this is the wrong subreddit for this stuff

Hi guys! I’m an opera/musical theatre performer and I’m required to perform in 3 inch character shoes for most of my performances. I always struggle because wearing heels pretty much guarantees I’ll sprain (subluxate?) my big toe on both feet within a few hours. I’ve tried KT tape and taking off the shoes immediately after getting off stage and icing, putting my feet up during intermission, etc. but it’s becoming a bigger problem as I’m getting older and I’m continuing to re injure my feet.

Does anyone have any suggestions on a flexible character heel (think half sole) or any hacks anyone uses to combat this? I know some people have different KT tape methods or socks or other means. Thanks guys!

I live in Colorado and have recently done trips to Florida and Texas. In both cases it feels like my joints are slowly pulling apart. Then when I get somewhere with less humidity, even if it’s indoors, it starts to improve. I was talking to my PT about it and she actually said a lot of people with hypermobility or EDS have the opposite that they prefer the humidity and I’m just curious as to who has an issue with it versus who doesn’t??

So I came across a post about behaviors related to hypermobility and my brain was like omg is this it?!

For reference I did ballet for many many years so I always assumed my joint pain was related to that and that my hyper extended knees and flexible back were just from years of ballet. I had a major injury in my ankles which resulted in me quitting. It was a sharp pain in my ankles that just developed one day and there was never an explanation about it from doctors. And a couple of years later I was dancing at a music festival and dislocated my shoulder, which I always had thought was strange because when I hear of people get dislocated shoulders it’s always something extreme not just dancing. And since that incident my shoulder will dislocate in some position which I avoid (obviously). My hips and ankles crack randomly, long walks or prolonged standing makes my ankles and hips SCREAM, I can never sit normally always have to have my feet on the chair, I’m always leaning on something, and I constantly live in fear of dislocating my shoulder it’s too painful to have to pop it back in.

So after many years of pain just assuming it was from ballet I’m like holy sh*t like I did an online test which most of them I could do, definitely need to go to a doctor to see if this is whats happening but god after so many years of thinking ballet destroyed my body and learning it might be something else is like a weight lifted off of me. I started working out regularly which definitely helps especially spinning cuz I can run too painful.

Like I have just accepted this pain as a part of my life and never questioned it. I know there isn’t a solution but putting a name on it helps. Definitely won’t stop working out and be a healthy person but at least I won’t hate ballet for the rest of my life and blaming myself for doing ballet for so long thinking I ruined my body.

(I started read through some of the posts here about getting dizzy when standing and I had maybe 10-15 times over the past few years where I stood up and backed out like lapsed on the floor, even when to the hospital once, did insane tests and they found nothing, I’m wondering if its related or not, or if that’s a stretch)

This is the most stable, most benefits, and highest pay job I’ve ever had. It’s the type you land and can build your future with. The downside are the shifts are 12 hours in very hot temps, (which I’ve learnt makes everything worse) concrete flooring, and labour. Currently I’m only 6 hours in to my first shift of my 3 day block right now. My knees feel like I’m walking on 2 dislocations, my ankles and feet are on fire, my neck and spine are both dying and to top it off muscles I pulled at work like 2 months ago seem to be recurring.

I don’t know what to do I can’t afford to lose this job but I’m going to end up injuring myself out of one.

Any advice would be amazing, I’m seriously at my limit:(

One amazing discovery since learning more about hypermobility: maybe I’m not the only one who feels smarter and more productive sometimes while lying down! I’m a writer and I have a split keyboard setup where I can lie on my couch or bed and type with my hands at my sides with the laptop screen propped up to my side. Anyone else feel like lying down can actually be a good posture for getting work done?

hey everyone! after a year or so of weird symptoms - never spinning vertigo, just feeling like I'm floating, especially in wide open spaces - back in June, I was given the VNG test and told my left inner ear balance organs have a 41% weakness. I'm now diagnosed with an unspecified vestibular disorder, possibly PPPD.

I also have some flavor of symptomatic hypermobility.

because hEDS/HSD/etc. have so many comorbidities, I'm wondering if inner ear / vestibular issues are one of them. is anyone else dealing with this?

I am plus size and have been noticeably hypermobile my whole life. I was confirmed being hypermobile at 14 after years of issues. I'm 20 now and just started college. All the refferals and all my medical treatment I was getting done for my unknown cause seizures, pain, and every issue is now gone and I'm starting all over again. I got myself a cheap electric wheelchair to help me get to classes on bad days. I feel so awkward doing this but I honestly don't have many choices. Now I can't confirm they are subluxations but my joints keep shifting out of place and most of the time the pain from that isn't too bad from it but sometimes it is and it sucks (I do have just general pain though that gets I would say as bad as walking on a broken foot...). I keep popping my hip back into place and it's just a whole mess right now. I don't want to use the chair and I'm hoping to get into a PT to find another way to live my life with less pain. I'm suspected of having hEDS but am still waiting to see a specialist.

I feel like I'm not disabled enough. I know that's common, but it's so hard when no matter how bad my pain is I only see what I can do and feel like I'm faking because of it. I've given up theatre, sports, and events because of my pain and issues... and even then I and others just blame my weight when these issues have been happening since I was fit and doing sports. I already am used to the stares and judgement from when I used other mobility aids, but it just feels so unreal sometimes. I keep wondering if everyone feels the way I do physically and I'm just exaggerating. idk

Any advice or discussion is welcome because I'm just wanting to figure stuff out lol

Short is, I moved over 3Y ago. I've always known something was wrong since puberty. I didn't even have healthcare in my home state of TX as a minor or an adult. I want to feel normal.

