rss
127

Fibromyalgia in Teens

Fibromyalgia can be devastating. Especially if you’re a teen.

*Author’s note:  This article has taken on a life of it’s own.  Many have used it to voice their own concerns regarding themselves or their child and frustrations with the medical system.  There is hope!  Working together hopefully we can help others.  Please read the comments as well and feel free to leave your own story.* 

Picture of Nicholas at the Aquarium

   

My son Nicholas was diagnosed with Fibromyalgia two years ago when he was fourteen. Looking back I can honestly say he was exhibiting symptoms since he was eight. Nicholas was always my “healthy child” his younger brother had severe asthma since he was an infant.

     He mostly complained about stomach and back pain. His chief complaints: my stomach hurts, my side hurts (left side). So we went to the doctor again and again and again. We saw lots of doctors pediatricians, urologist, gastroenterolgist, nephrologists, orthopedics, psychiatrists, psychologists. You name it. They did tests urine, blood, x-rays, ultrasounds, catscans.

He ended up in Children’s Hospital for a week on morphine when they found a kidney stone. According to the doctors a stone too small to be causing him any pain. So what was causing the pain? They didn’t know. So went through phases. He would double over in pain and I would take him to the doctor and nothing. He’s fine. There’s nothing wrong.

He missed lots of school so then he was making it up to miss school. He was depressed. I was depressed. Some gave him drugs. Percocet, darvocet, Tylenol 3 with codeine. They helped sometimes a little. Mostly they would knock him out. We had a teacher come out to the house. It is very difficult to get a Dr. to write an excuse when they don’t know what is wrong. Eventually we ended up Homeschooling. And the pain still continued . So much for the hates school theory!

We switched Doctors again and again and again. I looked online. I talked to everybody, anybody who would listen to me. There is something wrong with my child! He had pain off and on, he had frequent low grade fevers, he couldn’t sleep at night, he was lethargic, he didn’t want to leave the house, he was depressed, he had to stop playing baseball because his feet hurt when he ran, he dropped out of Boy Scouts. And no one listened. No one cared.

69
Liked it
RSSComments: 127  |  Post a Comment  |  Trackback URL
  1. Loirlynn, i know exactly what you are talking about. Im 15, and i was diagnosed with fibro two years ago after 12 doctors said i was fine. Its hard to deal with, and your son is lucky he had yoyu there to believwe him and support him. Im still in my battle with my pain, but i know im lucky to have a mom who supports me.

  2. It is good to hear that even as kids/teens that you are getting doctors to listen to you and to get diagnosed. It seems there are so many things they must search for and rule out before they can actually diagnose fibromyalgia. It is not easy to live with. The pain can often be hard to cope with, but the one thing anyone can do is to try and make some of the changes listed in regards to diet, exercise and medication and to just keep taking things one day at a time. Having friends and family that are supportive and believe you are ill, makes all the difference no matter what age you are, but I would imagine it makes a big difference as a teenager.

  3. I liked the article. My daughter was also diagnosed as a teen with the same disorder that I have. I had already been warned that it ran in families. My belief is that early diagnosis can do so much to help the disease from getting as bad as it has for me. Thank you for posting this article for parents to read.

  4. I wonder how long I have had fibro and went undiagnosed. I was constantly at the doctor and never got a difinative answer to what was wrong.

  5. aa

  6. I need to show this article to my 16 year old daughter. Her experience with the disease has been similar but with a lot of gastro problems as well. We are looking for teen support groups, either on line or in Southern Cal. At least our school district recognizes fibro as a real condition that falls into the “other” category for IEP.

  7. i am 18 and so far i have been to two doctors. the first one said that i have signs of Fibro and the muscle doctor said that he does not have fibro because of my age. there is something going on with me. my whole body aches and has pains in my muscles. there are some days where i can’t even hardly walk and this doctor tells me that i am healthy and nothing is wrong. if nothing is wrong then why am i hurting every morning and every night, all day every day. there has got to be a answer.i personally think that i have fibro, is it possible?

  8. that sounds just like me and i was just diagnosed im 16 and still suffuring very much

  9. I was just diagnosed with Fibro. I’m 18 and have just graduated high school and have been to more doctors than I can count in the past 2 years. I don’t know how I kept going through those last two (hardest) years of school. I’m almost glad I didn’t know then because it would have been an easier excuse than to keep pushing past the “invisible pain”. I hope this gets easier because right now its just hard and painful. I’m also on meds for depression and sleep. We’ll see how it all works out. Keep fighting. Ignore it. Don’t let it stop you, at least it’s not degenerative.

  10. I was diagnosed with fibro today at a Remo dr. i a m14 and its great to know that theres is a cause,because hoestly the next step was a phyc.
    THANK YOU!

  11. im 17 years old and i have been suffering with severe pain since forever. my doctors just always told me it was joint problem.but iv always had a feeling it was more. i recently had a aunt diagnosed with fibro. as she explained all of her symptoms to me and my mother it sounded so much like me. the severe pains , points of tenderness, always tired, severly stiff, restless legs which keep her from sleeping. i was shocked. is it possible that i really could have this? if i get diagnosed will my life be changed in any way? im honestly scared to be diagnosed..i start college in fall…i dont want anything to get in the way..and i keep wondering will my doctor take me seriously when i ask to be ckecked for fibro? will my parents?

    im confused..scared..i just need answers..cause now my parents are starting to think im just a cry baby looking for attention…

    if anyone can help me email me at attitude1184@cmaaccess.com

  12. I have a daughter 13 years old that was diagnosed three weeks ago with fibromyalgia. She has been seen by well over 10 doctors for the past 19 months. No one seemed to know what was wrong with her,but a few of the doctors threw around that she had some type of myalgia. She has been put on 3600mg of neurontin for pain and 75mg of Elavil to help her get some sleep at night.My daughter has missed so much school she my fail the 8th grade.Next week she will be starting on a home hospital program thru the school.HOPEFUULY we can find something to help her to get back to school soon.Will it get better ? Is there any hope for that? Can someone please give me some insight to what I have in store!

  13. I was just diagnosed today. I have suffered for years with unexplained pain, restless leg syndrome and intestinal issues. I thought I was crazy. My 16 year old daughter has been suffering unexplained muscle issues, stomach issues etc… for the last three years. The Orthopedist she saw asked me if she was somehow benefitting from her “pain”… insinuating that she was faking. Tomorrow I am making her an appointment to see a rheumatologist. I was given a trial of Lyrica before I went to the rheumatologists today and for the first time in YEARS, I felt normal. It is the first medication specifially approved for fibromyalgia. I won’t let my daughter suffer as long as I did. Good luck to all.

  14. Just recently the pain that I have been experiencing for about 6 months in my arms and legs has spread to my hips. I feel like amputating my limbs off and ill tell my parents that but they say lets keep an eye on it. Just recently we’ve guessed that I have fibromyalgia….now I cant find a doctor to diagnose me because i’m only 16 and they only see people 18 years of age or older. I feel like I have to know. I’ve been researching FM and I’ve found that it also comes with the symptoms of severe headaches and back pain…when I was in 8th grade I missed a month of school due to severe headaches. I went to neurologists and several other doctors, had MRI’s and yet they still could never figure out what was wrong with me. Then my freshman year of high school I started getting sever neck and back pain. I started going to a chiropractor and a massage therapist. I started getting severe shooting pains in my fingers last year after I had surgery on my wrist. My doctor said that the pain I was experiencing wasn’t normal but he didn’t know what was wrong with me. When I get those pains all I can do is bite my fingers as hard as I possibly can to try to make it stop. When I started getting pains in my arms I just wanted to cut them off because I couldn’t really bite them. Then the pain spread to my legs, then my knees and hips and now its everywhere…I get it so often that when my mom asks me if I’ve had a bad day with pain I cant even remember because its mixed with all my other days where I experience the same thing. In the last month I’ve started experiencing concentration problems and memory problems which is really effecting me and my school work. Also I cant sit still, my headaches have returned and all I want is to be able to talk to someone who actually understands. I don’t know how to deal with this…do you?

  15. My 15 year old daughter was diagosed with fibromyalgia in July, 2008. We were told by her pediatrician that she was tired because she had “low iron”, and she was fatigued and in pain because she was depressed. After over a year and half of this mis-diagnosis, I requested to be referred to a Pediatric Hospital.

    We finally got the correct diagnosis after seeing the Pediatric Rheumatologist. My daughter now goes to the Pediatric Pain Clinic, physicial therapy, and takes Lyrica. She has had some improvement over the past 4 months. She describes her pain as feeling every day like she’s an “80-year old woman”. She is also learning stress management techniques throught the Pain Clinic. This is a journey we have just started, we have a lot to learn. Thanks to all for sharing their stories.

    Our Rheumatologist also recommended It’s Not Just Growing Pains: A Guide to Childhood Muscle, Bone and Joint Pain… by Thomas Lehman. You should be able to find it at the library.

    Romans 8:28 And we know that for those who love God all things work together for good, for those who are called according to his purpose.

  16. i know what your going threw, im 14 and i was just dianosed this summer with fibromalgia.

  17. I stumbled upon this website as I desperately searched for information on teens with fibro and I am so glad I did. My 15 year old daughter has suffered from back pain, severe headaches, pain in her feet and fingers, her knees are terrible and give out, and no one knew what was wrong with her. I have taken her to countless doctors, counselors, psyciatrists, anyone that could possibly tell me what was wrong with her. She is at her worst in the mornings, she looks like an 80 year old woman getting out of bed and is very stiff.
    I am wondering if anyone else has experienced depression or mood swings with this. She has a terrible time with school, hates it and says she “can’t do it”, so of course the absenses are piling up and the school doesn’t understand, nor care, they just tell me I HAVE to make her go. It is so stressful and as the parent you want to fix it, but how, and where?
    If anyone can give me some insight as to the mood end of this illness it would sure help me understand if the pain and the emotional part are connected.

  18. Dear LeAnn,
    I am going through the same thing with my 15 year old daughter. She had shingles last year and everything spiraled downward since. After countless doctors and her pediatrician saying it was all in her head…I finally found a pediatric rheumatologist who diagnosed fibromyalgia. She picks up every sickness at school and has not been in since December 16. It is a vicious cycle…she gets sick misses school..stress increases….pain magnifies….depression…mood swings…it is like walking on eggshells…she just started seeing a psychologist…i’m desperate to for answers and help…keep me posted.

  19. Dear Joan,

    I am by no means taking pleasure in your, or your daughter’s, pain, but I am so glad to know that I am not the only one going through this. There are times I feel so alone.
    I now have the school threatening to take us to court for my daughter missing so much school, another added stress.
    I hope that the diagnosis of fibro will lead us to some type of answers as to treatment. I completely understand the walking on eggshells feeling, it is not fun! I hope you get answers for your daughter and will share any info I get, you never know if it something that could help you as well.
    Good Luck!

  20. I know what you’re talking about!!!! I’m an 18 year old and I JUST got diagnosed yesturday after years of pain and a long list of symptoms that doctors where always writing off! I thought that I was weak and that everyone felt these symptoms and this PAIN all of the time! And finally, finally, someone listened and believed me and told me what I had. I am more relieved than anything–much as you said, “I’m not crazy!!” The puzzle pieces finally fit together and I can now start to cope with them, knowing this is real!!
    I’ll do my best!!
    Love,
    Sara

  21. Hi everybody,
    I’m glad that there’s people out there with fibro like me, even though I’m not glad that you’re suffering and in pain. I’m 15 years old and have been diagnosed with fibromalagia for about eight years now. I’m finding that since I was diagnosed at an early age, through careful managment and physio I’m able to return to my daily activities. I’m attending high school almost full time now and though I’m still at my fair share of doctors appointments, am doing as well as I can. Just so everyone knows, fibro is horrible but it is possible to retain a lifestyle that is as normal as you can get it. I have a special program at school that helps me get better grades by getting homework extensions and have longer time for tests. They also got me a tutor to help me with concentration and memory.

    I find that fibro is most easily managed when one mantains a relatively consistant schedule. That way, your muscles and pain and can adapt to the consistency. Also, even though drugs for both pain and sleep sometimes can be the most wonderful thing in the world (trust me, I know) do not get depended on them. Your body will degernerate to the point where it can’t function without them. Last but not least, as much as excersise hurts, not excersising will hurt more in the long run. Staying in bed all the time might feel good, but you’re losing the little muscle strength you have when you do it. Take a short walk outside, do a couple of physio excersises. It will hurt. But you will be better the next day. Don’t try anything too hard on your muscles, like running, sports, or even yoga. A nice stretch will do it.
    Okay that’s it. Just keep trying. Fibro will stop you from achieving what you want to, but be determined to master it as best you can. Good luck.

