My Decade-long Struggle with Undiagnosed Chronic Pain

According to a 2005 article in "USA Today", nearly 1 in 5 American adults (that's approximately 19%) suffer from chronic pain. The same article states that "Patients hopscotch from doctor to doctor for years before they're given an accurate diagnosis, pain specialists say, and it may take even longer to find appropriate care. "

I'm a 32 year old woman. I put my own emphasis on the word "old". That's not old, really. In fact, it's quite young. However, I don't feel young. Not at all. I've got creaky knees, a big toe I can barely feel, and an arm that sometimes doesn't function properly. I joke to my husband that I don't see how I'll make it to the ripe old age of 80, sitting on that rocking chair on our front porch (like we've dreamed about since before we got married). I might be in a nursing home, or perhaps not around at all.

To be honest, I don't even know when it all started. With each disease and disorder I've been tested for, or it's been suggested I be tested for, I can think back farther to a moment when there was a "trigger" or a catalyst for something down the road. I remember back in junior high and high school, suffering what I thought were "growing pains". (I'd be walking around school, almost limping sometimes, in pain). However, it always struck me as odd, that a girl in her teens (who really stopped growing by the age of 13), was still having them.

In an article called "Approach to the Child with Arthritis", by Thomas J.A. Lehman, MD (Professor of Clinical Pediatrics, Weill Medical College of Cornell University), Dr Lehman says that "children should never have growing pains during the day. Growing pains are a night-time phenomenon. Sometimes they may wake the child up in the middle of the night, but when that child wakes up in the morning, he should be fine. If he isn't fine when he wakes up in the morning, it's not growing pains."

Do I have arthritis? I have no idea. I have not yet been referred to a Rheumatologist, who specializes in arthritis and related diseases. Growing up, I rarely saw doctors. I don't know if it was because my parents did not have medical insurance, or because they did not believe anything my sister and I experienced was serious enough to warrant professional help. Either way, it was not until I was out of high school that I started seeing a general practitioner with any regularity.

Sometime between late 1997 and early 1998, I started experiencing this bizarre tightening, pulsing sensation in my left arm. At first it was like I slept on it the wrong way, or for too long, without turning over. But it didn't go away. It was off and on for a while, then really hit with a vengeance in the spring of 1999. By then, I was married. My husband and I were in Biloxi, Mississippi, where he was stationed in the Air National Guard, for tech school. That April, the pain was not just in my arm, but in the left side of my chest, as well. Breathing in was a nightmare, that sent shooting pains down my arm. Movement - sitting up out of bed - was agonizing at times. I went to the Emergency Room, hoping that somebody could help me. However, no such luck. They took a chest x-ray, did an EKG, and I think even drew blood. Nothing funny showed up whatsoever. I honestly think they thought I was nuts!

At that point, I was a little discouraged. I stopped taking my birth control pills, because I read that if you've ever experienced chest pains, you should not take them. But the pains didn't go away. Once out of tech school, when my husband got a better job (one that didn't require bagging groceries), and better medical insurance, I decided to seek help again. This was the summer of 2001. I was tested for carpal tunnel, had another chest x-ray, and yet another EKG. Of course, wouldn't you know it, all seemed "normal".

What does a person do at that point? Give up? Think maybe they really have nothing wrong with them, and that they're just a hypochondriac? According to Wikipedia, "Hypochondriasis is often characterized by fears that minor bodily symptoms may indicate a serious illness, constant self-examination and self-diagnosis, and a preoccupation with one's body. Many individuals with hypochondriasis express doubt and disbelief in the doctors' diagnosis, and report that doctors' reassurance about an absence of a serious medical condition is unconvincing, or un-lasting"

I'm sorry, but in my case, I just don't buy that this is all in my head. I'm sitting here with a cramp in my left thigh muscle, that feels like nothing less than a vice grip on my leg. The pain is real. I even have the lousy family history to back me on this- that something is wonky, only nobody seems to know exactly what it is. My mother has Multiple Sclerosis, another relative has severe Gout (I mean all over the body), there are a half dozen relatives all diagnosed with FMS (fibromyalgia), and some with chronic pain who have yet to be diagnosed with anything. What's more scary, is that all of these things are autoimmune diseases (or disorders), and whatever I have could have contributed in some way to my son's Autism.

My Neurologist is great. So far, she's tested me for MS, Lupus, Celiac Disease (which is apparently is now being linked to various neurological disorders), has even ruled out FMS- as apparently I "just don't quite fit the profile". Upon my request (based on various chronic symptoms, and a tick bite in my past), she has even offered to test me for Lyme Disease. I think at this point there isn't much more she can do, though. I don't want to keep taking meds for pain, when I don't know what is causing the pain. I don't want to take muscle relaxers for cramps that actually increase when I take them.

I want somebody to look into why my knees are creaking (and feel warm) at age 32. I want somebody to get serious about my chest pains (especially left-sided chest pains). I want a doctor to think "out of the box" for a change. I don't want to feel like I'm wasting my money on tests for things that keep coming back "negative", time and time again. I want to know what the heck I have, and to start treating it. I need this for myself- I need this to be a better mom, and to be a better wife. I don't want the next several decades of my life to be spent worrying "what is wrong with me?!"

I hope and pray that all of us suffering from (undiagnosed) chronic pain will find the proper diagnosis, and the proper treatment (and/or cure) needed to make us well.