13 yr old daughter with fibromyalgia . . .?

Hi everyone.

I am a mom with two daughters, and I have been dx with Multiple Sclerosis for many yrs now.  The reason I am on this forum today though is because of my 13 yr old daughter.

I'm wondering if anyone has any experience with fb and children, and/or even to get some experience/advice on fb symptoms.  I'm sorry, but this is going to be a bit of a long story ...

My daughter started to get numbness in her jaw area about 5 or 6 weeks ago.  I "assumed" it was just a passing phase, and maybe related to hormones or a "painless" hormonal headache . . . something along that line.  It went away after a few days.

Two weeks later, the numbness started up again, and it spread.  She had it in her jaw area again, her chest, the under side of her upper arms, and on one hand.  At the time she felt very nauseous, and was sore (mentioned her neck), so I took her into the ER to make sure it wasn't mennigitis or something.  They checked her over, and she had no fever or signs of a virus, so they sent us home.  They said if it gets worse, to come back.

As the weekend went on, her skin became hyper-sensitive to touch, she got vertigo really bad when she laid down, and she really felt awful.  I happened to have a neurologist appointment myself on Monday, so I talked to her about it.  She told me to get her in to the Children's Hospital in the city right away, to be seen by a pediatrian neurologist.

We spent most of the day in the hospital, with every doctor imaginable poking and prodding.  In the end, the pediatrician neurologist said, “well, it would be unusual for a child of this age to have MS, but I don’t really have an answer for you”.  Because most of her symptoms were “sensory”, there were no objective neurological findings, but the doctor said she believed my daughter was experiencing what she said she was.  Basically that is what happened to me in the beginning too ... even though I was paralyzed when they tested me.

The neurologist said “is she under any stress?”, to which I responded “what 13 yr old girl isn’t?”.  She is just a really happy kid though, with no big changes going on in her life (she went through puberty at 11 yrs, so that’s not an issue), so I didn’t think it was a psychological coping mechanism.  On the other hand, I am someone who believes in having a “safe place to vent”, so I have arranged counseling for her anyway ...

To shorten the story a little . . . it’s been three weeks now, and she is not getting better.  There has been increased numbness, vertigo, nausea, etc. to the point where she can hardly function any more.  They are going to do a MRI, and her GP and neurologist are doing everything to figure this out . . . but even if it is MS, that just takes TIME to show up.

So, last night my daughter said “mom, it hurts here”, as she pressed on either side of her collar bone.  That made me think of fb pressure points right away, and I kinda’ tried to check the other one’s (many people with fb are on the MS forums, so I was aware of this symptom for fb).  It seems maybe she has other pressure points too, but I don’t really know what I am looking for.

When I looked up the fb symptoms, I see nausea, dizziness, numbness (especially in the face, arms and hands), pain, skin sensitivity, etc. are ALL quite common symptoms for juvenile fb . . . so this got me wondering if maybe this is the cause, not MS.

Can anyone give me any advice on what to look for, your experience with this disease, whether you’ve experienced the same symptoms as her, etc.?

Thank you very much,

Scared mama, Cherie     

My daughter, Misty, is 33 now but she has had Fibro for many years.  She was finally dx'd in 2006 but she lived with it all of her life.  I took her to many Doctors but back then they didn't believe Fibro existed so she was finally at the age of 6 dx'd & I was told it was all in her head, she was dx'd as the youngest hyprochondriac they had ever seen.  I took her to therapy because I thought it may be possible because she had already had 7 of the 13 surgeries she would eventually have on her hands & arms due to a little known genetic disorder called Holt-Oram Syndrome.  As she got older she had alot of pain & was told by Dr after Dr that it was "growing pains".  We have talked alot about it & she say she finally did believe it was all in her head & that everyone had pain like this all of the time.  So, she said, she made a conscious decision to never speak of her pain again & she just pushed herself all the time. 

Please, listen to your daughter (it sounds as though you are & you are there for her) Let her talk about her pain & commiserate with her but also let her find ways to cope that are healthy.  Misty is doing well today & has 2 kids of her own.  She is very strong due to all that she went through but has told me that because I was there for her she coped by talking to me, living in the moment & the therapy had given her some tools to use.  Her Father is a recovering alcoholic/drug addict & she said she could have gone that route but I had also had her in Ala-Teen so she got some coping skills there.  There are many foundations & organizations that your daughter can utilize to find the skills she will need if this is Fibro or if it is another AI disease.

Have they checked for Lyme?  Please let me know how things are going with you two.  Misty & I are very close because of all we have been through together.  Your daughter will be ok, really she will.    My heart goes out to you both.  Many hugs, Denise

Hi Cherie - Welcome to the Forum.  I hope we can help you find some answers.

I've heard that Fibro can kick in "during your childbaring years" so that would mean just about anytime after puberty.  So, perhaps 13 isn't as uncommon as one might think.  We have several members on the Forum that are quite young (High School Age).  If you have a rheumetologist, why don't you could bring her there for a diagnosis, Rheumys are pretty up to speed on Fibro.  I would also recommend that you get her tested more than once for Lyme Disease.  I've had it 4 times and the symptoms are much like FMS.  I had a lot of her symptoms when I was sick w/ Lyme.  Lyme has a nasty habit of showing false negs. so sometimes it take more than one blood test.

