Help-14 year old daughter may have fibromyalgia

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lettuce
Regular Member


Date Joined Jun 2009
Total Posts : 78
   Posted 6/3/2009 9:41 PM (GMT -7)   
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!

Shash13
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 6/3/2009 10:37 PM (GMT -7)   
Hi Lettuce and welcome to the forum! Lots of super people on here who are caring and supportive. I'm so sorry your daughter is having such a rough time. Know it's hard on you, too, as her mom........ I'm not really much of an expert on fibro and am fairly new to the forum, but I do go to an internist and feel very secure with her. I'm sure one of the forum moderators will be posting soon and can help you more than I can.
Have you checked out Fibromyalgia 101? It's the second thread at the beginning of this site. It's really helpful!
I mostly just wanted to tell you that you will be cared about and helped as much as possible on this forum, even though we aren't doctors and can't diagnose, of course.
Please post again -- we truly do care about you and you don't have to deal with this alone!
(((hugs)))
Shash
Dx: FMS,OA,depression,anxiety,DDD with 7 herniations so far,HTN,IBS,cardiac
stent,failing aortic valve,angina,migraines with aura,many surgeries,+misc.
Rx: Nifedipine,Atenolol,Enalapril,Simvastatin,Levothyroxine,Cymbalta,Bupropion,
Dicyclomine,Lorazepam,Darvocet,Percocet,albuteral inhaler,nitroglycerin,+
( novice with computer - patience, please!)


lettuce
Regular Member


Date Joined Jun 2009
Total Posts : 78
   Posted 6/3/2009 11:01 PM (GMT -7)   
Thank you, I hope we find answers soon.  Thank you for the words of encouragement. 

Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 6/4/2009 12:09 AM (GMT -7)   
I had the same issues as a young girl also, I know exactly how she feels. And to top it off I had gallstones for a year with no doctor beleiving me (when I was 14), and anybody who has had gallstones know it's one of the worse pains a human being can ever get. They kept telling me it was all in my head (because my parents happened to seperate when the pain started) or that it was GERD or gas.....so I was ignored for over a year til finally a substitute doctor covering for my GP ordered an ultrasound and thats when they discovered my stones and week later had surgery to remove my gallbladder, but I absoutly beleive that because of the severe pain of stones made me get fibro, cause after that I could not tolerate pain and started getting fatigued, ibs, pain, and lots of other symptoms of fibro. So I would not give up, ever!!! keep trying for a doctor that will listen and do the right tests. Has she been tested for lyme and other health issues like that? cause usually after they rule those out, they diagnose fibro. And because nobody beleived me for so long, it caused severe depression. I even had one doctor at an ugernt care before they found my gallstones tell me that I didnt need to make up pain symptoms to be seen by a doctor, ant that I can visit whenever I feel like it to say hi, can you beleive that??? What a jerk, I wish I had gone back to him after they found the stones and rubbed the ultrasound report in his face, but of course 15 years old dont think like that, but I did learn to not take no from a doctor. And since your daughter is so young, she needs you to do this stuff for her. Just keep searching for the answers, there is one, just dont let her life go on liek this, they can make her more comfortable so she can have a more normal life, or whats normal for fibro atleast, but I'm sure she can get back to life if you find the right doctor.

-hellokitty


 

    {\{\       ,                    /}/}        
    { \ \.--.  \\        ,         / / }       
    {  /` , "\_//        \\   .-=.( (   }      
    {  \__\ ,--'          \'--"   `\\_.---,='  
     {_/   _ ;-.           '-,  \__/       \___
      /  '.___/            .-'.-.'       \___.'
      |  __ /             / // /-..___,-`--'   
    `=\    \`\            `" `"                
       `/  / /                                 
        '././       


lettuce
Regular Member


Date Joined Jun 2009
Total Posts : 78
   Posted 6/4/2009 7:37 AM (GMT -7)   
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!

crazyoldcatlady
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 6/4/2009 8:17 AM (GMT -7)   
I think fibro is usually diagnosed by a rheumatologist.