  22. Hi everybody,
    My daughter was diagnosed just a couple months ago and she is 14. Like everyone else we had seen several doctors and now we are seeing a Rheumetologists. Our problem is that she has missed so much school and she has fallen behind. She just started a new sememster but it is a struggle at times and I did speak to the principal and one of her teachers about Fibro but where do I go from here I think she needs extra time for her homework and studys due to the fact that she said she finds it hard to concentrate but the school does not seem to care. What are her rights does anyone have advice on what we could do?

  23. My 15 year old daughter was just diagnosed with Fibro. Our life has been horrible since NOv 10 2008. Constant vomiting after 2 bouts of strep for about 3 weeks, then nausea, hip pain, couldn’t be in loud bright places (school) lost 12 pounds, chest pain, shortness of breath, muscle spasms, depression over being sick. 2 years ago, same thing after a major infection. She never slept, her hip was constant pain.

    Mary forget about school, give her a chance to get on the right meds. Her health is more important. She may need an IEP (Individual Education Plan) but really, so she repeats a grade. Kids have to go into the world way too soon. Let her get well first. Sleep is important, what meds is she on. Since my daughter started on elavil, she is sleeping well. We still have gastric emptying issues to deal with, but we are getting well. School can wait as far as I am concerned. I will have her go when she feels she can handle it. I will pick her up if she has a bad day.

  24. I am back, still searching for the magic answer of how to help my daughter through this horrible time in her life. She is still in constant pain, even though she started new meds last week, and still can’t go to school. A new symptom has popped up now, a sore throat and sore lymph nodes. Has anyone else experienced this symptom? Today is an exceptionally bad day, she hurts everywhere and has extreme fatigue. Of course this was the day she was to return to school after a week off, but it was clear she could not, and would not, go, so I tucked her into bed and told her to sleep. Now comes the trouble of dealing with the school, they don’t understand, don’t care, threaten to put me in jail if I don’t make her go to school. What do you do? I have a child in chronic pain, and a school who could care less. I talked to the principal to find out if they would allow her to go half days for a while, he said no! It would be nice to say this guy is a JERK! The truancy officer calls daily, wants a doctor’s note every time she is gone, which is costing me a fortune because I have to run her to the doctor and pay for an office visit just to satisfy him. I am taking her in again today because she didn’t go to school today, and for what? Her doctor knows what is wrong with her and can’t wave his magical wand and heal her today, but we will be sitting there again because the school says we have to! I have even asked the school about home schooling her and the principal told me that it isn’t that easy….what does that mean? I have researched it and as far as I can tell I have the choice of how she is educated, not them. It might be something we will have to look further into.
    In case you can’t tell I am feeling like I am loosing this battle with the school! Where does one look to find out their rights in a situation like this?
    I hope everyone on here finds peace, pain-free days, and know that you are not alone,and most of all, you are not crazy!
    God bless you all and I will pray for all of you!

  25. leann- I have been there sweetheart-I would seriously suggest withdrawing her from school immediately-THEY DO NOT CARE and her health and safety is way more important than there stupid numbers. I was taken to court for not sending my youngest son to school sick. He has severe asthma so I filed a complaint against the school system with the federal division of civil rights. Fibro is a disability you do HAVE RIGHTS (504 Plan). They were much nicer after that. After they agreed to all of my demands I withdrew him and homeschooled him anyway. :-) Homescooling is WONDERFUL!! You do not need any dr notes ever! I have saved so much money on stupid copays it is crazy just to get a note. You may want to read my other articles about how fond I am about public schools! PS: calling the GOVERNOR’S office helps too! If you are interested in homeschool check out HSLDA.ORG They have a good overview.

    Nicholas takes regular doses of Naproxen for pain and occasional medication to help him sleep. He has good days and bad days. Most days are good, it still takes him longer to get up and going in the morning or late afternoon depending on how he’s feeling. To combat the school system I removed him from public school and we Homeschool. I highly recommend this to anyone having difficulties with the school system. They do not care about children and most are unwilling to work with you. If you DO choose to stay in School I suggest filling out a 504 Plan with the school. (Although be prepared that they will pretend to not know what you are talking about!)

    A 504 Plan protects people/children with disabilities whether it is fibro, asthma, diabetes, etc. You have rights!! This is a Federal Law under the Americans with Disabilities act.

    I hope you get this soon leave a contact next time or email me at tyrfan2001@yahoo.com. good luck I KNOW you can do it!

  26. I’m 18 and have been in horrible back pain since I was 14-15. Doctors have always said I had sciatica, and left it at that. This past friday I had an MRI done, and of course nothing. Then I had a nerve conduction study, idk if you all know what that is. But he shocked my nerves with this crazy tazer looking thing. Then he stuck a 2inch needle down in my back a bunch of times, and in my legs a bunch of times. After that test came out negative too. He started asking me questions about my sleep habbit, and he started pressing certain spots on my back and legs and asking if they were sore, I told him which ones were, and he just comes right out and says, you have fibromyalgia. Honestly, I’m devostated. I’m just scared of being in pain for the rest of my life. Is there anything I can do?

  27. Kim, you are right and that is what I am trying to do. Right now she was put on anti depressant (Zoloft) and we are scheduled to see her rhuem. this week to find out what the next step is. She seems to be doing better. I am sorry to hear about your daughter and I wish you the best as it is hard for us as mothers to watch our kids go through this.

  28. Laci, I’m scared too. I’m turning 17 next month and I can only get a rheumatologist to see me after I’m 17. To be honest with you after I found out what my most likely diagnosis was I went numb. Its scary, but it turns out I know a lot of people who are going through fibro and they’ve said that you can contain your pain and not let it run your life. Right now I’m in the delicate balance of the unknown. You have the power of knowing what is wrong. Use that to your advantage and get any information you can. I recommend joining a support group because they will know exactly what your going through. Right now that’s the only advice I am capable of giving. For me, its helpful reading accounts of what other people are going through that are the same as what I am going through. It helps me know I am not alone.

  29. Leann,
    It has been awhile since I have dealt with public school, but we went through this and are going through this with a private school
    1. Your daughter should qualify for special education under 504 OHI – \”Other Health Impaired\” which would require an IEP be written -Individual Education Plan for accommodations. There is a website that I saw http://www.pediatricnetwork.org that has good info on school issues and how to write IEP accommodations. I am not sure if you are in a large school district, but if you are you can search their website or your states website for this special education information. If not this is our local school district’s info. http://www.nisd.net/departments/studentservices/504/.
    2. Sadie website it is http://www.caringbridge.org/visit/sadie, which was some of her story. She is now 15 and she attends a private school for learning differences. However, she has missed 12 days already this semester, cant even count # day missed last semester – and they were threatening truancy on us, and wanted the Drs note for every time…..blah, blah. Private school is handled different in our state so they don’t have all the procedure public school does, but a letters from the Dr. stating her diagnosis and how it affects her will do.
    3. What struck me that along with all the Fibromyalgia symptoms Sadie has a lot of allergies and chronic sinusitis. In early Jan she caught the flu and had a sinus infection and chronic sore throat. She is not much better being on the antibiotics and we have been to the Dr. several times other than that he tells the infection is slowly getting better. If she does go to school, she can hardly function and is sets back for several day… it seems our daughters might have several things in common.

  30. Im 14 and i was diagnosed with fibromyalgia two months ago. It’s a hard thing to deal with and I’m still having trouble accepting it. I never thought that I would have to take prescription medicine three times a day for the rest of my life. I don’t know what to do and i feel alone because firomyalgia is not common in teens. I have no one to talk to about it because no one understands what I’m going through. An teens with fibromyalgia out there?

  31. Erin- you should be able to see a child rheumtologist. that’s where i went right before my 18th birthday.

    I’m 19 years old. I’m in college, working a part time job, and about to get married. I got diagnosed with Fibromyalgia 7 days before my 18th birthday. I was lucky. I went to a pediatric clinic where there were multiple doctors. The main doctor wrote me off at 17 with junior arthritis even though no test proved I had it. Another doctor got a hold of my file and asked my mother if she wanted to send me to a pain specialist. I went to a child rheumtologist at emory. he diagnosed me with a touch of fibromyalgia and a huge list of other things. i decided that i didn’t really have fibromyalgia and went about my way with my low dose, unhelpful medication. After about six months, I went through a devastating amount of pain that kept me home from school. I laid in bed crying feeling sorry for myself. I decided to look back into fibromyalgia. i found a new doctor who re-diagnosed me and put me on treatment plan.

    I want to offer an alternative to medication. I don’t like being dependent on pills.

    I started physical therapy at my local wellness center. I met my savior. My physical therapist introduced me to Kinesio Tex Tape Gold. It’s a tape without medicine in it, but it helps alleviate pain. I’ve used it and I can feel the difference. it doesn’t work for everyone, but it helps some. i think it’s worth a shot.

  32. My friend is having problems with symptoms a little like this. She has trouble sleeping, doesnt have much of an appetite, and always complains of her legs hurting. She has been to doctors but they say its stress. do you think that this could be fibromyalgia?

  33. My daughter is 15 years old and experiencing the problems i am reading on all your posts.We have been to the drs many times and they have been saying it is migraine.i dont believe it is migraine it all.
    She started with tired,legs aching,pain in shoulder and back,hip pain,numbing and tingling pains in her arm and bouts of either diarrohea or constipation,pain in her side which moves from her back but this is mainly worse in the morning.
    She has had a headache constantly and a tingling at the back of her head.She doesnt have any problems with sleep,she wakes up tired.
    When reading she struggles to take in what she has read,at school they have said she has a dyslexia with reading.
    Also her blood pressure is up.
    Any advice or help would be grately appreciated as we are struggling with the doctors.

  34. I’m 17, but my symptoms started about a year ago. My GP said it was glandular fever, my the blood test came back negative. The same thing happened when he suggested anaemia and Ross River fever. He then suggested fibromyalgia and did a pressure point test, which was positive. But when i went to see a different doctor, he dismissed fibromyalgia as i wasn’t in my 50’s and told me bluntly that i had rheumatoid arthritis. This made me sink into a deep depression because i thought arthritis was something ‘old’ people got. Luckily, my blood tests came back negative for RA. My GP referred me to the rheumatologist who diagnosed fibro. Sometimes the pain is so bad that i can’t get out of bed, and although i sleep through the night i wake up exhausted. It’s my last year of high school and it’s really affecting my ability to study, especially because i’m missing so much. I’d really like to hear from someone who is going to through the same hell. it’s incredible, after doctors told me i couldn’t have fibro because i was too young, to read all these personal stories. Please contact me: emmygirl_92@hotmail.com

  35. My son (13 years old) was diagnosed by a Pediatric Rheumy with “pain amplification”. Others have told me that this is a diagnosis when they can’t be sure what he has. He had a period of remission (4 months – no pain – after doing intense physio) and then the pain came back. We arent sure why – he had a bowel virus, he was back playing contact hockey, etc. His pain appears to be Fibro and we are waiting for an adult Rheumy to give him an official diagnosis. I truly understand what each child and parent has gone through here. Doctors who don’t know so they guess, friends that don’t all stay around, and constant unbearable pain. He is better emotionally now, but was depressed for quite some time. He was an honour student and an elite athelete with tons of friends. Now he’s at home unable to walk without a walker. His chest pain (costochondritis) is so severe he cannot move, but to get better he needs to move. Hanging on to hope that he will pass through this a stronger person….

  36. WOW, THIS WEBSITE IS AMAZING. I THOUGHT THAT I WAS THE ONLY 18 YEAR OLD GOING THROUGH THIS AWFUL THING. I BELIEVE THAT I HAVE HAD FIBROMYALGIA FOR 4 YEARS AND HAVENT TRULY BEEN DIAGNOSED BUT I KNOW IN MY HEART THAT THAT IS WHAT HAS BEEN GOING ON. I HAVE BEEN TO COUNTLESS NUMBERS OF DOCTORS AND, EITHER THEY DONT CARE AND HAVE NO COMPASSION OR THEY THINK NOTHING IS WRONG WITH ME. IT IS SO FRUSTRATING AND I WENT TO A RHEUMATOLOGIST TODAY AND SHE TOLD ME,”YOURE JUST GOING TO HAVE TO LIVE WITH CHRONIC PAIN THE REST OF YOUR LIFE”, APPARENTLY, SHE HAS NO SYMPATHY AND HAS NEVER FELT THE PAIN I AM GOING THROUGH. IVE HAD DEPRESSION FOR YEARS AND SHE THOUGHT THAT I JUST NEED TO TAKE MORE PILLS BUT I WANT A HEALTHIER WAY TO LIVE INSTEAD OF TAKING PILLS TO FUNCTION. ITS SO FRUSTRATINg!

