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Chronic Undiagnosed neck/head pain
by MiewMyoo, Mar 31, 2008 07:22PM
Here goes... I am 24 years old and have been suffering from chronic neck pain for about thirteen years. It started out with minor headaches and general stiffness. As I grew older, and especially in the last five years, it has gotten progressively worse at a quicker pace. I have good posture and am in good shape.
On a scale of one to ten, at best the pain is ever maybe a two - not that bad, but still definitely there. At the worst it is a nine, which finds me curled up in bed, sobbing and unable to move, talk or think because the pain is so bad. The pain feels like it starts at the very base of my skull, on either side of my spine (sometimes one side is worse, but it is not the same side - it switched from side to side, and usually is on both sides). My trapezius muscles and all neck muscles are so tight (likely more a symptom of a decade of chronic pain than a cause) that they are almost had as rock at times. I've been able to determine that the pain generally follows the three occipital nerves and either causes or exacerbates TMJ symptoms in my jaw. The pain includes areas painful to the touch at the base of my skull, shooting and pounding pains along the occipital nerves, stabbing pain behind my eyes and at my temples (sometimes on one side or another, sometimes both), severe nausea that does actually cause me to vomit if it gets bad enough, throbbing and constant headaches.
I have been journaling the pain for the past months - daily weather, symptoms, what I have been doing at work and leisure as well as what I have been eating - and neither I nor any of my doctors have been able to find any patterns thus far. I do know that holding my head in certain positions (for example looking up and down between my desk and computer screen or singing in the car with my head tilted back a bit) will exacerbate and bring on pain. I generally cannot drive or be a passenger in a car for more than a half hour without being in pain. I have to leave work on a regular basis due to being in so much pain that I cannot complete or concentrate on my work.
For treatment I have seen a chiropractors, had physical therapy, craniosacral therapy, massage therapy, ultrasound and seen various specialists. I have had XRays (everything looked fine), a cervical spine MRI (showed nothing but very mild degenerative disk), done many exercises, tried working out, tried taking it easy. I have been prescribed an anti-inflamatory (Naproxen) and the antidepressant amitriptyline off-label for chronic pain. Neither of those had any success. I am currently on Tramadol for pain, which does not decrease the pain at all but the doctors are hesitant to prescribe anything stronger for chronic pain which I can completely understand. I have also been on the muscle relazant tizanidine, which helps in that when the pain is bad at night it at least knocks me out enough to let me get some sleep.
Prior to my MRI, my pain specialist was pretty sure I had occipital neuralgia, but when the MRI came back showing nothing he wasn't so sure. I am wondering if I should have an MRI of the top of my cervical spine through my skull. I also think my next step is to have a nerve block to see if I can pinpoint from where the pain originates. Beyond that, I am at a loss. Everyone says I am too young to be in this much pain and have no one be able to figure out what it is. I think the worst part is not having an answer as to the question of what is causing all of my pain. Does anyone out there have any ideas at all?
Thanks for reading this far. I appreciate any help, thoughts, ideas or guidance anyone can provide.
Sincerely,
Keri
On a scale of one to ten, at best the pain is ever maybe a two - not that bad, but still definitely there. At the worst it is a nine, which finds me curled up in bed, sobbing and unable to move, talk or think because the pain is so bad. The pain feels like it starts at the very base of my skull, on either side of my spine (sometimes one side is worse, but it is not the same side - it switched from side to side, and usually is on both sides). My trapezius muscles and all neck muscles are so tight (likely more a symptom of a decade of chronic pain than a cause) that they are almost had as rock at times. I've been able to determine that the pain generally follows the three occipital nerves and either causes or exacerbates TMJ symptoms in my jaw. The pain includes areas painful to the touch at the base of my skull, shooting and pounding pains along the occipital nerves, stabbing pain behind my eyes and at my temples (sometimes on one side or another, sometimes both), severe nausea that does actually cause me to vomit if it gets bad enough, throbbing and constant headaches.
I have been journaling the pain for the past months - daily weather, symptoms, what I have been doing at work and leisure as well as what I have been eating - and neither I nor any of my doctors have been able to find any patterns thus far. I do know that holding my head in certain positions (for example looking up and down between my desk and computer screen or singing in the car with my head tilted back a bit) will exacerbate and bring on pain. I generally cannot drive or be a passenger in a car for more than a half hour without being in pain. I have to leave work on a regular basis due to being in so much pain that I cannot complete or concentrate on my work.
For treatment I have seen a chiropractors, had physical therapy, craniosacral therapy, massage therapy, ultrasound and seen various specialists. I have had XRays (everything looked fine), a cervical spine MRI (showed nothing but very mild degenerative disk), done many exercises, tried working out, tried taking it easy. I have been prescribed an anti-inflamatory (Naproxen) and the antidepressant amitriptyline off-label for chronic pain. Neither of those had any success. I am currently on Tramadol for pain, which does not decrease the pain at all but the doctors are hesitant to prescribe anything stronger for chronic pain which I can completely understand. I have also been on the muscle relazant tizanidine, which helps in that when the pain is bad at night it at least knocks me out enough to let me get some sleep.
Prior to my MRI, my pain specialist was pretty sure I had occipital neuralgia, but when the MRI came back showing nothing he wasn't so sure. I am wondering if I should have an MRI of the top of my cervical spine through my skull. I also think my next step is to have a nerve block to see if I can pinpoint from where the pain originates. Beyond that, I am at a loss. Everyone says I am too young to be in this much pain and have no one be able to figure out what it is. I think the worst part is not having an answer as to the question of what is causing all of my pain. Does anyone out there have any ideas at all?
Thanks for reading this far. I appreciate any help, thoughts, ideas or guidance anyone can provide.
Sincerely,
Keri
Member Comments (2)
by MiewMyoo, Apr 01, 2008 07:33AM
I forgot to add, and can't figure out how to edit my posts, that I also get numbness in my arms and hands as well as my lips and cheeks. It is not there constantly and gets worse as the neck pain gets worse.
by terri1234, Apr 01, 2008 09:28AM
To: MiewMyoo
I too have had facial problems that doctors don't understand even tho I am pretty sure it comes from my back. I know its weird. But we know our own bodies don't we. I had botox once injected in the muscles in the back of my neck and I do believe that helped tremendously with headaches. I also had a fusion on my neck C4-C7 and that helped with my arm pain. Now I need them to focus on my back. But I do believe if you find a good pain clinic they do help. Surgery is not always the answer. hope this helps.
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