Hi everyone I'm Carmen and am an undiagnosed sufferer.
I suspect that I may have fibro, but am not sure. I read a little on here and even read the fibo 101 article, and still, I'm unsure.
My mom was a diagnosed sufferer, and she went through diagnosis hell (can we say this here?). For many years she was told that her pain was all in her head. This is during the early 70's when fibromyalgia was unheard of. She was finally diagnosed in the late 90's. For many years she was on "nerve meds" "sleeping meds" etc... she was a regular walking pharmacy.
Now back to me. The first part of my life has been awesome pain wise. I thought maybe I had escaped my mom's unfortunate genes and would not suffer what she suffered. Well at the age of 45, my brother came to live with us. Let me just say that he's the type of young man who pushes my buttons. I resent him, and I felt that he was in my space, to make my life difficult. I was a mostly a good girl and retained my anger fairly well during this time.
One day, while on a wonderful camping trip, I started limping. My left ankle felt like I had sprained it so badly that I couldn't walk on it. This lasted 2 days and then the pain suddenly left... just to start up on my right ankle. This made no sense to me. Although I'd never had a broken bone in my life, this felt like I had broken my ankle, including swelling. Once again, it lasted only a few days, but during those days, it was so bad that I had to put a pillow under it to support it. Any movement in bed would wake me up yelping.
Shortly after that episode, I started getting pain in my left wrist, and sometimes certain fingers... then that pain would leave and move to the other hand. For a full year and a bit, it would move from one area to the other. My neck, shoulders, upper back, hips, knees etc.
I think my worst episodes was when it would wake me in the middle of the night with tingling and burning. It felt exactly like when someone gets frostbite and it starts thawing out. That burning agony was horrid. It would be so bad that I'd be crying. I felt like I wanted to cut off the limb that hurt.
I went to see the doctor, but wouldn't you know it, by the time my appointment came around, the pain wouldn't be there. He told me to keep a journal and gave me some pills for the pain. He doubted that I had fibromyalgia when I mentioned it. Why? Because, I'm not typical. (will explain later). One day, about
3 months after my first appointment, I'd been in pain for almost a week... this time it was the ankle again. Because my doctor wasn't in, I saw another doctor, and he looked at my ankle and i felt vindicated (at least it was apparent that I had a real hurt). He actually thought maybe I have gout. Gout? Me? I don't drink alot. He told me to avoid certain foods (wine, red meat.. all the good stuff). Well being the bad girl that I am, I eventually went back to all the no-no's.
This lasted a little more than a year, and I could not be counted on to care for my family. My husband had to take over making dinner as I couldn't lift pots, or peel potatoes reliably. Some days I could, some days I couldn't. My husband hired a few cleaning ladies for me (I think that was the best part of being sick
Then my brother moved into his own place. A few months later, I started noticing that the pains started easing off. They were there, but felt more like bruising, not painful like it used to be. I can live with bruising and do it happily. My brother has been gone for over a year... I haven't had any of those debilitating episodes for about
a year now.
I rejoice in being "pain free".
I've been drinking wine, eating red meat, and ingesting all the stuff I wasn't supposed to without "gout" symptoms for over a year, so I don't think gout was the issue.
Why would my doctor doubt I have fibro? Well because I'm not typical. I sleep fairly well. I understand that sleep issues are very common. I'm not saying I'm a perfect sleeper, but I have no problems falling asleep. I don't get headaches, and I don't think I have the pressure point pains either.
I've always had very very tender skin on the upper arms. I can't be squeezed or poked there or it feels like someone gave me a noogie and it hurts for a long time... that's the only real tenderness that I know about
I noticed that for the last few days, my left foot has started hurting again. Not so much tingling (I'm afraid!) but I limp when I walk. It's like the cartilage on the top of my foot is injured. Advil takes care of the pain pretty well... but I'm so afraid I'll get another episode of pain in my life again.
I really count myself lucky that I don't suffer like you guys are, but I'm getting scared that I may find myself in your situation in the future. I'm afraid, yet it would be really nice to know why I went through what I did.