@sandra319 I’m desperate to compare notes with someone who has been officially diagnosed .

This is what has be happening to me. If I feel the least amount of anxiety, or stress my neck tightens, my entire arm, hand and fingers spasm very quickly. The spasms spread to my other arm, neck, lower back, both legs, and down to my toes. Sometimes my head starts to shake too.
The most fearful time is when I have been standing usually in one place and my back tightens up and becomes very painful. At that point, I MUST SIT DOWN. Terrible pain that causes my voice to change as I cry out. Of course the spasms sometimes don’t show up. After an attack, I am totally exhausted.

Does this sound familiar?