Join Date: Aug 2007
cervical "nerve damage"? - disability??
I have a problem, and may possibly need an alternate diagnosis. I am really frustrated and tired at this point. After 17 years of chronic pain and degenerative symptoms, I was diagnosed with Chronic Myofascial Pain (CMP) and possible "nerve damage" last year (whatever that means - "nerve damage"?). This was when I was working full-time and had health insurance. I am now a full-time college student with no insurance. I never found out where this suspected "nerve damage" was, so the only diagnosis I have is CMP. I have all of the following symptoms and more, getting progressively worse since I was around 12 years old:
-extremely stiff neck with very limited movement, for 17 YEARS
-constant but migrating pain in my upper back, shoulders, and chest muscles (sometimes it is on the right, sometimes the left). This is NOT "burning" pain, or like pin pricks or needles, it is acute "STABBING" pain, sometimes feeling as if it is deep in the bone itself, I don't know how else to describe it.
-severe difficulty sleeping because of stabbing pains in back
-migraines (headaches with nausea and dizziness), severe light sensitivity
-chronic "frozen shoulder"
-chronic attacks of what one Dr. called hyperesthesia (a feeling like all of my hair follicles are being rubbed the wrong way, extremely sensitive to anything touching me, or even a breeze against my skin)
-extreme muscle weakness in my arms and legs
-inability to grip a pencil tightly enough to write legibly (I tested negative for carpal tunnel, but I knew that wasn't the problem, anyways. Pfffft.)
-sudden muscle spasms and severe twitches, causing me to drop things, knock things over, and sometimes to become temporarily disoriented (this is mortifying, I am only 30 years old!)
-short term memory loss becoming progressively worse, I am often going into different rooms of the house and have no recollection of why I am there or what I was looking for, as if I was senile.
-a general...fogginess? I was always an A student when I was younger, in the top 1% of the U.S. on all standardized tests, in honors classes, started college at 15, etc., but I feel as if my IQ has dropped significantly. I have trouble focusing on more than one thing at once, and remembering the simplest words, whereas I used to be like a dictionary.
-very poor judgement of distances (I walk into things even in my own apartment, despite the fact that they have been in the same spot for years, and I had a really hard time in driver's school, eventually giving up on it altogether).
-shaking/twitching while my body is at rest. My hands shake pretty badly, and I spill things WAY too often.
-slurring/stuttering/stumbling over my words, whereas I used to be very eloquent.
-narcolepsy...? (uncontrollable sleepiness, nodding off despite trying desperately to fight it off, blacking out at inappropriate times. It is like I can't get a deep enough breath of air, and I can't get enough oxygen to my brain all of a sudden)
-my feet swell up and turn purple when I'm on them for more than a few minutes (probably unrelated, and this is even worse when I'm menstruating, so that I can barely walk at all without help)
-when I'm sitting for too long, my hip bones, tail bone, and thigh bones start to ache (as opposed to my muscles aching, it is more like I'm actually feeling the bones ache)
Possible "nerve damage" causes?:
-I was X-rayed and diagnosed with scoliosis, an extreme curvature of the spine, when I was 12. I was told that I may need to wear a metal brace for the rest of my life. After seeing a chiropractor and being in traction every day after school for 1 year, new X-rays showed the curvature to be minimal. However, the pain in my neck remained.
-In 8th grade I was hit in the upper back, right between 2 vertebrae, by a baseball traveling at a very high speed. It knocked the wind out of me for several minutes, and I was in severe stabbing pain, but so embarrassed that I refused to call attention to myself. I sent myself home early afterwards and my mother put ice on it. Probably not it, but I note this because while the rest of the pain migrates, this is a spot that has never NOT been in pain.
-After a work injury 5 years ago (cervical strain), I had X-rays that showed nothing except for that miniscule curve in my spine, and the fact that my neck curves backwards into my skull (which is to say, it curves forward). The Dr. did not seem to think this was a big deal, though. But it certainly looks really weird.
And these were diagnosed as endometriosis:
-extremely painful menstrual cramps
-severe flu symptoms the week before and during my period
-the already noted swelling of my feet, so badly that I need help walking for the first day of my period
-periods are sometimes several weeks late
-migraines that last from a couple days before through the duration of my period
-sneezing a lot during my period, but not at any other time (it is all as if I'm allergic to menstruation!)
-short but heavy periods (2 or 3 days, thank goodness)
-infertility, inability to get pregnant
-I have a pretty low body weight considering the amount that I eat (I eat healthy, but I eat a lot - I am incessantly hungry, and if I don't eat for just a couple hours, I start to get faint and break into a cold sweat, so I always keep snacks in my purse now)
Okay, now my problem, aside from the fact that I may be misdiagnosed and I haven't had any neurological tests except to check for carpal tunnel:
I take Flexeril for the muscle spasms and the shakiness (the only medication I take, aside from multi-vitamins), but even without it my muscles are extremely weak and unpredictable. I sometimes find myself in situations in which I am expected to operate heavy machinery or to do precision work with chemicals that I am expected not to spill. For instance I am taking a REQUIRED course right now in which I need to use power tools including table saws, and work with various chemicals (I'm a theatre/film major, and it's a production workshop that everyone is required to take to receive a degree). This is a danger not only to me but to the people around me, and I'm a little terrified, needless to say. It's not like I'm just knocking over someone's glass of water like I usually do. My problem is that, not having any diagnosis that is recognized by the state of California as a disability, or even as a disease, I have no excuse not to do the same things that the healthy young people around me are doing, despite the fact that it is clearly dangerous for me to do them.
Does anyone have any advice?? And can anyone point me in the right direction?? The CMP and "nerve damage" are vague, but before that all my many doctors could come up with were depression (and I can not tell you how depressing THAT is!) or hypothyroidism (but my thyroid levels have been normal for 10 years)... Oh, and I don't have osteoperosis. And although I know I have all the symptoms of Lyme disease, I live in California (I used to spend summers in New Jersey swampland as a kid and can remember getting ticks on my clothing, but I can't remember ever being bitten by any, and it seems like I'd remember that!)
Oh, and the only thing I've found that seems to help with the pain at all is acupuncture, oddly enough. I just can't afford to do it more than once every few months, and it only helps for a few days, then starts to wear off and all the pain is back again. Anyone have any suggestions as to what I should do, about the class and about whatever the heck is wrong with me? THANK YOU!