u/Island_Walker

So I have HSD (diagnosed 5 months ago) and my back has been an issue for me in one form or another since I was a teenager. Nowadays, my lower back becomes so stiff from sitting that in the morning I can't even bend down to get clothes out, I need to give myself an hour or so to loosen up, and then once I'm a bit looser, I have to do a stretching routine to stretch out and loosen my lower back if I want to be able sit down at my desk that day. It might feel okay for less than 30 minutes sitting, but after that I'll start to feel the discomfort, pain, and instability creeping back and I feel like I have to stretch it out again. But by the afternoon, I have to lay in bed because I just can't sit down any more. It's near impossible to get any meaningful amount of work done because I'm limited to maybe 4-5 hours of sitting throughout the day with loads of breaks and body adjustments within that time. I have a Herman Miller Mirra chair so it's not even like my chair is unergonomic, and it response well to my movement. I just don't know how to help this long term - like should I see an osteopath or a chiropractor? Or go to a medieval torture museum and asked to be put on the rack (ngl that actually sounds so good for my back)? But in all seriousness, I am quite terrified about damaging my spine and causing early osteoarhritis, especially based on how stiff I already feel in the mornings and after sitting down for less than half a working day - I'm only 28 and I already have no idea how I would work an office job. Any advice is appreciated! :)

I'm 28. I was diagnosed with HSD in February. Always had the clicky joints and locking knees and 'double joints' but coped for most of my life. Started a delivery job in 2025. Everything got way worse. Recently, I had what I thought was a flare up. Tried to push through, but having a subluxation in my knee whilst driving which left me shouting out in pain and barely able to focus on the road made me think maybe I should take a break instead of pushing through. I was signed off sick by my GP for 6 weeks. Every day since then I've been having super intensely painful subluxations, in my knees, ankles, fingers, and my ribs have been slipping damn near constantly. I can hardly function at the moment. Every day has brought something new, and pain that somehow beats the day before. I've had some painful moments throughout my life, but only 2 days ago had the worst pain I've EVER experienced in my entire life just from standing in the kitchen and unloading the dishwasher. And the fatigue, man the fatigue is brutalllll. I feel like after 4 weeks I can't even say this is a flare up, just the new normal.

It's the kind of job where you have to call in every day to update on your health/absence.
Every time I'm calling in to say 'yeah, I still can't really walk or drive at the moment' I can't help but feel guilty or like a fraud because, well, I've come this far in life without giving myself a break or letting my weird joints stop me. Even though after work I can barely walk back to my car. Even though I can barely climb the stairs when I get home. Even though if I've left something downstairs once I've actually conquered the stairs then too bad, downstairs it will have to stay til tomorrow. Even though I know working a semi manual job has caused me injuries that I wouldn't have had otherwise. Like, I guess I feel guilty because I don't feel like this is going to get better. I hope it does. But I'm literally springing out of my seat, yelping in pain, and crying, because my knee is subluxating whilst sitting. Literally not even moving, and it will be some of the most intense pain I've ever felt.

Sorry, I just needed to vent because I'm struggling with this a lot at the moment, accepting it as a reality is hard especially when it all got so bad so quickly, and it kinda feels like having imposter syndrome but not for anything fun or cool. At the time the diagnosis was like 'oh cool I guess theres a reason for my clicky knees' but now it is more of a 'oh fuck, i have this for life....'.

Hi there, hoping someone might be able to help me understand how to approach the mobility section of PIP a little bit better.

For context, I have hypermobility (HSD). I experience frequent misaligned joints, subluxations, pinched/out of place ligaments and tendons, muscle overuse, fatigue and spasms, chronic pain, joint instability, and whole host of other fun things that is having a significant impact on my ability to walk. I have these troubles every day, but it is not entirely predictable when they will occur, but it is guaranteed that they will.

So there are times throughout the day when I can't take more than a single step before my knee subluxates and causes really intense pain that can leave me crying, there are times when I can walk up to 20 metres before I experience really bad pain from misaligned knees/ankles which I have to stop to click back into place or immediately sit down, and there are times when I can walk further, albeit with frequent stops to click my loose joints and ligaments back into place before continuing. There are times when walking is just extremely painful full stop and my pace is noticeably slower, and then I am out of action for the rest of the day e.g. after a shift. But there are times that I get incredibly intense and severe pain even when sat down, that make me spring out of my seat and yelp in pain. There really is no way of predicting when it will happen and what distance I may have covered before it does.

I also can't even write about 'bad days and better days' at this point because bad days have just become baseline. It's more so, 'bad moments and better moments' nowadays.

I'm just not sure how to approach this. Because I do not want to be fraudulent and say no more than 1 metre, even though there are times every single day when that it is the case. I'm leaning more towards up to 20 metres because this does seem to be the case most frequently every day and I don't feel able to cover this distance reliably or consistently. In theory, 'it varies' would be the appropriate category, but I am wary of letting an assessor decide how far I can walk.

Any advice for a PIP newbie on this?

I was diagnosed with HSD in February so I'm not super familiar with all the fun quirks of having a hypermobile body so just seeking some advice.

So I woke up today and my right leg quadricep has been going CRAZY with spasms, kinda looks like theres a heart in my leg because it's pulsing so much. The previous 2 days I've had awful pain and sensations in my knee of the same leg - pain so bad that it's literally making me yelp out in pain whilst even being sat down. The pain is super sharp and very intense, walking is making me feel like my knee is twisting, and the sensation I'm getting is so weird, it's like my kneecap is being pried off - kind of like there is a fullness or tingling under my kneecap that is pushing it off/causing it to lift/move. It generally just feels super unstable, and I'm quite worried about even walking whilst it's like this. I'm guessing the spasming is because the muscle has been working overtime to hold things together whilst my knee is playing up like this (it's also never happened like this before, so I could be wrong).

I just don't really know what to do to help this, I'm currently awaiting a physio appointment so I can't even just go to my physio with this because I don't have one yet (NHS yay!). Does anyone have any suggestions?

So I'm 28 (M) and recently diagnosed with HSD, only 2 or 3 months ago. I've been getting worsening symptoms for the past year and a half which led to my diagnosis. But recently I've been deteriorating pretty rapidly and there are days when I can barely walk. I had to call in sick to work yesterday and wasn't exactly sure how to describe it except for 'I can't really walk because my joints are just slipping around'. Was just wondering if anyone can help me understand if what I am experiencing is what a subluxation feels like or not.

I am getting really bad pain in my knees. It can be a sudden sharp shooting pain, or a constant, duller, but still intense pain. I've always had issues of feeling like something has shifted out of place in my knees, and I have to flick my leg out to click it back into the right spot. But recently it has felt more like a real sense of misalignment, almost like something structural has shifted. I still have to click it back into place, but with every step I'm taking I can almost feel my knee joint wobbling(?) if that makes sense? And it's like a sharp pain under my knee cap. Also when this happens I don't have a full range of mobility in my knees, straightening it fully hurts badddd. I don't know how else to describe it, it's very weird, but it is really inhibiting my mobility at the moment. It's also happening whilst seated (happened whilst driving the other day which was a big womp) so I'm a bit worried about whats going on here, because I've never felt so consistently limited in walking until the past couple of weeks. I don't have a history of dislocations. So yeah, just curious subluxations can occur like this or not because I don't have a whole load of knowledge on the matter. Thanks!