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    Old 02-12-2007, 06:22 AM   #1
    snowy owl
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    Possible Juvenile Fibromyalgia?

    My son has been feeling just plain lousy for months now. Repeated trips to the doctor has shown nothing out of the ordinary. The doctor thinks its all in his head.

    He complains of back and leg pain, headaches, and that his skin stings (like it's been scraped off) or just plain hurting all over. He's always tired and hardly has any energy. Even his teachers notice a difference in him. They have all commented that he's not the same kid that left last summer.

    Getting tired of his doctors just fluffing me off, I started doing some research on my own. I have heard of fibromyalgia but didn't realise that it could affect children and teens.


    Reading about the pressure points, I tried a couple on my son and he nearly went through the roof.

    I guess my question is what is the best way to bring up the possibility that he could be suffering from this without the doctor telling me that I read too much.

     
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    Old 02-12-2007, 07:31 AM   #2
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    Re: Possible Juvenile Fibromyalgia?

    Find a Doctor that believes in fibromyalgia. Personally I think that one can't read enough, and Doctors don't read enough. They treat this disease with anti-depressants, which do work. You can also go to a vitamin shoppe and ask them what they recommend as a natural supplement for this, sometimes it works and sometimes you need the stronger stuff. Good luck with this and tell your son to hang in there, it took numerous doctor visits and years before they diagnosed me.

     
    Old 02-12-2007, 11:39 AM   #3
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    Re: Possible Juvenile Fibromyalgia?

    Hi Snowy Owl,

    Juvenile fibro can occur. In some cases it seems to be triggered by a virus or other infection, and the symptoms may overlap w/chronic fatigue.

    You don't mention your son's age. There is one syndrome called "tethered cord" where the spinal cord is abnormally attached to the base of the spine, sacral area. Tethered-cord syndrome often starts making itself known around age 9, or about the time that the first pre-adolescent growth-spurt hits. As trunk length increases, tension increases on the spinal cord & the nerves that are attached to the spinal chord, sprouting out from the vertebrae. This syndrome can lead to diffuse pain, headache, and general misery. Pediatric neurosurgeons are most skilled at diagnosing tethered cord (MRI I believe), and the surgery has a very high rate of success. Recovery is generally pretty quick.

    The reason why I mention this is, as hard as it is to get a doc to recognize & treat adult fibro, kids w/the dx have an even harder row to hoe w/a fibro dx. I did know of one child who was reluctantly & unsuccessfully treated for juvenile fibro from age 10 to 15. She also had pressure points. The recommended Rx for juvenile fibro was anti-depressant meds of various sorts, and when those didn't work, anti-psychotics were given. This for a perfectly well-behaved in-touch w/reality young woman whose only problem was that she was in so much pain she had to be home-schooled. Once her tethered cord syndrome was fixed, her main problems were catching up with her age group on PE skills. When one of her younger siblings started w/"fibro-like" symptoms at age 9, the parents were quick to have him assessed by the doc who helped their daughter, and so the younger child was spared many yrs. of pain.

    Well, I'm not saying that TC is what your son has, but from my experience, it might something to look into. Most pediatricians, and even many ped neurologists, are not that aware of TC, so you might need to ck around to find a doc who would actually recognize the possibility.

    Best wishes.

     
    Old 02-15-2007, 06:50 PM   #4
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    Re: Possible Juvenile Fibromyalgia?

    Finding a doctor that will give you a diagnosis is important if this is going to be a long term illness. A medical diagnosis is required for help if there are attendance problems at school. With a diagnosis public schools are required to help with education and socialization.

    Our daughters probably were showing signs of FMS sooner, but by the third grade we knew something was wrong. We didn't have a diagnosis until many years later and lots of unpleasant bouts with the schools, family, and friends. True, there are still the doubters and those that know better than you but they are fewer when you can put a label on it.

    If you think it may be FMS, call doctors' offices and ask what's the doctor's position on FMS. Also remember FMS is not anything other than a collection of symptoms that the underlying reason for them have not yet been found. Do not forget to keep looking for that underlying cause. That cause when found and treated could get rid of the symptoms. What is left would be a healthy person.

    Good Luck with your search.

     
    Old 02-21-2007, 05:52 PM   #5
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    Re: Possible Juvenile Fibromyalgia?

    Thanks for your replies everyone.
    I had my son to our family doctor, when I made the appointment, I mentioned fibromyalgia to the receptionist, she told me kids don't get that and the best thing I could do is stay off the internet.

    I mentioned it to the doctor, and she said she's never heard of kids getting it, and even if they did, what good would a diagnosis do, there's no cure. I said, well at least I'd have an answer to why he's feeling the way he is. She told me then I (or he) would just use it as an excuse.



    By the way he's in his early teens.

     
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    Old 02-21-2007, 06:59 PM   #6
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    Re: Possible Juvenile Fibromyalgia?

    I know one thing for sure - I would never set foot in that doctors office again. No one needs that kind of attitude, especially a teen who is not feeling well (nor the mother). Before you take him to someone else - call and find out their reaction to FM.

    Good luck.

     
    Old 02-22-2007, 11:10 AM   #7
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    Re: Possible Juvenile Fibromyalgia?

    Hi Snowy Owl,

    How sad! This doc is just not up on the research! One of the best studies on juvenile fibro was recently published, and came out of Canada!

    You will likely need to network around the community to find a doc who is up on things ... and I think you do realize that receptionists are still working on their medical licenses ...