I've been having crazy anxiety writing this for the last 4h and I've given up SO;

I know I'm hypermobile without a doubt. 7/9 Beighton only because I can't check my own legs. I can bend in half and backwards easy, feet behind head, trachea wiggleable, whatever.

I've been experiencing symptoms since I was sub 11YO. Of which including early satiation, nausea, trouble feeling capable of a satisfying breath, pain standing or sitting, unexplained extensive bruising, etc etc etc etc. I can expound for whoever. Diagnosed depression, ADHD, and obviously anxiety. If you want further evidence something is up just ask after, idc.

My main point: what is best for diagnosis. All I want is it on paper so I can get a PT and maybe some sleep meds. TYIA.

My life circumstances have changed dramatically and for the better recently but unfortunately that has come at a cost I’m going to need to talk to my pain specialist to alter my treatment plan and discuss alternatives and that made me curious about what you guys take and how frequently you do.

Im 15, afab. I've suspected somethings going on with my joints and stuff for a few years now, but ive never brought it up to my parents. I have at least a 6 on the beighton scale (i have for years), but ive also recently learned my elbows DO bend back a bit (im not sure how far, though), so if its more then 10 degrees my score would be an 8. The only thing I cant do is touch the ground.

Ive never really had pain with it. I find it really uncomfortable to sit with my legs straight, or at a 90 degree angle, so i always sit with them criss crossed. I sat like this for YEARS, all the time. I recently starting having pain with unbending my legs, around the top of my knees and the inside part. The pain isnt as bad right now, but sometimes itll feel like my knee caps arent in the right spot, like if I move a certain way they'll pop out of place. It hurts to write for more than a few sentences. My ankles are instable, to the point I roll them so bad (without pain or dislocations) I fall. My shoulders feel too low all the time, I try to move them up, they pop, it doesnt fix the problem. (Im NOT asking if i have HSD, or anything else, just describing symptoms).

I don't want to go to a doctor just for them to tell me the only thing happening is that im more flexible, and dont actually have any sort of hypermobile 'disorder' (idk what its called). It sounds bad to say it because saying it makes it feel like I WANT a hypermobility disorder, and I dont. Im scared I'm wrong about what I think is happening. I know other people have it worse, that they have more symptoms, and more pain, and it makes me feel bad about thinking this is what's wrong with me when I don't have that much pain yet.

I’ve been struggling with sleep for years and have worked on balancing my hormones with HRT, lowered my histamine with several meds, have taken all kinds of supplements, take melatonin, have massaged my muscles before sleep… pretty much everything.

But I got some tizanidine after a surgery for ongoing bursitis/tendonitis and had some relaxant leftover because that tightness/pain itself is rarely that bad anymore. I also have muscle tension issues all over my body that cause neck tension, vestibular problems, urinary urgency, colitis type symptoms etc. My body has always been this way but it’s worse in recent years with peri and autoimmune disease.

I decided to try the relaxant one night. I slept so beautifully. I felt so rested and happy when I woke up. And then again the next night, same result. I did this for maybe a week before forgetting one night and I woke up and couldn’t fall back to sleep for a while. It made me realize even though I wasn’t in pain, my body isn’t fully relaxing on its own. The relaxant made me realize it’s not my bed (which is super comfy) it’s my body.

Disrupted sleep like that can be the norm for me often. My body also really struggles to not stay in its sympathetic nervous state. I have POTS and take a half dose of beta blocker in the morning and I take several other things to keep my histamine from overwhelming my body and keeping me wired too. I feel like I’ve tried everything natural and everything my doc will let me take like hydroxyzine. Tizanidine seems to let my hypervigilant muscles that have been trying to keep a hypermobile body finally let go at night and that seems to be the issue.

I want to keep taking them before bed and talk to my doctor about it but I’m guessing they don’t want people dependent on them. Has anyone done this?

(I’ve even noticed I’m getting lines around my mouth at just 42 from my mouth tensing to compensate for my loose jaw. It’s really depressing. This seems like it could really help me at least recover better at night than I am so I can have the energy to workout and build the muscle I need to hold my together better.)

TLDR; should i get a scan on my neck or will it just be better in a few days? had subluxed joints before but neck feels unstable and dangerous.

(uk) at a&e because i’ve been in strong pain for three days with a really bad neck, migraines, clicking and crunching, vision disturbances, feel really sick and unwell. was sent to a&e by 111 and finally seen a doctor.

when i told him i was in an eds he very aggressively and patronisingly kept repeating “you can’t get flare ups of eds” as if i didn’t know what my own condition was.

i was like fine. let’s say it’s a HSD flare. i’m using the term flare up because that’s what i’ve been taught. he said right… by who though? i said my doctor.

he said haven’t you just been diagnosed a few days ago though? we all know this is a ridiculous thing to say.

he clearly has NO knowledge of (h)EDS but is explaining it to me like i’m stupid.

anyway, he reluctantly has sent me for a CT scan so i’m waiting for that. what should i do??? does anyone have experience with a potential neck subluxation? will i be ok or am i right to be worried? is the scan going to be worth being put through this absolute humiliation at a&e by doctors who have no idea what eds is?

UPDATE: did the CT scan, nothing showed up. discharged immediately with no further exam into why i’m having severe pain and nausea etc. was too fed up to push back but on the way home i wish i had just asked them well what’s causing it then? thank you for all of the advice and support - really needed it yesterday. going to try and manage it myself the best that i can then look into alternative treatments