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fibromyalgia and teens
lovemyteen posted:
My 17 year old has just been diagnosed with fibromyalgia. She has been in constant pain over the past few weeks. This is a new diagnosis for us. I do not know anyone else with this diagnosis. I'm wondering if there are any other teens out there with this diagnosis and how you are handling school, social life and just having fun.
Meme0221 responded:

There are so many young ones who have it... I was barely a teen when I was dx! I've had FM now for 18 years, along with mulitple autoimmune diseases. We've had them as young as 16 yrs on up in the teens post on here..Most didn't stay.. Some, come just to get informed then they move on. We do have some in their very early twenties... I'm 31 yrs old.

It was very hard for me going to school, then I was working my entire Sr. year.. I got married & worked for 5 yrs. At the age of 23 I was on full disability! That's not to scare either of you.. We all have different severitys & degree's of pain & limitations..

She will have to learn to not over do and to stop before she feels to bad, because she can go into a flare up. Which is the worst pain ever. A week ago I was not able to walk for 2 days.. I was crawling or my husband had to carry me..

In time she will learn her limitations... One day she may feel ok, then take advantage of it and end up paying for big time the next day! So even when she feels "ok" she needs to take it easy. Basically she needs to take a break when she feels tired or just before she gets to that point of exhaustion & pain... Pace - Pace - Pace, is a MUST!

Please, keep in mind the weekends are very slow... During the week days it's very fast... So you may get fewer replies.. You can always repost your message come Monday if you need more info or just want to hear from more peopel to get different opinions.

We are very close here.. We call ourselves FMily.... I want to personally invite your daughter to join us if your both comfortable with her doing so. We are a great wonderful group here!! Very warm and friendly. This would be a great outlet for her to share her struggles with us as we are the only ones who can truly "get it"... It's so hard for others to imagine having pain 24/7. Many cannot phathom that at all... Their used to going to the dr, getting meds and in a few days they are better.. Not with FM.

Is she on any meds for treatment?? They usually start you out on antidepressants, which help with sleep & some pain, depending... Then they may add a muscle relaxer to the mix.. down the road a non narcotic pain med, etc.. FM is NOT an inflamatory condition, therefore NAISDS do not typically work for FM.

I'll send you some tips & sites that you both may find to be of great help! I will post it in a new reply under your post...

I wish your daughter the best!! Hopfully she has a great Rheumatologist, to take good care of her needs..

Best Wishes, MeMe
Meme0221 responded:
  • The most important & most difficult is ACCEPTANCE! Then learning to live within your new found limitations. Setting realistic goals and making changes. Learning to say NO.

  • Acceptance of the "New You" is so important in keeping your self confidence, security, & inner strength! You are still YOU, just differently abled. I firmly believe in remembering/accepting all that you DO have to offer, dispite your current limitations!

  • Pacing yoursef is a MUST, even on good days. LISTEN to your body! Getting restorative/restful nights sleep is important. Rest & take breaks when your tired.

  • Taking hot baths & soaking in epsom salt helps to alleviate the pain & stiffness! Heating pad, electric blankets, Therma Care patches are also helpful.

  • Doing gentle stretches before & after getting out of bed, and after a hot bath helps to loosen tight muscles, taking deep breaths as you do them.

  • Massage & hot stone therapy is a great alternative for temporary relief.

  • Walking & warm water aerobics is a gentle way of getting in excercise into your weekly routine. This helps to keep you mobile. You cannot feel your weight in pounds in the water, as you don't feel your pain. This feels really good. Most dr's highly recommend this form of exercise for FM patients.

  • Doing gentle excercises & stretches are good habits to keep muscle strength and tone. Exercise body balls are great for stretching!

  • Simplify your life. Avoiding/preventing as much stress in all areas of our lives as much as possible is key, as this fuels added pain.

  • Following the recommendations of your dr & taking prescriptions as prescribe, responsibly.

  • Educate yourself & family. Keep up with new research. Print out info for friends/family.

  • Learning to ask for help, can be very beneficial, as this will relieve you of some tasks others can do.

  • Have a good support system. Staying connected with other people to avoid isolation & depression.

  • Excercise your brain daily to help keep your mental faculties stronger & to help brain fog by doing cross words games/looking up new words in the dictionary. Challenge your mind doing mental exercises to keep your mind sharp.

  • Know that FM is not life threatening! Accept your symptoms wax & wane, but flares are transient and ultimately improve.

  • Try to let go of your fears and the "what ifs" and accept that life is different for you and believe & know that it can still be wonderful.

    Websites for FM: (FibroAware Magazine & FREE Newsletter)

    ~Simple Explanation of FM~

    ~"A Letter to the Healthy World from the Land of Chronic Pain & Fatigue"~

    ~FM Med. Info~

    fibroinsd responded:
    Along with Meme, I want to welcome you to this page. We are just people here that have Fm and are here to support each other. I hope you will read posts, and feel comfortable to allow your daughter to also post to us. It is great to have both of you here, and I think it will help you to have conversations about what is going on.

