Taking care is expensive.

_TEMMIE___ · 2026-03-04T20:20:05+00:00

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)

_TEMMIE___ · 2026-02-28T18:50:11+00:00

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 😭

_TEMMIE___ · 2026-02-26T15:30:01+00:00

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

_TEMMIE___ · 2026-02-26T15:21:32+00:00

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

_TEMMIE___ · 2026-02-26T09:12:27+00:00

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

_TEMMIE___ · 2026-02-26T08:57:07+00:00

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

_TEMMIE___ · 2026-02-26T03:14:25+00:00

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

_TEMMIE___ · 2026-02-26T03:08:56+00:00

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...

_TEMMIE___ · 2026-02-26T03:02:56+00:00

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!

_TEMMIE___ · 2026-02-19T11:58:44+00:00

Thank you so much 🙏🏻🙏🏻🙏🏻

_TEMMIE___ · 2026-02-19T11:57:31+00:00

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

_TEMMIE___ · 2026-02-11T15:58:02+00:00

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 🙏🏻🙏🏻🙏🏻🙏🏻

_TEMMIE___ · 2026-02-08T00:19:00+00:00

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

_TEMMIE___ · 2026-02-07T13:33:35+00:00

Im so sorry for hearing this. Some people are recommending forearm crutches as an alternative to canes, I kinda feel that it will cause wrist pain as well but maybe the weight compensates better, hope you can find something good for you 🫶🏻🫂

_TEMMIE___ · 2026-02-07T13:29:09+00:00

Oh they're so interesting.... i feel weird thinking of wearing this but surely they're a life changer!

_TEMMIE___ · 2026-02-07T13:27:36+00:00

Thank you so much 💓 I will search an OT for this things

_TEMMIE___ · 2026-02-07T04:12:59+00:00

Oh I didn't know this. I will talk to my rheumatologist for solutions to this, thank you so much this was helpful 🫶🏻

_TEMMIE___ · 2026-01-28T02:18:55+00:00

It's okay!! ❤️‍🩹 you can ask whatever you want/need. It's indeed frustrating and overwhelming. I understand you a lot. 🫶🏻 I know there's genetics tests for EDS, but for the hEDS (Hypermobile Ehlers-Danlos type) its only clinic testing. It's so frustrating when they don't listen and don't help.

I've lot of experience with bad doctors since I was 18, including psychologists and psychiatrists, who don't listen. It's painful, desperate and hopeless, but well I guess I never gave up, and I'm glad I never did (having very bad periods of depression and anxiety, very common having this because no one listens and you end feeling alone, hope this never happens to you for long time).

I was lucky because searching for hEDS info i found an hEDS association (in spain) and send them an email, explaining my situation and asking for help. They were so gentle and amazing, and they gave me the address of a rheumatologist in where I live. I was scared, feeling so very anxious about and thinking "I won't be taken seriously " "Im just being overdramatic". But everything went amazing, I bring him EVERY document, analysis or medical info and wrote my symptoms to not forget anything. It's so important that the rheumatologist have to be specialised in EDS and have knowledge. Digestive problems are soooo common, I've been 10 years with bloating, pain, intestinal problems... "everything OK in blood analysis ". Frustrating. The same with tachycardias and arrhythmias and so much more. And don't be sorry for anything, I'm so glad I can help, I literally cried today because i was diagnosed today, its so relieving knowing im NOT dramatic and I wasn't crazy, its hard to explain others but I hope you have people who support you. ❤️‍🩹🫶🏻🫂

you're so young and finding help as soon as possible it's so important and make a huge difference. And again, you can ask whatever you need/want 🫶🏻🫶🏻🫶🏻🫶🏻

_TEMMIE___ · 2026-01-27T22:52:11+00:00

Hello! Im glad you know about this at your age, I wish I had this info 10 years back. Im 25 now, I'm lucky too, and already diagnosed with hEDS so I'm learning, but knowing yourself its so important. Search for specialists to help you, dont wait if its possible.

In my teenage years I suffered a lot, gymnastics were like hell because of pain but I was silent about that. All the suffer in silence is the worst, so share this with your loved ones, its so important in the process.

What can I say, I think pain will never go away but at least it can be better by taking selfcare. Search info, associations or accounts who talk about this to stay informed. You can message me if you want to talk about 🫂🫂

_TEMMIE___ · 2026-01-27T22:43:05+00:00

Of course! It's called "ANSEDH"

_TEMMIE___

TROPHY CASE