Is it really Fibromyalgia???

[lrking]

I am a 15 year old girl who stays active by playing soccer and started having problems 6 months ago. It all started with me getting hives. I had had hives before and with the hives my feet swelled up. Therefore, when my feet started to swell up again I went to the doctor right away and the put me on Prednisone, which did not do anything. I then developed constant stomach pain, the doctor ordered a Barium test (where you drink a couple cups of Barium and then they look at your stomach). The barium test did not reveal anything more than acid reflux. The night of the barium test I had to be taken to the emergency room by ambulance for a severe, severe, severe side pain. There the doctor had me drink more liquid to coat my stomach, after they realized that I already had barium in me they kept me for one night and then released me with no answers. Throughout this, I realized that I was becoming more and more fatigued and had a lot of joint and muscle pain. The pain is most noticeable in my ankles, knees, right hip, back, neck, and wrists. It seems like I have had every single blood test possible and nothing abnormal has come up. THere have been a couple things on the low side (I think my white blood cells) but still in the normal range. Then about 1.5 months ago, I started to have heart pain. It felt like my heart was crunching up as hard as it could and then it would pop open and release. I would have the pain mostly when I was sitting down and then got up to move. It started out only happening once every two weeks but has developed into happening everyday. (Oh yeah, I also had an endoscopy revealing gastritis). My doctor eventually diagnosed me with fibromyalgia, but I am seriously doubting it. It just doesn't seem like what I have.

I am currently on the following medications: nexium, accutane, zyrtec (has been stopped because of heart), doxepin (rarely), hydroxyz (rarely, only when itchy)

Please help me, I am desperate for an answer!!!!!!!
Thank You!!!!!!!!!!!!

[spastic]

I am with txsilver on this.  Fibromyalgia is real and it should only be diagnosed by a highly trained rheumatologist.  I was first dx'd with it and I just would not accept it, my symptoms did not make sense and were not consistent with fibro.  I was finally dx'd with Stills Disease.  I would suggest getting to a new rheumy and even an internal medicine Dr and starting over.  A lot of various ailments elude diagnostic testing for a long time.  It is a very frustrating process and I too will be here cheering you on and supporting you.

Your Friend,

Ada

[txsilver]

I agree with myproblem to a degree.  Fibromyalgia is a real condition that has become the convenient disease du jour.  You should only be dx with it when all other tests have come back negative.  Lab work, x-rays and MRIs are not always enough.  On a bone and joint scan, I lit up like a Christmas tree, but in labs I was borderline and x-rays should very little to nothing.  
I suggest you change rheumatologists.  Find one who is interested in your case and runs through everything before coming back with a dx.  The rheumy should not just check your hands and send you away.  They should take a complete and thorough history and check you out from head to toe for evidence of what is at the root of your symptoms.  It may take several rheumys before you get to the one who will work with you, but your persistence will pay off when you get the diagnosis that fits and makes sense.
good luck to you and let us know how it goes.  It can be very discouraging and we will all be here to cheer you along and help as we can.

[myproblem]

Although people who have been diagnosed with fibromyalgia have real pain, and real medical problems, the diagnosis itself is a "wastebasket" diagnosis. It is what Dr.'s tell you when they either don't know, or when they think it's all in your head. Many people are pushed out the door with this useless diagnosis, as if just a name will make them get better. Don't accept that. Have you been to a rheumatologist? If not, you should. If you have, make sure that you have been tested for autoimmune conditions. You are at the prime age to develop an autoimmune problem because of changing hormones. It sometimes takes a long time for it to show in blood tests though. Also ask about Seronegative Arthritis, and Reactive Arthritis. Seronegative means that is just doesn't show up in blood tests, but that a clinical diagnosis can be made based on your symptoms, and your reaction to anti-inflamatory medicines like prednisone. Reactive Arthritis is also known as Reiter's Syndrome. The is a gene which pre-disposes you to it. You can be blood tested for gene HLA-B27. There are lots of good medications to give you your life back if you get an accurate diagnosis.

[lrking]

The rheumatologist was the one who diagnosed me with fibromyalgia. He basically told me I had fibromyalgia and when my mom started to ask questions about it, he told her not to worry and to relax. He gave us the name of a book to read and pushed us out the door.  

[txsilver]

Wow, you don't write like a 15 year old!  Sounds like it could be more than fibro based on bi-lateral joint pain.  I would get in to a rheumatologist for evaluation.

[lrking]

I forgot to mention that I also recently started to have a loss of appetite and have lost some weight in the past couple of weeks.
Thank you!!!!!!!!!!!!!!!!
lrking