cervical spine instability

(Photo is just for illustration! Not my neck!)

Anyone been told you were losing the curve in your cervical spine and/or have symptoms of cervical/upper spine instability and found any relief with any treatments ?

Has a cervical collar helped at all with symptoms? Or maybe helped support your neck during sleep?

I’m still in the process of figuring this all out, but my last neck xray looked a lot like this image over ten years ago. (Image shown is from Dr. Hauser’s website.)

The pain has gotten so bad I can hardly function. My vision went from 20/20 to erratically nearsighted almost overnight (better or worse depending on how inflamed/bad my neck pain is), 24/7 headache for 10+ years, constant nausea, vertigo, tinnitus… the list goes on, and doctors have been baffled for 10+ years (about 2011).

I hurt myself 3 days ago. I didn’t notice anything while doing the activity that injured me. I woke up next morning having “emergency digestive symptoms,” and having so much head/neck/upper-spine pain I could barely move my head and felt like I was going to be sick. Been going on for 3 days now.

Sleeping makes it worse. I’ve tried pillow after pillow. Nothing helps.
I’m wondering about trying a cervical collar for sleep.

I’m still trying to find a medical team. We just don’t seem to have EDS knowledgeable doctors around here. All my symptoms have been treated like unrelated issues and every specialist thinks it’s something different. Including putting symptoms off on conditions I’ve tested negative for, and disregarding the “provisional” EDS diagnosis.
Or just prescribing placebo, sending me to psychotherapy (already have a therapist and psychiatrist) and/or sending me to PT with therapists who know little to nothing about EDS/CTD and base treatment off of only what a doctor who knows nothing about it has recommended.

I’m not looking for diagnosis here, just maybe a little advice on intervention/support until I can find the qualified medical help I need. I’m desperate for SOME kind of relief.

I’ve been living off OTC painkiller cocktails 1-3 times a day for months; rotating between 2 aspirin + 2 alleve, 2 ibuprofen + 2 acetaminophen, or some combination there of.
Just trying to limp along until I can find a doctor who knows what the *bleep* to do with me. I finally have a BCM helping me navigate all this, but I’ve had 5-6 in the past 2 years because they keep leaving so I haven’t made much progress. I have high hopes for this new one, but she just took over for the last one 2-3 weeks ago. Fingers crossed.

If you’ve read this far, thank you! At the very least, the venting helped. I seem to be at yet another turning point where my symptoms have escalated again, leaving me even less able, and the few remaining friends I had are starting to disappear because I’m not “getting better” and can no longer (conveniently) come to them on the rare occasions I feel/felt well enough to leave the house to socialize.
This is all so isolating. And the escalating pain/symptoms are scary to face alone.

#EhlersDanlosSyndrome #CervicalSpineInstability

I did not expect to start the year off with a pinched nerve that has made it so my left upper arm cannot be moved away from my body in any direction and has now shifted to affect both arms as it heals, so I can experience what it would be like to be a T Rex by only using my forearms. Not amused! ....okay slightly amused, but heavily inconvenienced! #EhlersDanlosSyndrome #CervicalSpineInstability #SpinalStenosis

Having to fundraise for your own life saving surgery because your country can’t help is such a huge toll on the mind. It feels impossible right now I almost feel empty and exhausted, need all the #EDS only have til August to raise £100k #CCI / AAI #BrainInjury #Depression #Dysautonomia #CervicalSpineInstability #DislocatingSkull #BrainStemCompression