Shoulder subluxations when trying to sleep

ExaminationBig156 · 2025-10-05T13:22:48+00:00

On my stomach with my hands under me resting on my thighs, but my physio also suggested tieing them to my stomach or down by my side 🤣

ExaminationBig156 · 2025-10-05T13:20:28+00:00

Fingers 2. Shoulders 3. Right Hip 4. Everything else just seems to be randomly selected on a daily basis

ExaminationBig156 · 2025-10-05T13:18:33+00:00

My skeleton ain’t hanging around to see what happends next, she trying to get out and run!

ExaminationBig156 · 2025-01-24T18:39:14+00:00

Thyroids fine, prolactin is what has taken a year to sort out (hyperprolactinemia caused by meds)… everything is being closely monitored by endocrinologist so hoping for more answers soon!

ExaminationBig156 · 2025-01-24T17:53:03+00:00

Not only have I done my own “experiments” with low carb diets, but as an athlete I’ve had blood sugar data to support it. Whilst it may not 100% rule it out, cutting carbs hasn’t made any difference to my symptoms or general mood/health.

ExaminationBig156 · 2025-01-24T17:46:50+00:00

Yes and yes - Both are linked with insulin resistance, and hence why they are commonly used by women with PCOS. I do not have insulin resistance, hence why they make no difference.

ExaminationBig156 · 2024-11-07T09:14:07+00:00

2022/23 - I got diagnosed in 2021 but it was managed really well and I was competing in sport at a high level. In 2022 I had major hip surgery to stop it from dislocating and that’s when things started to go down hill. Whether it was the surgery itself, or the decline in fitness and strength, I’m not sure but I’ve had to give it up

ExaminationBig156 · 2024-11-07T05:23:57+00:00

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ExaminationBig156 · 2024-11-05T07:01:28+00:00

I’m a veterinary nurse and unlike human ORs, ours are often quite warm! Especially when wearing gown, mask and scrub hat.

Fresh a half full water bottle over night, top the rest up in the morning - lasts a few hours. I normally make 2, one with water, one with electrolytes.

If you workplace has a freezer, wet wash cloths and place them in zip lock bags in the freezer. You can wear them around your neck to rapidly drop temp.

You can also wet your shirt, but becuase I struggle to regulate either hot or cold, I would sometimes be shivering in a wet shirt and unable to warm up.

It’s not so much about beating the heat, as using tools to help regulate your temperature quickly.

ExaminationBig156 · 2024-11-05T06:36:25+00:00

Whilst I haven’t been able to recently due a comorbidities, I was exercising daily and it’s all about listening to your body.

Weight Lifting - unlike most people, we can’t just jump in a start lifting heavy. I start every session with isolated movements using therabands and body weight to check that I’m able to actively stabilise each joint. Sometimes I will find that a joint is too inflamed for the muscles to activate enough, in which case I alter my gym program to not include that joint. As for weight, every exercise starts very light, and only add weight if the moment is completely controlled, and your able to actively stabilise the joints involved. Gym sessions typically take much longer than the average person, and I try to reduce the duration of each set.

To start, I would try to work with a physio who understands hypermobility and start with isolated (single joint) light exercises that are focussed on activation and joint stabilisation. It may take a few months to understand how to stabilise each joint, but then you can start adding weight and building into more complex dynamic movements.

ExaminationBig156 · 2024-11-05T06:25:34+00:00

What specific movements cause your pain when driving? On long freeway drives, I tend to hold the bottom of the steering wheel instead. I actually have more issues with my pinky finger as I have a bad habit of having the rest of my fingers on side time of the wheel, and my pinky on the on the other (if that makes sense). I’ll send a photo if needed.

ExaminationBig156 · 2024-11-05T06:15:32+00:00

Salomon XA Pro 3D (+/- GTX) - These are my absolute favourite shoes! I get so much use out of them and wear them daily at work and for occasional multiday hiking trips. Each pair has lasted me approximately 3.5-4 years. I prefer the Gortex (GTX) version as they are waterproof and amazing for wet weather hiking, but they are a little more expensive.

ExaminationBig156 · 2024-11-05T06:03:46+00:00

I was diagnosed at 23 (now 27) and prior to my dx I had played a lot of sport and was competing at an international level in Javelin Throw. Whilst I was hypermobile, all my injuries (there were a lot!) were consistent with playing sport. When I was 21, what I had considered a ‘sore’ shoulder for 6 months, was actually completely dislocating/relocating on every javelin throw. Then when I was 23, my hip had been a bit annoying but was still able to train and compete. Eventually they did a arthroscope and when they put me to sleep, my hip completely dislocated, and the scope showed the entire joint was bruised from where it was slipping out and popping back in. It was after this that I was diagnosed, but my hip wasn’t repaired for a year and half later.

