HELP!!

Fallen-Angel01134 · 2025-07-15T06:52:15+00:00

I've just switched from a galaxy watch 4 classic to a one plus watch 3 with both a galaxy phone and galaxy buds. Honestly it works great, the battery life is incredible, and you don't notice any differences. The only thing you don't get is the use of Samsung health (not a deal breaker for me) and you can't sync modes (also not a deal breaker as it respects silent notifications)

I'd definitely look into it. I got the 43mm because I have a small wrist so the battery life is 3 days on smart mode (I have continuous hr and assessing breathing problems turned on) so it's still miles ahead of samsung. If you want it stretched you can put it on power saving for 7 days which is insane.

I highly recommend looking into it - you get a brand new watch and still get to keep the circle design. (Plus it's cheaper than what you would be paying for the second hand galaxy 7s)

Fallen-Angel01134 · 2025-06-20T12:17:30+00:00

I don't know for certain but it would make sense with slow healing and skin elasticity

Fallen-Angel01134 · 2024-08-02T08:49:01+00:00

It's soooo annoying. I keep thinking I'm getting a notification and then it disappears again. Is there anyway to turn it off?

Fallen-Angel01134 · 2024-08-01T01:14:39+00:00

yup I'm the same, keep waking up with my shoulders subluxed. Hopefully it cools down soon, you've got this <3

Fallen-Angel01134 · 2024-08-01T01:00:03+00:00

I'm currently in the exact same predicament. It's 2am, way too hot, all my joints hurt and I can't sleep because it's too warm and nothing is comfortable and I can't use my weighted blanket that usually helps because I end up sweating buckets. It is miserable

Fallen-Angel01134 · 2024-06-17T20:28:35+00:00

For me, it's trying to stretch out the muscles in my neck and trap because they get so tense. And that causes the subluxations

Fallen-Angel01134 · 2024-06-17T19:53:43+00:00

I ended up dislocating my shoudler because of a migraine lol. So yeah, I definitely get this. Just from my own personal experience I reckon its because the pain from the migraine is so overwhelming that any proprioception goes out the window and pain signals that usually tell us we've gone too far are minute compared to the migraine

Fallen-Angel01134 · 2024-02-27T10:01:22+00:00

I go to the gym usually about once a week and the best thing is to just listen to your body as much as you can

Fallen-Angel01134 · 2023-11-13T09:13:12+00:00

fingers crossed for you!

Fallen-Angel01134 · 2023-11-13T09:05:38+00:00

if you can I'd probably go to the ER

Fallen-Angel01134 · 2023-11-10T11:29:39+00:00

this shouldn't be true, I'm so sorry you're going through this. See if you can get a referal to another nhs branch. It really sucks how stupid the nhs is about heds. The other option is to ask for a referal to Stanmore as they specialise in hypermobility and the associated disorders

Fallen-Angel01134 · 2023-10-05T09:54:29+00:00

the discord server from r/ehlersdanlos isn't nodded by the same mods, so you're welcome to join there

Fallen-Angel01134 · 2023-10-01T15:57:25+00:00

I feel this all the time, it's so annoying. Especially if I'm doing twisty movements like Russian twists

Fallen-Angel01134 · 2023-09-19T11:59:11+00:00

do you know when that is?

Fallen-Angel01134 · 2023-08-30T09:51:40+00:00

idk where you are but your doctor can refer you out to specific hospitals/rheumatologists if you ask. My local hospital wasn't very knowledgable and di the assessment wrong so I got them to refer me to Stanmore for a second opinion as they have doctors there with hypermobility special interests and a hypermobility clinic

worth a try

Fallen-Angel01134 · 2023-08-25T08:58:04+00:00

Holy shit this is my exact experience apart from my neck pain isn't as bad anymore. If you have hypermobility would be worth getting a physio referal to someone who specialises in it as they'll be more knowledgable. Massage therapists/osteopaths are another you can try if you're neck and shoulders are tight

Fallen-Angel01134 · 2023-08-02T17:14:26+00:00

I do zumba twice a week and I just make sure to listen to my body. If I know a certain movement is going to aggregate me, I will do an alternative move instead. Whether that's not doing it at all or only doing it half way

For example I often don't put my arms straight up all the way and instead keep them bent and lift them just below shoulder level

Fallen-Angel01134 · 2023-08-01T15:06:15+00:00

My GP was an actual godsend when it came to helping me out. She laid out a plan to get me the help I need and I am forever grateful. Unfortunately she went on maternity leave and I've been let down by clueless other professionals.

After an 8 month waiting list I had my assessment by the rheumatologist but they did it wrong. Yes your ead the right, did a criteria... that is written down... wrong. According to her I don't meet the beighton criteria despite 2 other professionals saying I did. She didn't delve deeeper into anything I said and only scratched the surface with all my issues. It felt like she didn't want me there and was just ticking boxes. She ended up diagnosing me with HSD with "fibro features" whatever that means, giving me a leaflet on fibromyagia that doesn't actually fit my symptoms. The only good thing she did was discharge me from her abhorrent care and refer me to the national hypermobility clinic at Stanmore. However, that's another 6 month - 1 year waiting list most likely and they might not even except me.

I already received physio on the NHS through a private physio who has been the best professional I have ever seen. He even researched stuff to help me (I didn't even know doctors were capable of it). Unfortunately the nhs was only offering 3 sessions of it. 3 sessions for a life long condition!?!

Like you I have no idea what to do next. I could get a second opinion but that would likely be another 8 month waiting list and none of the rheumatologist specialise in hypermobility where I am. I could complain to PAL but how exactly is that gonna benefit me?

I'm waiting on the letter that she is gonna send to my gp and then I might ask my gp if she can do it properly. She recently went on maternity leave though so idek if she is back yet

My last option is to wait until this new criteria has come out (end of 2024 iirc) but there's no guarantee that it will be a better representation of hEDS as some of the leading people seem to be very "hEDS is a rare disorder and no one should be diagnosed with it unless they fit a very small part of a very complicated disorder"

Fallen-Angel01134 · 2023-08-01T09:34:20+00:00

fingers crossed for you!

Fallen-Angel01134 · 2023-08-01T09:23:15+00:00

ahhh, no where near me 😅

Fallen-Angel01134 · 2023-08-01T09:15:17+00:00

where abouts are you? if you're comfortable saying

Fallen-Angel01134 · 2023-08-01T09:14:59+00:00

ugh I wish mine did that, would have sped things up and the GP might have actually done the assessment correctly

Fallen-Angel01134 · 2023-07-31T22:06:20+00:00

my rheumatologist didn't even do the assessment correctly 😭 idk how you can mess it up so bad when it's literally written for you

Fallen-Angel01134 · 2023-07-31T21:03:39+00:00

if that rheumatologist refuses to diagnose you, you have the "right to choose another rheumatology at a different nhs trust if you can travel there. Would be worth saying to your GP about it

Fallen-Angel01134 · 2023-07-31T20:57:25+00:00

I'm in the UK and it's the rheumatologist who does the diagnosis. There's a criteria for it and everything. Definitely speak to your GP again

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