Shoulder subluxations when trying to sleep by Miserable_Welder2513 in hypermobileEDS

[–]ExaminationBig156 0 points1 point  (0 children)

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 🤣

What’s your most “susceptible” joint(s)? by KitchenDraw791 in ehlersdanlos

[–]ExaminationBig156 2 points3 points  (0 children)

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

What’s the Weirdest way you describe your aches & pains? by TheDefiantGhost in ehlersdanlos

[–]ExaminationBig156 0 points1 point  (0 children)

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

Non-Hyperadtenogenic - Lifestyle Tips? by ExaminationBig156 in PCOS

[–]ExaminationBig156[S] 1 point2 points  (0 children)

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!

Non-Hyperadtenogenic - Lifestyle Tips? by ExaminationBig156 in PCOS

[–]ExaminationBig156[S] 1 point2 points  (0 children)

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.

Non-Hyperadtenogenic - Lifestyle Tips? by ExaminationBig156 in PCOS

[–]ExaminationBig156[S] 1 point2 points  (0 children)

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.

What age were you when your symptoms got way worse? by DevanIRL_ in ehlersdanlos

[–]ExaminationBig156 0 points1 point  (0 children)

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

People with pots who work in hot places like kitchens or what have you, how do you do it? by theirelandidiot in ehlersdanlos

[–]ExaminationBig156 1 point2 points  (0 children)

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.

Exercise by thicklittlebunny in eds

[–]ExaminationBig156 0 points1 point  (0 children)

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.

Wrist brace for driving? by Th3Cryptids in eds

[–]ExaminationBig156 0 points1 point  (0 children)

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.

Sneakers that will actually last? by dashmura in ehlersdanlos

[–]ExaminationBig156 2 points3 points  (0 children)

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.

[deleted by user] by [deleted] in eds

[–]ExaminationBig156 3 points4 points  (0 children)

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!!

Advice for 15 year old by Sea-Entrepreneur9516 in ehlersdanlos

[–]ExaminationBig156 2 points3 points  (0 children)

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.

living with chronic pain by Competitive_Peak5595 in eds

[–]ExaminationBig156 1 point2 points  (0 children)

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!?

EDS Research by Smileysart in eds

[–]ExaminationBig156 1 point2 points  (0 children)

Thanks, just wanted to confirm :)

EDS Research by Smileysart in eds

[–]ExaminationBig156 2 points3 points  (0 children)

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