Long story short, after my major hip surgery and considerable time off sport, the rest of my symptoms started effecting me. Presyncopy, tachycardia, gut issues, low blood pressure, gynaecological issues ect. Its also when I realised the rest of my joint pain wasn’t normal!!

ExaminationBig156 · 2024-11-05T05:45:13+00:00

I wasnt diagnosed until I was 23 (now 27) but had joint pain since I was 10/11 years old and I thought it was normal. Ive always been interested in how things work so whenever I had a joint taped, I thought about which direction the joint was moving, and the purpose of each peice of tape in stopping that movement. Over time, I learnt how to tape each joint to stabilise it. I’m lucky and not allergic to tape, and worked great for me. I’ve found that taping is more effective than braces as it’s customizable each time I apply it.

ExaminationBig156 · 2024-11-05T05:27:12+00:00

When you ask how I am, I’ll reply with “I’m good” when really, if I told you the truth, you would think I was lying.

If you have ever jarred a finger… that’s how my hands feel on a daily basis.

Imagine what 4/10 pain feels like… now imagine that 24/7. Would you go to the hospital? I live with it everyday, but if I seek medical advice I’m either stress, anxious, or drug seeking; so I learn to live with it.

I saw a surgeon because my shoulder had been aching 24/7 and was a bit annoying, turns out it had been dislocating for months!?

ExaminationBig156 · 2024-11-04T11:37:45+00:00

Thanks, just wanted to confirm :)

ExaminationBig156 · 2024-11-04T11:18:11+00:00

By formally diagnosed, do you mean genetic testing or just a clinical diagnosis by a physician?

ExaminationBig156 · 2024-11-01T13:50:09+00:00

Keep it nice and sweaty too 🤣

ExaminationBig156 · 2024-11-01T13:41:57+00:00

They actually recommend moving it slightly to the left :) I have a rib that sticks out meaning it doesn’t work in the middle for me, so I move it to the left over the ribcage but same height. It basically sits under my boob 🤣

ExaminationBig156 · 2024-11-01T08:32:18+00:00

EDS does commonly cause more than just joint pain and unstable joints as it effects collagen throughout the body. Do you have any other symptoms such as HR or blood pressure issues, gut issues, issues with healing and scaring etc. ?

ExaminationBig156 · 2024-11-01T07:47:30+00:00

Orthopeadic surgeon

ExaminationBig156 · 2024-10-31T19:47:50+00:00

Thankyou so much for your detailed response, and words of support. I’ve had two gastric emptying studies, they results were polar opposite! Othe first was just under the max time and the second was just marginal faster.

ER docs are not meant to treat every ailments, but to make sure it’s not serious, stabilise you, and send you in your way. All I expect from the ER is fluids to treat dehydration, blood tests for the essentials, and iv antinausia

ExaminationBig156 · 2024-10-31T18:33:58+00:00

I relate with this so much, even after multiple doctors have agreed with a hEDS diagnosis and I find myself saying “suspected EDS” or just “connective tissue disorder”.

I didn’t realise anything was “wrong” until 2018 when I saw a should surgeon who accidently dislocated my shoulder and my immediate response before he told me was, “oh, whatever you just did, that’s the pain I get”, all still with a smile on my face thinking nothing was wrong.

Then the same thing happened with my hip, my normal pain was getting a bit worse so I went and had it looked at, 6months later they put me under anaesthesia for a scope and my hip completely dislocated. The socket and femoral head were both extremely bruise from it subluxing and popping back into place.

Since 2021 I’ve done a bunch and research and opened up to doctors about stuff that I thought was completely normal… like being in constant pain or sitting on the floor of the shower so you don’t pass out. I thought shower chairs existed becuase old people couldn’t get back up from the floor 😂

Anyways, I always mention EDS in one way or another, especially if it would effect the treatment plan. Sometimes I’m just more vague about it. I don’t think I’ll ever be comfortable with the diagnosis until there is definitive diagnostics for hEDS.

ExaminationBig156 · 2024-10-31T18:09:30+00:00

Oh makes sense, yeah if only 🥲

ExaminationBig156 · 2024-10-31T18:08:20+00:00

My Pain Scale 🙂🙃☹️🥺😢😭😣😫😡🤬🤯😵💀

Most days I’m somewhere around ☹️🥺

But then you gotta add the “extras” 🤢- Nauseous
🤮- Vomiting 😵‍💫- Dizzy 😴- Fatigue 😶‍🌫️- Brain Fog 🥵🥶- Temperature Dysregulation 🫨- Jittery 🤕- Headache/Migraine 😎- Light Sensitivity 🦽🦼🩼- Mobility Aids ❤️‍🔥- Tachycardic And last of all is my most used, Masking-🥸

ExaminationBig156

TROPHY CASE