16years old with child's form of fibromyalgia, any advice?

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New Member

Date Joined Jan 2009
Total Posts : 17
   Posted 1/6/2009 2:29 PM (GMT -7)   
I am 16 years old and have a child's form of fibromyalgia called Amplified Pain Syndrome. I got it in October and have had it ever since. I go to PT twice a week and fitness 3 times a week. I'm being home schooled because it's too difficult going to school. No medications so far, have helped. Last year, (my freshmen year) I got Epstein Barr virus which caused mono so I was out of school for about 2 months. It also caused a constant (24/7) headache. I got that last January and have had it for a whole year now. Now I have amplified pain syndrome and I've just been diagnosed with plantars fasciitis. It's not commonly found among children my age. I decided to go on chat rooms because I really want to hear from people who've actually experienced it instead of people who just learned about it (doctors)!

I guess I'd like to know, regarding fibromyalgia:
1. How old you are?
2. How long you've had it for?
3. What are you doing for it?
4. Are you on any medication, do they?
5. Does anything make it feel better?
6. What do you do to get your mind off of it?

Thanks so much! Your answers are highly appreciated!

Regular Member

Date Joined Nov 2008
Total Posts : 263
   Posted 1/6/2009 2:50 PM (GMT -7)   
Hi Kayla,
I'm 50 and have only had fibromyalgia for about a year.
I think it's good if you can manage somehow without medication - you're very young to be taking meds!
From my experience this illness is stress-related, or at least it gets much worse with stress. The worst kind of stress is family stress so it's difficult to manage. But hopefully for you it will go into remission soon.
All the best!
I have Fibromyalgia, and nothing else!
I take Lyrica 225 mg/day and Tramadol (150mg time-released)

Regular Member

Date Joined Jan 2009
Total Posts : 386
   Posted 1/6/2009 4:16 PM (GMT -7)   
Hi Kayla,
Welcome...I am 42, was diagnosed with FM 1/2008 but I have been fighting for an answer to my symptoms for 3 years.  As far as I know so far I don't have any other forms of illnesses (I still have tests out,haven't gotten the results yet). My ID(infectious disease) doc and Rhume(rhuemetologist) think I've had FM for at least the last 10 yrs.  As far as what I am doing for it, well I have tried lots of different meds and the latest combo is gabapentin, pristiq,ultracet and I get cortisone injections in both my hips every 3 months (which last me about 6 weeks,then I can't walk or stand to long) I finally purchased a recumbent bike and I "move" the pedals round for at 15 to 30 min. 3x a week.  I work full time and I use a heating pad their as well as home. 
I think what makes me feel better is knowing I'm not alone, thanx to support groups as this and very caring family members.
Keep up the good work your doing on finding all you can about this disease.  You will have some good days, Hang in There!
Soft Hugs,

Regular Member

Date Joined Dec 2008
Total Posts : 176
   Posted 1/6/2009 5:46 PM (GMT -7)   
Hi Kayla!!!!!
I am only 21 years old.
I have only had Fibro for about a year, and wasn't diagnosed with it until December '08!
I try all I can to manage my stress.. I meditate daily, which is part of my religion, but with all religion aside, it's good for everyone and it may help you too to clear your mind and relax your body!!! They have sites and books on how to do it properly.
Here is a good site you can look at if you are interested:
I am avoiding taking meds for the Fibro because I am on others for mental illnesses I have had my whole life, and too many meds are not good for anybody!!!!!!!!
This forum has honestly helped me a lot also because we are not alone :-) which is a wonderful feeling!!!!!!
I am sorry you are going through this at such a young age (I am young also as you know now!!)
I wish you all the luck in the world.

Fibromyalgia, Bipolar Disorder, Hallucinations, OCD, Chemical/Noise/Light Sensitivity, Irrational fears

Regular Member

Date Joined Jul 2008
Total Posts : 408
   Posted 1/6/2009 6:36 PM (GMT -7)   

It hurts me deeply to think that so many young people are being stricken with this horrible disorder.  I am so sorry that you have to deal with all of this.  I am 42 years old and was diagnosed about three years ago.  I have a daughter your age and can't imagine her having to feel this kind of pain.  I have not heard of Amplified Pain Syndrome but I also had never heard of Fibro until I was stricken with it.

I think if I were to give you any advise it would be to try and be as stress free as you can.  You may also want to consider any triggers in your life that you are able to change.  For me one is the foods that I eat, certain things make my fibro worse, one is sugar.  When I stay away from it I feel better.  A consistant daily routine may help also.  Go to bed the same time every day and get up the same time every day.

