Living With Fibromyalgia - Online Support Group

Can anyone help me?


Hi, I’ve never joined a group or anything before, but honestly I’m desperate at this point. When I was fourteen years old, I was diagnosed with fibromyalgia (juvenile). It got worse, then it seemed to get better. Only a few aches and pains it seemed like. I am now 21 years old. Three months ago today, I had my first baby. I was taken back to the hospital a week later for toxemia. Since then, it seems like everything has gone downhill. It’s like every day I wake up with a new problem. I’ve had chest X-rays, an echocardiogram, ekg’s, and tons of blood work. I’ve also been diagnosed with anxiety. For some reason or another, I’ve convinced myself that I’m dying of something, most likely a blood clot. I know how stupid that sounds. Logically, I know it isn’t. But there’s something in my mind that won’t let it click. Everyone looks at me like I’m either an idiot or a hypochondriac because I keep telling them my pain isn’t consistent in how it feels or where it’s at. Sometimes it feels like there’s a screw stuck in my bones and if I could just get it out… Or a sharp stabbing pain. Or a muscle cramp. Or just this horrible burning feeling. As far as tender spots go, I know right below my shoulder blades for sure hurt terribly if the slightest bit of pressure is applied. But everyone keeps telling me it’s all in my head or I’m convincing myself something is terribly wrong and that makes pain manifest in various places. It generally hurts the worst in my legs, arms, wrists, and back (mainly underneath my shoulder blades). I also get this extremely tight feeling in my chest and throat that makes me think (here we go again) that maybe a blood clot is traveling into my lungs. I don’t know why I can’t get that out of my mind, but it makes me panic. I’m skeptical about my diagnosed of fibromyalgia because I feel like maybe I was misdiagnosed. I see some people that can’t get out of bed in the mornings. I’m always terrified something bad will happen to me. That may sound selfish, but I want to be here for my family and raise my son and step daughter. I guess I was just hoping that there’s someone else out there that is or has experienced the same thing as me and they made it out fine. I’m so sorry for the long post, but like I said, at this point I’m hopeless.


Jess, I am reposting your discussion on our main boards. I just want you to receive responses…Blogs are closing soon.


According to literature and my doctor, any change in your body affects fibro/CFS. So, having a baby with all the chemical changes you have gone through probably has sent you into a flareup. I am very sensitive to changes in my medicines, the temp, the barometer and even emotional upsets. Your pain may be physically worse.

Saying all this, I suggest you talk with a rheumatologist who has studied fibro. Let him/her rediagnose you and run all the inflammatory disease tests. Fibro is an inflammatory disease. Your gyn should be involved. Your hormones are running wild and he/she might be able to help you with balancing them. Finally, ask your doctor to refer you to a talk therapist and use that as an outlet for your emotions.

Everyone's fibro is different. There is no case identical to another. I know that hopeless feeling. The belief no one understands what you are going through or if it is real. Find good doctors to treat you and keep a journal to take with you to appointments. Write down how you feel at various times of day, after activity, after food, type of food. Write down what hurts, when, what the weather is and what you have done. My skin physically hurts, I cannot handle soft touches.

WIth an infant you are not getting your rest your body craves- post exertion malaise. It all makes sense to me. Part of what I am hearing is panic due to not knowing- not panic due to hysteria. TALK WITH YOUR DOCTORS is the best advice I can give you.