  37. My daughter has suffered for many years with this disease. She was diagnosed wiht Fibromyalgia 3 years ago. She is 16 now and has withdrawn from school due to the School not understanding the missed days even though we have Dr. to back us up. She also has suffered with eosiniphillic gasroneuritis, bi-polar and depression. To begin with they told her it was post-dramatic stress. She has not gotten any relief from all the meds they have tried. She keeps declining. There are days that she can not even get out of bed. Her mental states is decling as well. She keeps saying there is no hope for the pain to stop. I am in the process of trying to find a new Dr. that may know more about this Disease. My sister has it as well. Now my youngest (10 years old) is now displaying symptoms. If anyone has a suggestion on where to look for more informed Dr. please feel free to contact me. My emial is tereburr4@yahoo.com Any information is greatly appreciated.

  38. My daughter just turned 14 and was recently diagnosed with Fibro in 2/09. All last summer she was in incredible pain in her wrists, elbows and shoulders when she played softball. She LOVES softball. We took her to her pediatrician and they diagnosed that she had overdone it playing softball and gave her some strengthening exercises. In 9/08 she played volleyball for her middle school and didn’t have alot of problems with pain. Then in January of ‘09 she came to me saying her shoulder hurt so much is was waking her up at night. Back to her pediatrician. He sent her to get her shoulders x-rayed with and without weights in her hands (with the weights in her hand the pain was excruciating) — of course the 2-rays showed nothing. Next step was a physical therapist. Thank gooodness for him. He put her through the full range of motion tests and says “This is NOT musculo-skeletal, get her back to the pediatrician and have her blood testes for Rhumatoid Arthritis, Lupus, it could be Fibro”. So we ran back and had her blood drawn on a Friday. Of the tests that were immediate, all were negative. Over the weekend I did some educating of myself on the internet and ALL of her symptoms and sore areas fit the Fibro diagnosis. On Monday, the rest of the tests came back negative and I asked my pediatrician to look into Fibro. We are fortunate to have a very good pediatrician and he called many of his neurologist friends and even a cognitive specialist that works with children with severe pain issues (migraines, arthritis, etc.). He came back and said my diagnosis was correct — it was Fibro. It was the first case he had ever diagnosed. He put my daughter on the anti-depressant Amitriptylin to help her sleep. One 10 mg pill at night for one week, two 10 mg pills the second week and 3 10 mg pills the third week. She was complaining of her memory in school and being in a fog quite a bit. I finally found a pediatric rheumatologist who confirmed the diagnosis BUT he said this was “beatable”. With a shift in exercise patterns and diet, we could lessen the pain considerably. He also mentioned a new aspect of pain management called Physiatry. I haven’t looked into this yet, but am willing to look into ALL possibilities! My daughter is putting up with the pain. Her sleep patterns are better and the Amitrip. has helped the pain to an extent, but at what cost? She hates her mental state during the day and has gained 10 pounds (to a 14-year-old girl that is an EMERGENCY). She keeps asking for a pill to take the pain away during the day. We are just starting to adjust our lives, but I think it will take time for her to take the exercise and eating healthier to heart. She continues to play softball (currently in practice and conditioning mode) and puts up with the pain. Batting is her worst enemy (she hit her first home run last year and had the best batting average on her team) as her wrists and shoulders ache so that she cries. She JUST had her first bout with her hips hurting two days ago. It will be a long road, but she is determined to live her life as normal as possible. I am so grateful for all of the posts here as I will be watching her more carefully with her schoolwork. Currently she isn’t having problems with school (other than the memory loss from the Amitriptylin). Also, I didn’t know Lyrica could be given to teens. Any input you teens may have on that would be greatly appreciated, please email me at nelanjs@aol.com. Hang in there everyone — we’ll all get through this with each others’ help!

  39. Any teens who are struggling please e-mail me, we all could use a support group or people our own age that are living with fibromyalgia. I’m 15 (16 in august) and my symptoms started around 12… even though my family tracked other sypmtoms starting around 8-10. Its a bit crazy that its taken me this long to actually look into blogs and such about it. (or write in a blog) anyway I’d love to get feedback

    kerla1017@hotmail.com

    Take care

  40. My daughter has had fibromyalgia since she was 15. She’s now 21. We have only just got some help for her. Her main symptoms are severe tiredness, pain and severe weakness particularly on her right side. If she squeezes your hand you will feel nothing. At her worst she couldn’t walk or use her hands.

  41. Yeah, I’m 15 and was just diagnosed with Fibro. They won’t give me anything for the pain, so it just feels like it’s getting worse. I wake up sometimes, and I can hardly walk. Now, they say I’m also dealing with depression because of it. I just really want to get my life back. It’s caused so many problems for me and, especially, my family. They deal with the stress and financial issues and it makes me feel so much worse. I’ve missed more than 50 days of school so far [although I do have a B average]. It’s just ridiculous. I’m so tired of the pain.

  42. I’m 15 and i was diagnosed with fibro about a year ago. It can definetly make daily life hard. I’ll wake up sometimes with the biggest migrane, feeling like worse than I did when I went to sleep. I play football and I do Martial arts classes so its hard to keep up with that and school while dealing with fibro. It has also caused me to be emotionally depressed. Hopefully they can find a cure in the near future.

  43. I was diagnosed with fibromialgia when I was 14; now i’m 19. I barely managed to graduate from high school. but was thankful to due to understanding school staff. Since graduation I have been unable to work and in pain all of the time. I recently had some hope for my future due to a new medications I have been taking called Low Dose Naltrexone (LDN). I take the pill at night and for a few weeks it interrupted my sleep but that side effect went away. Other than that i notice no side effects. Since taking it I wake up in the morning w/ far less aching and throughout the day my pain is much more manageable. I heard that a recent preliminary study at Stanford university showed that the majority of patients who took LDN were helped by this medication. I stared out taking 3 mg per night, but then increased to 4.5 and have had more success. I feel less depressed and have more energy since taking the medication. This may be due to a direct effect from the medication or a secondary effect from decreased pain. This is a new med not officially approved for fibro. I highly recommend going to your doctor with information about this drug because most don’t know about it.

  44. Anna seems to be getting worse in the last couple of weeks. Mainly severe tiredness; I also think her left side is getting weaker. She starts an exercise program in a heated pool at the hospital on Monday.

  45. My 16 year old daughter was diagnosed with fibro last september. Her story is much like the ones I read here – intense pain, stiffness, can’t get to school before 11am (if lucky) etc.
    She is trying to keep active because she stiffens up when she sits around. She has weekly physical therapy and takes Lyrica.
    We heard a professional bowler on TV talk about having fibro and he went to a doctor and got a single injection of something and now – after a couple of years off the pro bowlers tour, he’s back and WINNING tournaments.
    Does anyone know what this injection could be ?

  46. Can you please contact me privately as I would like to share with you what has helped me. elcd06@yahoo.com

  47. Im 16 yrs old i was diagnosed with Fibro about 2 yrs ago but i think iv had it 4 longer than that. I probably started feeling pains when i was in the 7th grade. The pains started in my knee and then my back and wrist. When i went 2 an ortho 2 get it checked out the Dr told my Mom i was faking it and wanted attention, Thankfully my Mom wasnt buying it she knew i was really in pain. Finally my pains started 2 ease until 1 morning woke up and i couldnt stand bc my legs hurt so bad. When my mom took me 2 the Dr the nxt day i was put thru several test and when i told him my simptons he refered me 2 a specialist at AR childrens Hospital. After a while i finally got diagnosed wit Fibro but my family was already fimiller wit Fibro bc my aunt has it. Now i go 2 the hospital every 2 months 4 check ups and as a result i take alot of meds 2 help me although they dnt seem 2 make a dif. Depression has never been a factor 4 me. I miss tons of school and not all my teachers or my friends have excepted my diagnoses so it makes it really hard at school but thankfully i have my brother and sisters there 2 help me.

  48. Jacie, your story sounds just like daughter. She will be 16 in August. Her pain also started in her knee, that Dr. told me she was faking it.The same with her wrist and back. She also goes to Ar Childrens Hospital and sees a Dr. Dare. I would love for her to talk to you. My email is jjjjteague@yahoo.com Im very glad you have a family that understands.

  49. I know how you feel. I’m 15 and was sent to 18 doctors that all said I was faking it, they said I had munchousens and that I was a hypocondriac. Not even my parnets believed my pain was real. Finaly, I was sent to a nurologist to get an EEG for my migrains. When he got the tests back, he told me I had canser. But it was curable. He had also noticed a slight but serious curve in my spine, that might not be as easy to fix. I’ve always been a flexable person and when he asked me to touch my toes, I gladly did. “Interesting.” he said. As he rubbed and poked my back in several arias, he said “You have a very bad case of fibroid myalga and will need serious surgury or it could turn into something much worse.” Shocked I said, “No I don’t. I’m about a hundred years to young!” 3 years later though, I’m doing much better pain wise. I’m only 4′7″ and wont be growing anymore but I was so thankfull of that doctor, he saved my life. I’m cancer free and I have never felt better in my life.

  50. Jill, please tell your daughter that she is absolutely not alone here. I think the majority of teens with fibromyalgia are suspected of fabricating the pain for attention. The simple fact is, however, that what we have to live with everyday is real! I’m 17 now and have been experiencing symptoms for about 4 years. Finally, last year, Dr. Delapena, at Loma Linda hospital diagnosed me and, most importantly, believed me! She is a brilliant, caring physician. If anyone on here is in her area, I highly recommend seeing her.
    I noticed a lot of people saying the drugs don’t help. I agree! In fact, I am completely off all prescriptions, and I can’t tell a difference in my pain level. The only difference is that I no longer feel groggy, dizzy, or euphoric from the many drugs I was prescribed in the past. I highly recommend fighting this the natural way. Healthy diet, exercise, and sleep during the night. 20 minute naps are ok during the day, but any more than that and sleep becomes even more difficult at night. Oh, and one last thing. Stay away from AMBIEN! That is an awful drug that is supposed to help you sleep, but gave me hallucinations and caused extreme paranoia while in my system. Good luck to everyone. Chin up and positive thinking! You are all in my prayers. If anyone wants to talk, feel free to email me at katiekins_ec@ hotmail.com

  51. CATHY, perhaps the injections could be cortisone shots? I also have a friend with rheumatoid arthritis and she gets steroid injections. Maybe one of those

  52. so on june 22nd this year i got diagnosed with fibromyalgia. im almost 15 years old but my whole life ive felt like id never be out of pain. when i was only 6 months old i had a fever of 106 degrees and that caused major nerve damage which led to my hypoplasmia(soft teeth) and im pretty sure my fibro too. i end up crying for one reason or another everyday. my boyfriend of 10 months now has been there with me at 3 oclock in the morning while im still crying my eyes are bloodshot and i wasnt able to walk or move my legs for that matter. my parents are both pharmacists but they both think that im a hypocondriac and theyre just amusing me by taking me to the rhuemetologist. my next docs appt is this friday. im currently on tramadol which just makes me sick and i hate taking it. she wont give me narcotics because im so young. but i feel like thats the only way to get rid of my pain. i ache i hurt i hate waking up in the morning because i dont feel like theres any hope for me. i dont feel like ill ever be out of pain. and im getting pretty sick of it. in january of this year i had mono for almost 4 weeks and thats when my pain got really bad. i started sleeping 12 or more hours a day i could barely eat i had no strength no matter how much i would sleep and its all gone down hill from there. i went to a private christian school up until high school so when i started going to public school i started getting sick a lot. since last year ive gotten sick atleast 5 times so far. not including my mono. before that i was sick maybe once every 2 years. im sick of being in so much pain. people think im over exaggerating and i feel like im on the edge of psychosis. i think id rather be dead then feel like this all the time. i have some good days…maybe twice a month.. but all these bad days are getting to me. someone help???

    lydialunacy@live.com

  53. so obviously i posted right above this one. i went to my doctors today and she prescribed me gabapentin …when i wanted her to give me cymbalta and lyrica…but since im not 18 she wont give them to me even though she is the one who diagnosed me with fibromyalgia and now is not letting me try the medication i want to try…does anybody know a sane doctor in washington state or oregon??? one who will actually listen to me and not just give me a disappointed look and tell me to \”try again\” i wont be motivated unless i have some hope for medication first. please help :(

    lydialunacy@live.com

  54. Hi Lydia, Don’t give up! If you don’t like your doctor switch. Don’t stay with one who doesn’t believe in you. As far as your parents go they sound like they are as frustrated as you are.
    I know I became very frustrated and discouraged during Nicholas’s ordeal.
    I’m not familiar with Gabapentin.
    Fibromyalgia CAUSES depression. Nicholas was put on Cymbalta when he was 14 (by his psychiatrist). It seemed to help a little for a while but nothing helps completely. He is now taking Zoloft for depression and Ultram for pain.
    He has been on darvacet, Tylenol 3 w/ codiene and percocet for pain in the past which DID NOT help at all they just made him tired all the time.
    Since he just turned 18 we are seeing a new Rheumy on tuesday. Keep us updated you are not alone.

