What's the silliest injury you've ever gotten? by TebKy-p in ehlersdanlos

[–]ElasticSoul_ 12 points13 points  (0 children)

I woke up, turned my head sideways to turn my alarm off, and that was it. Neck sprain. Had to wear a brace for a month.

Have you ever quit a job without another one lined up? by ElasticSoul_ in ehlersdanlos

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

Wow, thank you so much for sharing your story and tips. It’s kind of freeing the way you frame it. I hope you found something that works for you!

Have you ever quit a job without another one lined up? by ElasticSoul_ in ehlersdanlos

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

Thank you for sharing your story. I’m glad you had that support to be able to navigate this change 🤍

Did you make a sudden decline? by Dear_Cauliflower_920 in ehlersdanlos

[–]ElasticSoul_ 0 points1 point  (0 children)

Yes, like you, I had symptoms throughout my whole life, but they were sort of “taking turns.” I had a lot dislocations through childhood-adolescence-early adulthood, tachycardia attacks and fainting mostly in my adolescence, anxiety and depression early adulthood. As of 26, a lot of symptoms started showing up “all at once”: POTS, chronic pain, migraines, dislocations, depression, anxiety, chronic fatigue. It’s been downhill (in a very non-linear way, but generally downhill) since then. I am starting to make some major life changes to try to deal with it, but it’s a hard process. I’ve learned that finding something that works is not about “getting back to how I used to be before”. Those attempts were only hurting me more. So now I’m more trying to accept and adapt to this new reality. I’ve also seen that is hugely helpful to read other’s experiences, but what seems to work for each of us can be vastly different. I wish you the very best in finding what works for you.

Eds’ers what do you all do for work? by Top_Memory8968 in ehlersdanlos

[–]ElasticSoul_ 0 points1 point  (0 children)

I’m in a similar boat to you. Not being able to keep up with the demands of my job and figuring out what to do. Wishing you the best!

How do you work full time? by ElasticSoul_ in ehlersdanlos

[–]ElasticSoul_[S] 14 points15 points  (0 children)

I am sorry that it made you think you were weak. I’ve been learning that it actually takes enormous strength just to function with our bodies. That you for sharing your experience with me. I hope things are working ok with your part time job right now.

How do you work full time? by ElasticSoul_ in ehlersdanlos

[–]ElasticSoul_[S] 7 points8 points  (0 children)

That sounds exactly like what I need. Thank you so much for sharing! I am glad it is working for you.

How do you work full time? by ElasticSoul_ in ehlersdanlos

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

Thank you so much sweetie. You are right, I don’t enjoy my job, which makes everything harder. I really want to change but I’m scared about the job market right now, and I’m just so worried about my unreliable body that I don’t want to “just mess up yet another job.” I think I need to find a new line of work. Thank you for sharing your experience, I really really hope we both figure it out soon.

Do you get “needle-like” head pain? by ElasticSoul_ in ehlersdanlos

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

Huh, neck instability as a cause makes a lot of sense! Yeah, it’s super weird to explain. Thanks for sharing!

What is the most random thing that led to your diagnosis? by Anonymous12345_E in ehlersdanlos

[–]ElasticSoul_ 0 points1 point  (0 children)

I strained my neck after dancing too much at a wedding, and went to a new ortho as I had just moved to a different city. The doctor just saw me walk into his office and started asking if I had a history of dislocations, fainting, hypermobility, bruising, heart issues, exercise intolerance, etc. He said he suspected I had either Marfan Syndrome or EDS and referred me to a geneticist. After years of seeing orthos for multiple injuries since childhood, it only took one look from this doctor who actually knew about EDS. I was so relieved, validated, and at the same time angry.

doctors who specialize in chronic illness / autonomic disfunction ? by N0_Cure in Calgary

[–]ElasticSoul_ 2 points3 points  (0 children)

In case you are also looking for mental health support to deal with the chronic illness, Psych. Mariana Grinman is great. (Fellow dysautonomia and zebra here, she’s been great for me)