Did you get an upright MRI? That is the only test that detects for Chiari Malformation. Also, have you been evaluated for EDS-Hypermobility? I know a lot of people with this experience neck pain.. it's related to CFS, Fibromyalgia, and POTS along with many other things. You can look online at the Brighton test to see if you meet the hypermobile symptoms.
Finally, have you had your Vitamin D tested? I started adding a high dose Vitamin D supplement and it really helped with my neck pain over time.

Yes, hypermobility is a big problem. I have hypermobility in my joints and they hurt a lot because they are constantly cracking and popping. Actually, my kids call me Rice Krispies because every time I move, all you can hear is snap, crackle, and pop. I'm so sorry about your neck pain. I've had a lot of neck pain when I try to braid my hair, but I don't have it constantly like you describe. Keep looking for help, dear friend. Many blessings.

I also have a very sensitive neck. I have to be very careful about my posture all the time and can't even sit back on an ordinary armchair without it going out on me. My high backed recliner is my lifesaver and it's only since I bought a four wheel drive with a very upright seat that driving a car is no longer a problem.

The difference is that I know how my problem started - a motorbike accident which caused whiplash. I can't help with the CFS connection since mine isn't directly related, but I want to ask if you've ever been to see a chiropractor? I have found that the small misalignments a good chiropractor can detect don't show up on the tests doctors do, but can make a huge difference (eg migranes, dizziness, nausea, brain fog and even some fatigue).

Please note I said a GOOD chiropractor. There are some out there who are just bone crunchers and can do more harm than good.

Thank you so much for all the helpful information. I will check these out. No, I didn't have an upright MRI. I feel dumb for saying this, but I didn't even know they had upright MRI's. I am scheduled for my third MRI coming up (the lay down kind). Maybe I should wait and discuss the Upright with my neurologist.

Thanks! : )

I have constant neck pain every day and quite severe vertigo. I also wasn't aware of upright MRI's.I need to have my neck investigated more but keep putting it off due to my claustrophobia.I have had two MRI's a while back and had great difficulty getting through. There was some relief with my neck with osteopathic adjustments. However I am struggling to make appointments and also get there.I just get so overwhelmed with all of the things I need to do when I don't have the energy.

Meant to mention that I'm sorry you are suffering with so much neck pain and I hope you are able to find some explanation.Keep in touch .Hugs.

This happened to me with my back. It has improved but still have better and worse days.

i have neck pain just like you. i thought it was from my shoulder injuries but they have been gone for years. have the snap , crackle & pop too. will check out the brighton test. i go to a chiro, get massages & physical therapy. i walk out of the place & right back to same symptoms. the warm weather makes me feel better...good luck !