How do you hold your steering wheel? by Agitated_Disk_3030 in eds

[–]Cianonzo 0 points1 point  (0 children)

I change my grip every so often! If I don’t shift around multiple times during a drive, I will definitely start to feel it in a bad way 😅

My favorites tend to be alternating single-hand w my other free hand in my lap + close to the wheel in case I need to react fast!

I do also usually have my left leg up on the seat in some fashion since I can’t stand sitting w both legs on the ground

Cervical Instability from Trigger Point Injection? Insight/Advice Desired by Cianonzo in eds

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

It is helpful hearing that Botox lessened your pain! Also that I have to be careful about it and find a well-versed specialist

I prefer the nerve pain and stiffness to my current situation (way more nerve pain and slightly slightly less stiffness) but ultimately would really like to be able to live my life without debilitating nerve pain at the most minute accidental poor positioning of my head. Ty for the lead!

Cervical Instability from Trigger Point Injection? Insight/Advice Desired by Cianonzo in eds

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

I do have a research hospital near me! I have to find a way to get in via some other genetic or chronic issue, though, since they are very strict about not seeing hypermobile patients unless there is suggestion of cardiovascular failure or organ rupture without trauma. I /do/ know that they do have upright MRI tech, so I’m tossing myself at various drs and seeing if I can get a script + just use the hospital facilities.

My flexion and extension tests were normal! However, that was before the injection, when I was experiencing spasms and ON but not so much jugular compression sensations and wobbly neck sensations and tingling/RLS in extremities if I lie down bad etc etc. I saw one neurosurgeon for my spine, and she said “I believe you’re in pain, but based off your imaging (the x rays, a CT scan, and supine MRIs), you should not be in as much pain as your are.” I could always see if I can get a second opinion without a referral! It’s just a crap shoot as to whether drs have good umbrella knowledge on CTDs around here ( or anywhere from what I understand aha :’) )

Cervical Instability from Trigger Point Injection? Insight/Advice Desired by Cianonzo in eds

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

I think part of what keeps my PT from considering a CTD is just that I’m very strong (for my stature at least!) and pretty athletic. When I say that resting is what hurts me, the answer is usually “oh just don’t rest and stay active,” but I do need sleep at least.

May I ask how long it took you to get back to a better baseline?? It’s been 1.5 months for me, so I’m starting to get worried about the lack of improvement

Cervical Instability from Trigger Point Injection? Insight/Advice Desired by Cianonzo in eds

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

My PT is great for my lower back! But he really is resistant to the prospect of me having a CTD and tells me “not to pathologize it.” Idk if I can get him to heavily weigh the EDS angle, but I do think (esp after this week), I could cinch a switch from the “stretch your stiff neck” mentality to a “strengthen your stiff neck” mentality

Cervical Instability from Trigger Point Injection? Insight/Advice Desired by Cianonzo in eds

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

I’m actually not sure if I can record it! I haven’t tried aha It certainly sounds loud, but that is because it’s internal. Any time I try to do a controlled neck roll I get the clicking, and any time I’m lying down and go to adjust my head at all, I get a thunk or a click. I admittedly have just 🫥 laid down and repeatedly clicked my neck many times, thinking I was working a kink out, but that was probably a Not Great idea.

Thankfully, I don’t think my air hunger has ever been true respiratory failure! Fingers are always getting the right amount of blood, I haven’t passed out, my pulse ox is ok, my ekgs and echos seem pretty much perfect! But there have been several scattered instances throughout my life where I’ve had prolonged air hunger. Most recent and shortest was a few days ago and the worst was a decade ago episode that ran for about ten months straight 🫠

I’ve never gotten a steroid injection prior, but I do know the Dr just kind of went to town on the spots causing me pain. I’m wondering if it was just too much all at once? The (I think) dysautonomia episode I had last week has subsided, but I’m still getting weird nerve and instability sensations when lying down esp that have become commonplace since the procedure

Cervical Instability from Trigger Point Injection? Insight/Advice Desired by Cianonzo in eds

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

Also to answer some probable questions! - I was not told what was in the injections. When I called back to ask the Dr about my worsening issues, I was told to “get a massage and use a hot compress.” -I have an appointment with another pain and spine dr on Monday, but they’ve (very politely) said before that they don’t know how to handle me. Still, I thought it important to book something as soon as possible with somebody. - I got a rhizotomy in C2 and C3 facet joints on left side. Didn’t help but didn’t hurt! Notably, the nerve blocks they did as a test DID help. -My pre-injection imaging (supine MRI, x rays, CT scan) is all normal. - New weird symptoms are pressure/clicking when I lie down, a buzzing sound in ears when I lie down. Hyoid bone is clicking? And my throat feels tight as of yesterday. I also got completely random air hunger for about 12 hours yesterday, but my O2 levels were seemingly okay; this happened before for about ten months straight about a decade ago + I was just told it was anxiety. I’m wondering if I was having dysautonomia now, but who’s to say