  55. My son has been having pain for a few years now. Just today his doc sat down,listened to him in depth,then to me..and feels he has fibromyalgia. She ran some labwork and a urinalysis,and gave him a prescribed pain killer to see if it helps. Nothing so far has. He said this one hasn’t helped either.We’re waiting on test results,and while we wait,she’s GERD meds and scheduled a CT scan. The more I read here,the worse I feel for him. HE takes till about 11 am to get moving too! I just thought he wasn’t a morning person. He’s grumpy,tense,moody…and ust told me today that he is in PAIN when he wakes up. So many of these symptoms echo what he is experiencing.

  56. I\’m 14 and have been having serious health issues since June 08. Horrible side pain turned into debilitating side pain. Then \’migranes\’ were added to that. By this July, I had seen 12 specialists but because all the tests came back normal, they said I was fine. I snapped back with \’I was in the hospital for 3 days because I couldn\’t move my legs. Does that seem okay to you?!\’ I couldn\’t eat. I wouldn\’t leave the house. I would go back and forth between insomnia and sleeping over 10 hours. I was getting depressed. But most of all, I was angry. Angry with the doctors, my parents, myself. I felt helpless and I couldn\’t handle it. Thankfully, somebody told us they could help me. I was thrilled for all of 2 seconds when he told me he thought I had fibromyalgia. I was desperately hoping that they could just give me a pill to take and everything would go back to normal. But no. Of course not. Life\’s not fair. I know I sound lethargic but I honestly can\’t see a positive side to this.

  57. i’m 16, and i have fibro…
    the anxiety hits me out of nowhere, and when it does, i cant stop thinkin that im having a heart attack. but that was just the first couple of attacks, now that i kno what i’m dealin with. it makes it kinda easier for me. but there are some of those bad days where my chest is in pain and i cant get a full breath of air. i went to to the emrgency room the first time, thinkin i was having a heart attack… nothing. i was fine. but i didn’t believe the doc. i had a bout with depression for weeks after that, but now that i know what it is. its not as bad. they gave me Lorazepam (Ativan). but i refuse to take them, on account of their addicting qualities and side effects.

  58. I have a similar story. i am 13. i went trough 2 years of pain with everyone thinking i was faking for attention… or it was growing pains….. then my mom finnaly came to her sences and took me to the rehumotolgist. i have 17 of 18 trigger pionts. I was diagnosted with fibro a little over a year ago now and it is just as bad as it was when i was diagnosted. they put me on all these meds and im suprised im not a zombie. but i havent found anything that helps.

  59. i was on gapepentin and im 13. i was finnaly put on cymbalta shortly afterwards. but now im on cymbalta and lyrica for my fibro. what i did was actually gapapentin had a serious reaction with my other meds… but before that my mom sugested hat we try this then if it doenst work to refuse to take it and request/put up a fight for the good medicine that actually is suposed to be for fibro not sesures. I didnt want to be on gapipetin because it was for sezures mainly and i odnt have seizres. so im now on lyrica and it doesnt do much but it is actually for fibro so ill keep trying. the cybalta pisses me off though. on those damn commercials they should say it is also for firbomyalgia pain… but they dont. :( i hope this helps you.

  60. does anybody know of a fibro teen support group in the Louisville area? i have only found adult support groups and i seem to be like the only teen with fibro in my area. :/
    If anybody knows of one please e-mail me at jessicamccamant@hotmail.com
    HELP PLEASE!!!!

  61. Post By Lorilynn-Author

    So many of you are reaching out for help it breaks my heart! I made a facebook group where you can join, share your stories and we can help one another.

    Please join:

    http://www.facebook.com/group.php?gid=133833486122

  62. I was 8 when I was diagnosed with fibromyalgia at the University of Columbia Hospital in Columbia, MO 17 years ago. I have always felt pain and it has never gone away. I was the youngest person diagnosed with fibro is what they told me. When I was 7, i was diagnosed with IBS. My stomach dose not digest certain foods properly, or prescription medicine for that matter. It has been a struggle all my life, but I now have a degree in Geology and have plans not to let these illnesses beat me or keep me down. I know it sounds horrible, but the only thing that has got me though, or even helped the pain and suffering is Marijuana. It has improved my quality of life but fibro is a daily struggle that sucks, but if you can learn to control your stress and eat healthy and exercise you can reduce some symptoms, but not all.
    Good Luck to Everyone and BE Supportive because even though you cant always see someones pain, its there.

  63. Your son is has been through the exact same thing that I have been through and my name is Nick as well. I’m 17-years-old and was diagnosed back in ‘06. That’s just really weird how similar his story sounds to mine. I hope he’s doing well. A little optimism goes a long way.

  64. i loves your story it was like you took the last couple monthes of my life and wrote it down. im 16 and i had to give up playing all of my sports (one i was hoping to go to college with). i am so happy and sad that my mother was there to support me becase she made me stronger but at the same time i didnt want her to hear about all the pain i was in. at one point i broke down in the hospital (because the doctor said i was faking) and then i saw the pain on her face. so i think you are a wonderful mother and a role model for your son. just make sure he knows that YOU are ok because im sure he is also worried about your problems not just his.

  65. I am 18 and was diagnosed with fibro just a couple weeks ago, but have had pains throuhout my body for about two years. and in a way im happy that i finally know whats wrong with me but also sad in the most obvious reasons. my mom was diagnosed with fibro in 1994 and she has dealt with it for so long, and being a nurse for 20 years she knows alot about the medicaal world. so when i started having these pains all over my body she had an idea of what it was.i havent had to go to many doctors, but it seems like the ones i have gone to think im full of BS.its so hard to understand how fibro feels when its not you, and its also hard when family and friends and even doctors dont belive you. finally when i was sent to a rheumatologist and they diagnosed me with this disease i could finally breathe a little bit, but also cry because i know whats on the road ahead..i see my own mother going through it every day. I am a believer in God and i love him, but i dont understand why he lets this happen to his children. the past six months have been nothing but building depression and life just dosent seem fullfilling any more..just the pain alone and the thought that i will have this the rest of my life makes me want to crawl into a hole and not live. but i know it will get better and knowing i have a mother who is going through the same thing and being able to talk to her about it is wonderful..im kinda just rambling but its the first time i have written something on the internet like this and it just makes me feel a little better. the drs. have put me on Voltaren and Flexeril, nothing has happened yet but hopefully it will change, and maybe if someone could leave a few words of inspiration that would be wonderful for me right now.. :) my email is vute_33@hotmail.com

  66. I understand how hard it is to deal with fibro and to feel like there is no hope. My mother and I were diagnosed with fibromyalgia and chronic fatigue at the same time; she was 42, I was 12. I am now 19 and have learned to deal with fibro and exhaustion as a part of my everyday life. I will admit, it can be very frustrating at times to deal with a disease that is so vague and incurable. We have tried medications such as Lyrica and Cymbalta to no avail and with severe side effects, does anyone know what can help? There are many different levels of this disease, and personally, it can be completely debilitating. I am hopeful, but restless so if anyone knows of anything useful please respond.

  67. Just recently i was told by a fellow sufferer that she gets help form something called a myers coctail. I havent had a chance to look into it yet but she said its a mixture of vitamins and minerals that is injected via IV allowing your body to actually absorb it. That may be something to look into. I know what its like to feel like no one believes you; not your parents, not the doctors. But eventually they come around when they realize that this isnt something that anyone would wish upon themselves. I searched for a doctor until i found one that told me i had fybro, but even that doctor didnt have the answers. But my mind felt more at peace now that i had someone tell me that i wasnt crazy and tell my parents that. Its been id say about nine or more months since i found out that i was right in thinking i had fybro and in that time ive seen more doctors, tried more treatments and they havent worked. so i began to look withing. We all know that you cant just ignore the pain because when you do that you literally feel like your mind is slipping away. But for me I let myself feel at peace with the knowledge of what it was and decided that my mind would triumph over my pain. Now i have control most of the time. As long as i watch my stress and sleep i can win. And so can you. If you find a treatment that works for you then use it! if you dont, dont let the depression, exhaustion and pain win because you are stronger. This may be trapped inside your body, your body may be turning against you but it is possible to win. Yes it is a struggle but we can win. And we will.

  68. I was diagnosed with fibro when i was 4 years old. I am now 16 turning 17 this year. With the care of doctors and my wonderful mom, I have been able to continue with what I love, which is soccer. Once in a while I have to just push through the pain in my legs and just think im alright. Something my mother told me was to not let the disease control me, but to control it. I have taken this to heart when i’m doing physical activities and I hope everyone else does.

  69. i was diagnosed with fibro on dec 2008 and i will turn 20 this feb, i have a knee problem as well , last nov 2009 i did an atrhroscopy on my both knees same day, am recovering but still under pain.. i cant focus at school my grades my work sometimes i just cant keep up the fight my family doesn’t get me sometimes ,, am toooo tired of being tired , i hate myself and my life i really do

  70. Aljohara ive had days like that. Im tired all the time and its frustrating. People dont understand. They like to say that they do but they dont. Dont give up just because you feel lonely. Never give up. You can overpower fibro if you want something more than this endless cycle. One day you will learn how. Dont give up trying ever because then you will have let fibro win, and were all fighting for it to lose.

  71. I’m 17, and ‘ve had FMS for the past 3 years, though it was only confirmed a couple of years back… in those 3 years, I was put through multiple MRI’s, X-Rays, brain scans; was sent to orthopaedics, neurologists; they wrongly diagnosed me with a Chiari Malformation( which means im, literally, out of my mind..my brain is displaced), they thought I had a slipped disc, or frayed nerves..I even had an Electromyography, where they sent small currents through my muscles and nerves by sticking needle electrodes into different parts of my body..As If the pain otherwise wasn’t enough..but everything came to nothing..for years I was told the pain is just bad posture, poor nutrition, some doctors even had the nerve to say I was just lazy !

    I was diagnosed by one neurologist as having fibromyalgia, but he looked like he didn’t believe it.. I hated being laughed at. Finally, I travelled to where my aunt lives, and met a rheumatologist who not only diagnosed me with fibromyalgia, but helped me understand why, what hurts. I found out my joints and muscles are extremely flexible, but it’s true, I’m also always very very stiff.. I can’t get why.

    I have ALL the symptoms being mentioned here, plus issues with my digestive system.. My fibromyalgia has also led to scoliosis( my spine is now curved) and so I have to wear a brace at all times now..My joints keep getting dislocated, adding to the pain..

    Im now in Grade 12, and I’ve been trying to fight my body, the people around me, and myself since 2 years now. My grades have gone drastically low, and as much as I may try I cant help myself.. I forget everything I study, my excellent memory is almost down to zero now.. My teachers think I’m lazy, incapable,not working hard, distracted..

    I needed the good grades to get into a great college; It’s not fair, I was a brilliant student… and now I’m having a tough time passing my subjects.. I can’t leave school, I can’t not study further.. I”ve always wanted to be,do something big!

    I can’t tolerate the fact that FM can ruin the dreams and efforts I’ve been building up ever since…And i HATE that I can’t help myself.. I hate the medicines, I hate the depression, I hate all the ulcers and drowsiness and stretches and pills..

    FM got me to stop learning Jazz..

    I miss my life

    Did it have to come now, when everyone around me is just starting their journey onward…?

    Why can’t I ?

    Soha

  72. You are breaking my heart with your post – it sounds as though things are really bad for you right now. I came across this looking for info for my son, who is 14, and has all the symptoms. We’ve been to numerous specialists, also, with no clear answers.

