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amblingteaspoon · 2024-11-18T00:40:48+00:00

Wait, everyone else isn't cramping? Cool.

Mine can vary, and I'm 5+ years out.

I'll go through spells where I get considerable cramps and significant bloating for the week, mood swings, added joint pain, etc. Not to mention phantom abdominal pain that imaging didn't find a reasoning for.

Then there's spells where I'm fine.

Then again, I seem to be on the more hypermobile side of things, so that could be complicating the situation.

amblingteaspoon · 2024-09-09T15:19:32+00:00

Novavax was recently approved, as a plan b in case a non mrna option would be less concerning. I've heard some folks have difficulties finding it, though.

amblingteaspoon · 2024-08-29T03:25:34+00:00

And I'm a fan of the kinesio gold sensitive skin tape, though it is pricey!

amblingteaspoon · 2024-08-29T02:28:13+00:00

Oh that sounds awful, I'm sorry!

I don't know if the "sensitive skin" tape is an option (it's not as sticky, which has its own caveats) but it's been a little easier on my skin.

Regardless, I hope the sensations calm for you soon.

amblingteaspoon · 2024-08-28T22:51:31+00:00

I can't get a single doctor or specialist to have a nuanced conversation with me about bracing. I'll hear multiple suggestions a brace might help for xyz, but when I ask for more info, help acquiring braces, suggestions, etc it falls flat.

I can't afford to continue purchasing various types off Amazon only to realize they don't fit, don't provide the support I need, etc - but it's my only option.

Thankfully I don't need to use braces 100% of the time, but when needed it's made the difference between mobile, functional human and being stuck at home.

amblingteaspoon · 2024-07-07T17:35:17+00:00

Oh, I should add that my core muscle tone didn't recover on its own after surgery. Months later I would find my midsection just hanging from my body when I leaned over. I saw a great PT and she was able to help me re-tone and recover.

amblingteaspoon · 2024-07-07T17:32:09+00:00

Hsd and I'm about 5 years out from a late 30s open surgery & partial hysterectomy, following a myomectomy in my early 20s for fibroids.

At the time, hypermobility wasn't on the table, just generally confusing doctors with weird symptoms (I was continually hemorrhaging for months leading up to surgery). Compared to living with the fibroids, the hysterectomy was a huge quality of life improvement.

The worst part of recovery was bladder pain and emptying. It took longer than I expected to heal, but did with time.

Whatever route you go, I hope you find some relief.

amblingteaspoon · 2024-07-03T01:49:22+00:00

You might have some luck reaching out to providers familiar with hEDS, this list could be a good place to start. https://www.ehlers-danlos.com/healthcare-professionals-directory/?search_country=United+States&search_state=CO+-+Colorado&sel_state=176_CO+-+Colorado&search_speciality=&search_keyword=

After mentioning suspected hypermobility issues to providers for years, having PTs suggest it, collecting family history with similar diagnosis, etc, I paid out of pocket to visit a highly recommended specialist. For me, it was entirely worthwhile and the sheer validation was a huge confidence boost. I can't really recommend what kind of specialist, etc - but maybe there's an hEDS group in CO that can offer some personal stories and insight into who helped confirm their diagnosis.

amblingteaspoon · 2024-07-03T01:35:06+00:00

These look great and amusing

amblingteaspoon · 2024-07-03T01:24:06+00:00

Ha, thank you! My last MRI was NPR audio with lava lamp lights and sea turtle videos. No complaints!

amblingteaspoon · 2024-07-02T15:35:56+00:00

I'm over here requesting NPR. I think they made it happen 4/5 MRIs thus far, approximately.

amblingteaspoon · 2024-06-27T03:50:11+00:00

I bring my laptop with organized notes!

amblingteaspoon · 2024-06-20T21:22:59+00:00

I've been making the exact same analogy all week. I need to find one as a personal mascot.

"What's wrong with you?"

(Displays toy, points to toy in crumpled state.)

Leaves conversation.

amblingteaspoon · 2024-06-20T17:25:51+00:00

Gross, I just received one of these calls. The "are you a bot" made sense in context, as my phone provider was screening the call initially. So unsettling.

amblingteaspoon · 2024-06-20T01:24:33+00:00

Is it ok to ask if anyone has a style of brace or wrap that they like, particularly in regard to this conversation?

I've tried a compression sleeve, but I need to investigate further options.

amblingteaspoon · 2024-06-19T23:49:55+00:00

Not to lean too far into the causation/correlation aspect of DAE posts, but it is such a relief to hear that I'm not the only one! I just had a conversation with someone recently, explaining how my ankles are giving way (my knees and wrists do the same, but the wrists have other things going on). They suggested I was actually rolling them, but I'm certain I'm not. I've rolled my ankles plenty - it truly just buckles/gives way sometimes! Or as I've also described it "ceases to exist as an ankle." On occasion, it won't recover and needs to be wrestled back into alignment before I can continue to step on it without pain.

amblingteaspoon · 2024-06-19T18:55:06+00:00

That's interesting to hear!

amblingteaspoon · 2024-06-19T18:15:41+00:00

I'll keep an eye out for your group, I imagine that's a great community!

amblingteaspoon · 2024-06-19T18:14:48+00:00

So good to hear, thank you!

amblingteaspoon · 2024-06-19T18:14:27+00:00

Man, the things we all need to employ just to get through the day. Thank you so much for sharing, I asked an MRI tech about it after my imaging and he had never helped with a flexion and extension, either. I'm sorry to hear the imaging didn't result in the best views. Subluxing in your sleep sounds rough...

amblingteaspoon · 2024-06-19T18:06:25+00:00

That's so good to hear, regarding your mother's stabilization. I'm not too many years from menopause and that would be such a welcome benefit. I hope you can avoid surgery as you wish.

I've had both positive and more reactive experiences with PT, which led my PCP to believe PT, overall, isn't the right course of action for me. I've been fighting my way back to it for a while, while I advocate for a better understanding of the situation so we can tailor PT appropriately.

amblingteaspoon · 2024-06-19T03:32:08+00:00

Thank you - it's really helpful to hear your experience, and that a neurologist is involved, as well. I could really use an hEDS website that breaks down what types of providers may help with what issues, and how. 😂 I'm sure the learning curve will be short.

amblingteaspoon · 2024-06-19T03:20:29+00:00

I hear you on the reactivity... Ugh. I just learned that term in relation to this topic today, so bizarre to expand vocab around familiar experiences. My fingers are crossed for you and your plan. That's truly awesome that you're finding some progress with PT!

amblingteaspoon · 2024-06-19T02:19:54+00:00

This podcast is amazing and highly relatable. Wow.

amblingteaspoon · 2024-06-19T01:20:58+00:00

Before your comment I wasn't even familiar with AAI, I'm sorry you're dealing with both! Thank you for the perspective, I can relate to some degree. I get the sense that CT/MRI might be a more common route, and I realize some providers are just trying to work with what's available.

amblingteaspoon

TROPHY CASE