Eric's Story

My wife wanted me to post my story on fibroguys, on the theory that it would be therapeutic, and maybe somebody would have a helpful observation. I'm not much for telling stories or talking about myself, but here goes . . .

I'm twenty-eight years old. I'm not athletic, and I'm a little overweight, but not tremendously so (I weigh ~190 lbs, and am 5'9"). For as long as I can remember, I've had intermittent pain in my legs, starting at my knees and going down. Never crippling, but it's been going on a while. My mom was diagnosed with fibromyalgia when I was about fourteen. She wondered if I might have it, but I never thought I did, because my pain was not widespread, and was not nearly as intense as hers.

Seven years ago, when I was in college, I passed a kidney stone. It was the most excruciating pain I've ever been in, even though it wasn't a big stone. I lost the stone itself before I could bring it to the doctor, so I never found out why I had it, but afterwards, I found myself having to pee more often. Not much more often, mind you, but I felt like I wasn't quite the same.

I've never been an early riser, and I can be kind of cranky in the morning, but three years ago I started having real problems waking up in time for work. I was tired all the time, and I kept getting these recurring headaches. I went to see a doctor, and I was put on antidepressants -- I don't remember, now, exactly which ones, but I spent about a year getting kicked around from antidepressant to antidepressant. Some of them gave me pounding headaches, and some of them didn't give me many side effects, but none of them ever made me any less tired. At around this time, I started taking a pill called Uroxatral, for Benign Prostate Hyperplasia (swollen prostate, which makes you have to get up at night to pee). I was getting up at night less, but I was still exhausted during the day.

After trying enough antidepressants, I went to see a sleep specialist. I had a sleep study and was diagnosed with moderate sleep apnea. The problem was, the treatment for sleep apnea (CPAP), never made me feel any better when I woke up in the morning. I tried several different flavors of PAP (BiPAP, auto-titrating PAP), but nothing helped, and they all chafed my nose something fierce and made it hard to sleep.

After six months of jacking around with CPAP, I finally asked my PCP if I might have fibromyalgia. He sent me to a rheumatologist, who made a tentative diagnosis of fibromyalgia, based on a tender point exam. He prescribed Lyrica, which I faithfully took for about two weeks.

Lyrica pretty much stopped my pain, but I could never take more than 50mg -- the standard dose is 300mg -- because it would make me feel so much more tired than I already was, which was after all the problem that I originally went in to treat. I eventually stopped seeing that rheumatologist, because he was completely useless, and went to see a fibromyalgia specialist.

At this point, I had run out of intermittent FMLA leave at work. I had to take an unpaid medical leave while I was getting treatment from the fibromyalgia specialist. After several thousand dollars of treatment and about six months of unemployment, I started to feel better. I went to the gym and worked out during the day. I even started sleeping less! After ten months of being out of work, I returned to work part-time, at my old job.

But, that was seven months ago. Since then, I've gotten more sick again, and I'm more exhausted than I ever was. I no longer go to the gym, because I am too tired. I have more headaches, sleep worse, and have less sexual energy than ever. Worst of all, I get those recurrent bouts of dizziness more often.

The hell of it is, I don't really know if I have fibromyalgia. I know that men usually experience less pain than women when we have it, but I know if I have enough pain to qualify. My pain is usually in my joints, particularly my wrists and ankles. It is not nearly as debilitating as the fatigue, or the bouts of dizziness. But, my blood tests have always come back "normal," with no explanation for the fatigue, or the dizziness, or anything else.

I figure that in the three -- or is it four, now? -- years since this has started, the direct costs and the lost wages have cost me at least eighty thousand dollars, and that's certainly not counting the friends I've lost touch with because I don't have the energy to communicate with them, or the awesome cars I don't have the time and energy to restore and drive. I am extremely blessed to have my wife (who married me anyway, even though I got sick after we met), and a decent job, but I am terrified that this is going to keep getting worse and worse.

Man, this is depressing. I'm going to go look in some of the other discussions.