I'm a 33yr old female who has suffered from neck twitching/spasm most of my life. I can remember twitching in my neck/shoulder as early as age 10. My mother took me to the doctor and was told it was "growing pains", so I suffered through it. Then when I was 13, I had a hairline fracture in my neck due to a horse fall. I was in pretty severe pain after that and the twitching became worse. Two years after that I had another severe fall which resulted in a concussion. I should note that due to riding/training horses, I've had a number of falls throughout my life, the first of which happened when I was only 2 years old. I've had at least 20 falls that I can remember off hand.
I dealt with the pain/twitching throughout my entire late teens/early 20s. When I was 23, I started chiropractic treatments, went 2-3x a week for 3 months. No significant improvement. I had another injury when I was 26, landing on my left shoulder and hitting my head (on concrete, no less). The left side is the side that twitches and after the injury it became even worse.
I went to an ortho who seemed utterly uninterested in discussing my twitch. Did physical therapy for a few months, and the therapist noted that I have unsual muscle spasm and twitching but the doc still wouldn't do anything but lecture me on having better posture.. Finally, when I was 28 I went to a rheumatologist who diagnosed me with Fibromyalgia and put me on Neurontin, which helped somewhat but the twitching never actually went away. I went back to another ortho last year, who ordered an MRI. The ortho tells me "There's nothing wrong, you need to go see a pain management specialist." This really frustrates me. If there's "nothing wrong" , why do I need pain management? Obviously there is SOMETHING WRONG and it's been wrong for a very long time.
At this point, I started doing message therapy, which helped a bit, but even my massage therapist commented on how severe my muscle tension was. I'm so sensitive that it's hard to even work on me with traditional massage. He mostly had to do a lot of stretches with me.
I went back to the chiro last months, who told me my C1 was severely out of place. the chiro treatments do improve things but the twitch never goes away. I've also developed a visible swelling between my shoulder blades. I'll also note that I'm not prone to bad posture so I don't think bad posture is causing the hump on my back.
My situation is very embarrasing because I'm constantly twitching my neck to the side and it seems to get worse when I'm upset. I've become very self conscious about it. I'm now in near constant spasm and it's becoming miserable. I have an appt with my primary doc in the morning and I'm going to request a referral to a neurologist since that's the only thing I haven't tried yet. I'm so stressed and frustrated. I really don't think this is caused entirely by my fibro, though I'm sure it exacerbates thingsl. I've spent 23yrs suffering and I want to know what's wrong with me. Has anyone else had similar experiences? I'm so frustrated with being shuffled from doc to doc, running this test and that one,and never getting a diagnoses....