Help-14 year old daughter may have fibromyalgia

My 14 year old daughter has been ill basically her whole life.  The most recent episode got worse late January 2009, she hasn't been to school since.  Her symptoms are stomach aches, fatigue, if she has too much fun for a day, she's wiped out for days afterwards, she can't hardly walk through the store, she lays around all day & sleeps 12 hours at night, she says it feels like her ribs are poking into her lungs.   She has been put through a battery of tests which include upper GI w/ small bowel, hyta scan of her gall bladder, x rays of her stomach & intestines, Cat scan, all sorts of blood tests for low blood iron, mono, parasites, celiac disease, etc etc etc.  One doctor said her behavior is typical for a teenager, one said she was depressed & put her on cymbalta, one sent her to a psycologist, who after 6 visits, said she could no longer help.  It is very frustrating.  Now she has no doctor, they all run as many tests as their area of expertise allows &  then write her off.  We are no further ahead than at the beginning.  She has always had low endurance & fatigue even as a small child.  All her life, every 3 weeks she will get a sore throat & flu like symptoms & low fever & miss a couple of days of school.  At that time the doctors would say if she would go to school & got her mind off herself she would feel better.  One main complaint is her stomach hurting.  I was wondering if stomach or intestinal spasms are part of fibromyalgia.  I've researched it online & the pressure point test puts her thru the roof.  I don't know what doctor to go to from here, an internist?  Can someone give me some advice.  We've already paid $5000 out of pocket for tests.  She's sick of being sick, but at the same time the doctors seem to think it's in her head.  Help!

Thank you, I hope we find answers soon.  Thank you for the words of encouragement. 

I will keep searching for her.  They thought the stomach pain was gallbladder at first & one doctor said make an apt w/ a surgeon to have it removed, but I wouldn't because her tests weren't 100% conclusive. So that dr refered her to a gastro dr who said good call on my part not having her gallbladder out, cause it was healthy.  I wasn't about to start removing body parts from my girl without conclusive tests. The gastro dr said she is just depressed (all in her head) He spent a total of 15 minutes w/ her & didn't even get a complete history on her, no one will take the time to do that.  Some of her problems have been going on for years off & on.  I don't know if she's been tested for lymes disease, the symptoms don't really match up, but it seems like not all symptoms match up for everything anyway. I don't know what kind of dr to take her to now.  She's seen a chiropractor, GP, Gastro, Psychologist, GP w/ a degree in psychology, and a nurse practioner. Our town is limited for doctors.  One thing these have in common is they run their tests then write her off.  My daughter goes w/ her friends to sleep over & swim & comes home wiped out for a day or 2 & just cries because it seems she can't have fun w/out getting sick.   Thank you for your input, I won't give up.  It's like climbing up hill carrying bricks!

why don't you try some magnisium and complex b vitamins and some D-Ribose and see if she feels better.

The magnisium and B vitamins help with the muscles and nerves

The D-Ribose helps with energy.

I am using these and they help a ton.

yea, getting a gallbladder removed is not fun at all. I had severe diarrhea afterwards, and lost 40lbs in ONE month!!! It was scary!!! But I will admit it was the best decision, and I was given a med to control the diarrhea, which made life so much more better, I would run to the bathroom before I was even half way done eating, which meant no eating at school or when out with friends cause it was too embarrassing. Did they do an ultrasound on her gallbladder?? thats how they discovered mine, and even after they found it, my mother didnt want them to remove it, and the doctor yelled at her saying it wasnt a question of "if" but "when", and that I needed it done ASAP, I was scared to death. Then after the surgery I kept still having the same pains, and come to find out I had pancreatic divisum, which causes chronic pancreatitis. I have 10 confirmed problems with my digestive system, and I have always had stomach issues since I was a baby. And now my 7 year old daughter has the same problems, and I know that if she ever complains of the same kind of severe pain I will demand an ultrasound on her gallbladder, even if I have to pay out of pocket, I will not let her suffer. But I think you will know if it was gallstones, she would be complaining of pain in her chest that goes to her back, she would be doubled over in pain, and taking hot baths is the only thing to relieve the pain for alittle bit. But then again theirs always other gallbladder issues besides stones. Most people complain of vomiting and fever with gallstones, but I had none of that, just the severe pain. It's hard to get doctors to treat pain in such young people. I was given tylenol #3 for pain, and I would take maybe 3 pills before they expired, I hated them. But I cant stand doctors when they cant figure out whats wrong with someone they send them to a psychologist, and it makes you beleive that maybe it is mental, and they tried that on me, and I never forgave my parents for that.

