reality hits hard.

I am having a hard time right now with fibro. I haven't been diagnosed yet, but everyday seems more and more like I've found what's wrong. I am relieved in a way, but I don't feel like I can tell anyone. I have one friend who understands whole heartedly... she even researched fibro pretty extensively to understand what I feel, but she is the only one. I feel like through this journey of my body being "broken" many people have labeled me as a hypochondriac. They assume that I'm making things up, or cry wolf for every little thing. It's hard to explain to anyone that I KNEW my body just wasn't right. However to their credit, I have always "looked" healthy. I am feeling really discouraged... sometimes I feel like it really is all in my head, that I'm weak, or maybe a hypochondriac. Tonight was the worst, a friend boy just came back from college and I was cold and tired. I went to hang out with him, but I was real snappy and grumpy and he couldn't understand why. He would be the first to say "oh stop whining", so I just kept quiet and told him I had just woken up early today. I don't know if anyone else understands, but tonight was one of the first nights I realized how this was going to rearrange my life a little more than I would like... and tonight I really did wish it was all in my head.

Don't give up. I always knew there was something else wrong with me other then the endometriosis and for so long I was given the "Hypochondriac" label by friends, family, partners, employers, etc. But you just KNOW your own body and when something's up. Finally I had to make an appt with my pcp and when they asked what it was for, I straight up said that I wanted to talk to him about Fibro. *I* had to bring it up to get a diagnosis and even then, he still never did a tender points check or anything. He just went off the symptoms I told him. Honestly, I think he just wanted to shut me up.

Now that I know I have Fibro, it's hard to explain to people...particularly about the fibro fog or the fatigue. They think it's just me being "lazy" or "airheaded". Don't they know that I would LOVE to be able to see my friends and not feel like I'm going to need a week-long nap after seeing them for 10 minutes? It's very frustrating. When I told my employer about my FM diagnosis, she asked what it was and I told her and she told me my doctor must be "a quack" because that's "the most ridiculous thing" she's ever heard because "everyone gets tired and forgetful as they get older" (Yeah but I'm only 28).

It's a relief when you get the dianosis, but it still doesn't seem to make it easier for people to understand.

I've come to realize most people just plain suck lol.

LilMissSunshine, I have grandchildren in college and I know the life they live when they come home on breaks and get together with old friends. My grandson becomes nocturnal and stays up most of the night and sleeps most of the day. I can't imagine him understanding what living in a fibro body is like as active and healthy as he is. My heart goes out to you and all the young people we have on here that can't enjoy a normal young life because of this DD. Yes, you can live a good life but not at the pace your friends do. I'm sure you feel isolated and left out a lot of the time.

 

We can only hope and pray that they find better meds or cause and cure for this DD.

 

luv and hugs

Marlee

Sweetie, please take my advice! I've had fibro since there wasn't a name for it. For years I blamed myself & went into a deep depression so bad I didn't want to wake up in the morning. I stayed like that for 4 yrs! Get hold of a small book or good article & show to your family & friends. It's a lot easier than having to define the 1001 symptoms. Good luck dear!