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.
Then I found a wonderful doctor. A kidney specialist. He listened to me. He listened to Nicholas and he said the most wonderful words. “This isn’t normal. There is something wrong.” He did tests. He did an ANA test. It came back positive. He thought he might have lupus. He referred me to a Rheumatologists.
Okay I had something! I did research it could be lupus. No he’s not a middle age woman but who cares. I was looking for an answer. We showed up at the rheum’s office. All I had was a large stack of medical records and hope. We went in. Then she asked for the records. She picked up the ANA report and immediately tells me that the lab made a mistake. They read the results wrong his test is negative he doesn‘t have lupus. I was crushed. Which is horrible! I’m glad he doesn’t have lupus but I wanted to find out what he did have.
She sat down and thoroughly quizzed us. She made notes. She asked about everything. Nicholas was telling her his symptoms. About the pain how his legs jerk at night and he thinks he has “Restless leg syndrome like on TV.” At this point I felt like crawling out of there. He never mentioned it to me before. We had been rejected by so many doctors and now he’s taking about this crazy thing he saw on TV. She was just nodding and writing notes. Lots and lots of notes. She then begins examining him. “He’s very stretchy”. She says. I mention his feet hurt when he runs because his arch straightens out according to the foot drs. She nods. She has him touch his toes. He misses by about a foot. She says he’s stiff. How can you be stiff and stretchy at the same time? I wondered. She finishes the exam and announces that he has Fibromyalgia. I couldn’t breathe. “You think he has fibro?” I asked. “No, I know he has Fibromyalgia, he is a textbook case.”
And there it was the answer. He wasn’t crazy. I wasn’t crazy. It is real. Fibro is real. And there is hope and people who believe. Nicholas has been doing much better lately. He still has bad days but they don’t seem quit as bad.
I hope this has helped! Please visit my follw up article “I don’t have time for fibro!”
http://www.healthmad.com/Conditions-and-Diseases/I-Dont-Have-Time-for-Fibro.329127
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Kat | Sep 24, 2007 | Reply
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.
Donna | Sep 26, 2007 | Reply
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.
DebiAC012553 | Oct 6, 2007 | Reply
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.
Loriann | Oct 6, 2007 | Reply
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.
Anonymous | Nov 11, 2007 | Reply
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hacjacinCA | Jan 16, 2008 | Reply
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.
Jackie | Feb 28, 2008 | Reply
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?
sickalot | May 26, 2008 | Reply
that sounds just like me and i was just diagnosed im 16 and still suffuring very much
Bre | Jun 15, 2008 | Reply
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.
hailstorm | Jun 23, 2008 | Reply
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!
gabi | Jul 23, 2008 | Reply
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
cynthiav | Oct 28, 2008 | Reply
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!
loriky | Oct 28, 2008 | Reply
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.
Erin | Nov 15, 2008 | Reply
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?
myisland | Dec 6, 2008 | Reply
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.
kayla | Dec 28, 2008 | Reply
i know what your going threw, im 14 and i was just dianosed this summer with fibromalgia.
LeAnn | Jan 7, 2009 | Reply
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.
Joan | Jan 7, 2009 | Reply
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.
LeAnn | Jan 7, 2009 | Reply
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!
Sara | Jan 9, 2009 | Reply
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
Lela | Jan 13, 2009 | Reply
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.
Mary | Jan 16, 2009 | Reply
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?
Kim | Jan 17, 2009 | Reply
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.
LeAnn | Jan 20, 2009 | Reply
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!
lorilynn | Jan 20, 2009 | Reply
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!
Laci | Jan 23, 2009 | Reply
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?
Mary | Jan 26, 2009 | Reply
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.
Erin | Jan 27, 2009 | Reply
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.
Jeanine | Feb 4, 2009 | Reply
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.
Liz | Feb 7, 2009 | Reply
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?
Meagan | Feb 11, 2009 | Reply
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.
Christy | Feb 25, 2009 | Reply
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?
Lorna | Feb 26, 2009 | Reply
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.
Em | Mar 1, 2009 | Reply
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
Steph | Mar 9, 2009 | Reply
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….
LAUREN | Mar 19, 2009 | Reply
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!
TERESA | Mar 26, 2009 | Reply
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.
Nancy | Apr 7, 2009 | Reply
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!
Rebekah | Apr 13, 2009 | Reply
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
Janet | Apr 26, 2009 | Reply
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.
Lynn | Apr 29, 2009 | Reply
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.
Cheyene | May 8, 2009 | Reply
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.
Grace | May 15, 2009 | Reply
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.
Janet | May 16, 2009 | Reply
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.
Cathy | May 21, 2009 | Reply
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 ?
Mark | Jun 4, 2009 | Reply
Can you please contact me privately as I would like to share with you what has helped me. elcd06@yahoo.com
Jacie | Jun 8, 2009 | Reply
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.
Jill | Jun 10, 2009 | Reply
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.
Lorali | Jun 19, 2009 | Reply
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.
Katie | Jul 24, 2009 | Reply
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
Katie | Jul 24, 2009 | Reply
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
Lydia Amoruso | Aug 4, 2009 | Reply
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
Lydia Amoruso | Aug 8, 2009 | Reply
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
lorilynn | Aug 8, 2009 | Reply
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.
Barb | Aug 21, 2009 | Reply
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.
Abby Lynn | Aug 21, 2009 | Reply
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.
Anthony Hoang | Sep 1, 2009 | Reply
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.
Jess | Sep 6, 2009 | Reply
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.
Jess | Sep 6, 2009 | Reply
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.
Jess | Sep 6, 2009 | Reply
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!!!!
lorilynn | Sep 7, 2009 | Reply
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
Nicki | Oct 1, 2009 | Reply
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.
Nick | Oct 8, 2009 | Reply
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.
Marissa | Oct 20, 2009 | Reply
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.
Katie | Nov 2, 2009 | Reply
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
Lauran | Nov 4, 2009 | Reply
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.