    Typically, accomodations can be made for medical issues and if you are able to show that you are fighting through the pain and symptoms, that should be in your favor.

    Don’t give up and look into every resource and support group you could find. Who knows, there might even be a scholarship for people w/fibromyalgia.

    Be encouraged and hang in there. There could be something wonderful waiting for you just around the corner!

  73. My 15 year old daughter has been “sick” for 16 months. It started with a horrible bout of vomiting which didn’t stop for 4 months. After her hair started to fall out I threw a fit and they checked her gal bladder which was not functioning. Sooo, they removed it. This did stop the vomiting but along came the chronic headaches and severe nausea. Added to these are back, neck and calf muscle pain. She has had every blood test, mri, x-ray, scan and scope that they know how to do. She has been diagnosed with gastrointeritis which is probably caused by the immense amount of excedrin that she takes. She was also diagnosed with stomach emptying problems. The neurologist wants me to not let her take the excedrin, but someone please tell me how you are supposed to watch your child suffer and tell her she can’t have anything for the pain. Last school year I had to pull her out of school and home school her. She has been hanging in there so far this year but had a flare up and has missed the last week. She is on topiramaz, prozac, phenergan, erythromycin, nexium, claritin, nasonex, and excedrin. So much medication and none of it helping at all. I am currently trying to find a reumatologist who will see her because I suspect (from my own investigation) that she may have fybromyalgia. The neurologist has made her so angry suggesting that it could be emotional. I know my child very well and know that it is NOT. She was sick even while she wasnt’ in school. She is normally very socially outgoing and now she never feels like going anywhere. Occasionally she will start to seem to get better and will go along fine for a little while. Then if she gets a cold or virus it will cause her to start feeling horrible again. We never know how long she will be sick. It is so frustrating for both of us. Does anyone reading this think that her symptoms sound like she could have it. While I don’t want her to have it, it would be so much better that not knowing.

  74. Hey, im 13 and know what your going through.
    I had the same problem though not as extreme. I’ve been pulled out of all my sports ad it was really depressing. I started by going to a physical therapist, but that only made it worse. A friend then suggested a chiropracter to my mom. this would help some but then would be worse the next day. The chiropratcer finally said that this wasnt normal and sent me back to my doctor. By this time i had had 3 sets of x-rays and 12 viles of blood drawn. when we went back my doctor couldnt come to a conclusion. He sent me to Vanderbelt to a Rheumatologists. he looked me over and now i’m on a medicine for it and hope it starts to help soon.

  75. I know how you are feeling. It is almost the same story of what I went through, I\’m 17. And a junior I\’ve had symptoms since about 3 grade maybe earlier. It really came aparrent in 4th grade. My teachers thought I just didn\’t want to go to school my family was the only ones who really believed me with the exception of 2-3 friends. I \’offically\’ got diagnosed in about 7th grade. I would love to say it gets easier but I\’m just now getting control of it. It is hard to go through , you will definetly find out who your real friends are. Last year I went through a cronic pain rehab program in Cleveland. It was one of the best choices I have ever made.

    Don\’t give up, many people go through this. I have myself felt the same way many times and still do sometimes.

  76. If you take every comment here and roll them into one experience that is what I have experienced-with myself who is now 56 and my grandaughter who is 13. My sister-68 also has as did my grandmother. 3 neices abd 3 aunts also.I have had for more years than i can coun’t and it has been progressive. Definatly familial.Hardest to deal with is the school. I ASKED FOR A TEACHER MEETING TO LET THE TEACHERS KNOW WHAT IS GOING ON AND ALL THEY COULD SAY IS”, SHE JUST HAS TO DO THE WORK”. ONLY ONE TEACHER SPOKE UP AND SAID”,I DON’T THINK ANY OF YOU HAVE ANY IDEA WHAT IS GOING ON HERE’. Even after she explained to them they didn’t get it and didn’t care either.
    We will see who has the last say. I am a firm believer of “what goes around comes around’ other wise known as”what you sew you will reap”. Hope they or their kids enjoy their Fibromyalgia!!!!
    It is a sad fact that no one cares about your kids. Fibro is a debilitating, and seclusionary disease. Kid need so nuch the social aspect oftheir lives and fibromyalgia will rob them of this as well as many of the joys along the way. Start teaching them now that they are a PERSON WITH FIBROMYALGIA!! Fibromyalgia has a way of taking over a life and becomming the life. Start now looking for ways to keep their lives as normal as possible. I have had this disease for about 30 years – I was diagnosed in a time when this was thought to be a crazy persons disease.Until one day when I found myself at a local clinic where a male P.A diagnosed me. He had seen this before. His wife you see was a M.D. . She was bed ridden with it and had to give up her medical practice. He guarenteed me that in 5 years we would have acceptance starting in the medical community and in 10 years disability acceptance. Disgusting in a country such as this, but he was right on. One other thing I wilI pass onto you – he said,”don’t ever let any one tell you are crazy, i’ts all in your head.” I will add this to everything I have read here-do a search on assocoated diseases of fibromyalgia. Its not just pain. Sinus problems,depression.weakness,memory,mixed connective tissue disease, luekopenia, hupermobile joints, myofacitis and the list goes on, are all associated with this disease. Should you see your child having successive medical problems , be aware of this. Good luck to you all. I wish all of your children good health and healing. I’ll pray for you all as I pray for mine.

  77. My symptons started way back when I was in jr. high school and I was told you have “growing pains” dont worry it just from your period. Sometimes I had a very hard time walking, felt like i was getting a catch in my hip. Finally got to be about 19 yrs. old and I woke up one morning and I couldnt walk I layed in bed for days everytime I moved it felt like someone was tearing my legs off at the hip. My mom finally got me to the er where they admitted me for 6 days. I meet Dr. Flood in Columbus Ohio. He told me I had lupus… Well didnt think much of it because I had family on my dads side that had lupus. OMG… What am I going to do now-I’m gonna die. Had already lost one member due to lupus complactions. She was 26 yrs old. 2 weeks later her sister was told she had lupus also. I felt like I was loosing control of my life and everything around me. I left the hospital w/ 17 different kinds of medication to take. They made me so sick one day I woke up and said I’m done. Took them all and throwed them in the trash. So much for the lupus idea-it was so wrong. I have FIBRO….. I am now 43 with 3 kids 1 son (23) and 2 girls (13 & 11). And honestly you know what hurts worse is that I see all 3 of my children suffer from this. I was told by drs. that there is nothing wrong. They must think I just woke up stupid. So I am going around all of them and I am demanding someone to step up and help us and get in touch with the right people that will help my children. It is a constant battle everyday. Cant live like that and believe me I know how stress works on your body. I sufffer from depression. I get so mad at my self for not being able to do something just getting up to clean my house. I got good days and bad days actually we all do. We just help each other. I tried the lyrica didnt do nothing for me have tried the neurotin just a little bit but then the weight came and that just makes it worse. Then I look at my girls wondering what kind of life are they going to have a life full of pain. I understand it all. One day I hope they have a cure for this but until then we just deal. I hear you. I understand. I hurt. I feel. I cry and sometimes i laugh because who in there right mind would wont to feel like this everyday. So off to the dr we go again. Lets see what this one can do. I dont let my girls see me cry I have to stay positive for them. What is in store for us now??

  78. I can recommend a reputable pharmacy http://shopcare.org I received the order and it was on time and the pills work great.

  79. does anyone have memory issues?
    for example,I hardly ever manage to get through to this site because i keep forgetting the url..

  80. dear Joan,

    I am 15 yrs old and had shingles just like your daughter. except i got shingles in kindegarden and had a down spiral my whole life.i was just diagnosed with fibromyalgia a couple weeks ago. i understand how your daughter feels. tell her she’s not alone. i know i needed to hear that when i had all the pains and the sickness. i have depression problems and soon i will see a phsycologist. it helps to talk it out. if you don’t mind i would like to make a new friend who also has fibro? and talk sometimes, it gets alittle hard feeling on my own.

    if anyone would like to email me with tips and experiences i would love that, i will also give some feedback of what helps me get through the day with fibromyalgia
    : tdea95@gmail.com

  81. Hi everyone,

    I was diagnosed 7 years ago and can understand what everyone is going through. The frustration of going doctor to doctor and being told it\’s all in your head. Now we are going through the same thing with my 17 year old son. He has not been in school for about 1 month now and we put a request in for homebound schooling about two weeks ago. After getting the call about his test results today I was told he might need a psycologist. He might be bullied at school, stressed out or pushing himself to hard and it might be mental. I said okay, hung up and now I am going to take him to see a rheumatologist because I see myself in him.
    It still is frustrating to me even though I know how some doctors can be. If it doesn\’t show up on testing then it\’s mental.
    My best advice to everyone is get your vitamin D levels checked. Mine was really low and being put on a supplement really helped me. I still get the fatigue and pain but it\’s tolerable. My son had his checked and his was low also but an over the counter supplement isn\’t enough to get his levels up quickly.

    To Soha…Yes, memory problems are an issue. Brain fog or just plain forgetfulness, sometimes confusion. Depends on the level of my flare. Please remember that you are not alone in this. People that don\’t suffer from it do not understand. I thought I was never going to be able to be active again. My docotr got my sleep patterns regulated with Flexeril at night to help me sleep so my body could relearn how to sleep and darvasets for the pain and Vitamin D when she checked my levels. Yse I still have bad days. But with a healthy diet, supplements and moderate exercise and knowing when to rest I have come a long way. Exercise in the form of walking, tai chi or other low impact forms actually helps even though it\’s tough to get started. Again please know that you are not alone.

  82. MY daughter is 15. She has been complaining of pain since she was old enough to speak, barely able to walk a 1/2 block before her feet and hips hurt. Doctor after doctor said it was all in her head, one referring her to a psychiatrist. Her depression deepening due to pain and lack of medical personnel putting any weight in what she said. I finally took her to a rheumotologist who did not see anyone under the age of 18. I begged him telling him about her pain. He made an exception and before we left the office that day he apologized that fellow doctors failed to listen, failed to care, and dismissed her for YEARS ! Thousands of dollars later, she has a diagnosis but still suffers daily pain. Finally an answer with no cure and no relief. Her MD. prescribed her Ametripilyn to help her sleep saying her pain would diminish. She sleeps well now but still wakes to daily pain. I am now worried for her emotional well-being. Will she ever be able to enjoy life pain free.

  83. Hi im 12 1/2 and i have a lot of the symptoms of FM,pain,fatigue,headaches,fibro fog,dizzy,ballance problems etc..Sometimes im in so much pain i just want to cry my hands are hurting just to type this.I feel really bad when i cant get out of bed and i miss school.My moms been threatened to be taken to cour.Ive researched so much adn i think i have FM and/or CFS ive told my mom and she says we’ll talk to the doc. but i dont think she understands.I had to leave school early today due to my head feeling like it ways a milloion pounds and because i felt so dizzy like i was going to fall over.Any advice?

    Sorry about speeling errors

    Thanks in advance,
    Nikki

  84. weighs*

  85. I was in the same boat, taken to court because my child was too sick to attend school. I pressed charges against the school district for violating my son’s civil rights and they were MUCH nicer to me after that. Then I took him out if school and we HOMESCHOOL.
    Sign up for a 504 plan if you want to stay in school.

    http://healthmad.com/conditions-and-diseases/i-dont-have-time-for-fibro/

    Have your mom start by reading this article and the other posts.
    My sons’ fingers hurt as well. He has hyper joint flexibility syndrome. Common with fibro. Your joints are so mobile they over stretch and cause pain.

    Hang in there!

  86. lorilynn,
    Thanks for responding and now that conections academy michigan is opened for next school year.Im going to go to it.And i have the same thing everyone thinks i just hate school when i really dont before all this started hapening i was an A+ student who loved school,now im a C student who cant go to school and no one understands.Im glad i found this website there seems to be similar stories.

