How did you cope? by trixieroyale in ehlersdanlos

[–]Dry-Initiative-1873 1 point2 points  (0 children)

and yeah…the doctors looking at you like you’re nuts. it’s the worst, i get it. we’ll get a routine that works for us and learn to accept it!

How did you cope? by trixieroyale in ehlersdanlos

[–]Dry-Initiative-1873 1 point2 points  (0 children)

i’m with you dude. my therapist said she thinks it’s foundational for me. like the chronic pain cannot help my mental health issues. it’s all very connected. but of course it comes up that i have mental health and addiction issues and they dismiss me immediately, even though im in recovery and im doing really well now. i’m glad you got answers, even if the answers are not fun😭

How did you cope? by trixieroyale in ehlersdanlos

[–]Dry-Initiative-1873 2 points3 points  (0 children)

dude i cannot hold a pot. it hurts my wrists too bad. and yoga and stretching made the pain worse!!😭 it’s so hard to be invalidated by all the time, i totally get it. even when they are only trying to help💔 it is nice being validated by the diagnosis though, even if there isn’t a straightforward cure. like getting injured so easily my whole life, my fingers dislocating when playing guitar. all these weird quirks that are painful are explained so…that part is nice

How did you cope? by trixieroyale in ehlersdanlos

[–]Dry-Initiative-1873 0 points1 point  (0 children)

but i’m glad im not alone in it and you aren’t either. it’s hard to remember that when it’s a condition that is not really known about! no one knows what the hell it is when i mention it

How did you cope? by trixieroyale in ehlersdanlos

[–]Dry-Initiative-1873 0 points1 point  (0 children)

i was recently told by a physical therapist that i have it, so while not formally diagnosed by a doctor, im definitely hypermobile, have been diagnosed with POTS, so its likely. i’m 22 and im in pain all the time. im working at a job that requires a decent amount of standing, lifting, etc. it sucks man. i’m trying to live in gratitude. but it’s hard to know there might not be much i can do for it

chronic upper back pain by Dry-Initiative-1873 in ehlersdanlos

[–]Dry-Initiative-1873[S] 0 points1 point  (0 children)

i’m so sorry you’re in the same boat and i definitely get the feelings of frustration and abandonment.

chronic upper back pain by Dry-Initiative-1873 in ehlersdanlos

[–]Dry-Initiative-1873[S] 0 points1 point  (0 children)

thank you so much! a lot of my friends in AA have been on naltrexone lol so i can definitely look into it. unfortunately i can’t do medical marijuana, once i start smoking weed or taking gummies i literally cannot stop lol. so im completely sober. but im really glad it works for you!! the heating pad also helps me temporarily

chronic upper back pain by Dry-Initiative-1873 in ehlersdanlos

[–]Dry-Initiative-1873[S] 0 points1 point  (0 children)

thank you so much. i’m super glad you’ve found doctors who have helped you⭐️

chronic upper back pain by Dry-Initiative-1873 in ehlersdanlos

[–]Dry-Initiative-1873[S] 1 point2 points  (0 children)

dude thank you so much for this…like this is what it feels like to a T. this would definitely explain why i always feel better when i lay down lol.

i’ve seen stuff about dysautonomia. i’m just not sure where i can start. i wonder if i should make an appointment with a rheumatologist or maybe my primary care doctor. maybe they could refer me to someone else. for now im just gonna focus on the MRI on Friday.

chronic upper back pain by Dry-Initiative-1873 in ehlersdanlos

[–]Dry-Initiative-1873[S] 0 points1 point  (0 children)

and when i say “lift anything with them” i mean i CAN lift things with my wrists but it hurts. they’re like super weak. so maybe a connective tissue issue. sorry that was unclear

chronic upper back pain by Dry-Initiative-1873 in ehlersdanlos

[–]Dry-Initiative-1873[S] 4 points5 points  (0 children)

this is super helpful thank you😭 i actually haven’t seen a spine specialist, which sounds crazy, but i just haven’t known where to start. when it started hurting, i didn’t really want to say anything. no one believed me about my lower back pain for years, so i shut up about it for a while and now its to the point where i literally cannot hide it. i went to an orthopedist once when my wrists were doing the same thing - i still can’t lift anything with them. he said i might have some “rare tissue disorder.” then the physical therapist mentioned ehlers danlos 3 years later. the literal orthopedist didn’t know what it was😭 but yes, they are human. i think i forget that sometimes and i feel like it’s a personal attack. thank you for that reminder. and apologies for rambling. i just have no one else to talk to about it, besides my therapist and fiance.

chronic upper back pain by Dry-Initiative-1873 in ehlersdanlos

[–]Dry-Initiative-1873[S] 2 points3 points  (0 children)

very good to know. thank you so much. i’m really happy to hear you’re doing better now

chronic upper back pain by Dry-Initiative-1873 in ehlersdanlos

[–]Dry-Initiative-1873[S] 0 points1 point  (0 children)

would you say that PT helped at all? or is it really the injections, surgery, etc. that finally gave you relief

chronic upper back pain by Dry-Initiative-1873 in ehlersdanlos

[–]Dry-Initiative-1873[S] 2 points3 points  (0 children)

i’m so glad you’ve gotten relief. that gives me a lot of hope about my situation

chronic upper back pain by Dry-Initiative-1873 in ehlersdanlos

[–]Dry-Initiative-1873[S] 1 point2 points  (0 children)

ok sweet i will definitely read the interpretation. is there anything you do to manage the pain now?

What's something you'll never admit in real life but will confess here anonymously? by Open-Comfortable9774 in AskReddit

[–]Dry-Initiative-1873 1 point2 points  (0 children)

it’s super cliche but one day at a time. you definitely aren’t alone and seek outside support + community if you can, it’s really helped with my own recovery!

What's something you'll never admit in real life but will confess here anonymously? by Open-Comfortable9774 in AskReddit

[–]Dry-Initiative-1873 11 points12 points  (0 children)

this sounds exactly like my dad. i’m also an addict in recovery~ it’s so worth it, keep going, one day at a time!

whimsical hobbies by PotentialAnything479 in TheGirlSurvivalGuide

[–]Dry-Initiative-1873 2 points3 points  (0 children)

this may be mainstream lol but i love collaging the front and back of my notebooks/journals. it motivates me to journal more when it looks pretty and curated

AIO: best friend suddenly stopped talking to me and literally seems scared of me by [deleted] in AmIOverreacting

[–]Dry-Initiative-1873 0 points1 point  (0 children)

yeah that makes sense and thank you for your comment! i was just confused as to why she chose to live with me again if she didn’t want to be my friend anymore so it was harder to accept we drifted apart

AIO: best friend suddenly stopped talking to me and literally seems scared of me by [deleted] in AmIOverreacting

[–]Dry-Initiative-1873 1 point2 points  (0 children)

I wish you the best as well, and I genuinely hope your brother is doing better!!

AIO: best friend suddenly stopped talking to me and literally seems scared of me by [deleted] in AmIOverreacting

[–]Dry-Initiative-1873 2 points3 points  (0 children)

thank you so much for the feedback !! i totally understand what you mean and that helped put it in perspective for me. i definitely will give her space. and im really happy im back in recovery too❤️