    I was lucky enough not to be dx with this until later in life, but we all have these things to deal with. Getting on some meds may make her feel better, and help her get more sleep, but she will have to be open and honest about what she can and cannot do. There will be times when she just needs to spend some time sleeping. We will also explain that sometimes she will need to do some gentle exercises and get her blood moving.

    The one benefit of this condition is that you need to spend time listening to your body and your needs. You need to spend time, slowing down and enjoying the small things in life. She can still have a good life, it just may be different that she thought of it before.

    We do have many young people on here, and I am sure they will be glad to pop up and say hi, so do check back.

    Oh yes, and most importantly, get a heating pad. Just something from the does help.

    debra03 responded:
    hi. I've had chronic pain all my life but wasn't ex with fibro until a few months ago. It is genetic. I pushed thru the pain as a teenager b/c I was so used to it. I was put on diff birth control since I had such severe cramps/menstral cycles. (a symptom of FM) and pain meds. It's generally easier for teens to control/be stress free. Stress causes pain. She has to remember to be young and have fun...try her best not to let it get in the way of being her. This is the right place to be. Everyone is great and you can ask anything and everything you need too. This is something that will be with her forever. Have a good doctor! Good luck...debra
    Dollbug responded:
    Hello and welcome....MiMi in NC...I can not imagine being a teen again and having the wrath of the dragon, aka FM to live daughter needs a lot of support....that is probably the best you can do for her and help her find a good doctor who treats it...please believe her when she tells you she is in pain and/or so tired that she can not do anything...I also have chronic fatigue..and I can assure you that having this does not make us have a normal nor easy is very difficult...there are days when I get on my last nerve.....when I first got FM I just wanted to be left alone and I wanted some days to crawl in a hole somewhere and stay until I felt better.....not a good feeling....I also feel every day like I have the body has a lot of aches and pains....but with trying different things by trial and error, I have learned to "control" my pain so that I have a better life than I did....I no longer can be the person I once was.....but I have learned to accept and deal with this illness.

    I think it is wonderful that you are trying to learn more about you sound like you will be a great support for your daughter....a lot of doctors do not believe in FM as being an illness....but please trust me when I say the pain is real.......I also have a daughter with chronic pain....and she has a 2 year old.....who has a mind of his own.....OMG....children take up so much energy....I try to help my daughter as much as I can....I am so afraid that she will also end up with the wrath of the dragon to also deal with before this is over....she was in a bad accident back in 2004 and she has chronic pain due to a tarsel tunnel injury in her ankle and foot....she has been to many specialists and she is on a lot of medicine.....but nothing seems to help the past few months her foot has become to look deformed and I have been really worried about this entire situation with this... The doctors say there is nothing left for them to do....and I can not imagine that there is nothing to help her with this....

    I will tell you that always be there for your daughter and listen to her....I am sure this will be a harm illness for her to accept but that is so important....she will have to take one day at a time.....her life will more than likely be turned upside down....but always remind her that there is hope....encourage her to use a heating pad on wherever she hurts the most....or have her take a long hot bath in perhaps some lavender bath salts......learn all you can about this illness and encourage her to try different things to help you ease her pain....we are all it takes time to figure out what may or may not help her.....but I can assure you there is something out there that will.....we just have to keep on keeping on until we find relief.

    I take Prozac for depression......and other than a hormone pill that the doctor has just put me back on.....I take vitamins and supplements for the most part....I have tried many different drugs but nothing seemed to help me and caused more side effects for me to deal with....

    I will encourage you to tell her to get her Vitamin D level checked....low Vitamin D is common for most of us FMers......and this within itself can cause a lot of pain....and we do not need any other pain to be made to figure out.....the test is just a simple blood test but you must ask to have it tested....they do not do this for a normal check up.....the doctor will advise her when her results are received....this is so important.....I learned the hard way so I try to pass this bit of information on to everyone I "talk" to ....I also have found that taking a magnesium and malate combination capsule helps my pain along with Omegas.....but talk to her doctor about whatever you two decide to try.... I am sure a good doctor will be glad to get you some sort of guideline to go does take time though to figure out what might or might not help...

    Take care ...

    wisebeyond responded:
    I was also diagnosed at 17. Get your teenager on here! It's a good place for her to learn about fibro and get advice and help with it.
    wisebeyond responded:
    School wasn't too rough for me. My doctor wrote a note(due to back pain) to let me get up and walk around class whenever it was uncomfortable or to try standing for a little bit. It had all my teachers putting me in the back of class, but it worked well, they were very understanding for the most part. My gym teacher had been in a serious car accident and would let me do PT stretches or walk around class. He had a close friend who suffered from fibro also. Also, the school nurse and I petitioned to get a gym class with "lower" athletic abilities, for people who are medically diagnosed with various chronic illnesses, obese teens, asthma sufferers, and even pregnant females. I have no idea if it went through due to budget issues, since I graduated shortly after she took the petition to the board. However, I did miss half of my last semester of school due to various illnesses, both fibro and mono. My teachers were very helpful with getting me my work. And I graduated with above a 3.0(at 17), despite doing my junior and senior year at the same time and graduating early, and missing an average of 48 days. Most of that was the mono. Also some schools may be willing to give your daughter a way to have shorter days so she can get more rest. With homework, I learned focusing down for short stints and then taking a break to let my mind wander really helped. A lot of people with fibro get forgetful easily or have problems concentrating. By doing homework for one class and then rewarding myself with a phone call or a chance to watch a short show, then doing the next subject.

