13yr old son and FM

Discussion in 'Fibromyalgia Main Forum' started by CAgirl, Apr 7, 2003.

  1. CAgirl

    CAgirl New Member

    I have FM and I've noticed symptoms in my son. I try to ignore them because I don't want him to have this DD. I've taken him to the doctor many times and they tell me he is normal. I asked the doctor if he thought my son could have FM and he said "why would you want to give him that label when there is nothing that can be done for it?" I'm so tired of dealing with doctors for my own FM that it is hard for me to gather the strenght to fight for my son. He has headaches, he doesn't feel well, he wakes up with headaches and stomach aches, his shoulder hurts, his neck hurts. If I try to rub his back he jerks away from me. His muscles are so tight! His legs hurt. He has IBS. His shoulders are rounded forward because his muscles are so tight. He also tells me he relates to the Zoloft commmercial. He says he feels the way the Zoloft commercial describes. Depression runs in my family.
    I don't know what to do. Any suggestions? Anyone else with Fm that sees it in their children. What have you done for them?
    Thank You
  2. macki

    macki New Member

    My heart goes out to you. I think watching our child/ren suffer is worse than dealing with our own pain. I don't have any of these DD (CFS, FMS, etc.), but have a 17 year old son with CFS. We have been dealing with this for about 5 years and didn't know these DD existed for the first 4 years. Finally got a dx last year. My son's symtoms are similiar to yours except he doesn't seem to have the depression, his muscles aren't tight, but he has a lot of muscle/joint pain, and has reflux instead of IBS. I won't even mention how we feel about doctors - you've been there.

    First I would strongly suggest that you deal with the depression issue, since suicide is a very real danger with this DD. I don't mean to scare you, but this is the one symptom that doctors seem to be able to comprehend and treat. If he is depressed and meds help with this, I think you and he will be better able to cope with all the other symptons.

    I hope you have time to check out the postings on this web site because they are full of info that might give you some ideas. If nothing else, the support you get from everyone helps.

    For us personally, my son has found a few things that make him feel better. First, he has learned not to push himself too hard. He knows that if he is over active he will feels worse for the next few day. He has found that a hot bath or showers will help with the aches and crazy as it sounds, he says olives lessen the stomach pain. He also goes to a chiroprator, more for the massage than the adjustment. Of course everyone is different and what helps varies with every person.

    I hope this has been at least a little helpful.

  3. Mikie

    Mikie Moderator

    To find a doctor who treats pediatric FMS/CFS. More and more childen are found to have our illnesses and they need help. I wouldn't tolerate a doc who believes that nothing can be done for our illnesses. There's plenty that can be done and should be done. Just because they are children doesn't mean their complaints are not valid. To the contrary, their complaints need to be addressed moreso than an adult's. It's asking too much of a child to suffer these illnesses without treatment.

    It's possible a specialist in our illnesses who treats adults might be convinced to see a child. Children often suffer from depression and it is horrible for them. You might have to fight for your child, but the alternative is for him to continue to suffer needlessly because of the ignorance of docs.

    Love, Mikie
  4. Hippo

    Hippo New Member

    I think my 13-year-old daughter has this DD, and we are going to a Pediatric Rheumatologist. I don't know if it will help, but it's the best idea anyone has come up with so far.

  5. CAgirl

    CAgirl New Member

    I tried to get my son's doctor to refer him to a pediatic Rheumatologist, but he wouldn't do it. You have to understand I live on an Air Force Base and all they have here is a small family practice clinic. They bounced me back and forth between three different doctors. I just got tired of dealing with them. They wore me out.
    Thanks again
  6. scottabir

    scottabir New Member

    I know there is supposed to be a really good back out there about children and CFIDS/FM. I can't remeber the name of it or the author but it would probably come up on amazon if you did a search for it. Maybe the book willl help give you some inside info for dealing with the childrens docs.