  87. I just finished my website :http://fibroteens.webs.com/

  88. wow, I am reading all this as a 32 year old woman who has suffered from pain since I was 14. Like Laci I was told I had sciatica and was left suffering with it, managing with pain meds. I have been asthmatic from the time I was 4 and everytime I got the flu it would turn into bronchitis. I have always had a sensitivity to noise, light and odour. I have had unexplained stomach pains from the time I was 10. Now, with increasing pain, spasms and after doing the same nerve test, 2 MRI’s, a radioactive bdy scan, xrays with no definitive diagnosis, I am now wondering if all this time it has been fibromyalgia. My parents were told all through my life that I was imagning these pains, that it is impossible for a teenager to have sciatica. I was bed-ridden for a month at 14 with pain. Noone thought to look at at Fibromyalgia. I guess back then it was a common or known diagnosis. Reading this makes me want to cry for that I have been through and dismissed as crazy. I did try to commit suicide at the age of 16 because of my frustration. Now as the pain has left me for the most part not functioning, it is only my 2 boys that keep me going through each day. noone understands what it is like and it is the loneliest feeling. Thank you all for sharing your stories with everyone. It does help and I hope what I have said helps some child in being diagnosed earlier.

  89. Im 15 and I have been recently suffering tingling in my skin, my skin hurts to touch or if I wear a sweatshirt or shirt. I always feel sick to my stomach, if I eat I feel like
    I’m going to vomit, and often feel extremely weak which is weird because I’m very athletic, i’m tired all the time, and very depressed because my body hurts so much I can’t do n e thing. I’m also experiencing alot of pain in my head like headaches and my head hurts to even touch.
    Do you think I should go to a doctor? And if i do what should I say?
    If you can help me out, email me please at soccerchica859@aol.com

  90. Im 15 and I have been recently suffering tingling in my skin, my skin hurts to touch or if I wear a sweatshirt or shirt. I always feel sick to my stomach, if I eat I feel like
    I’m going to vomit, and often feel extremely weak which is weird because I’m very athletic, i’m tired all the time, and very depressed because my body hurts so much I can’t do n e thing. I’m also experiencing alot of pain in my head like headaches and my head hurts to even touch.
    Do you think I should go to a doctor? And if i do what should I say?
    If you can help me out, email me please at soccerchica859@aol.com

  91. I am 19 and was a college athlete at a division one school and my coaches and family all thought i was crazy and being a baby about the horrible back pain. I have constant tingling up and down my spine and could barely sleep bc of the pain. I went to 3 dr and finally a rhemo said it was fibro. Right now im on amytryptiline at night and advil during the day…does anyone have suggestions on daytime pain relievers?

  92. Fibromyalgia is a serious medical disorder in which teens feel severe pain in body parts such as muscles, joints, tendons and other soft issues. The problem is characterized by sleeping disturbance and fatigue. There are many certified residential treatment centers that recommend medication and therapy programs for dealing with Fibromyalgia and sleeping disorder in teens.
    http://www.troubledteens.net/Problems-in-Teens/Sleeping-Disorder-in-Teens.html

  93. My daughter was diagnosed 6 months ago and she has every symptom… So what can we do…. She can’t sleep, her feet hurt, she is depressed. School is about to start and she won’t be able to handle the walking from class to class. She failed last year and is repeating the 9th grade.. How do I make her comfortable enough to attend school? Doctors won’t give her medication because she is 15. She has tried lyrica for 6 months and it makes her sick and she stops eating. Just didn’t work for her. We are going to her neurologist next month to ask about other medication. I just want her to not be in pain. Is that too much to ask?… Anyone…..Help

  94. I’m 16 yrs old and reading all these comments just made me cry. I’ve been to COUNTLESS doctors even had one told me I was basically a hypocondriact (spellcheck?) And it was so frustrating bc. I’m in so much pain I can’t even articulate half of the pain I feel. Its horrible. I finally got diagnosed withfibromyalgia & wass put on ampitriptyline. It def helps me wake up more refreshed & sleep better but the thing is I still am in immense pain every day.like I said I’m 16 & I’m a junior in high school I need help! I startedd looking into a 504 plan (I also have adhd) & no one understands how bad I hurt. And its so frustrating bc I can’t even explain it. It makes me happy to know I’m not alone but I feel horrible that other people are expierencing what I am. Please give me any advice you can I would really benefit from a mentour. Thanks for listening & I would appreciate anything you have to say. I wish you all the best and try to keep your head up! Thanks <3
    Nicolexxtaylor@aim.com

  95. Marcie,

    I have a sixteen year old daughter that was diagnosed with Fibromyalgia at age 12. Like your child, Lyrica is not working for her. She is also on Cymbalta to help deal with the pain and depression from this disease. She has been on and off of Home hospital for the last 4 years. Home hospital is when the Doctor takes her out of school and then the teacher comes to the house for instruction. I live in California so all public schools have to comply. The school system will not tell you about this…you will have to inquire, then have your Doctor take the appropriate action. My daughter also goes to Loma Linda Childrens hospital where her Rhematologist cares for quite a few teens with this disease. She also attends the chronic pain center there. She will be part of an upcoming clinical study regarding this disease that will hopefully start by January. I know how frustrating it is as a mother to have a child with this disease, just seems like help doesn’t come and nobody doesn’t understand. I have been told to get her moving, which I am sure you know is tough because when they are in pain they don’t feel like doing anything. We are trying Tai Chi with her, it has been recommended by her chronic pain Doctor. If you would like to contact me directly, I can be reached via e-mail at kimmers777@yahoo.com. Kim

  96. I am sixteen years old and i was diagnosed with fibromyalgia last year. I don’t know anyone else with this condition and i’m beginning to get very depressed, my friends think it’s all in my head and get mad when i can’t go do everything with them. i wish i knew someone my age that can tell me they understand and i’m not just being stupid.

  97. I am sixteen years old and i was diagnosed with fibromyalgia last year. I don’t know anyone else with this condition and i’m beginning to get very depressed, my friends think it’s all in my head and get mad when i can’t go do everything with them. i wish i knew someone my age that knows how i feel and can tell me they understand and i’m not just being stupid.

  98. Wow! This sounds exactly what I went through! Every doctor that I saw told me and my parents that nothing was wrong with me and to suck it up, but it got so bad that I had to quit all of my sports. Some days I would wake up and couldn’t feel my knees or just walk across the room and start bawling at the extreme level of pain. Finally a doctor referred us to a rheumatologist, thinking that it might be lupus. Eventually, I ended up with a neurologist and an answer! She put me on Lyrica and I don’t hardly ever feel a thing anymore.

  99. My 14 year old daughter was diagnosed with fibromyalgia back in August and this was after months of being told by numerous doctors that she was just worried teenager. NOT SO. She ended up bed bound, and quite frankly, I am so sick of hearing about these doctor dismissing our children when they say they are in pain and can barely function. Consider the logic here – most teenagers want to and desire having fun and spending time on things they like. They want to be active and succeed. It has been a non-stop train, and even after her diagnosis I have ‘fired’ her doctors for not advocating enough for her in their practices. She has a psychiatrist who prescribes and controls her medications, so if and when we change doctors she does not have a lapse in taking her meds. Having said that, we have found a physiatrist and they are truly the ones to micro treat a fibromyalgia patient, unless you already have a great doctor. You can’t relent; you must, as the parent, demand trying different combinations of medications and treatment plans. With health insurance, ask them for a case manager who will help you get the right care for your child. Last, but not least, PLEASE DO NOT FORCE YOUR CHILD TO GO TO SCHOOL HAVING FIBROMYALGIA. My daughter passed out at school before we knew what she had, and now even on treatment, sitting in a classroom is disabling for her at times and her grades have suffered; stressing her out, giving her flare ups, etc. She will be going to an online high school, and even if you are a working parent, you can still set that up for your child. There are so many to choose from, and it eliminates the need for doctor’s notes and people being in your personal business. It also allows your teenager/child to have time to do things that can be therapeutic for them, and they can rest when they need to. You can protect your child better. We are in the process of creating a website for teens. And listen – if you are a teenager reading this – get your parent to bring you to a rheumatologist for an initial tender point test. It is all about quality of life – if they don’t have that, then we have failed them. It is just heart breaking to see this condition get the best of our awesome teenagers and we must fight for them. Keep doing it and don’t take no for an answer.

  100. Thanks for this article on teen fibromyalgia. I am a teen in middle school who has a ton of issues. I have been to more than 6 doctors and countless shrinks, and none of the doctors helped me until I went to rhumotology in pediatrics. My parents refuse to think of it as fibromyalgia even though the doctor said it was a very strong possibility. I hurt my hip before I started having all these issues, so now I have a chipped joint in my hip, and my fibromyalgia just makes it ten times worse. I have had to be on homebound schooling in which the school didn’t help and made me suffer through 4 months of a living chaos. I have been to more doctors than I can count and I am usually very fatigued by the slightest action. They say exercise can help you, but if you are clumbsy and usually can’t make it through a work out, it is chaos. I have tried physical therapy and aquatics and such, but it doesn’t seem to do any good. I just hurt more and more. The school systems need to be more supportive of teens like me, and surely many others, because they will try to take you down. It was truely cruel when they led me to believe I was doing very well, when I wasn’t at all. I hate that I usually can’t talk to my family because they just complain that I should just get over it and such. Thing is, when it limits you to a point where you cannot move your whole body and your family disapproves of any medicine, you cannot get over it. I found that many anti-inflammatories like Tylenol or Advil or Ibprofin(My spelling of drugs is so bad) they didn’t help at all. I was wondering if that was normal or not. I guess I have too high of standards for school and I have to lower them to cope and go on. My counselor is so against me because my family is very mad at what the school has done. Well that is my experience on all of this. Here is a piece of advice:
    Even when life is painful and you just want to quit, just listen to music. I would not be in a good place without music.

  101. Hi – my 13 year old daughter has been diagnosed with FM and CFs -and suffers 24 hours with pain, brain fog, swollen glands, sore throat etc. For the past year she has been in a wheelchair and unable to attend school – we have a hospital tutor come twice a week which is all she can handle.
    My question is how do we make sure she is not going to suffer later years if she is not walking during her growing years?
    She is standing for 5 seconds every 2 hours during the day and screams in pain every time. There is only so much you can push her through and it seems that if we do push too hard it can make things worse (like sometimes she says she can’t do the stand and we encourage her to do it as we don’t want her to be crippled for life). It’s been 3 years now of hell – started with pain in neck & shoulders after a bike accident – many docs and specialists – some said it’s in her head but most agree it is chronic pain she has but she has to learn to manage it. Has anyone else got to the wheelchair stage? She needs help with toileting and showering and is struggling every day to keep positive but finds her music helps.
    We are in New Zealand so most of the meds you all mention are not available here. Has been on Amitrip and Gabapentin (both no use) and now only on anti-depressant but we are lowering that dose soon and hope to get her off all meds for a while to see if that helps.
    My big worry is that is she doesn’t get back on her feet soon we will have bigger problems with oestoporosis etc in later years.
    any helps much appreciated.
    thanks
    Nicola

  102. My names Nicole, right now I’m 16. Ever since middle school I’ve had these awful, deep aches and pains that have gotten progressively worse over time. It hurts so bad somedays I want to cry. My body keeps getting stiffer and stiffer. It is very hard to do even simple things like going to school everyday and staying all day. I am very depressed and have bad anxiety. I also have extreme, mind numbing headaches almost daily. I’m beginning to think this could be signs of fibromyalgia. I’ve told my mom, but she doesn’t want to believe me. I’m so desperate to relieve this pain. I’m not sure what to do anymore.

    My email: net1995@ymail.com

    Thanks, Nicole.

  103. I am 17 years old. My mother came home from the doctor saying that she got diagnosed with fibromyalgia. She informed me that it was hereditary. She thought that my complaints that I make all the time like my back hurting, my legs hurting, waking up in the middle of the night with my knees hurting super bad, and having insomnia. I am worried, and I’m pretty sure I have it after researching. I also take Cymbalta for my depression and anxiety. I think it’s best to go to the doctor soon

  104. I’m also 18 and I have been experiencing a lot of these problemss. It all started 2 yrs ago with stabbing back pain and chestpains. I ended up in the hospital for dehydration a few days later. Ever since it’s been gradually worse. I’ve been to a pediatrician a cardiologist a orthopedic an a physical thresher vibe had blood work an MRI an s lot of X-rays. I had a headache, ONE headache for 3 months straight… My doctor told me it was migraine. I didn’t believe her. Lights an sounds didn’t bother me. It was just s horrible headache. Even the migrant meds didn’t help. Just made me sleep. Then my orthopedic sent me to physical therapy for my back. After 2 summers of physical therapy, which would help for a few minutes, she told me I had to live with chronic pains for the rest of my life. That I hafta do exercises twice a day to help with the pain. Who has time for that? Not me. Now I’m dealing with horrible hip pain, knee aches, my legs ache and are restless at night, random shoots of pain all over. Muscle spasms alll over my body. I have stomach aches a lot too. Every inche of me Hurts. My lowerback kills an I sleep horribly. I’m always tired. I’ve cryer enough for onelifetime. I can’t take it. Somedays are worse then others. An my parents tell me to take Tylenol, but it does nothing. My dad had thought it was fibro, but onesat we went to a cardiologist and I broke down sn cried. I explains my pain an my dad explained what he thought but she said there was no chance it was fibro. That I need exercise. I can’t do exercise! I can’t even do half the exercises I’m supposed to anymore! I’ve even had to quit kickboxing. :( my doctor says it’s growingpains. Idk what to do. I feel like if I tell my doctor I think it’s fibromyalgia shell think I’m crazy. And wat if she tests me for it an it’s negative? Then shell rlly think I’m crazy! 2 years of constant pain is extremly frustrating. I just don’t know what to do besides cry.