    My social life hasn't suffered really. I just do things a little more low key when I hang out with my friends. Instead of going out dancing at the 18+ club every weekend, I make it once every month or two now. When we hang out, we sit around talking, watching movies, playing various card games, or talking about boyfriends, or interests of ours.

    Having fun hasn't stopped it's just knowing that I need to take things a little easier more often so I can do the more physically taxing fun stuff as a special treat. Fibro is more about pacing yourself. Anything that causes a flare-up can take a day or two to recover from. Try otc pain relief before those activities, and have her apply heat to the areas afterwards.

    As long as she has a good doctor, who knows enough about fibro, and treats it in other patients, she should be able to live normally for the most part. Though most fibro patients will say there isn't a day without some pain (i agree), she should do fine. It will be better for her to learn as much as she can about it, and for you to learn as much as you can also. Sadly, very few who don't have fibro can even begin to grasp the effect it has on us physically. Emotionally, for me, it was a relief to know that there was a reason for how I felt, and many of the characteristics of fibro apply here. But it was better than thinking there was something wrong with me, that I was just lazy, or making it up.

    Hope I Helped a Little. Sorry it's a book, but I'm one of the younger ones on here, and remember the 17 and diagnosed thing very vividly.

    Kittersplat responded:
    I wasn't diagnosed til I was 25 but I have a clear history of symptoms dating back to about age 4. I always felt like a reject and wanted to be normal, but I found that if I just took everything slow I could get done what I needed to. For a social life and fun I was a nerd. I was into sci-fi and videogames and RPG(role playing games like dungeons and dragons) so what I enjoyed didn't involve much physical activity.

    I can only imagine the hardship she is going through right now. I never had a "normal" so I never had to adjust.

    Both of you learn everything you can and try every technique you can for pain relief. Remember, we're here for advice and venting whenever either of you need.
    debra03 responded:
    another tip....for some physical therepy works great! it's been good for me and is slowly helping. my back is all out of whack and my therepist is helping me get into proper alignment. also, stretching has ALWAYS helped. she can learn which ones help her the most. i always felt better when i had a regular excercise routine also. walking, crunches, and weight training helped hold the pain back. also, yoga dvds, or other at home excercises, and water-aerobics have helped me and others alot.

    once came to the right place. she will get a lot of answers, support, and understanding here. we have our own little FMily (family) here and it's a great place to escape too. good luck again, and welcome...debra
    Grapedy responded:
    She is not alone! There are thousands of teens out there who are also dealing with it. I'm 26, but symptoms go back to at least 16, maybe longer. It didn't get bad enough to need medical intervention until just over 3 years ago.

    The most important thing that she can do right now is to listen to her body! When it says stop, she needs to stop. That's the hardest part for most people. Having a name for what's wrong with you is always a huge help and there is so much out there now to help us live a better life. This is not the end of the world.

    Do encourage her to come here and post some. She's not alone and there are many of us here who are young and know what she's going through.
    fibroinsd responded:
    bumping to the top..want to make sure you see this...please respond letting us know that you saw this.

    M_Kelly1 responded:
    Hello! I am 19 and have fibromyalgia but I was diagnosed at 18. School was very hard for me my senior year. I could only make it to school 2 or 3 days a week, then half way through the day I would go to the nurses office and call my dad to go home. So I switched to an online high school call Insight. That helped a lot but I have been having horrible memory problems so it takes me a long time to do assignments. Also I signed up for a 504 plan which changes your school work to your specific needs. It does not affect your GPA or diploma.

    It is hard being so young you feel like no one understands how much pain you are in. Your friends just can't imagine it plus it is not something they think about a lot. And older people just seem to think that young people are healthy and don't have as much pain. You just need to let the people around you (teachers, friends, family, bosses) know what is going on, and educate them on the topic.

    I dont know how much help I have been but please let me know if you have any more questions because I am a teen with fibromyalgia and I know how it is.

    fibroinsd responded:
    bumping again...please let us know you saw this.

    prinredbug responded:
    I was diagnosed when I was 14. It was very hard for me while I was in school I would push myself way to hard just because I wanted to be with my friends. There would also be times I would get so upset because of the pain that I would hide in my room and not even want to talk on the phone cause I didn't even want to hear any noise.

    I even tried to work a high school job at Publix but they wanted me to bag groceris and physically I just couldn't keep up so I had to quit. I felt like I couldn't do anything a normal person my age could do.

    It was extremely hard for me because there was not as much information out there as there is now. So I felt like I knew nothing about what was wrong with me. The only thing that got me through it was that my mother had FM for years so she was and always is my shoulder to cry on.

    All I can say is support and research helped me in the long run. Plus now I found this crazy group here and it helps so much to chat with other that understand first hand what you are going through. Like When I tell people I am just so tired they tell me well take a nap, but everyone here knows it is not that easy we wish it was but oh well that why we have each other to talk to. It really does help!

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