Anyone out there with a teenage child with Fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by JudyCNC, Feb 7, 2003.

  1. JudyCNC

    JudyCNC New Member

    Help.......!!!!!

    My 16 year-old daughter [adopted at birth] was diagnosed with Fibromyalgia almost 3 years ago. What a nightmare!

    I would love to hear from other parents or anyone that has experienced this awful thing as a young person...or hey, anyone that would care to talk with me about this would be so welcomed!

    I'm just plain overwhelmed. My daughter missed an entire week of school this week due to a flare-up. The more I read about this disease, the more frightened I become for her. Nothing seems to really work and she gets VERY depressed. She is generally an extrememly caring, involved, positive, loving young woman that is a very good student and loves being involved in drama at her high school. We have a wonderful primary care physician that is treating her with Prozac and Skelaxin but she still suffers constantly.

    Just lost in the quagmire...
    Judy
  2. PatPalmer

    PatPalmer New Member

    I have replied to other posts, so I apologise if anyone out there is fed up hearing from me with the same old record....

    My daughter has had ME for four years in all, I sympathise how desperate and hopeless you feel in not being able to make your daughter better. The drugs she is on are not addressing the cause of her illness.

    I`m going to tell you how I have got my daughter from 20% to 80%.

    Dawn left School at 15 and had ALL the symptoms CFS has going, started with getting colds, ear infections and swollen glands, lots of antibiotics.....
    She was diagnosed with a Mycoplasma pneumoniae infection on having severely swollen glands "again" last year in January.

    FM is a bacteria gotten a hold, so could be similar.

    I would only give her good food, no processed or junk. Cut way down on the carbohydrates. I shovelled endless supplements down her poor little throat. Multi Vit & Minerals, Echinacea, Evening Primrose Oil ( since found Starflower better) Magnesium with calcium & Zinc, & Ginseng.
    She slowly got better and went to work part time, and was out hitting the town at weekends..... You`ve guessed it. Wham, the swollen throat last yr.
    This set her back 18 mths, and again became my patient.
    Very slowly she has been getting better and three months ago was at 50-60% , which is when I gave her Olive Leaf Extract.
    She is now at 80% which is a huge improvement in such a short time,I can only put this down to the OLE.
    She is better when she drinks a lot of water too.

    Please read all you can on both Olive Leaf Extract and Mycoplasmas, it`s knowledge that`ll fall into place. and I dearly hope will help you to get your daughter on the road to recovery.

    I shall be thinking and praying for you, and am here if I can help you in any way.

    Love Pat. (England)


    [This Message was Edited on 02/07/2003]
  3. phenom

    phenom New Member

    i've had this DD since i was about 8 or 9.... i don't know wot you'd like to know, and i don't know if i'd be much help because mine has only gotten really bad in the last year or so...had to quit uni and work etc... but i'm often on the chat..(same user name) if you'd like to ask specific questions.... hope to hear from you...

    phenom
  4. Fairyeyes

    Fairyeyes New Member

    Only it hasn't been diagnosed till now. I am 30. I have become accustomed to always hurting or feeling dizzy/nauseaus. From about age 11 on, I was labelled as sickly, catching another "flu-bug". Only thing was, this was back in the day when people only really got the flu in the winter. It was inexplainable, and had I been treated correctly from an age as your daughter, I could have lived much more comfortably. SO although I am still experiencing varying levels of pain, some days really baaaad, some days, very great- but sure wish I knew then what I know now.

    I think with a proper, pro-active, healthful approaches, your daughter is going to learn how to avoid feeling as bad as she would go untreated, and is at an age where she will have years under her belt, and quite possibly very "healthy"(I feel you can be healthy, with this damn syndrome, and a lot of it has to do with learning coping skills. Pain is pain, and I feel it to, but if I can use the power of my own mind, I can do more than most can tolerate).

