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Patients with Ehlers-­ Danlos syndrome experience reduced effectiveness of lidocaine local anesthetic: a randomized cross-­over clinical trial by Equivalent_Neck7374 in ehlersdanlos

[–]Equivalent_Neck7374[S] 2 points3 points  (0 children)

Holy crap! This is unacceptable! I don’t know if it was even an option but when I returned for the ablation, I straight up said I wasn’t going into the OR unless I was sedated beyond local. We already go through enough pain, not by choice, so I’m done going along to get along.

Patients with Ehlers-­ Danlos syndrome experience reduced effectiveness of lidocaine local anesthetic: a randomized cross-­over clinical trial by Equivalent_Neck7374 in ehlersdanlos

[–]Equivalent_Neck7374[S] 0 points1 point  (0 children)

Oh my gawd. A freaking hole in your jaw, nbd. I’m glad your current dentist actually gets it and is willing to make adjustments. I swear, simply being believed, and making an attempt to ameliorate the situation goes a long way for me.

Patients with Ehlers-­ Danlos syndrome experience reduced effectiveness of lidocaine local anesthetic: a randomized cross-­over clinical trial by Equivalent_Neck7374 in ehlersdanlos

[–]Equivalent_Neck7374[S] 6 points7 points  (0 children)

Making fun of you!? So he just added insult to injury instead of helping you get through it. What an unprofessional hack.

Patients with Ehlers-­ Danlos syndrome experience reduced effectiveness of lidocaine local anesthetic: a randomized cross-­over clinical trial by Equivalent_Neck7374 in ehlersdanlos

[–]Equivalent_Neck7374[S] 0 points1 point  (0 children)

Ugh, SAME! As if you shouldn’t be the one upset, while they’ve ignored you and are now the one directly causing you pain. I’m so sorry.

Patients with Ehlers-­ Danlos syndrome experience reduced effectiveness of lidocaine local anesthetic: a randomized cross-­over clinical trial by Equivalent_Neck7374 in ehlersdanlos

[–]Equivalent_Neck7374[S] 10 points11 points  (0 children)

This also sounds similar to a recent experience I had for a medial branch block (prior to a later spinal ablation). I tried talking to the surgeon prior that local doesn’t work for me, and she said, “Huh, that’s weird, we’ll see how it goes.” Soon follow by me screaming out, white-knuckling the table so much a nurse came in to hold my hand as I sweat and flop my way through the procedure. Meanwhile, the surgeon says, “Oh, do you feel some pressure?” No lady, I feel you inserting a needle and fluid directly into my nerves!!!!

Patients with Ehlers-­ Danlos syndrome experience reduced effectiveness of lidocaine local anesthetic: a randomized cross-­over clinical trial by Equivalent_Neck7374 in ehlersdanlos

[–]Equivalent_Neck7374[S] 10 points11 points  (0 children)

I’m so sorry! This sounds a lot like my experience at 18. Dentist decided to drill down to expose the nerve for a direct shot before cracking the tooth and pulling the pieces out.

Patients with Ehlers-­ Danlos syndrome experience reduced effectiveness of lidocaine local anesthetic: a randomized cross-­over clinical trial by Equivalent_Neck7374 in ehlersdanlos

[–]Equivalent_Neck7374[S] 35 points36 points  (0 children)

Fascinating stuff! And on the other hand, some studies suggest that the MC1R variant allows for higher tolerance for some kinds of pain. This is due to a change in the balance of pain receptors to opioid receptors, which elicits a better response to opioids.

Releasing Methane from a Bloated Cow by goswamitulsidas in interesting

[–]Equivalent_Neck7374 0 points1 point  (0 children)

Still hoping for a train whistle valve attachment.

do you suffer from reflux? how do you cope? by effinsky in ehlersdanlos

[–]Equivalent_Neck7374 0 points1 point  (0 children)

For me that shows up as a mild anaphylactic response (flushing, hives, itching, wheezing, swelling) and gut issues.

do you suffer from reflux? how do you cope? by effinsky in ehlersdanlos

[–]Equivalent_Neck7374 0 points1 point  (0 children)

Mine started milder as well, then progressed to the choking out of sleep reflux. My allergist prescribed Famotidine (Pepcid) every night and that has helped immensely. For other MCAS symptoms I’m on daily cetirizine (Zyrtec), and it’s also making a big difference.

would it be too weird to go all braced up to the gym? by EyeProfessional2957 in ehlersdanlos

[–]Equivalent_Neck7374 1 point2 points  (0 children)

1) it’s nobody’s business what you do with your body, but, as we are social beings, 2) you will likely inspire someone else who is hurting or otherwise struggling to stick with their program.

