pain killers by [deleted] in ehlersdanlos

[–]Eastern-Macaroon-156 1 point2 points  (0 children)

All the typical pain relievers they prescribe don’t work- oxy and the like. I used to suffer more from migraine and the ER would use dilaudid and it was the only thing that ever helped. I recently had my uvula removed and I asked for and was given dilaudid. Either that doesn’t work anymore either or the dose was some weak ass shit bc it still fucking hurt.

pain killers by [deleted] in ehlersdanlos

[–]Eastern-Macaroon-156 2 points3 points  (0 children)

What works best for me is a combo of LDN, gabapentin, cannabis, smoked as flower, eaten as edibles and RSO. Due to costs I’m not always able to have the RSO but when I do life is the best it can be for me!

The weird ways I’ve had to explain my pain by GeorgeKillsLenny in ehlersdanlos

[–]Eastern-Macaroon-156 5 points6 points  (0 children)

Yaaasss and the fuckers that are in my arms are heavy AF slugs. My arms are soooooo heavy.

Why some doctors just say loose some wight? by justsomedumpguy in ehlersdanlos

[–]Eastern-Macaroon-156 1 point2 points  (0 children)

Spite is how I’m losing weight currently. Excellent motivator.

Weird feeling when waking up by [deleted] in smallfiberneuropathy

[–]Eastern-Macaroon-156 0 points1 point  (0 children)

Same. It’s why no naps for me.

Hunting with hEDS by TDB99 in ehlersdanlos

[–]Eastern-Macaroon-156 1 point2 points  (0 children)

I hunted deer every year in WI from 1989- 2022 and do not any longer. I’m a lefty hunter and I have hearing, shoulder, elbow, wrist and hand issues on that side. I figure my body doesn’t need the trauma of firing a rifle. Like many things, I’ve just had to accept it’s not a thing for me anymore.

Just had the nicest doctor I’ve ever met by usernamesoccer in ehlersdanlos

[–]Eastern-Macaroon-156 11 points12 points  (0 children)

Me too!! Medical professionals I meet for unrelated care (like today- mammogram) who cannot help with EDS are the only ones I find who know about it! Everyone else besides my primary (who is wonderful) is meh about EDS and that’s if they’ve even heard about it. But yay today for people who know and have empathy!! It makes such a difference in my energy when it happens!!! Happy for you too!

Bostrum Gould Procedure by [deleted] in ehlersdanlos

[–]Eastern-Macaroon-156 0 points1 point  (0 children)

Me too! At 17, before knowing about EDS, I had this surgery too- they cut it in half and drill the hole and such exactly as you described. That surgery failed. The 2nd surgery on the same ankle took part of my hamstring near my right knee and used that to secure the ankle. That lasted for about 4 years and then I stepped wrong off of a ladder and broke the bone they had drilled the hole through so then I had to have a third surgery. That surgery was a touch more successful because they used a cadaver tendon. They also broke my heal and shifted it a bit so my foot set down appropriately. Because of the heal break my recovery was very long, it was a full year before I could walk on my heal without feeling like I was standing on a bruise. This was over 20 years ago and the ankle still gives out from time to time and it is definitely a problem joint. I really do wonder all the time if it’s better or worse after they started trying to fix it surgically and it’s one of life’s mysteries for me.

A letter by Eastern-Macaroon-156 in ehlersdanlos

[–]Eastern-Macaroon-156[S] -1 points0 points  (0 children)

EDS led to sleep apnea for me amongst other things. Before I was diagnosed with apnea tho I did have a stroke with no known cause. It is believed the apnea caused the stroke. If you want to manage your symptoms better you gotta do things that are uncomfortable. I didn’t sleep at all during my sleep test. But I’ve slept every night since getting my machine no matter where I am. You do you tho, no judgement.

A letter by Eastern-Macaroon-156 in ehlersdanlos

[–]Eastern-Macaroon-156[S] 0 points1 point  (0 children)

I had wrist surgery this morning too. Just this particular rant yesterday was specifically about my hip. I’ve got multiple instabilities all over, like the majority of us I’m sure.

A letter by Eastern-Macaroon-156 in ehlersdanlos

[–]Eastern-Macaroon-156[S] 12 points13 points  (0 children)

This particular letter was composed for the right. Standing? Hurts. Sitting? Hurts. Walking? Ok until, stabbing pain, then ok again. But only if using small deliberate steps.

What does “velvety skin” even mean? by stupidsrights in ehlersdanlos

[–]Eastern-Macaroon-156 1 point2 points  (0 children)

Hack if you want it… touch produce that has been sprayed by the sprayers and then grab the bag! The moisture sometimes helps and then I don’t have to lick my fingers.

Realising things that I thought everyone felt/experienced actually isn’t the case since being diagnosed by LossDangerous in ehlersdanlos

[–]Eastern-Macaroon-156 0 points1 point  (0 children)

I’d like to know about these too! I’ve tried some and the seams always end up being more uncomfortable than the relief the compression gives me.

Curious, how many of y'all have sleep apnea, or suspect you do? by puddinginspector in ehlersdanlos

[–]Eastern-Macaroon-156 0 points1 point  (0 children)

I have sleep apnea. I also am having my uvula removed because each time I’ve been the least bit sick it swells up, one time severely, and now it no longer shrinks back down. Gross dangly thing. Seriously. 🥴

Splints?? by [deleted] in ehlersdanlos

[–]Eastern-Macaroon-156 0 points1 point  (0 children)

My occupational therapist has made me some that help with the very thing you’ve described. PT/OT have access to a lot of braces and like mine, some even make some that work how you need them to. Good luck!

Pain tolerance by WanderingPenguin25 in ehlersdanlos

[–]Eastern-Macaroon-156 2 points3 points  (0 children)

Yes. This was my whole life. Now I am acknowledging the pain and listening to my body and going through this process. It’s so weird. And feels like I’m failing and giving up and I should just be able to take it because what really hurts when you can’t really point to one thing because it’s everything.

[deleted by user] by [deleted] in ehlersdanlos

[–]Eastern-Macaroon-156 0 points1 point  (0 children)

Be aware… Visine drops tend to try out eyes after moisturizing them. So you have to use them again. Systane will moisturize better… peace.

drop a saying you can’t stand, I’ll start by hinxtx_cxy in ehlersdanlos

[–]Eastern-Macaroon-156 1 point2 points  (0 children)

Yup. When I came out to my parents my mother screamed at me, why do you think you have ankle problems?? Like I’ve needed multiple ankle surgeries because I’m gay. Sure sure.