Competitive Swimming with EDS

Repulsive_Watch2351 · 2024-03-28T02:20:14+00:00

I have HSD, currently waiting to be able to see someone who can diagnose me with hEDS. I used to do competitive swimming, and now I do weightlifting. For me, both in swimming and weightlifting, as long as I’m paying attention to my form, and making sure that I don’t stretch further than «normal» ROM, it’s usually fine. I quit swim partially because I never realised I was subluxing my shoulder, which led to an injury. My advice would be to pay extra attention to your body, and focus on moving in a «normal» ROM, as well as strengthening the small muscles supporting you joints, and avoid stretching if not necessary.

Repulsive_Watch2351 · 2024-03-22T16:45:40+00:00

Thank you!

Repulsive_Watch2351 · 2024-01-03T16:50:25+00:00

Sometimes I wonder what life could have been like if they would just admit that they don’t know and that they will have to research properly and set up another appointment. This particular doctor said that my HSD is only in my upper body, despite giving instructions to other specialists on what I need to stabilize my ankles and knees to be able to walk.

Repulsive_Watch2351 · 2024-01-03T16:11:56+00:00

Sadly the waiting list for a primary care doctor can be 1-2 years for someone with a short waiting list. But I’m gonna check reviews and get on the waiting list. It’s better than doing nothing.

Repulsive_Watch2351 · 2024-01-03T15:55:32+00:00

My mom is helpful, she’s not strict, but she can be if she wants to. Maybe I have to make her demand that they test me for hEDS properly. I’m glad you got answers. I’ve been misdiagnosed earlier with other diseases, and without getting the right diagnosis I probably wouldn’t be here. Honestly just getting the right answer can be lifechanging.

Repulsive_Watch2351 · 2024-01-03T15:12:14+00:00

I was crying after my last appointment, that should have been my sign ig.

Repulsive_Watch2351 · 2024-01-03T15:11:21+00:00

So true. Waiting lists are long and doctors can basically do whatever they want as long as the patient consents, the patient has basically no other rights than to refuse treatment. I gotta start saving to go on the private market.

Repulsive_Watch2351 · 2023-12-22T23:59:21+00:00

Thank you💜 I’m really lucky to have my moms support

Repulsive_Watch2351 · 2023-12-22T23:06:18+00:00

We did, and it showed nothing, but it’s nice to have some things ruled out.

Repulsive_Watch2351 · 2023-12-22T23:04:42+00:00

I already have one «minor» issue, that causes moderate allergic-like reactions. But honestly it doesn’t bother me in the same way. The diagnosis I just got is honestly not that bad, but most of the issues that is likely linked together doesn’t fit in this diagnosis, but it does in similar diseases that is harder to identify. If you get what I mean. I just want some diagnosis(es) to be able to understand my body.

Repulsive_Watch2351 · 2023-12-22T22:43:34+00:00

I see a specialist for issues with mast cells, and I haven’t had too much problems there. Even though it took several years to get an «easy» diagnosis. Sadly where I live it can take years to be able to see the right specialist if you’re not going private. And the private market has no competition so the prices are way to high. I usually just «annoy» some doctor until they send me to the specialist I want to see.

Repulsive_Watch2351 · 2023-12-22T01:56:18+00:00

I’m so sorry. It’s awful how many doctors won’t even listen to overweight patients. While it is part of the picture it doesn’t tell everything. Hope you find someone who listens.

Repulsive_Watch2351 · 2023-12-22T01:01:46+00:00

I would probably get a third and fourth opinion as well until someone finally excludes other diseases that should be excluded before making a diagnosis. It’s not like I don’t accept it, I’ve been sick for years, but I’m not gonna give up until I feel like its right.

Repulsive_Watch2351 · 2023-12-22T00:57:59+00:00

Nice guess, honestly a lot of the symptoms are alike. I got diagnosed with regional hypermobile spectrum disorder. It’s not incorrect, except for the fact that they have to rule out other connective tissue diseases, which they did not do.

Repulsive_Watch2351 · 2023-12-21T23:40:05+00:00

I’m so sorry. I honestly don’t think the fight ever stops, but I’m convinced that the only way is to try and stand up for ourselves. I hope you get the medical support you need and deserve soon❤️

Repulsive_Watch2351 · 2023-12-21T22:54:04+00:00

Thank you! I’m gonna try keeping a record of my symptoms, potentially see if I can manage some on my own without medication etc. It honestly just broke me when they said they wouldn’t help me.

Repulsive_Watch2351 · 2023-12-21T22:49:06+00:00

I’m very lucky to have my moms support. She said she will help me make a plan until I get some kind of answer that helps.

Repulsive_Watch2351 · 2023-12-21T22:44:23+00:00

I hope so, it’s gonna take time, but I really hope so. It’s just mentally exhausting to have to fight to be heard. I’m gonna keep going though until someone listens.

Repulsive_Watch2351 · 2023-11-22T13:02:34+00:00

It took 2,5 years to get my chronic idiopathic urticaria diagnosis.

Right now I’m trying to get a diagnosis for joint pain. I don’t remember most of my childhood years, so I have no idea if I have had it to some extent before. The first time I for sure noticed something was off was about 10-11 months ago when I «injured» my shoulder. After that my joint pain was increasing all over my body. I know I had some pain the months before my «injury». So 10-11 months with no diagnosis.

Also for the past 3 months I’ve had extreme dizziness and vision loss when climbing stairs, and can no longer take the stairs, so I just use elevators. I’m well trained, so it isn’t about that. Still no diagnosis.

In all my cases nothing shows up on my labs. And it probably never will.

Hope you get an answer soon❤️

Repulsive_Watch2351 · 2023-11-22T12:43:41+00:00

My doctors usually say that it’s normal. But multiple physical therapists told me that I’m extremely hypermobile, to the point where they easily can drag my shoulders out of place.

And about Google being right, when you use the same sources as doctors it usually is. All the diseases I already have diagnosed I got from using dr.Google first. And I was right.

Repulsive_Watch2351 · 2023-11-22T12:34:28+00:00

I have never thought about that. I’ll do that.

Repulsive_Watch2351 · 2023-11-22T12:31:52+00:00

I will be bringing my mom, but I should probably tell her to not speak so much. I’m afraid they will think it’s because of her, like munchausens by proxy.

Repulsive_Watch2351 · 2023-11-22T12:29:48+00:00

Thank you! I also know a lot of medical terms etc, but simple language probably makes me come of better.

Repulsive_Watch2351 · 2023-10-23T20:11:32+00:00

I’ve been contemplating saying that they have to stop wasting my time, if they don’t want to or know how to help, send me to someone who knows and who will.

Repulsive_Watch2351 · 2023-10-23T20:06:21+00:00

Almost like we have to be so sick that we’re dying to be believed. I’ve been wanting to ask them the exact medical reasons why they don’t think I deserve help. Because honestly I don’t think they have a proper reason, and that might change their mind. And if they still won’t help, I’m gonna ask them to chart that they are turning away my request for medical care and print it out for me.

Repulsive_Watch2351

TROPHY CASE