    At her age, she can begin to use coping skills that will be ingrained in her by the time she reaches my age. See, just learning about it now, it is not quite ingrained in me yet, I believe I have much to learn.

    hope this helps.
  5. karbear

    karbear New Member

    Hello Judy, I am sorry you have a teenager with FM. I also have a 13 year old who was just recently diagnosed with FM,Chronic Myofascial Pain and Cosdodromlacia,,not sure of that spelling, having muscle chest pains..very severe,she also was diagnosed with allergies, Wheat being the toughest, its awful, she has been sickly for years, we just hadn't had a answer! I was recently diagnosed also with FM and Chronic Myofascial Pain. Its awful ,there is no one that understands what it is like,the pain is unbeilable and the tiredness, I can feel for my 13 year old, I couldn't imagine going through this at a young age. She also misses tons of school, she went this week for one hour,our school has just signed her with Homebound studies,which a teacher will come one hour a day to help her out, getting her up in the mornings after being in pain all nite and not sleeping is very very tough, I have to drag myself up and get the other children off to school and as soon as I am back from driving them in, I jump back to bed till 11,,,its awful,then I drag myself up to get some housework done,my daughter sleeps along with me,sometimes not getting up until 1 pm...She also is dealing with major acid reflux and has a appt. to see a specilist..this girl has one thing after another,its hard for her siblings to understand,the older ones think she is faking..its hard with this FM cause you don't look sick...I just wish she could enjoy being 13 and not be so sick..Best of luck to you.and we will keep you in our prayers..god bless,karin
  6. jodboga

    jodboga New Member

    my son , a senior in high school , has missed so much school and today was fired from his job because he is sick and hurting so bad ....where do we go from here ??? what can I do to help him ? I too have this disease along with RA , Copd AND OTHERS . i HAVE TRIED TO TELL HIM THINGS BUT AS A TEEN HE THINKS HE KNOWS BEST .
  7. jodboga

    jodboga New Member

    what is the dose of skelaxin your daughter takes ?
  8. JaneSmith

    JaneSmith New Member

    I started when I was 15. When I was 21, I had horrible spasms in my upper back. It took a year to go away and then went somewhere else on my body. My children also started in their teen years. Oldest now is 29 and youngest is 25. They go to work every day and live with it. Don't know the answer. My doctor said, maybe in 20 years they will find a cure. That will make me 75. Should I laugh or cry!
  9. georgi

    georgi New Member

    I specifically got onto this site today because I was hoping to find some kind of info or hope for my 16 year old son, too.

    I am sure I have had FM/CFS pretty much my whole life- I remember always feeling bad and being SOOO tired- and my poor son has always kind of been that way too. But seems like it may be getting worse.

    He misses a LOT of school and other activities, and he is in bed all the time. It is 5 pm and other than coming down for lunch he has been in bed all day. He complains of not feeling well often- achy, nausea, just feeling yucky.

    The dr says his schedule is just too full and he feels bad cos he doesn't sleep real well, but I see other teens handle a lot more w/o these problems.

    He is also depressed and has been taking Prozac, which sometimes seems to help and other times not. (He may not be as regular with it as he should be.) He is on Allegra for pretty bad allergies, which helps some.

    I am concerned for him for his future. He is so much like me; if he can't do it "All", he curls up and does nothing. He'll be a senior next year. His grades suffer, although he is very smart.

    We live in a small city where there are no dr's who really address CFS/FM in much of a helpful way. We are on our own, and he being a teenage boy he's not very keen on focusing on personal health care. He just wants to be a kid! And I think he sees me as too doting when I try to help.

    I'm sad and scared and don't know what to do. :(

    I feel for all of you out there going through this.

    Georgi
  10. Slayadragon

    Slayadragon New Member

    Hi Judy,

    You might try doing a user search for:

    connieaag

    Best, Lisa
  11. cindye

    cindye New Member

    My daughter was 15 when diagnosed. We did the guai protocol with a very good, understanding chiropractor. It involved pt, massage therapy and spinal adjustments along with ultra sound. This started her on the road to improvement. She is now going to Fibromyalgia Center and is on a lot of supplements which seem to be helping. Our next adventure is to try electrostimulation therapy - not sure if it will work but have to give it a try. Supposedly you will know after two treatments if it is going to help you. The treatment plan is 12 treatments and is supposed to be covered by insurance. Will post after we have tried it in May - have to finish the semester of college before starting something new. It has been a long road but she is a very determined young lady. We have had to make a lot of adjustments to keep her in school - move her out of the dorm etc. but it will be worth it when she gets her OT degree. Good luck to all of you with children with FM - it is a long hard road but prayer and her determination has gotten us this far.
  12. jenn1980

    jenn1980 New Member

    I've had FM and CFIDS since age 21 (now 27), and it makes life extremely difficult. Best wishes to you and your daughter. Everyone has to find what works for her/him. It's rough, but don't give up, even though many days you'll feel like doing just that.

    Best,
    Jenn