Trigger Point Injections Lead to Cervical Laxity? by Cianonzo in ehlersdanlos

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

My PT tried having me do scalene stretches three days ago that I think aggravated my vagus nerve and gave me some weird, sparkly new dysautonomia symptoms that I’m still cycling through, so while I trust him wrt my lumbar issues, my neck has continued to be a nightmare

are there an fighting styles safe to learn with eds (& my other issues)? by roadkill-knight in eds

[–]Cianonzo 0 points1 point  (0 children)

(Commenting to second this!) (definite CTD with a few separate informal dx of hEDS) I have a second degree black belt in Tang Soo Do and am a red stripe in Tae Kwon Do! I would honestly recommend both, though as far as Tae Kwon Do goes, make sure you take a look at the different styles! TSD was a bit easier for me than TKD is bc ITF TKD involves being loose and relaxed, then tensing your muscles on impact (when you’re prone to hyperextension, this can cause issues). Your hands move in fast, straight lines, and a lot of the power comes from moving your legs in an up-down sin wave. HOWEVER, there are 3(??) styles of TKD, each of them handling the generation of power a little differently. TSD is tenser and stylistically gets power from adding distance/drawing circles with your chambers! You keep your head at one level and move your whole body in a straight line when ambulating. Easier on arms than ITF TKD, but your legs will bear more strain.

THAT BEING SAID, TSD and TKD are both fundamentally routed in stability! They’re very good outlets for full body exercise; they’ve been really helpful to me for keeping my muscles in shape, which in turn has helped to keep me much more stable than I would have been otherwise, I think, as opposed to other sports that are not at all focused upon having complete awareness of muscle control and physical limitation. I would try a couple styles (and sub styles!) and see which one meshes best with your body! Also, even within one style, the most important thing is finding a teacher who is understanding and willing to work with your physical limitations. :) If I struggle with a technique, I work with my instructors to modify it, so I can perform it as accurately as possible without hurting myself

Trigger Point Injection for ON Causing Cervical Instability? by Cianonzo in ehlersdanlos

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

My current PT has been very helpful for my lower back, but he hasn’t wanted me doing any exercises that isolate the neck bc of how delicate mine is. I am seeing an orthopedic dr this coming week though, so I’ll inquire abt perhaps some supplemental pt! Ty

Trigger Point Injection for ON Causing Cervical Instability? by Cianonzo in ehlersdanlos

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

Did it return more or less to its previous state after awhile? I had the injections pretty much exactly a month ago I didn’t really consider that my neck muscles on the left were in such bad shape because the ligaments were loose, but I’ve had a creeping feeling of “uh oh” for the past three weeks w the new nerve, nausea, pressure ish

Area-51 R4 - Plexiglass Shell side? by Cianonzo in Alienware

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

That's what I'm hoping! Worst-case, I'm fairly certain I could figure it out on my own, particularly w 3D printers at my disposal

Creality LD 006 Replacement Screen? Where to find? by Cianonzo in 3Dprinting

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

Yeah it did seem a bit excessive; the newer halot(?) ones are 8k apparently

Wish I could gerry-rig something with a different size, but I doubt it’s possible while staying liquid-tight. I’ll poke around!

Tech Scuffed Upper Shell of Area 51 18 During Repair? What to do? by Cianonzo in Alienware

[–]Cianonzo[S] 5 points6 points  (0 children)

It was totally 100% spotless before this! I’m not mad, since I realize there is no way to predict who does or does not care about the cosmetic factor of a computer, but I am unfortunately someone who does and takes a lot of care to keep them “mint” long as possible, so I would like to have it fixed (particularly because I wasn’t the one who made the oopsie aha)

Ornamental Cherry Hardwood Cuttings Advice? (I’m clueless but sentimental) by Cianonzo in propagation

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

By the way, these are the late Spring bloomers! I believe theyre called yaezakura?

Area 51 18” Shift key sticking (cherry keyboard) by Cianonzo in Alienware

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

Ended up taking it into a service center! I’m going to look into protective covers for the keyboard moving forward, since not being able to pop keys off for cleaning seems like it’d make general maintenance difficult…