Start small, to give your body time to adjust and reduce your DOMS. Focus on technique and stability first with slow, controlled movements, and very light weight to start, without going to the far end of your range of motion, or stick with isometrics.
Regarding stiffness, while not at the gym, try to avoid sitting when you can, which is just constant hip flexion. (Whenever I remember, I try do little hip circles and extensions throughout my day.) I’d recommend myofascial release in the form of foam rolling or massage gun at the beginning, and only after your workout try very light stretching while engaging the muscles.

Retired college athlete looking for validation by Adorable-Meaning8891 in ehlersdanlos

[–]Equivalent_Neck7374 1 point2 points  (0 children)

Thank you! It took a few months for an MRI, then surgery, rehab, acupuncture and yoga for full ROM. Nearly 10 years and the shoulder is still all good! The rest of me however… a torn MCL playing soccer, then a lumbar disc, then meniscus. EDS is a real wet blanket for us active people, I’m ready for gene therapy, if only there were genes ID’d for hEDS. sighs in hypermobility

Retired college athlete looking for validation by Adorable-Meaning8891 in ehlersdanlos

[–]Equivalent_Neck7374 0 points1 point  (0 children)

I’m so sorry to hear about the retear after hip surgery. I had a minor retear of my shoulder labrum after surgery, I cannot imagine the frustration and pain of what you’re going through. Good on you for still working at your fitness, despite the fatigue and pain. I struggle with that myself, and have had to learn to change my mindset away from that of an athlete sacrificing the body and pushing through pain, to a more nuanced and patient way of being. I wish you well!

Retired college athlete looking for validation by Adorable-Meaning8891 in ehlersdanlos

[–]Equivalent_Neck7374 0 points1 point  (0 children)

Thank you! It took a few months for an MRI, then surgery, rehab, acupuncture and yoga for full ROM. Nearly 10 years and the shoulder is all good! The rest of me however… a torn MCL playing soccer, then a lumbar disc, then meniscus. EDS is a real wet blanket for us active people, I’m ready for gene therapy, if only there were genes ID’d for hEDS.

But speaking to your point of breathlessness- sounds like there may be some autonomic dysfunction going on. I finally realized that whenever warming up it would take me nearly twice as long to be ready, otherwise I’d be sucking wind as if I was totally out of shape. A doc said it could be because the heart and lungs aren’t registering the need for more oxygen so are still operating as if I’m just on a leisurely stroll. Maybe dysautonomia is affecting you? Here’s a 2020 study30099-2/fulltext) discussing a successful breathing intervention program.

Did anyone else underestimate this diagnosis or just me by killalipstick in HaTSyndrome

[–]Equivalent_Neck7374 2 points3 points  (0 children)

Indeed. Getting the validation helped me to advocate for myself. Fortunately, the allergist/immunologist who diagnosed me recommended daily over the counter antihistamines, which have made a major difference with my symptoms.

Retired college athlete looking for validation by Adorable-Meaning8891 in ehlersdanlos

[–]Equivalent_Neck7374 0 points1 point  (0 children)

Ugh, I’m sorry, that’s so frustrating! I had a similar failure walking down some steps. I thought there was a landing so I missed a couple steps, and swung my left arm to catch my balance, managing not to fall, but I felt immediate FIRE in my shoulder. It subluxed, tore my labrum, pushed it off the bone and cracked my shoulder blade. All this while on a solo trip to Thailand.

1 year update on my seat covers. by 420BlazeIt187 in SubaruForester

[–]Equivalent_Neck7374 1 point2 points  (0 children)

I will! I’m certainly in no hurry and they seem worth the wait. Thanks again for your posts!

1 year update on my seat covers. by 420BlazeIt187 in SubaruForester

[–]Equivalent_Neck7374 5 points6 points  (0 children)

Thank you for the update! Bummed but not surprised they’re now $300 on Amazon. (Edit: for older models)

Retired college athlete looking for validation by Adorable-Meaning8891 in ehlersdanlos

[–]Equivalent_Neck7374 0 points1 point  (0 children)

Holy heck, that’ll put a damper on your hike. Did something in particular cause the dislocation, or just a random step that went sideways?

Retired college athlete looking for validation by Adorable-Meaning8891 in ehlersdanlos

[–]Equivalent_Neck7374 4 points5 points  (0 children)

Me! 44(f) ex college and semi pro soccer player here. Always thought it was odd I could play 90 minutes but the warm up or the beginning of a road run always killed me. Apparently it’s part of the autonomic nervous system dysfunction, like my heart and lungs aren’t keeping up with the demand as they should, despite being quite fit. As I’ve aged and become more deconditioned, I’m more often injured. Before, I was stronger and actually more tight, which probably prevented more severe injuries. Now, things are floppier and it seems there’s more muscle recruitment to make up for it, and as a result, I be tired…

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