Teens with Fibro

Discussion in 'Fibromyalgia Main Forum' started by moopsie, Jun 27, 2006.

  1. moopsie

    moopsie New Member

    Hi everyone. This is my first post, though I have been reading everyones recommendations for a while now. I have a 13 year old daughter who has been diagnosed with probable fibro. As you can all imagine, being so young with fibro is difficult. She was first thought to have jra and was treated for that for 6 months with no improvement. She then spent 6 weeks on Lyrica. While that kept her asleep at night it has done nothing for her pain and she is still very fatigued. She is now on 10 mg amitriptylene at bed time and 1300mg Tylenol twice daily. It is terrible to see your once energetic, happy faced little girl look horrible and know that she feels worse than she looks. Can anyone offer any advice on ways to help her. She is scheduled for the pediatric pain clinic in August but that's so far away and she needs to get some better before school starts again. I do take her to the Y 3-5 times a week for walks, swims and water arobics, but the pain and fatigue has continued to get worse.

    Any advice is greatly appreciated.

    Regina
  2. dani78xo

    dani78xo New Member

    Hey Regina,
    i'm sixteen and i've had FM since about october of 2005.
    unfortunately i haven't had any luck with controlling it,
    i missed almost the entire year, and i still might be held back.

    my advice is just this;
    don't push her too much.
    motivation comes and goes for me,
    and i do go on hour and a half
    to two hour walks as much as i can,
    but there are still some days that i can't.

    still try to get her out as much as you can,
    it'll be hard, especially if she goes over her limit.
    but gaining strength is the key through alot of this.

    when i first started walking,
    i could only go for about half an hour
    without feeling like i would collapse.

    my endurance has really increased,
    so it's really good that you're taking her to the Y.
    but if she wakes up some days and
    already feels absolutely HORRID,
    don't push it. cause it can make her alot worse =[.

    it's just a trial and error illness, really.
    some medications work and some don't.

    eventually you'll find the right ones for her,
    and the right treatment to help her pain.

    i hope she finds the right treatment plan soon,
    this illness is really horrible to have when you're a teenager.

    -danielle
  3. victoria

    victoria New Member

    my son started developing all the symptoms when he was 15. (some before). The internist could not find anything wrong... but agreed something was wrong. I was horrified to see him experiencing my own symptoms but he also had a lot of pain that I do not have.

    His pain was becoming a real issue, as was his brain fog and insomnia, by his 16th birthday. (he is now almost 19) We really have gone thru a lot with him in dealing with this.

    He lost a lot of school over the first 2 years, finally dropped out and got his GED as it was too frustrating to keep trying to get thru classes (he had to drop out of 2 semesters entirely and only took a partial load the other 2!)

    He would've ended up the dx of fibro if I hadn't been reading about Lyme and other stealth pathogens, and took him to the closest 'Lyme-literate MD'. The symptoms caused by these stealth bacteria are just like fibromyalgia, as they can go anywhere within the body. and can hide inside cells.

    Not only did he respond immediately to the first round of antibiotics, his tests came back positive. And thankfully, because he would've been in denial otherwise.

    He is still in treatment and has a long way to go, but it was tremendously helpful to have at least a partial answer for what was going on with him! (The clinic suspects there are probably co-infections that are even harder to test for.)

    I hope you read up on it and consider the possibilities... there's a new lyme board at this site (click on 'message boards' link/button up above) . Also, check out ilads.org and the link there to the flash net discussion.

    all the best,
    Victoria


    [This Message was Edited on 06/27/2006]
  4. victoria

    victoria New Member

  5. moopsie

    moopsie New Member

    Thanks to everyone for the advice. I'm really struggling with what to do to help her. I have RA but it's been so much easier because it can at least be treated. So far nothing has helped her. She has such high ambitions and such great goals, and to now realize that she might not make some of those is heartbreaking. We'll keep pushing forward.

    She has been tested for everything under the sun and it's all negative. She really doesn't have the expected tender points but the doc said since he didn't know what else it could be that he's diagnosing Fibro. Maybe in August at the Pediatric Pain Clinic they will give a firm diagnosis.

    I too wonder about lyme or candidas. This all started after several bouts of strep. We finally got the strep to test negative but she still had lots of sore throats, and her knees and jaw were hurting her a lot so the week before thanksgiving last year her tonsils were removed. She developed a severe yeast infection in her mouth and throat, but once that cleared up she was feeling really good for a couple of weeks. For the first time in months her knees and jaw didn't hurt. Then in December her right hand started hurting, swelling and going numb. She saw the ortho doc in Jan and he suspected carpal tunnel but was worried because 12 yo don't usually get that. Then about 2 weeks later her left hand started hurting, swelling and going numb. After finding out that I had RA he then sent her to rheumatologist who started running tests and treating for RA. After the bone scan came back negative for inflammation he said probable fibro, even though it presented in a way not consistent with fibro.

    Personally I don't care what they call it, as long as she gets better instead of worse as she is constantly going down hill at this point.

    Sorry for the ramble, but again thanks for the info.

    Regina
    [This Message was Edited on 06/28/2006]
  6. victoria

    victoria New Member

    go to a lyme literate MD (LLMD)! The tests for lyme and other stealth pathogens are not all that good - a LLMD will be able to dx on the clinical picture and give her a trial on abx.

    My heart goes out to you, I know how it feels to watch a child develop all these mysterious symptoms far worse than my own!

    My son also started with the carpal tunnel symptoms, first right hand and then left hand too; developed into numbness and paraesthesias going all the way up into his shoulder... which means a higher level of involvement. He is a guitar player but also shouldn't have been having those problems so early; he was 12-13 when he started to get those symptoms.

    He tried to work last winter but could not take standing, his legs were going numb and the repetitive work at a sandwich shop caused even more problems with his right arm and shoulder. Not to mention the ever-increasing fatigue.

    Symptoms and pain can fluctuate and move around in the body, as I have seen with my own son. I can only strongly urge you to get a referral to a good LLMD and spend the money if necessary.

    Ultimately it is up to you... but it saved us a good deal of $$ and time and grief by doing so, as our internist had no idea at all what was wrong with him or what to do with him or where to send him.

    The average doctor (no matter the specialty) really doesn't know what to do with people with lyme etc., as it is vastly under-reported in most states and they don't expect to see it.

    It has been surmised that people on average spend $65K and many years before getting the dx of lyme, plus a steadily decreasing state of health and a longer period of treatment once properly diagnosed to get better; and there is a small percentage of chronic lymies that do not seem to get better no matter what they try

    that is how insidious Lyme is alone - not to mention the other stealth pathogens that can hide out in the body.

    all the best,
    Victoria


    [This Message was Edited on 06/28/2006]