Hi nsbennet,
Unfortunatley I know exactly what you're going through. My symptoms began a few weeks before my 24th birthday. I was working full time, living with a friend in the city, going out on weekends - basically working hard and playing hard My symptoms came on very quickly and some were very severe and serious. I was constantly at the Drs office and having more and more tests done. I was seeing specialists weekly, I had to temporarily stop working and move home with my parents so I could be taken care of. I finally got the official Fibro diagnosis after 8 months. It is believed that a virus caused the Fibro for me.
I was able to start on medicaiton and slowly return to work. After 6 months of living at home I was able to return to the city and be independent again. Learning to live with a chronic illness was and is very difficult for me. Being young when the Fibro first set in I was scared for my future. I was scared that I would be seen as "damaged goods" and no one would want a life with me, I was scared for my future and of being able to have a family and I was scared about being in pain for the rest of my life.
Well I am now 28 (29 in a month) and married a wonderful guy who signed on for this life... It is definitely hard but we get through it. 3 months before we got married I began to taper down on the only medicaiton I was taking. 3 months after our wedding I completely weened off the Effexor. It was horrible, but we got through it. I have been with any meds for the Fibro for 1.5 years. I am at the tail end of a 10 month flare. The worst flare that I have had since the Fibro set in 5 years ago, maybe worse than the inital "flare". It is nothing short of a challenge trying to live a "normal" life with chronic pain and all the associated conditions.
I promised myself 5 years ago that having a career was going to be my priority. There are some days that all I can do is work. I drag out of bed into work and the minute I get home I go back into bed. There are days (rare) that I need to stay home to sleep or be in bed. There are days or weeks when I can't go out with friends because I'm too exhausted. I sometimes have to cancel plans at the last minute due to the pain or just feeling horrible. I spend the majority of evenings at home relaxing than I do out. All of these things I have had to come to terms with. I have learned through much trial and error that it's not best for me to go out both nights of the weekend. I have learned that I can't stay up until 2 in the morning and expect for the next day to be fine. It's not fair that I can't keep up with other people my age, but I learned to live with it.
I have learned to listen to my body more than I ever did before and if I ignore it I suffer the consequences. I try not to get too upset if I have to walk around like a 90 year old because I'm in a flare, I just try to take advantage of the days where I can feel more like a 28 year old. I recently acknowledged that this is going to a life long uphill battle, I have to accept and validate all my feelings and deal with them appropriately. I have to set realistic expectations for myself. I think to some degree I was in denial, I don't remember what it's like to not be in pain so I had to stop hoping that I would feel that way again. I can just hope that I have more days of minimal pain than I do of the horrible pain. I learn to embrace the days of minimal pain and feeling "normal". The one thing that this wonderful group of people has showed me is that it is possible to lead a full life despite being in pain. It's just important to learn different coping techniques and having different plans for when we hit those rough patches...
I hope this has helped. I'd be more than happy to talk with you more if you'd like. As my Dr. used to always say to me each time I'd leave her office "Hang in There"