Re: have i fibromyalgia
I know how you feel.
I've seen my pcp, 3 neurosurgeons, 1 neurologists, 2 pain management doctors, and am being referred to a endocrinologist. I've had MRI's on my brain, lumbar, thoracic, & cervical region of my back, 3 EMG nerve tests, TONS of blood tests, & have a nuclear bone scan scheduled for Monday.
I've taken gabapentin (the generic for Neurontin) to help treat my body twitches / jerks during the day & night. I recently was switched to Lyrica and the main difference between the two is Lyrica has helped me think more clearly as if a cloud has been removed from my head.
My pcp, 1 neurosurgeon, and my PM doc has mentioned that if they are not able to find anything that it's fibromyalgia (FM). FM is a diagnosis of exclusion a "trash-can" diagnosis if you will in that your doctors will pretty much test anything and everything. If they are unable to pinpoint something specific they will label it FM.
There are some markers to help the doctors know if it is FM. They will test tender points throughout your body. You have 9 pairs (18) that go throughout your body. Some doctors believe you must have 11 out of 18 and some doctors throw that belief out the window. I've been told some other markers are low vitamin D level, sensitivity to sound, light, & smells. Some other are moderate-severe fatigue, insomnia or unrefreshed sleep, Restless leg syndrome, morning stiffness, ADD symptoms, IBS, chronic headaches or migraines, pain in your face or jaws, anxiety or depression, tingling in your extremities, feeling of muscle fatigue (like you worked out really really hard and you've done very little and it affects you for multiple days), elevated levels of substance P which can only be tested by a spinal tap, and the most experienced symptom is wide-spread pain in upper / lower part of your body on both the left and right side.
No one is quite sure how people get FM, some people think it is after a tramatic experience, horrible virus, or something like that. Sometimes getting a diagnosis is a hard and long road. I'd push that your doctors do as many tests as possible, be referred to other specialist, and do anything and everything imaginable. If diagnosed with FM there is no cure and the doctors can only treat your symptoms. It is something that you will have to deal with for the rest of your life.
I presently having to take Opana ER 20 mg (1 am & 1 pm); Opana 10 mg (1 every 6 hours); Baclofen 10 mg (1-2 every 4 hours); Cymbalta 60 mg; Lyrica 300 mg (150 mg am & 150 mg pm); Maxalt 10 mg for migraines. These medications help me tremendously, but I am on short-term disability and my PM doc wants to try something called Savella to see if that will help reduce my pain, because what I am on makes the pain tolerable, but I am not able to do much of anything.
I hope this helped and hope that you get answers, relief, and support.
"If you have ignorance about something seek knowledge, because ignorance breeds hate and hate breeds destruction."