Originally Posted by loves2quilt
I was diagnosed several years ago but I know Ive had it longer than that. Like some of you I have been active my whole life, very physically demanding job, on the go all the time. Then I had neck surgery and it all went downhill from there. Extreme vertigo, fatigue, numbness in face, joint pain, on and on. It took several years and many doctors before I found out was wrong. I have no faith in doctors anymore. It seems they just DONT LISTEN!! When you are describing your symptoms they get hung up on one of them. Oh, you have vertigo, must be an inner ear infection. Headaches, heres a pill. Cant sleep, heres a pill, etc. I finally went to this wonderful doctor who actually sat down and spent about an hour with me, listening. He ran a battery of tests to rule out RA, MS, Lupus, checked my thyroid, diabetes, and alot more. When I went back for the results he spent time explaining things to me. Put me on Cymbalta, which did nothing but make me gain weight, then tried Lyrica and that stuff messed messed me up! Unfortunately I moved. And I havent been back to another doctor for it since then. He did say that since I had absolutely no problems before the surgery he believed that triggered it. Lucky me.. I am in pain daily and I have learned to deal with it. The joint pain in my hips and shoulders is always there, always, and I deal, but when I have a flair, thats another story. Bone deep pain and extreme fatigue. I told 2 friends about it after a few years of them wondering what the heck was wrong with me. Printed out this letter to friends for them, and it was like, oh that sucks, cant you just take some meds? Hello? Did you even really read what I just gave you? So now when we talk I never tell them how I am really doing. A few family member know and thats it. I have been reading everyone story here and wasnt going to say anything, then I saw how many others had it. I take no meds and its hard somedays.
I hear you! I don't talk about it either. No one wants to hear about it. We have a young friend here who is going through nursing school. They had a session on lupus and fibromyalgia. Her comment was "No wonder _____ doesn't want to go anywhere. lupus and fibromyalgia is awful." Just getting ready to go anywhere is a major ordeal and I'm exhaused before I leave the house. I have to weigh things out and seldom commit to anything in the future. After a while, I just wasn't invited anymore. Another problem I had, was that just because I'm old enough to be a grandma, everyone with little ones thougt I should babysit for them. Hello!!! I love the children and the families, but I don't want to be responsible for them. My kids are all grown and I still can't do what I want, when I want. My best doctor was in the pacific northwest and am still trying to find a good one here. I was sent to one rheumatologist who sat filling in blanks on her computer the entire visit and barely looked at me!!! Didn't go back to that one. Sheesh!