I don't want to be labeled crazy....

Five or six years ago, during a routine annual physical with my family doc, I told him I felt tired all the time. I would sleep for 7-8 hours a night, but wake up yawning, and some days felt like I was walking underwater, the exhaustion could get that bad. He sent me to an overnight sleep study, and that doc told me I had "mild" sleep apnea and made me use a CPAP. It not only didn't work, it made my migraines worse (I've had those since I was 13, and I'm 40 now). Frustrated with me for not using the CPAP anymore, the doc sent me packing with no other answers-yet I was still exhausted.

Another doctor, an internest (I don't remember why I was sent to him), looked at my test results about a year later, and asked me how long I had the Restless Leg Syndrome. I asked him why he thought I had it, since I was never formally diagnosed with it. He said the sleep study results clearly indicated RLS, not sleep apnea, but said nothing about a treatment plan. I was furious! The sleep doc NEVER told me the problems with my legs were RLS, though I told him I thought maybe I had it. I was put on Mirapex by the internest, but my exhaustion was coupled now with a horrible brain fog. I almost plowed into a couple of cars on my way to work when I fell asleep, WITH MY EYES open, driving at 50 MPH through a red light. I thought I was awake, but realized after hearing the honking and screeching tires, I couldn't account for 6 miles of my drive! I immediately stopped the Mirapex and resigned myself to being tired for the rest of my life.

I had been seeing the same neuro for the last 4 years for migraines, but nothing seems to work. I am on FMLA, and have to use it several times a year because I can't stop the migraines. And the neuro stopped prescribing me the only thing that got rid of the pain once it started, Tylenol with Codeine, because he was worried I was becoming addicted to it and was only seeing him to get narcotics. Okay, he would prescribe 20 pills with no refills, ONCE A YEAR. Yes, I had to make 20 Tylenol with Codeine stretch 12 months. Is that an addiction? I was still having the exhaustion, and worried this was what was causing my migraines. Neuro said no, it was hormonal, and to take Pamprin. In the last 2 1/2 years, I developed upper back and neck pain that caused a lot of headaches, just about every day, and oftentimes the headache would trigger an outright migraine. Neuro said it was probably a pulled muscle and not to worry. I complained at every visit, every six months, he said the same thing every time. Just take some Aleve, you'll be fine. More than 2 years of almost constant Aleve, and no change. At my last visit in May, when I complained again, he sighed loudly, rolled his eyes (yes, he did!), and said "Okay, fine, you win, I'll send you for some physical therapy to see if THAT helps"! I walked out of there crying and cried for several hours at home. My hubby ordered me to find another doc. By now, I was tired of seeing doctors that not only didn't help, but gave me different diagnoses of what I "probably" had (I heard that word a lot! Pain in my back and knees was "probably" arthritis, the pain in my arms was "probably" tennis elbow, pain in my neck was "probably" a pulled muscle, etc). One doctor even told me my problem was, get this, I was just an overworked mom and needed to learn to de-stress better. Huh?

The doctor I saw for my hit-and-run arm pain even looked me straight in the eye, and said "you probably have tennis elbow, but it's definitely not fibromyalgia, so don't even consider the idea, just put it out of your head!" I didn't even know what it was, let alone think I had it. That was almost 5 years ago. Nowadays, the pain in my arms, around the elbows, front and back, gets so bad I can't even lift a piece of paper. I finally broke down and scheduled an appt with a new neuro, knowing I had to find one so I could at least keep my FMLA for migraines. I filled out a 4 page questionnaire, and 20 minutes after walking into the room, he looked at me and said "you have fibromylgia". I said I couldn't, because I didn't think it was real, it was just something doctors said to hypochondriac patients to get them out of their office so they would stop bugging them. (My mother in law was diagnosed 2 years ago, but she IS a hypochondriac, so I dismissed it. And a sister in law, before she died unexpectedly, was diagnosed 3 years ago. I dismissed it too, since she weighed more than 400 pounds right before her death, and I figured her pain was simply due to the stress she put on her body for being morbidly obese. Her pain, however, got so bad, she bummed some pills from her brother in law, which turned out to be Methadone. She accidentally took too many and died of methadone overdose.) New neuro laughed, said it is most certainly real, and he is almost 100% sure I have it. For a second opinion, he is sending me to a rheumatologist, and a neurophysiologist for the cognitive and memory problems. He said he would see me again after those appointments and we would go from there.