I do have to say that finding this forum was a great help also.  It help to have someone to talk to and also it made me aware of the fact that I am not alone.  So stick around and we can help each other.


Fibromyalgia, Irritable Bowel Syndrome, Restless Leg Syndrome, Migraines
42 year old proud mom of three daughters

Regular Member

Date Joined Dec 2008
Total Posts : 139
   Posted 1/6/2009 9:15 PM (GMT -7)   
I'm 19 and I'm not entirely sure how long I've had it. I think I even had it at your age! I was diagnosed a few months ago officially. I am on neumerous different medications, although I haven't really found anything that works for me. I love my flax seed neck warmer and the moist heat it provides. I also use numbing gels to rub on my joints and muscles. They don't last for long but it feels like a shot of Novicane where ever it hurts. I've also recently began taking yoga classes again and I really enjoy them. To get my mind off of it I spend a lot of time with my animals. I have two kittens and a rabbit. Taking care of them reminds me that I am not the only person in the world. They are also unconditionaly loving and very comforting. I'm also a full time college student which keeps me working through the pain, weither I think I can or not. :-)

This forum is very helpful and you should definately use it as a resource. There are young people around here (and older ones too) who know what you're going through and we're all very willing to help with whatever you need!
Fibromyalgia: 2008

Effexor 150 mg, Flexril 5 mg, Gabapentin 600 mg

Regular Member

Date Joined Jul 2008
Total Posts : 368
   Posted 1/7/2009 5:32 AM (GMT -7)   

Hi and welcome, you have made a good step in joining forum because even if they cant help in an instance they will still support you.  I have had it  for 3 years, it took two docs and two pain specialists to be taken seriously.  When I first got it I was put on Lyrica and most are on it plus I neeeded something for pain and for sleep.  For pain it was so severe I get my med from spec  but for sleep I take valium from norm doc.  Address those two things     Pain and Sleep.    I hope its not to bad for you..   sue2z sad sad

Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica

Veteran Member

Date Joined Jul 2007
Total Posts : 1303
   Posted 1/7/2009 7:52 AM (GMT -7)   

I dont know what to say. I feel like Im reading a paragraph that I wrote myself...

Im 17 years old and I know EXACTLY what you are talking about. If I may ask, where about do you live?
I recently went to a doctor who gave me a video about the amplified pain stuff. This is SO crazy though because its like I wrote that... lol Sorry. Umm..let me explain. I have been on the site since I was 15. At that time I had basically self diagnosed myself with Fibro. My doctors kept passing me around and couldnt find anything wrong.
When I told them about Fibro they tried Lyrica, and it has helped me, so they concluded that I had it. I went 2 weeks ago to a specialist who worked under Dr. Sherry(Philadelphia specializes in amplified pain, maybe you've heard of him) But, this Dr. confirmed what I had. Although, Im still being tested for different things!

I was diagnosed with plantar fasciitis when I was 13! And I ended up having to have surgery for it because nothing else was helping. I had it 9 days before my 14th birthday! lol So, your not alone in the young diagnosis of that! I was the youngest person my doctor had seen with it, I went in his record book! lol

I've been going to PT for an ankle injury, but Im supposed to start PT for the Fibro next week. Although, right now Im really sick, about to go to the doctor. It seemed like a reaction to giving blood, but it was flu-like symtpoms...but its been up and down and all my symptoms keep changing, so Im not sure whats going on!

1. How old you are? 17
2. How long you've had it for? I've had pain since I has 12
3. What are you doing for it? I take Lyrica. and Paxil for anxiety and such. and Im starting PT
4. Are you on any medication, do they? Lyrica. It helped. mostly with sleep. but I can tell a difference.
5. Does anything make it feel better? hmm, good question! not really! sometimes heat helps...
6. What do you do to get your mind off of it? I like to draw/write/paint, I like being with my friends. no one would know I had it if I didnt tell them. I dont like to show it. Im a perfectionist and I dont prefer showing my weaknesses to anyone!

So, umm, you can email me if you want. Just click on my name. Its always nice to find someone who understands! Although, Im not convinced because I still go to school. Im not sure why I dont seem to be as "bad" as most people, ya know. I wish I didnt have to go to school! I begged once to be homeschooled!!

Well, Im pretty sick right now so...its been a week and I have a fever so I think Im going to the doctor in a bit... And remember, if you want to talk, Im totally here, email me! =] Take Care...

