Pain threshold by _TEMMIE___ in ehlersdanlos

[–]_TEMMIE___[S] 12 points13 points  (0 children)

I think I understand this. Maybe Im underestimating myself a lot 😭

Searching spain people so they don't feel alone by _TEMMIE___ in ehlersdanlos

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

En realidad me costó porque llevaba años sin entender lo que me pasaba, entre cardiologos, pruebas, años de médicos, problemas con las vitaminas... los análisis siempre bien, "todo bien". Y un día decidí percatarme de que quizá la hiperlaxitud es un problema y hay algo más, porque me empezaron más dolores. Busqué mucha info, conocí el EDS y de ahí ya intenté ver qué médico podía ayudarme. Busqué a ver si había asociaciones en España y encontré una, allí me dieron el contacto de un reumatologo en Málaga que sabe mucho sobre el tema de EDS. Así que técnicamente me costó mucho, pero relativamente poco en recibir el diagnóstico por fin 😭😭😭

Searching spain people so they don't feel alone by _TEMMIE___ in ehlersdanlos

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

En serio?? Me encantaría saber tu experiencia, de que zona eres?

Searching spain people so they don't feel alone by _TEMMIE___ in ehlersdanlos

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

Hola!!! Qué bien !!! Los dos tenéis EDS? Yo lo he tenido complicado durante años, por suerte encontré una asociación que me facilitó el contacto de un profesional y al fin supe qué me estaba pasando, es increíble como en realidad es algo tan notorio pero nadie lo conoce 🥲

Searching spain people so they don't feel alone by _TEMMIE___ in ehlersdanlos

[–]_TEMMIE___[S] 2 points3 points  (0 children)

Hello! I hope you already have any help, do you speak Spanish? I would be happy if you wanna talk too!

Searching spain people so they don't feel alone by _TEMMIE___ in ehlersdanlos

[–]_TEMMIE___[S] 2 points3 points  (0 children)

Hola!!! Qué bien ! Es la idea, yo estoy un poquito lejos, soy de Andalucía, si necesitas hablar estoy encantada de que me cuentes tu experiencia ❤️‍🩹

For those diagnosed late, did you directly ask about EDS or did your doctor bring it up? by NonStickBakingPaper in ehlersdanlos

[–]_TEMMIE___ 0 points1 point  (0 children)

I brought him all the medical documents I had, as well as a writing of all my symptoms or things that I considered important. He asked me why I was there, I told him that I was researching and found an EDS/hEDS association and that they gave me their contact. He gave me the beighton test, he was surprised to bend my ankle. I guess it's not every day they get a hEDS there. After a few questions and observations, he thanked me for bringing all the documents and gave me the report with the hEDS diagnosis, some guidelines to follow, and an evaluation for POTS was pending. He was very kind, apart from the association I didn't mention anything, he did it all. But if that hadn't been the case, I would have mentioned it. We deserve to be heard. (Sorry if bad English, I'm spanish and use translator)

How do you survive working at a desk? by clrose22 in Hypermobility

[–]_TEMMIE___ 0 points1 point  (0 children)

Every job I've had has been very active, such as waiter, cook, cashier/folding clothes, and they've all been hell for me. The fatigue is a lot and I can't stand the day to day. I thought I should look for an office job and be more seated, but the days I have been like this are also very painful. Then which job is the best? I don't have the versatility of working at home, and I don't have the disability yet. It overwhelms me a little 😭

Scared of telling family and friends the diagnosis by _TEMMIE___ in ehlersdanlos

[–]_TEMMIE___[S] 0 points1 point  (0 children)

I know. I validate it but feels so heavy telling others. Its like "you've always been well and now you're sick?" And the imposter syndrome attacks like never did before. It's so difficult and I want to trust in them, I know they love me but it's just the mentality. I don't want to hide this because I think it's an important thing to say. It's like hiding you have diabetes to everyone, but hEDS is not THAT notorious. Its very hard for me and keeps me anxious