I'm sorry your daughter is going through all this. I hope you find answers soon. {{{hugs}}}
Donna


beautymom5
Regular Member


Date Joined May 2009
Total Posts : 84
   Posted 6/4/2009 11:45 AM (GMT -7)   
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.
In the strength of the Lord, I can do all things


lettuce
Regular Member


Date Joined Jun 2009
Total Posts : 78
   Posted 6/5/2009 7:34 AM (GMT -7)   
Thanks for the input, I just happen to have D-RIbose from when she was sick a while back.  I forgot about it.  You should see our medicine cabinet, it's like a pharmacy from all the things we've tried w/ her.  I will give it to her tho w/ B.  Thank you.  I found a doctor in our small town who specializes in FM & have spoken w/ people who have gone to him for 20 years.  We're now just trying to get her into him asap.  And one more possitive note is that his wife suffers from FM, so he understands!  We feel hopeful for the first time in months. 

Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 6/5/2009 9:54 AM (GMT -7)   
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


 

    {\{\       ,                    /}/}        
    { \ \.--.  \\        ,         / / }       
    {  /` , "\_//        \\   .-=.( (   }      
    {  \__\ ,--'          \'--"   `\\_.---,='  
     {_/   _ ;-.           '-,  \__/       \___
      /  '.___/            .-'.-.'       \___.'
      |  __ /             / // /-..___,-`--'   
    `=\    \`\            `" `"                
       `/  / /                                 
        '././       


SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 6/5/2009 10:15 AM (GMT -7)   
I am so sorry to hear about your daughter. It is really rough on the both of you, I know. Going to an internist would be a good idea. But, fibromyalgia is generally diagnosed by a rheumetologist. So, I would also consider seeing one of those as well. I have been sick most of my life too. When I was a kid, I did not have a very high pain tolerance. Every little thing would hurt me. When I saw the rheumetologist who diagnosed me almost a year ago, he told me that I had, in all liklihood, been born with fibro, and that the birth of my son is what put it into overdrive. I really am sorry to hear that your daughter is going through such a rough time. If she or you ever needs to talk to someone privately, my e-mail addy is available. Feel free to send me an e-mail. Sometimes my wireless connection is sketchy, so it might take a few days for me to reply, but I always reply eventually. Good luck to you and your daughter. Keep us posted on how she is doing.
'Cause when push comes to shove
you taste what you're made of.
You mind bend til you break
'cause it's all you can take.
On your knees you look up
decide you've had enough.
You get mad.
You get strong.
Wipe your hands
shake it off.
Then you stand.
 
-"Stand" by Rascal Flatts
 
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/5/2009 1:01 PM (GMT -7)   
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*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 6/5/2009 2:25 PM (GMT -7)   
Hi, Lettuce, and welcome!  You said  your daughter is 14 years old.  Could there be a possibility that she has endometriosis?  My daughter was around 22 when it hit her but it can start in the teenage years.  She had stomach pain (actually abdomen) and we went through all those tests too and she, also, was told it was all in her head.  She started losing weight and the doctors thought she was bulemic.  I knew she wasn't. 
 
When she came home from her last gasto appointment in tears because he told her it was all in her head, I said we had tried all doctors except the gynocologist.  She went and it was endometriosis that was causing her all of the problems for several years! 
 
Your daughter could have fibro, also, but since you are checking this might be a possibility.  Here is a link from the Mayo Clinic all about endometriosis.  I hope this helps.  Please let us know what you find out.  We really do care.
 
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


lettuce
Regular Member


Date Joined Jun 2009
Total Posts : 78
   Posted 6/5/2009 7:05 PM (GMT -7)   
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

lettuce
Regular Member


Date Joined Jun 2009
Total Posts : 78
   Posted 6/5/2009 7:12 PM (GMT -7)   
She has never been checked for endometriosis because her pain is up in the center around her ribs.  A doctor has never suggested it either.  Thanks for your suggestions!  We'll keep searching. Has anyone heard of stomach spasms associated w/ FM? 

bigsanfer
Regular Member


Date Joined May 2008
Total Posts : 57
   Posted 6/5/2009 7:31 PM (GMT -7)   
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?
16 years old. SLE dx. 2008. Medications: Prednisone 10mg. Plaquinel 300mg. Methotrexate 12mg a week. Folic Acid. Calcium. Vitamin D.


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 6/5/2009 9:00 PM (GMT -7)   
The rib pain could be costochondritis... and the bowel pain could be Crohn's Disease. Does she suffer from diarrhea? I'd look into getting an appointment with a university hospital in your state. You need to get to the bottom of this. She could have Lyme, rheumatoid arthritis, Epstein Barr, and about a kabillion other things. You need a better diagnostician than your small town has. Good luck with this.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


lettuce
Regular Member


Date Joined Jun 2009
Total Posts : 78
   Posted 6/8/2009 3:53 PM (GMT -7)   
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.  

SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 6/9/2009 7:11 PM (GMT -7)   
I know this all must be so frustrating for you and her. I do have some advice. Next time you see a doctor and they want to only focus on one thing, bring them back to focus. Remind them (repeatedly if you have to) that you are there for more than one reason and they need to focus on all of them equally. Sometimes it can be really rough finding a doctor. It sounds like your daughter has just been hit hard since a very young age. I am sorry to hear that. She must be going through a lot of depression because of her limitations. I know that I am depressed by mine all the time. There are so many things I want to be able to do. I want to live life normally. And I can't. I am sure that your daughter is going through those exact same feelings. Especially at her age, she just wants to be able to do things other kids her age are doing, but she can't. If she does, then it leaves her completely drained and bedridden for the next few days. I know you are going through a rough time, and I am so sorry to hear that. Just know that you have friends here who will listen and offer whatever advice they can. Hang in there, and let us know how things are going.
'Cause when push comes to shove
you taste what you're made of.
You might bend til you break
'cause it's all you can take.
On your knees you look up
decide you've had enough.
You get mad.
You get strong.
Wipe your hands
shake it off.
Then you stand.
 
-"Stand" by Rascal Flatts
 
 


lettuce
Regular Member


Date Joined Jun 2009
Total Posts : 78
   Posted 6/11/2009 10:04 AM (GMT -7)   
smilewinkgrin   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!

SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 6/11/2009 12:18 PM (GMT -7)   
Glad to hear that you got an appointment with an FM specialist. I hope the this doc is able to give you some answers. I am glad to hear that your daughter is having a better week. It's always best to celebrate when the good days come. One of the good things about finally getting an answer is the ability to start some kind of treatment for something specific. Cymbalta is one of the depression drugs used in fibro treatment. I can't take it because I have anxiety issues, but for a lot of people, it really helps. Glad to hear the good news. Keep us posted!
'Cause when push comes to shove
you taste what you're made of.
You might bend til you break
'cause it's all you can take.
On your knees you look up
decide you've had enough.
You get mad.
You get strong.
Wipe your hands
shake it off.
Then you stand.
 
-"Stand" by Rascal Flatts
 
 


Spoonie Jen
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/15/2009 9:20 AM (GMT -7)   
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.

TarheelMama
Regular Member


Date Joined Mar 2009
Total Posts : 28
   Posted 6/15/2009 11:53 AM (GMT -7)   
Your daughter sounds a lot like me when I was younger. I was always sicker and more sluggish as a child than the average child. I had fibro symptoms start at the onset of puberty. They all did tests and said I was crazy. It got worse and worse over the years and I finally got diagnosed at age 28.

*~*~*Katie*~*~*

 

~Fibromyalgia, Arthritis, Carpal Tunnel Syndrome, Lordosis, Chronic Fatigue, IBS, Chronic Cystitis, Bicornuate Uterus, PCOS, Cancer Survivor, Dyslexia, Memory Loss, Anxiety, Depression, ADD, Kidney Disorder, Kidney Stones, Migraines, Allergies, Eczema, Diabetes, Bulging Disks, Weak Ligaments in Knees~

 

(Insulin, Gabapentin, Cyclobenzaprine HCL, Zolpidem, Rozerem, Hydrocodone ES, Toradol Shots, Steroid Shots)

 

*Don't dream it. Be it!*


lettuce
Regular Member


Date Joined Jun 2009
Total Posts : 78
   Posted 6/17/2009 12:47 PM (GMT -7)   
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!

lettuce
Regular Member


Date Joined Jun 2009
Total Posts : 78
   Posted 7/1/2009 9:47 AM (GMT -7)   
Good News?!!  My daughter saw the FM doc & the diagnosis is official.  She does have FM.  We feel relief finally knowing! Thank God for an answer! She is also relieved! This was the 7th doc she's been to since Nov.  We feel she's had it since age 8!  She was put on Cymbalta 30mg 1x daily by doc #6, he left town.  The new doc increased her dose to 60mg 1 x daily.  It's just been 2 days, so we'll see how she does.  The doc asked her what on her body does not hurt & she said her face, then she smiled.  She will be put on a 504 plan for school this fall,  she will succeed!   Thanks to everyone for your hugs & prayers.  I'll keep posting her progress. 
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