Possible Juvenile Fibromyalgia? - Fibromyalgia Message Board

snowy owl · 02-12-2007, 07:22 AM

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.

1sunny1 · 02-12-2007, 08:31 AM

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.

elmhar · 02-12-2007, 12:39 PM

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.

la_brat · 02-15-2007, 07:50 PM

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.

snowy owl · 02-21-2007, 06:52 PM

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.