I saw your comment and thought it sounded like myofacial pain syndrome. I am glad you found some relief, and yes most people do not follow-up unless you are in a "clique". Thank you for posting and good luck to you.
Just wanted to do a follow-up post to this question. One of my biggest frustrations during this whole process has been seeing open questions that sound like close descriptions of my condition, only to read to the end of the thread and see that no one ever comes back to explain to the community what they've found out.
If you're having muscle spasms of any kind in any location, by default I would at least look into something called Chronic Myofascial Pain Syndrome. JFK's personal physician wrote a book on the subject, called Myofascial Pain and Dysfunction: The Trigger Point Therapy Manual. It's a well-established, widespread condition that, unfortunately, not too many physicians are aware of. Basically your muscles develop hyper-irritable knots in them, which then refer pain to other areas. Different trigger points have different pain patterns, so a trigger point in your shoulder could be giving you a headache, etc.
Another great resource that differentiates between Chronic Myofascial Pain Syndrome and Fibromyalgia (while providing great information on both) is Dr. Devin Starlanyl's website: http://www.sover.net/~devstar/ (The key difference between the two is FM entails widespread pain while CMPS entails pain points/trigger points).
Her website even has information sheets you can print out to bring to appointments. Apparently, she has both CMPS and Fibromyalgia, but was unable to find treatment for several years until she stumbled across the book I mentioned earlier. She has written a book herself, and I would advise you to go to Amazon and look up any book on trigger points and chronic myofascial pain.
If you're suffering to the degree that I am, please look into this stuff. If you have Fibromyalgia, it can be managed very well with the appropriate treatments. If, like me, you simply have Chronic Myofascial Pain, then you can most likely be cured (pain free), with the provision that you get body work done whenever you start to develop a trigger point again.
Wow, thanks so much for your reply. I hadn't considered tick disease as a potential explanation, so I'll definitely be looking into that. Which lab tests did they do for you, and which lab actually ran the tests? What treatments have you had since being diagnosed, and have they helped? Thanks again!
For me I was diagnosed with MFS and FM later (12 yrs.) to find it is Borreliosis, Babesia and Mycoplasma. Three tick diseases. I was tested in basic labs with neg. results all these years. There are very few specialized labs that do these tests right. You need a Lyme literate doctor. ILADS and Lyme disease assoc. Sites have help with that.
I feel your pain, it is horrible.