  105. i am so happy i found this sight. im 16, and i went thru the diff doctors and misdiagnosis’ for a year b4 it was officially decided i had fibro. at first we thought i had jra and i was so upset, but then we got a second opinion who said i didnt have jra, but fibro. i was so mad at him. i thought it was the biggest cop out, and he only said that cuz he couldnt think of nething else to say. i refused to accept it. so i went to a third doctor who said i dint have either. i was crying so much in her office. y didnt neone know what was wrong with me? after a long time, it was decided that i rlly did have fibro, but i was so annoyed. what kind of a disease was that, “pain for no reason”? im just starting to accept that its real, which helps. im going to pt for months now and it doesnt help. also going to a psychiatrist, who for some reason wont increase my meds though theyre not helping. im so frustrated w/ evryone! and now the possibility of jra popped up again, on top of the fibro! ive been in pain for so long, and im so sick of it. im about to b kicked out of skool, and i dont even live w/ my parents, so im taking care of myself. what can i do to feel better? no one seems to hav ne ideas…

  106. I’m 16, diagnosed with fibromyalgia several years ago after checking for scoliosis and arthritis and thinking it might be because of my flat feet. I think I’ve had it my whole life – I remember crying when being poked too hard in 1st grade. Things have been difficult, but I’m glad we have an answer and that it isn’t horribly painful for me. My meds work well; if I forget to take them, I hurt horribly. Exercise hurts too much for me to push through it. I’ve heard that more teens are getting it… That sucks.

    @Lauren: Wow, another 16 y/o with fibro named Lauren! Hi :) Meds (muscle relax & pain relief) and chiropractors have helped me. People say heat, exercise, and diet change can help. Check out webmd.com for more advice.

  107. Oh, I was also told I am very flexible – double-jointed everywhere – but I can’t do the splits at all…

  108. hey other lauren :D
    so i was also told it was bec of lordosis and flat feet and hypermobility, but i tly didnt go for it. fibromyalgia was also rlly hard to accept, but i know i have it now. aerobic excersie helps w/ the pain – but not enuf to rlly make a diff for me. my meds dont work at all. the onnly thing that might b helping is the gluten free diet i just tried…

  109. I have that kind of burning acheing pain in my wrists and right hip, no one believes me saying nothing wrong its just growing pains, im 12 and i cant sleep at night this affects my grades and the pain is horrible

  110. im so sorry ur having that kind of pain so young. im ‘lucky’ my pain started in my back so no one cud just brush it off like that. but when ur in skool and no one knows how much pain ur in… i know how hard that is.

  111. Dear Readers,

    My daughter also has been diagnosed fibromyalgia. Again and again dr. after dr, thought she was crazy. test after test nothing wrong. Also homeschooled due to missing too much school and pain. Uncontrollable pain…All my daughter wants is to be a normal teen. Help I need help.

    Allie

  112. My daughter was diagnosed at the age of 12, she had many injuries in dance, karate and gymnastics. She saw at least 15 physicians and is now 20. None of the regular medications for fibro. have worked for her. I am a nurse and have not given up on finding the true cause for her pain. After seeing an endocrinologist is CA, we live in AZ, she was found to have Babesia, human parvo and Brucella. We are waiting for a response from the physician which will be a course of antibiotics. Don’t give up look deep for any possible causes if treatment isn’t working. Physicians tend to label and give up. Don’t give up the search…..

  113. I have a question i have had problems with my bones and muscles for a long time. I am 18 years of age. My worst problem is in my knees. They are soooooo weak. I have had my right one give out on me while I was on the stairs and I fell. I always thought it was because my dad has weak knees but here lately Im not sure. I am easily irritable and have HORRIBLE head aches. My skin is sensitive and right now my whole body is in pain. Its happeneds before but tonight its even worse. The cold air from our central air system is hurting my sking. My knees, wrist, fingers, lower back, ankle, neck, and sholders are hurting bad. It makes me want to cry. I have recently been put on depo vera for my periods and they said it can do something to my bones. but i have had this problem earlier before my bc shot. im so confused

  114. I am 13 girl and I have fibro its horrible! It’s hard to stay fit when your always in pain and when the medicine that helps make u gain weight. I wanted to play sports but I can’t because of my pain.

  115. Im so glad I found a site where people understand. I’m 16 and dealing with Fibro. I was diagnosed about 6 months ago, but it has been terrible I can’t even remember. My dad has it, so at least someone understands what it is like. Everything has been taken away from me. I used to (still do) love volleyball, drawing, playing the guitar, etc. I can’t do anything anymore, it’s just too hard. Sitting through class everyday is unbearable, and no one understands. I try to tell my friends that I hurt, but they just say “Oh yeah, so do I!!” Nothing annoys me more. I feel like im becoming depressed, and the stress of missing school is awful. Before now, i had never even gotten a B in school. Im now getting by with Cs. Ever since i was little, i wanted to be a vet, but i see that dream fading too. I also feel extremely nauseous everyday for no reason. I can barely eat, and ive lost almost 20 pounds. I can’t remember a good nights sleep… I have to constantly kick my legs and like kind of shake (idk how to describe it) just to try and relieve the pain when i try to fall asleep. I’m going to see about homeschooling, but I don’t think it is an option for me. I am extremely double jointed too. Ive been to countless doctors, one of which told me i was just lazy, and i was just recently put in a study for Cymbalta. Im convinced i have the placebo, so we will see when i get the real medicine. Im glad that the study doctors actually understand things. If you know of a study in your area (there are alot currently) SIGN UP FOR IT! Its better than nothing, and they are the ones who diagnosed me. Ive had the typical “no results” on counless bloodtests, xrays, ultrasounds.. you name it. I’m really hoping things are going to get better. Im praying for all of you out there that feel the same, and especially for the ones that deal with so much more than i do. Well, my fingers are now hurting unbearably, so i think ill cut this rambly post off here. I just want to give some comfort to people who feel the same.

  116. I am so glad I found this…. My daughter is 15 and has missed over half of the school year she is going from dr. to dr. each one saying it is not this or that now she has to see a theripist because she does not want to wake up like this another day she just wants to go on sleeping. She feels that she can not be a normal teen. Stays in the house, I am gonna have her dr. check in on seeing a rhum. anybody have any suggestions for me? I pray they do find something so she can at least have meds. to help her do better.

  117. Ok not starting out to be a good morning, can someone tell me what I need to do? My daughters family Dr. says she is not able to write anything for her missing school that it is a legal thing and with the depression and all that my daughter has she thinks she should be put in hospital and have it treated. Oh and that I need a mental medical Dr. to write her a slip if she can’t go to school , the mental medical Dr. said they make it a point NOT to write these out because that is all they would get done doing…..Grrrr I am so tired… guess I will be going to jail before it is all over with!

  118. Ok not starting out to be a good morning, can someone tell me what I need to do? My daughters family Dr. says she is not able to write anything for her missing school that it is a legal thing and with the depression and all that my daughter has she thinks she should be put in hospital and have it treated. Oh and that I need a mental medical Dr. to write her a slip if she can\’t go to school , the mental medical Dr. said they make it a point NOT to write these out because that is all they would get done doing…..Grrrr I am so tired… guess I will be going to jail before it is all over with!

  119. I’m fourteen years old and I just recently started having pain. I don’t know what it is. It has some symptoms of fibromyalgia but others are unexplicable. The pains I have are migratory and extremely sharp. I have a couple of tender spots but they only hurt when they are touched hard. I have a hard time sleeping at night and am fatigued all during the day. At this point, I’ve missed a month of school and am on homebound. My doctors think I’m faking because they don’t know what the problem is and my poor mom is overcome with stress. Please, if you know what this illness is or think it sounds like fibromyalgia, reply to my comment, because I don’t know what to do.

  120. Hi! I’m 15 years old and I was told that I might or rather do have fibro. Thank God my sister is a Physical Therapist. Recently I started under-going physical therapy to help my MPS. We will be seeing a Rheumatologist tomorrow since I still need a proper diagnosis for this and also to check if there is anything that I have beyond fibromyalgia. My family and I experienced the same problems that all of you did. I literally underwent all the freaking tests and scans to see what’s wrong,we’ve wasted so much money already, and nothing seems to appear. I was also told that maybe I was just faking it, which really depressed me, those were the times I felt so isolated and like nobody understands and cares for me. I am actually really glad to find and know that there are people that knows what I have been going through (makes me feel a little bit more normal). But I am still not fine. I don’t know what to do and I always feel terrible. It’s so hard to get up in the morning, and It’s so hard to sleep. I always feel tired and fatigued. I can’t focus and my memory became really bad (which is extremely odd since I am known to have a very sharp and accurate memory). I’ve been so depressed and stressed since i have been skipping school a lot and I just cry all the time. We are considering home schooling right now, do you think this is a good idea?

  121. This story and all these comments are truly inspiring. Im 16and have had pain in my hips for 2 years. i was mis-diagnosed multiple times. My doctor told me recently that I had pain syndrome from depression. I said no that not it, i got sick and it got worse and now i am finally on the road to getting diagnosed and my doctor believes that its fibromyalgia. Im scared and i dont know what to expect, reading this article definetely helped. thank you.

  122. Hi my name is Lyric, I am 16 and I suffer from fibromyalgia, I was never really diagnosed and for a year I suffered with an unknown illness. I missed so much school that I went from being an A and B student to a C and D. I am now currently on independent study and it helps alot. Dealing with this at such a young age is so hard and what helped me get through each day was my parents, its hard not being able to be a kid/teen and its hard when you feel like the odd ball. But I encourage everyone parents and kids alike to stay strong and keep you chin up and never stop fighting. Dont let this control you. If anyone needs to talk email me lyricandoreo@yahoo.com just remember you aren’t alone

  123. There are way to many comments on this! This is unbelievable .my daughter 17 is going through everything yougus are saying . She doesnt go to school cause it’s to painful to even concentrate , she graduated with honors in grade 8. And she’s been going through this since she can remember , what she can anyways … Striking news, I was stuns to read an article that was leaked to Internet . H.P.V. Vaccine ? 17 girls were getting same symptoms and one that we know of ” died. Something is very wrong in the world , so be your own advocate , research and question everything…stay strong and know you all have support /:) and your not alone …my daughter and I have an appoint ment so I can get a urgent consult and start from there <3

  124. So I have been having similar symptoms to fybromyalgia. I’m a 15 yr old female and I’ve had pain in my legs in arms that feel like its deep in the bones and it aches. Its not everyday though, but it has been getting worse recently. Ever since I was younger I’ve had unexplained stomach aches. Right now I’m dealing with bad fatigue. In some points of the day I just suddenly feel like I’ve been drugged and feel like im dragging myself everywhere-not a normal tired feeling. I also have problems going to sleep some nights and I wake up feeling like I never slept. I told my mom that we should look into me having fibro, but she just kind of laughed at me. I know that if we did go to my doctor, who I don’t care for, she would probably just give me a blood test, tell me I was fine and ignore me. I don’t know what to think. Maybe its not fibro? What do you guys think. Some advice? Thanks

  125. Lauren,

    Have you ever had a Celiac Disease Panel done? Celiac is an auto immune disease that can cause a multitude of miscellaneous symptoms that include body pains, intestinal distress, migraines, fatigue, etc….. My daughter was diagnosed when she was 11 and within days of going on a gluten free diet she started feeling better. For the blood test to be accurate you have to be eating gluten. If you have your blood drawn while on a gluten free diet it will give you a false positive. Do some research on the computer on it and you will see what I am talking about.