-hellokitty

I agree with the above, I would see a Rheumatologist. Its always so sad to me to hear young people being ill. I sure hope you get some answers soon.

Gentle Hugs
Gail *Nanners*

Yes, she had a hyda (SP) scan & an ultra sound on her bladder, both were normal, they said her gallbladder is perfect.  We'll keep going until we find the problem.  Thanks

Hi lettuce, I just want to put in my input because I am 16 and suffering from both lupus and fibromyalgia. Actually when I was 14 I began having joint pain, fatigue, myalgia, and a year after that I got signs of fibromyalgia. I know I am probably not the best source to help but I just want you and your daughter to have hope. I had a tough first two years but I never gave up. After my diagnoses I had a mindset to get back to where I left off. The pills help, but everyday I still know that I have fibro/lupus and I can feel the pain. Now I am back on my feet playing basketball and soon to be volleyball. Its really tough for me to play these sports and to attend school as well, but I think it is a longing of wanting to be normal. I hope you both the best of luck with this, never give up. Have you asked the doctors about Chrons Disease?

Thank you for your advice.  She doesn't have diarrhea but just constant upper abdomen pain.  She just came home from a friends house, had too much fun, now she's wiped & in bed. 

Has anyone visited Mayo clinic? 

It is hard for her during the school year to have any activities, even getting her homework done.  She was on homebound till school got out last week.  They passed her onto 9th grade, but I know she had F's in some subjects.  It seems if she has something special coming up she can get homework done.  We sometimes think she's spoiled, but yet, other times she's wiped out & constanly sleeping.  Anyone out there with the same situation?  We go back & forth from thinking we aren't pushing her enough to thinking we should never push her. 

Her whole life it takes her what seems like an extra long time to form good habits.  For instance as a child trying to get her to wipe, flush & wash when using the restroom took her until she was over 10.  She  didn't ride a bike until she was 8 1/2, she walked at about 18 months, she was a tall baby.  I always thought she didn't walk cause she was further from the ground & scared.  Who knows. 

 At age 6 she was diagnosed w/ complex partial seizures.  She has never had a grand mall but had episodes of being totally out of it.  She hasn't had seizure activity for 2 years. She can recognize when something is going on.  She will see an "aura"  or feel like time has elapsed that she wasn't aware of.

  She has never had the stamina of other children.  She is not overweight, tall & lean.  There are just a ton of things with her that the doctors just don't have time to go over.  Whenever I bring her to a new one, they zero in on one thing I've said & go after that.  And I can almost see their brain shutting off to all the information.  

  Good news I hope.   We finally got an appt w/ a FM specialist but not until he 29th.   When they called I just started to cry with the feeling perhaps this will give us some answers.   She has been doing pretty good this week.  She says she always has muscle pain and her stomach never changes.  She still sleeps up to 12 hours at night, but has been up in the day, doing a few things w/ friends & coming w/ me to do errands etc.  She listens to soothing music all night on her ipod because it comforts her.  It seems the Cymbalta may be helping w/ the depression.  Thank God!

I was diagnosed with fibromyalgia when I was 14, six years ago. It's really hard to get a diagnosis so young, no one ever believes you. I remember it was horrid trying to get a doctor to listen to me instead of the doctor just saying I wanted attention and that nothing was wrong. *Hugs* I hope her appointment goes well. If either of you need to talk, feel free to email/message me. I'll keep your family in my thoughts.

Thanks for your encouragement. It's not only the doctors who tell her to quit thinking of herself. It's a lot of people. I told her to start replying to people who ask how she is to just say "fine thanks". If they are really interested they will ask more detailed questions. Know what I mean. Poor kid. Her appt is the 29th of June! Coming up!