Ah, this is so weird... not used to knowing someone who actually like..relates so much..geez! lol
Lyrica and Paxil (both working quite well might I add!)
   "Cracks in the concrete are just reminders that you fall apart no matter how strong you are"
    "Sometimes it is best to forget what you feel and remember what you deserve"
    "Im going to smile like nothing is wrong, talk like everything is perfect, act like its all a dream, and pretend its not hurting me."

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 1/7/2009 8:36 AM (GMT -7)   
Hi Kayla and welcome. I'm glad Christi seen your post I know she will be a big help to you. I was in my 50s when I was dxd with fibro. I do not take any narcotics for fibro I take 100 mg of amitriptyline and xanax at night to sleep.
Read the fibro 101 thread, second on first page, it contains a lot of great info. Read and ask questions and we will be here for you.
Orlo, what kind of numbing gel do you use???
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
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Regular Member

Date Joined Feb 2008
Total Posts : 233
   Posted 1/7/2009 12:20 PM (GMT -7)   

Hello Kayla and welcome to the forum.  I am 56 and have had fibro since I was 4yrs old.  That's right 4yrs old.  Many people choose to try to treat their fibro and other conditions without the aid of meds and I congratulate those who can manage it.  Some of us take more meds than we'd really like, but as far as I'm concerned, whatever works is good for me.  I believe that your attitude is the most important tool that you have to fight the pain and stress.  You must have a positive outlook.  You need to have a doctor that is knowledgable about your conditions.  You need to educate yourself as much as possible about you conditions so that when you go to the doctor you are armed with knowledge and intelligent questions.

I know that it is very difficult to force yourself to go to school, I know what I went thru, but it is one very good way to distract your mind off yourself and onto other things.  Sometimes you just have  to dig deep within yourself and find the strength.  I know that is not easy.  The more you can occupy yourself with your friends and things that you enjoy will help to lower the stress.  Stress and pain are a vicious cycle, each causes the other to get worse.

Exercise is also very important.  There are lots of different things to try.  Swimming, walking, biking, pilates, gentle stretching, yoga, meditation just to name a few.  And don't forget to laugh, laughter is very important.  Watch a funny movie, tell jokes with your friends, whatever is good for you.

I don't mean to sound harse or scare you, but these are conditions that you will probably have to deal with for the rest of your life.  The sooner you accept this and learn to manage it the better off you will be.  There's a great big world out there and you need to learn how to be a part of it and enjoy it as much as possible.  Little by little you will learn to automatically adjust the way you do things to make activities possible for you.  i love to travel and believe me, I don't let any of my medical conditions rule my life, don't let them rule yours.  You are young and you can do it, I just know you can.  I wish you all the best of luck and all the happiness you so richly deserve.

Gentle hugs,
Fibro, Osteoporosis, OA, RA, DDD, IBS, Vertigo, Tinnitus, Carpel Tunnel, Epilepsy, TMJ,  Hypothyroidism, Familial Tremors, Spasms, Neuropathy, Trigeminal neuralgia, heel spurs

New Member

Date Joined Jan 2009
Total Posts : 17
   Posted 1/7/2009 12:36 PM (GMT -7)   
Thanks to everyone that's responded. I will definitely keep all of your responses in the back of my head. I do wonder, what kind of medication are you taking. I'm taking 75mg Lyrica & 5mg of Ellavil. Do your medications help you if you are even on them?
16 Years old

Fibromyalgia, plantars fasciitis, constant migrane, depression

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/7/2009 12:46 PM (GMT -7)   
Hi Kayla, welcome to the forum. You sound very determined to get well! That is wonderful.  As you can see, there are a fair number of young women here who you'll be able to relate to very well.  Have you been tested for Lupus?  Epstein Barr and Mono are very common triggers for Lupus.
1. How old you are? 34
2. How long you've had it for? I started having symptoms of Fibro and Lupus in highschool.
3. What are you doing for it? I take Neurontin (Gabapentin), which works fairly well. I do stretching, and I'll be starting PT.
4. Are you on any medication, do they? Neurontin, Amitriptyline (for sleep). both work okay.
5. Does anything make it feel better? Hehe... NO.
6. What do you do to get your mind off of it? Good question. I seem to have it on the brain 24/7 sometimes. Most of the time, I keep myself occupied with work or spending time with friends/family.  It's not easy to brush aside when the pain is always there.
I also have plantar fascitis. I've had it for 9 months now and I'm about to go insane from the pain and inability to stay on my feet. I got custom orthotics made and I pick them up this afternoon.  I'm praying that they will make a huge difference.  I'll let you and everyone else know if they do!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Moderator for the Lupus and Fibromyalgia forums

Regular Member

Date Joined Nov 2008
Total Posts : 103
   Posted 1/9/2009 9:54 AM (GMT -7)   

just saw this, and i've been away, but i wanted to answer it still, even though it's a little old.