  126. wow, guys i am a nurse and listening to all of this is heart breaking. we have auto immune diseases in my family. We have 3 generations of narcolepsy with cataplexy. I have cousins with RA and my dad has fibromyalgia. My youngest daughter could be the poster child for a great kid with issues that all girls go through. She is very smart for her own good. She read The Hobbit to me in the second grade and loved but decided that some words were too long so she taught herself how to speed read. THE BAD WAY. example: The bear didn’t look for bees so he ate all the honey before he was stung. She taught herself to skip words or shorten them so she would read:bear ate honey stung. We did not catch on until the middle of 3rd grade and it really caused a lot of problems. She has a type A personality when it comes to school she wants As on everything so when she started have stomach issues I blamed it on stress. Looking back she has always had problems with her stomach even as a baby they believed she had gastritis. In the 7th grade it was getting worse with severe constipation and pain. She got her first diagnosis of IBS and stress from a very kind pediatric gastrointestinal doc at UVA . Started on a low dose of Amitriptyline and increased fiber helped for a little while plus some stress management the attacks were far apart and not as long. In her freshman year she had it all. She was one of the best Cheerleaders her grades were fantastic she had a knee injury from a base fall and lower back injury during another routine but except for girlfriend drama she was doing it all and going for varsity. In Feb 2011 we all contracted a virus but she did not get better. We finally found out that she had mononucleosis. It completely wiped her out she was very weak and recovery was slow. The virus attacked the muscles in her back on the left side so we ended up in the ER. She was treated with NSAIDS and pain killers plus I am a nurse so I did some massage on the muscles. We drove from Virginia to Texas for the summer and went camping. It was a long drive and by the time we got there she was having back pain but it went away. We drove back for the start of the school year 2011. She is still physically weaker than her 9th grade year but she practices everyday and does not over extend herself. One thing she did like was that she had lost 15 pounds. In August everything was going back into routine with school and cheer-leading. It was the day that Virginia had an earthquake August 23 (my husband’s birthday) we picked them up from school no one was hurt but Haven discussed with me that evening that she was really having problems with her back. The school is huge with lots of stairs and all her honors classes had big books so we treated it as back pain but it did not go away. She would describe it as sharp, stabbing, then burning from the left back flank radiating to the front and up her chest. At times it was hard to breathe and she would turn white as a sheet. She still went to school and we had someone carry her backpack, by September we had her at UVA. She was extremely constipated over a week and a half and she would tell her doctors that she was having one of her IBS attacks but the pain from her back was different. Now I wanted you to read this history and the next year I will only do the highlights or i would write a book. She started losing weight and passing out. Every tests known to man for abdominal pain was done upper and lower all normal. Her constipation was horrible but we finally broke it and actually ended her IBS(that tidbit is later). She became so weak that they placed her on home bound. She was devastated no honor courses, governors program, and even language classes but she maintained As on the computer program that Va. set up for home bound students (10 on the course 8 failed 1 passed C and my girl A). We took her on a cruise to cheer her up because she had gone through so much and they still could not stop the pain. When we got back from our cruise (19 hour drive) about 2 days later she started having severe pain and we rushed her to that hospital about 7 or 8 times. During the month of December and January each trip she would cry so hard and for so long she ran out of tears. My daughter is a very private child and would NEVER cry in front of the doctors. Each visit her vital signs average 180/98 with heart rate at 125. Each time more tests, they would tell her they were normal, and that she was constipated, drugged her sent her home and go see her GI doctor or PSYCH. She decided that the ER doctors were just drugging her to get rid of her so over the next few months we practiced lamaze type senarios to get her through the pain. It was hard at first but she did it. She was tested for everything Celiac’s, Lyme Disease, only thing they found was that her body was not producing enough red blood cells so family doctor wanted her to see Hematologist/Oncologist, Neurologist, and Rhumatologist at UVA. My mom read up on Celiac’s disease and found that even people who do not have the gluten allergy will have IBS problems with Gluten. I started limiting her gluten intake 1/14/12 and she was cleared by her GI doctor. She has a extremely slow peristalsis (motility) but as of today she has had 1 IBS attack. So NOW we do not discuss her stomach problems with doctors. The oncologist did more tests but could not find anything wrong. She is still anemic and takes iron. The UVA Rhumatologist and Neurologist looked at her for about 15 minutes and said nothing is wrong with her she needs to see a psychiatrist. Quote ” She needs to quit focusing on her pain issues and depression and go back to school” Stress management doctor told her that it was somatization disorder. Of course she researched it and did not understand how they came up with that disorder. She has ALWAYS told them it was not her IBS. Well now my daughter who was the brightest star out there and would make everyone laugh and cheer has lost almost 50 pounds. This kid planned on jumping out of a plane for her 16th birthday and be the head cheer leader her senior year. She is a Junior and is still making A’s. She can still inspire people as long as they do not touch her because even clothes can cause pain. We have a pain doctor who is really trying to help her. She likes him because he told her no matter what any professional says her pain is real and we will fight it. I know you all know the pain scale 0 no pain 10 screaming. When went to the ER those horrible nights she told them her pain level was 10 and her vital signs proved it. Today her blood pressure is normal 110/68 heart rate is still elevated 80-90s. She sleeps maybe 1 to 2 hours at night. Her best sleeping time is between 8 am and 11 am but that is when she is in school. Last month she told her pain doc that she is beginning to believe that she is crazy. She stands her ground about depression. The pain causes depression, anxiety, and insomnia otherwise she would not have depression and anxiety. She wants to scream at the top of her lungs I WANT MY LIFE BACK. We now see a psychiatrist/therapist group. They said that all the crap she has been through would drive anyone crazy. They wanted her to see one more neurologist in DC for an EEG to rule out seizures. She will continue to see them and acupuncture because they make her feel better. Today she will tell you her pain is 8 which is what she lives with and sometimes when a 9 hits she cant move so she misses school a lot. She keeps moving because she is afraid that she might lose something else. My daughter is suffering from fibromyalgia. We tried Cymbalta, Neurontin but it did not help. She has a TENs unit but she is too sensitive. Today 3/1/2013 we started Lyrica. Well that is my story in a nutshell. We would love ideas, advice, suggestions, anything anything to lower her pain. She will get on here. Support groups are wonderful. Why are our children suffering from these things and why is it almost impossible for a doctor to say fribromyalgia. Where are the treatment protocols? So many questions.

  127. wow, guys i am a nurse and listening to all of this is heart breaking. we have auto immune diseases in my family. We have 3 generations of narcolepsy with cataplexy. I have cousins with RA and my dad has fibromyalgia. My youngest daughter could be the poster child for a great kid with issues that all girls go through. She is very smart for her own good. She read The Hobbit to me in the second grade and loved but decided that some words were too long so she taught herself how to speed read. THE BAD WAY. example: The bear didn\’t look for bees so he ate all the honey before he was stung. She taught herself to skip words or shorten them so she would read:bear ate honey stung. We did not catch on until the middle of 3rd grade and it really caused a lot of problems. She has a type A personality when it comes to school she wants As on everything so when she started have stomach issues I blamed it on stress. Looking back she has always had problems with her stomach even as a baby they believed she had gastritis. In the 7th grade it was getting worse with severe constipation and pain. She got her first diagnosis of IBS and stress from a very kind pediatric gastrointestinal doc at UVA . Started on a low dose of Amitriptyline and increased fiber helped for a little while plus some stress management the attacks were far apart and not as long. In her freshman year she had it all. She was one of the best Cheerleaders her grades were fantastic she had a knee injury from a base fall and lower back injury during another routine but except for girlfriend drama she was doing it all and going for varsity. In Feb 2011 we all contracted a virus but she did not get better. We finally found out that she had mononucleosis. It completely wiped her out she was very weak and recovery was slow. The virus attacked the muscles in her back on the left side so we ended up in the ER. She was treated with NSAIDS and pain killers plus I am a nurse so I did some massage on the muscles. We drove from Virginia to Texas for the summer and went camping. It was a long drive and by the time we got there she was having back pain but it went away. We drove back for the start of the school year 2011. She is still physically weaker than her 9th grade year but she practices everyday and does not over extend herself. One thing she did like was that she had lost 15 pounds. In August everything was going back into routine with school and cheer-leading. It was the day that Virginia had an earthquake August 23 (my husband\’s birthday) we picked them up from school no one was hurt but Haven discussed with me that evening that she was really having problems with her back. The school is huge with lots of stairs and all her honors classes had big books so we treated it as back pain but it did not go away. She would describe it as sharp, stabbing, then burning from the left back flank radiating to the front and up her chest. At times it was hard to breathe and she would turn white as a sheet. She still went to school and we had someone carry her backpack, by September we had her at UVA. She was extremely constipated over a week and a half and she would tell her doctors that she was having one of her IBS attacks but the pain from her back was different. Now I wanted you to read this history and the next year I will only do the highlights or i would write a book. She started losing weight and passing out. Every tests known to man for abdominal pain was done upper and lower all normal. Her constipation was horrible but we finally broke it and actually ended her IBS(that tidbit is later). She became so weak that they placed her on home bound. She was devastated no honor courses, governors program, and even language classes but she maintained As on the computer program that Va. set up for home bound students (10 on the course 8 failed 1 passed C and my girl A). We took her on a cruise to cheer her up because she had gone through so much and they still could not stop the pain. When we got back from our cruise (19 hour drive) about 2 days later she started having severe pain and we rushed her to that hospital about 7 or 8 times. During the month of December and January each trip she would cry so hard and for so long she ran out of tears. My daughter is a very private child and would NEVER cry in front of the doctors. Each visit her vital signs average 180/98 with heart rate at 125. Each time more tests, they would tell her they were normal, and that she was constipated, drugged her sent her home and go see her GI doctor or PSYCH. She decided that the ER doctors were just drugging her to get rid of her so over the next few months we practiced lamaze type senarios to get her through the pain. It was hard at first but she did it. She was tested for everything Celiac\’s, Lyme Disease, only thing they found was that her body was not producing enough red blood cells so family doctor wanted her to see Hematologist/Oncologist, Neurologist, and Rhumatologist at UVA. My mom read up on Celiac\’s disease and found that even people who do not have the gluten allergy will have IBS problems with Gluten. I started limiting her gluten intake 1/14/12 and she was cleared by her GI doctor. She has a extremely slow peristalsis (motility) but as of today she has had 1 IBS attack. So NOW we do not discuss her stomach problems with doctors. The oncologist did more tests but could not find anything wrong. She is still anemic and takes iron. The UVA Rhumatologist and Neurologist looked at her for about 15 minutes and said nothing is wrong with her she needs to see a psychiatrist. Quote \” She needs to quit focusing on her pain issues and depression and go back to school\” Stress management doctor told her that it was somatization disorder. Of course she researched it and did not understand how they came up with that disorder. She has ALWAYS told them it was not her IBS. Well now my daughter who was the brightest star out there and would make everyone laugh and cheer has lost almost 50 pounds. This kid planned on jumping out of a plane for her 16th birthday and be the head cheer leader her senior year. She is a Junior and is still making A\’s. She can still inspire people as long as they do not touch her because even clothes can cause pain. We have a pain doctor who is really trying to help her. She likes him because he told her no matter what any professional says her pain is real and we will fight it. I know you all know the pain scale 0 no pain 10 screaming. When went to the ER those horrible nights she told them her pain level was 10 and her vital signs proved it. Today her blood pressure is normal 110/68 heart rate is still elevated 80-90s. She sleeps maybe 1 to 2 hours at night. Her best sleeping time is between 8 am and 11 am but that is when she is in school. Last month she told her pain doc that she is beginning to believe that she is crazy. She stands her ground about depression. The pain causes depression, anxiety, and insomnia otherwise she would not have depression and anxiety. She wants to scream at the top of her lungs I WANT MY LIFE BACK. We now see a psychiatrist/therapist group. They said that all the crap she has been through would drive anyone crazy. They wanted her to see one more neurologist in DC for an EEG to rule out seizures. She will continue to see them and acupuncture because they make her feel better. Today she will tell you her pain is 8 which is what she lives with and sometimes when a 9 hits she cant move so she misses school a lot. She keeps moving because she is afraid that she might lose something else. My daughter is suffering from fibromyalgia. We tried Cymbalta, Neurontin but it did not help. She has a TENs unit but she is too sensitive. Today 3/1/2013 we started Lyrica. Well that is my story in a nutshell. We would love ideas, advice, suggestions, anything anything to lower her pain. She will get on here. Support groups are wonderful. Why are our children suffering from these things and why is it almost impossible for a doctor to say fribromyalgia. Where are the treatment protocols? So many questions.

RSSPost a Comment
comments powered by Disqus
-->