  7. momofafibro

    momofafibro New Member

    has been dianosed with fibromyalgia. She started out with the severe migraines. We took her to her regular pediatrician, he tried everything that he knew to try and suggested we go on to a pediatric nuerologist. We tried that also, actually we saw two of those. By time we saw the second one my daughter was having severe all over body pain. We begged the last ped. neuro. to refer us to a ped rheumy. He would not do it. So I went myself to the ped rheumy to ask if we HAD to have a referral. We did, so I came back home and went back to the pediatrician. He didn't think twice, he called straight away. The ped. rheumy. saw my daughter four times befor she finally diagnosed her with fibro. They did all of the blood test to rule out everything else first, two and three times. I guess I say all of that to say sometime you have to take things into your own hands. That ped. rheumy we went to diagnosed my daughter but did not want to treat her with any kind of medicine. So now once again we are back with our pediatrician who is treating her.
    Just keep searching. If you don't no one else will care about your child(ren)

  8. goingslowlycrazy

    goingslowlycrazy New Member

    CAgirl and everyone else who has responded:
    I am so glad to have read this thread today. I posted a little while back that I was scared that my 12 year old son has CFS like me (check my past posts if you would like to read it).
    He started with severe migraines and now has aches, temperature regulation problems and intense 'energy drops'. Last night was an example. He complained of feeling 'fluey' on the way home from school and when we got home, he went to sleep on the couch (from 4pm until 9pm). When he woke up, he was paper white and went straight to bed - didn't even want to eat.
    This happens at least once, usually twice a week.
    He is not a whiny kid at all and has dealt with his migraines (since he was six) so well - my heart bleeds for him.
    I am in the process of getting my GP (family doc) to refer me to an ME/CFS specialist - so I will definitely ask him to refer Robbie too......
    I know just how you guys feel about being seen as a 'neurotic' mum - isn't that the pits? The last thing we want is to be seen as anything approaching Munchausens....Lord knows - all we want is a 'normal' life.
    Just WHAT would be the advantage to living like this???????
    Mary x
  9. Mikie

    Mikie Moderator

    For the attention. If someone suspects this, it is time to sit down and talk about it. Just ignoring it will not make it go away. Talking about it will not focus too much attention on it. My daughter had an inflamed achilles tendon in the 5th or 6th grade, diagnosed by her doc. She hated it as she wanted to be like the other children. Her gym teacher tried to make her feel like a slacker. This was just an early indication of the FMS which would eventually strike her and her sister.

    My grandmother had some strange behavior and we suspect she may have had FMS, but she died when my Mother was young. My Mother had FMS, I have FMS/CFS, and both my daughters have FMS, one of the with vulvadynia and interstitial cystitis. This stuff runs rampant in some families. Children's complaints should be taken very seriously.

    Laura, is there a chance of taking your child to a civilian doc? I would raise a stink about this whole thing. Our military deserve better than this.

    Love, Mikie
  10. kgg

    kgg New Member

    was allergic to corn. I mentioned this in another post, that food allergies can cause these symptoms. He would get headaches, stomach aches, muscle pain, short term memory problems, low energy and tight muscles. Along with the food allergies, we are also investigating for yeast in his intestines. Keep investigating. And go to a different doc if they are so accusatory. We are going to a physician who practices functional medicine. My son's teenage years are being robbed from him. We will keep looking til he has atleast a portion of his life back.

    As far as the depression goes, if you decide to treat it. Start with the lowest dose available. We all react differently to them. Be careful.

    Massage treatments really helped my son feel better, although he detoxed the next day. He was reluctant to go, but always felt better afterwards.

    Will be praying for you and your son.
  11. Fi

    Fi New Member


    I'm 14 and a half and I have had CFS and FMS for a little over a year. I'd love to chat to the kids around my age who are also suffering from this. My email address is Tiffany@breger.com

  12. TNhayley

    TNhayley New Member

    "What Your Doctor May Not Tell You About Pediatric Fibromyalgia" by Dr. St. Amand was an eyeopener to me. It really connects the dots on some of those vague symptoms that we see in our children. St. Amand also says it will be the mothers (parents) who diagnose their children ... we are the ones who see them everyday and who *know* them. Another good piece of advise is to log your children's complaints. Keeping a running record will help, both with your suspicions and with talking to doctors in the future.

    I personally wrestle with the idea of trying to get an official DX at this time. So many out there may get a DX but are then not treated, or treated improperly, or bounced from doctor to doctor. Parents are told they are projecting their own illness on their children, or are overly worried ... or worse. What is the real benefit ... or cost? I'd be very interested to hear success stories if anybody else would like to share. :)

    Knowing that all I really have right now are educated suspicions, I also know my drive to find information about this DD is my sons ... the better it will be for them when I HAVE to fight for them. Maybe sooner than later.

  13. Mikie

    Mikie Moderator

    I didn't know Dr. St. A had a book on pediatric FMS but this is great info for anyone who suspects it in his or her child.

    Laura, I can certainly understand your dilemma. I guess your motherly instincts are the best tool you have right now. I think keeping track of the complaints and other factors surrounding them is an excellent idea. A pattern may emerge.

    Love, Mikie