    There are a number of Fibromyalgia Associations -- FMAware & FACES are 2 I know of. Not sure what is active where you are, but most associations have a branch for juvenile sufferers. Public libraries have encyclopedias of associations, and any good reference librarian should be able to put you in touch with a national, or better yet, local association that could help you find a sympathetic doc.

    Best wishes.

     
    Old 04-24-2007, 03:31 PM   #8
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    Re: Possible Juvenile Fibromyalgia?

    no thye dont my family was told it was all in my head and it wasent
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    Old 04-25-2007, 09:02 AM   #9
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    Re: Possible Juvenile Fibromyalgia?

    I hope you can get your son some help, i can remember my fibro symptoms as far back as the age of 13, but i didnt get a diagnosis until i was 22. My blessings are with you and your son .

     
    Old 04-25-2007, 09:41 PM   #10
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    Re: Possible Juvenile Fibromyalgia?

    Your son's symptoms mirror my daughter's symptoms exactly. The burning skin is not one of the more common symptom of Fibromyalgia but it is a symptom.

    I am livid at the receptionist's comments and so should you be. As for the doctor, he is simply ignorant, as so many doctors are, about Fibromyalgia.

    The most important thing for your son is for you to believe without any doubt that what he is telling you regarding how he is feeling is true and tell him so. The next most important thing is to become his soldier. As a minor, he is at a great disadvantage unless you are his advocate and no matter what, don't give up. There are many things that can be done to help your son get better and feel better. But you need a Fibromyalgia specialist. My suggestion if you can't find one would be to call Dr. Michael Powell in Sacramento, CA USA for a phone consult. He is devoted, compassionate, and is totally committed to treating Fibromyalgia using very effective treatments and has patients coming to him from all over the US. After my daughter's neurologist (for childhood epilepsy) shrugged off her syptoms and said she did not have Fibro, and she suffered several more months, I took her to Dr. Powell and got an accurate diagnosis and treatment. You are right, the diagnosis is neccesary to get the special assistance for school.

    all the best to you both.
    april678

    Last edited by moderator2; 04-25-2007 at 09:59 PM. Reason: Doctor's names are allowed - telephone numbers and websites are not - emails are not allowed - please follow the rules

     
    Old 04-28-2007, 10:48 AM   #11
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    Re: Possible Juvenile Fibromyalgia?

    Dear Snowy Owl,
    Any luck yet on finding a doctor in your area? If not, what do you think about contacting Dr. Michael Powell in Sacramento, California, for a phone consult?
    all the best,
    april678

     
    Old 04-28-2007, 05:47 PM   #12
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    Re: Possible Juvenile Fibromyalgia?

    Quote:
    Originally Posted by snowy owl View Post
    I mentioned fibromyalgia to the receptionist, she told me kids don't get that and the best thing I could do is stay off the internet.

    I mentioned it to the doctor, and she said she's never heard of kids getting it, and even if they did, what good would a diagnosis do, there's no cure. I said, well at least I'd have an answer to why he's feeling the way he is. She told me then I (or he) would just use it as an excuse.



    By the way he's in his early teens.
    I think that's absolutely ridiculous. I'm 17, and I got sick when I was 15, diagnosed at 16 with fibromyalgia.

    Young people absolutely can and do get it--THERE'S A REASON FOR THE TERM "JPFMS, or Juvenile Primary Fibromyalgia Syndrome." My primary care doctor told me when I was first diagnosed that she had other young patients that had fibromyalgia--one of them being only 18.

    And as with ANYTHING, some teenagers are more responsible than others. Some ADULTS are more responsible than others. I've seen 50 year old women use their fm as excuses, when they're blatantly proved wrong (in other words, they used fm as an excuse when they don't have particularly severe fm, and their life isn't truly affected by it.)

    There's no difference between what an irresponsible adult would do and what an irresponsible teenager would do. Absolutely none.

    Doctor's don't like to RECOGNIZE fibromyalgia in children, but it does happen more than you think.


    And sure, there's no cure, but then what good does a diagnosis do for an adult with fm? And furthermore, why would you want a diagnosis of alzheimer's, when there's no cure? Why would you want to know if you're dying, if you're gonna die anyways...doctors should just not tell patients that they're dying, and THEN it'll make more sense.

    Honestly, some doctors these days...

    I had one rheumatologist tell me that fibromyalgia didn't exist and that I should see a shrink. (In those exact words, too.) Fm is the third top reason for GOING to a rheumatologist, so I highly doubt that seeing teenagers there for fm is really so abnormal.

     
    Old 04-29-2007, 09:03 PM   #13
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    Re: Possible Juvenile Fibromyalgia?

    Hi,
    My 14 year old son was "officially diagnosed" with FM 3 weeks ago. We thankfully had a PA at my doctors office who after trying everything he referred him to a Pediatric Rheumatologist. After waiting 2 months for an appt, and a nice 45 minute head to toe examination and questions he determined it was FM.

    If your doctor (and staff) does not believe in FM in children, find one who does. It is hard for me to wrap my head around his symptoms, but we are trying. He has had remarkable success in "detoxing" with a naturopathic MD a month ago. It was to help him get antibiotics and steriods out of his system since he has been sick so often from birth on. He has not been "sick" with cold, sinus, etc. in 6 weeks being on detox and other homeopathic stuff. He has had a few bad days with achy body and tiredness - but no doctor visits - a rarity for us.

    Good luck!
    Holly

     
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