Please check out the second thread on the Forum called Fibo 101.  There's tons of information that's really helpful on there and maybe you'll find some answers.  

You've really got your plate full, between MS and the possibility of FMS for your daughter.  Please take care of yourself during all of this.  It sounds like you're an awesome mom and you listen well to your daughter.  I'm glad your doing all the things your doing for her and you have a good handle on the situation.

I hope for only the best results for you and your daughter.  Please keep posting and let us know how both of you are doing. 

You're in my most positive thoughts,

Warm hugs,   

Baloo, has your daughter been checked for mitro valve prolapse??? The reason I ask is cause my middle son started passing out at about 14 and it was caused from mitro valve prolapse. He did out grow it but we did go through some frightening episodes for several years. He does not have fibro. Just a thought on the passing out part.

luv and hugs

Marlee

colabear2890 said...
Hi! Welcome. maybe you can see a pediatric rheumatologist. they don't have so much experience with fibro in kids, since most fibro cases are in adults, but at least you should be able to get a diagnoses. Im 19 now, but I got and was diagnosed with fibro when I was 11.

Usually fibro is a result of something, like I got it right after I had mono, so maybe your daughter had a virus or something big happen in her life right before this happened.

i do have maybe of the symptoms that you mentioned. I don't have numbness, but I do have nausea (from reflux though), the pain, I am very sensitive to touch, like a hug or a light tap will hurt alot.

but, you should definitely go to the doctor and have a pressure point test done.

if you have any other questions, feel free to ask. ill try my best to answer them.

-Aliza

Hi colabear/Aliza, and thank your for your response.

My daughter hasn’t really had any viruses, but she did have her Hep B series of shots that ended Mar/08.  She is actually a very healthy kid, as a rule.  This came out of no where, literally.

The numbness is what scared me about it potentially being MS, and of course it may be.  The numbness (and sensitive skin) is still spreading, a little more each week it seems.

I took her to the doc yesterday cause I couldn’t get her out of bed, and she had really bad vertigo all day.  He put her on a med, but I am going to try a naturopathic method first, as I'm really not too keen on using drugs much.  She used it last night, and it let her sleep, but she still had vertigo.  At least she wasn’t feeling so sick, but the burning was worse last night.

Her doc did not test her pressure points, and he was actually kinda’ cross with me for mentioning it.  He said “you know these things take time, Cherie, and let’s hope it is a LONG time”.  He said we basically just have to wait for the MRI, but of course that isn’t likely to show anything at this point anyway.  Even if it does, it is highly unlikely they will be able to dx her, especially if it is MS.

Thanks again, Cherie

Post Edited (lady_express_44) : 2/25/2009 8:45:30 PM (GMT-7)

Sherrine said...
Hi, Cherie!  I'm so sorry you are going through this.  It does have to be frightening for you and for her.  The doctors you are taking her to should be running tests to rule out MS, Lyme, Lupus, etc.  Many of fibromyalgia symptoms are similar to these illnesses, too.  But, she very well could have fibromyalgia.

We have teenagers on this forum.  We have one moderator that says she has had fibromyalgia all of her life.  She, too, was told it was "growing pains".  But, you are doing everything right and getting all the testing run.  When everything comes back negative and a tender point exam is done, usually the diagnosis of fibromyalgia is given.

Check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia including symptoms and also a link called What Else Could It Be?  The information in the Fibro 101 thread could help you.

Meanwhile, I'm glad you have found us.  We do allow kids from 13 years on up to post on this forum.  We are "kid friendly" too!  If you or your daughter have some questions we are happy to help you out with them.  The teenagers seem to help one another out too and that is really nice. 

I hope you get some answers soon.  Please let us know what you find out.  We really do care.  I hope to hear more from you soon.

Sherrine

Hi Sherrine, and thank you for pointing me to the link.

I think you are right about fb being a dx of exclusion.  That is what our doctor basically said . . . we’ll do the most obvious testing FIRST, then we will move on to the less likely causes (like fb, in this case, apparently).   I guess the first step is the drug/sexual activity/blood testing, then the MRI, and we’ll go from there.  Two down, one to go ...

They are confident is not any kind of virus at this point (so a lumbar puncture is not recommended), and her symptoms are apparently not fitting for a tumor either.  Those are really the only two things that would be “deadly” at this point ...

It can take several weeks to get a “non-emergency” MRI for free, here in Canada.  I could pay $500 to get one tomorrow, but unless things change for the worse, I think I will wait.  Most of the likely conditions/diseases aren’t going critical to get a dx for, at least not within a month or so.  Even if we found out what it was, I'm pretty sure I’d let this “flare” run its course before treating it with anything more than symptom mgmt meds.

Thank you for the warm welcome to your membership.

Cherie