All this time, all I really wanted was to simply stop being bone-weary exhausted all the time. After reading some of these posts and reading lots of articles on FM in the last couple of weeks, I am coming to the realization the doc might be right. On the list of 59 symptoms on this forum, I have 45 of them. The pelvic pain and pressure drove me to an ob-gyn recently, fearful I might have fibroids. All the tests came back negative, including a sonogram. She thinks I might have IBS. Now I see that is one of the symptoms. Looking back over the last 5 years or so, I can recall so, so many doctors visits for problems that the docs said they couldn't find. My worst fear recently has been that maybe I'm not really having the pain, the swelling, the muscle weakness, and the headaches are of my own doing somehow. Up until 2 weeks ago, I was afraid I was literally going crazy. I thought, what if it is really all in my head? I can handle a FM diagnosis, as long as I know for sure that there is a real problem-I can't handle being treated like I'm crazy, or a drug-seeker (which, by the way, I'm not-I don't like taking ANY pills unless I truly have to, even pain meds!), or a hypochondriac. Before being diagnosed, did anyone else doubt their sanity?

Shannon,

Welcome to the fibro family.  Your story sounds all too familiar.   So many of us have had to play musical doctors, been accused of being drug addicts, or have been called hypochondriacs.  I have gone to doctors since I was 15 years old (I'm almost 37 now) and been dismissed as depressed, crazy, drug seeking, or just needing to lose weight.  Finally, I found a doctor who would listen to me.  I was seeing him for chronic back pain when I found out that my sister had fibro.  I never really knew what it was, and when I mentioned my similar symptoms to my doctor, he suggested bloodwork.  I might also have Lupus, but after tons of visits with him and a rheumy, I was finally given the wonderful dx of fibro.  LOL-my sister and I have never had anything else in common, so why this?

After years of begging from my family, I just moved back home to SC, and I'm trying to live with my parents again.  I was on CA state disability, and I foolishly thought that every state had it's own state disability (it has nothing to do with Social Security).  Now, I am in SSDI/SSI limbo.  Anyway, I do have a new doctor (well, he's not really new, I saw him when I was about 13 years old) here who seems to listen to me and is willing to work with me.  He told me that he would help me try to get the Social Security.

To finally answer your question, yes, I doubted my sanity.  In fact, I usually doubt it on a daily basis.  I think I'm going crazy from the fibro fog, and my mom has a hard time understanding my pain and the "system" of Social Security.  I still find that strange considering she is a nurse who deals with painful patients.  But, I really think she must be in denial with me.  That's what I'm telling myself, anyway.

OK, I really hope that you'll feel comfortable enough to talk about things here.  We truly are a family.  LOL-sometimes we may annoy each other, but at the end of the day, we'd do anything for each other.

95% of the people I meet who have been to SC always bring up Charleston.  I have been there before, but I live in the complete opposite part of the state (Nothwest part, very close to the NC line) in Spartanburg.  No one I've met knows where it is.  But, when I was choosing moving companies to move back here, out of at least 50 different ones, I chose the one with the guy who used to live here.  Talk about a coincidence!

SC is a beautiful state.  After being in CA for 8 years (and in GA for almost 7 before that), I am in awe of the leaves changing colors and the crisp fall air.  I always hated Xmas in CA.  I'm sorry, but what is "Christmasy" about 75 degree, sunny weather?  It's not like it snows 10 feet here (it doesn't snow much at all), but at least it feels like the Xmas I had growing up.

Shannon I'm glad you got a dx at least. These doctors make you want to scream.

Kelly, one of my grandmother's family came from Spartanburg and that is the one place I have not gone to do genealogy research. We are taking a winter vacation this year so maybe we will make it down there. Our oldest son lives around Ft. Bragg NC.

Wouldn't it be strange if you are related to me. Do you know any Cannons, Bryants, Dillards or Wyatts??? Geez, you have nothing better to do you can go do some research for me, do you like cemeteries???

luv and hugs

Marlee