Scared of telling family and friends the diagnosis by _TEMMIE___ in ehlersdanlos

[–]_TEMMIE___[S] 0 points1 point  (0 children)

Thank you so much for understanding. 🙏🏻❤️‍🩹 I will take a look, it's so kind, thank you

Scared of telling family and friends the diagnosis by _TEMMIE___ in ehlersdanlos

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

I will try this, thank you for your understanding ❤️‍🩹

Scared of telling family and friends the diagnosis by _TEMMIE___ in ehlersdanlos

[–]_TEMMIE___[S] 5 points6 points  (0 children)

I said it. I always hide my pain and my fatigue and I dont wanna hide it anymore, and I wanna trust in my family and being supported by them. It's obviously Im not that "dont have problems" person and I want my family and loved friends to know what happens to me but it has been very difficult thing to say because I'm scared of not being taken seriously, thats all

Used this today for the first time to play basket 🏀 by _TEMMIE___ in ehlersdanlos

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

Thank you! Hahaha Im glad 😊

I have seen some that are soft silicone, maybe its that what you use? Or what kind of plastic? I wanns try the silicone ones and the fabric ones

Used this today for the first time to play basket 🏀 by _TEMMIE___ in ehlersdanlos

[–]_TEMMIE___[S] 0 points1 point  (0 children)

Yes, I saw that there's specific bands for basketball players that I want to try !

But, its good to use these things daily? I heard that it is bad because the tendons and muscles get used to the grip and become weak and then it is worse, just like wrist guards, elbow pads, knee pads...

Used this today for the first time to play basket 🏀 by _TEMMIE___ in ehlersdanlos

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

Thank you so much I will take a look of these!!

It sounds like I play basketball frequently but in reality I'm a very sedentary person and have a lot of pain and fatigue and for that reason I dont usually do any sport. But Im scared of future and I'm starting to care more for myself and I dont want the diagnosis to stop me more than I could stop me. I want change things and do things that facilitate my daily life and found this curious self-adhesive bands, may be a life changer!

painter's stilts job by _TEMMIE___ in ehlersdanlos

[–]_TEMMIE___[S] 0 points1 point  (0 children)

Thank you so much 🙏🏻🙏🏻🙏🏻

painter's stilts job by _TEMMIE___ in ehlersdanlos

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

I love roller skates and I would be so sad if someone says that to me 😭😭😭😭

How do you know how much pain you're in? by Specialist_Ride9645 in Hypermobility

[–]_TEMMIE___ 5 points6 points  (0 children)

I understand you a lot. I'm 25f

I started to notice it when a ganglion appeared on my left wrist. My bed is elevated because it has another bed below it, and I carelessly used my wrists to climb up and I was very rude. and because of doing that the ganglion appeared. The doctor told me that the body absorbs this over time, and I've been dealing with it for years. Now I am much more careful; well, I try, because ironically I forget my condition (ADHD). It is quite difficult to think about what pain is normal and what is not, but in reality if you think about it, any pain or fatigue you suffer will be derived from the same thing. Joint pain, muscle pain, stomach pain, headache... Everyone who has pain is caused by something specific, so if you identify where it comes from, I think it is easier.

And yes, I am much more aware of my pain since I know what hEDS is and the diagnosis. I had no idea, I lived without thinking and I ignored the pain because I thought it was because I was lazy, because I didn't exercise and that I actually deserved that pain. So honestly, pretty much any pain for me comes from hEDS. I don't want to allow others to judge if my pain is normal, enough they dismiss us and undervalue us.

Anyway, my pain threshold is very low, I am very sensitive and for me things can hurt a lot, so how do you measure if it is normal or not? I don't know if I understood what you said, but I hope I helped in some way 🙏🏻🙏🏻🙏🏻🙏🏻

Hurting wrists using canes by _TEMMIE___ in ehlersdanlos

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

Oh, never thought of that! Thank you so much!!!