I'm 18.
I've had fibro since i was 11.
Currently, im not really doing anything. well, i do go to the doctor. I use to take meds in the begining, but they never worked and the side effects didn't make it worth it.
it's been bad lately, so i've given in and decided to try meds again. i'm probably going to go to a pain center in philly soon, for the meds, since thats closer to me at college, then my doctor at home, and i need a new one soon anyways, when i'm 21.

not, really sure what makes me better. i like just hanging out with my friends, cause it's easier to forget about the pain when im having fun and with my friends.

to get my mind off of it, i like to draw (but im really bad at it), write, and hand out with my friends.

when im in alot of pain, i write and draw, even though it hurts alot, i still do it. i'm not sure how, but it helps somehow.

i think that answers your questions. if you have any other questions, feel free to ask.

"never regret something that made you smile"

Regular Member

Date Joined Jan 2009
Total Posts : 41
   Posted 1/9/2009 10:17 AM (GMT -7)   
Hi Kayla,
I am 41 and was diagnosed about 3 years ago. I think the problem you may be facing with people who have never heard of this is because Fibromyalgia is not widely believed to be a real disorder by many doctors.
Thankfully, that is changing, and in turn they are realizing that symptoms that used to be dismissed as anxiety or depression are actually symptoms of Fibromyalgia. I think it is great that more and more young people are getting this diagnosis early. It will help to identify, and control many aspects of it early on.

Hope you find lots of support here!

New Member

Date Joined Jan 2009
Total Posts : 14
   Posted 1/27/2009 11:37 PM (GMT -7)   
I'm fifteen, and I was diagnosed about a month ago. I have been researching it for a while, and after learning about the symptoms, I realized I've showed them since I was eleven. In October I went to rheumatoid arthritis at Stanford Hospital and they said I was most likely going to develop it, then went to the Stanford Pain Clinic and was diagnosed in January. I can definitely sympathize and relate to you, it really sucks to have it so young. I'm not homeschooled and it's really hard for me to keep up with my work and focus in class.

I also go to PT 2 times a week, I do biofeedback, and therapy. I don't like biofeedback, it always gives me a bad headache and it's exhausting.

I was prescribed Celebrex...which is an anti-inflammatory. I think I was prescribed that because I have bad costochondritis, but it isn't helping at all. To be honest, nothing really makes me feel better. In addition to fibro I have other medical problems, and they are always getting in the way of each other. It's really difficult for me to get proper exercise because of my patella femoral (I can't run, it hurts to even walk) and I have chronic headaches. The only thing that helps is using heating pads. And that doesn't even help a lot.

As for taking my mind off it...that's basically impossible.

That wasn't much help...But I hope you find something that makes you feel better. Good luck.

New Member

Date Joined Feb 2009
Total Posts : 1
   Posted 2/1/2009 5:22 PM (GMT -7)   
Hi Kayla,
  I am currently 19 years old and i have been dealing with amplified pain syndrom for over two years.  Mine has settled in my upper back. I also have Plantar Faciitis.  No medications ever helped the pain, though i have taken muscle relaxers to help me sleep better through it.
  I understand how much pain you must be in, it sucks there is nothing else to say but that. It can also be very stressful because i know with me all the doctors thought i was crazy and making everything up.  It all starts to take its toll on you mentally, i have also found out it is increased and caused by stress.  I got mine i believe by a back injury.  Anyways, its good that you are going to therapy but your not going enough. Physical therapy will probally be the only thing to ever help you.  I went to severel PT places throughout the years it it was like you, only once or twice a week.  Eventually after going from therapist to therapist i found a place that worked for me.  I was lucky enough to finally get a therapist that understood my pain and what i was dealing with.  We discovered that intensive physical therapy was the way to go as opposed to gradually working into it. I went every day for 2 hours for almost a month with doing an exersize program that would be even challenging to a proffesional athlete.  Im not going to lie it was very hard but with in the first week i felt different i felt so much better and stronger it was unreal.  It has now been about a year since i have felt any signifigant amount of pain.  On occassion it will flair up but as soon as i feel it coming i start my work out program and it stays in check.  Doing anything physically will drastically help event hough i know how bad it will hurt later on after.  You have to push through the pain to get better her is a web site that i found to be very helpful
I hope everything works out for you get better i know how painful it is and you are not alone just stay strong and dont give up i know sometimes it will seem hopeless but keep pushing through you can and will get better
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