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Old 07-19-2005, 03:09 PM   #1
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megsmom HB User
daughter was diagnosed with Fibromyalgia

My teenaged daughter was diagnosed with Fibromyalgia today. She has had terrible pain in her wrist, hands, and knees mostly and at times in her shoulders, elbows, ankles,etc. this all started when she was about 10 years old. I am trying to take this all in right now. I just want the pain to stop for her but the Dr. said it could take a couple of years for her to feel much better. He also said that he doubts she will outgrow it. She has seen many doctors over the last few years (year and one-half mostly). Is there anything we can do to help her? Any vitamins, therapy's? She did PT, OT, and pain management for over 5 months and they didn't help. Also, have you ever heard of a low C-4 complement protein level with this. She also gets kidney stones and has high urine calcium levels.

Sorry for all the info and thanks for any help you can give us. I will talk to her about writing to the other girls with it too.

Last edited by Administrator; 07-19-2005 at 10:10 PM. Reason: split post to its own thread

 
Old 07-19-2005, 05:32 PM   #2
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tkgoodspirit HB Usertkgoodspirit HB User
Re: daughter was diagnosed with Fibromyalgia

Hello! And welcome.

What a hard thing to witness your child go through.

May I suggest that you check out one of the "sticky posts" at the beginning of the Fibro Forum. It tells about some good amino acids, and vitamins, and anti-oxidents that are special for FM. Just heed the warning and check with the doc before she uses any, especially since she's so young.

Exercise is the most beneficial as long as she (meg right?) doesn't have any other problems that prevents her from doing so. i.e. herniated lower lumbar, spinal problems, etc. But exercise IS the best for FM. Also, pool/aqua therapy is good. A nice warm pool.

Also, IMO, you should check out as many of the older threads as you can. Learn as much as you can both from this forum and "other" resources at your fingertips. Especially check out the threads that mention medications, treatments, procedures, tests, or information regarding an recent studies about FM.

My goodness, it seems like there is an epidempic of young people being dx'd with FM here! Makes me sad!

Please, megsmom, don't give up, don't despair. Take your time to grieve for what your daughter is going through and what is to come, HOWEVER, being her age, she has a much better chance to "beat" this and hopefully experience Fibro more "comfortably" than those of us "oldies". New meds, treatments, support for teens, etc. are in the works. And the "girls" who have been posting here are so determined to make people aware of Primary Juvenile Fibromyalgia Syndrome and hopefully pave the way to a cure one day.

I'm going to "bump up" the thread that details PMJFS, so you can read a little bit about it. Believe me, there isn't much info out there about Juvenile Fibro. Kinda makes you wonder about those growing pains you had as a child doesn't it?

Although I understand the need for mom's to post about their babies, I hope that the girls will also post themselves. It may seem funny to them to post here as most of us are much older, BUT, we can be great support to BOTH of you. I just can't believe how many young folks seem to be popping out of the woodwork here lately with a dx of PJFMS.

Keep your attitude positive, thought it is tough, it's important.

Welcome, megsmom, and you've come to a great place to get comfort and support, and some answers. We share a lot here.

Here's wishing you a good spirit,
tk
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"We must be the change we wish to see in the world"
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Last edited by Administrator; 07-19-2005 at 10:11 PM. Reason: changed title of new thread

 
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Old 07-20-2005, 05:17 AM   #3
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GodsGirl4ever06 HB User
Re: daughter was diagnosed with Fibromyalgia

Quick reply due to headache:

How about encouraging your daughter to get on these boards too? I'm a 17 year old girl with fibromyalgia so maybe I could relate a little better than other people. And I, BELIEVE ME, have been much better emotionally since joining these boards. It seems I have more and more pain however and haven't been able to get on as much. But I would love to talk to/get to know your daughter.
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Fibromyalgia
Mitral Valve Prolapse
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Nummular Eczema
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Esophagitis
Solar Urticaria (but not officially yet)

 
Old 07-20-2005, 04:44 PM   #4
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la_brat HB User
Re: daughter was diagnosed with Fibromyalgia

We have two daughters. It's very hard to watch the potiential you brought into the world not be able to enjoy life as you do or be able to take advantage of any of the opportunities that would prepare them for a good life without you. I hope you are one of the lucky ones that find a diagnosis other than just FMS. With the name of what is causing the FMS symptoms you will be able to treat the problem much more satisfactorially. If just FMS, it is a long process of try this and that. For us it hasn't yet done much. We have found that basic good diet and anything that helps them sleep does the most.

 
Old 07-21-2005, 01:54 PM   #5
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tkgoodspirit HB Usertkgoodspirit HB User
Re: daughter was diagnosed with Fibromyalgia

Quote:
Originally Posted by la_brat
We have two daughters. It's very hard to watch the potiential you brought into the world not be able to enjoy life as you do or be able to take advantage of any of the opportunities that would prepare them for a good life without you. I hope you are one of the lucky ones that find a diagnosis other than just FMS. With the name of what is causing the FMS symptoms you will be able to treat the problem much more satisfactorially. If just FMS, it is a long process of try this and that. For us it hasn't yet done much. We have found that basic good diet and anything that helps them sleep does the most.

Hi la_brat,

I just wanted to post a "quickie" to say howdy to you and that I have been thinking of you a lot lately. Especially given the number of new members who are so young that have recently been dx'd with FM. True that it also seems that, although I DO believe that FM is for sure a disease all on it's own, I'm agreeing with you that "other" conditions certainly can trigger FM. Kinda like (and this is an EXTREME example) a person who has HIV, and it's "full blown" Aids, they will begin to develop other conditions that are directly related to a suppressed immune system. I think that for instance, it's been said before here, someone with a Thyroid condition can develop FM as a result because of the suppressed immune system. Tho docs still have a difficult time relating FM to an autoimmune condition. Or, even developing FM due to Chemotherapy treatments for Cancer. Either way, having FM is HAVING FM, no matter how it came about. And our kids are developing FM at alarming rates, it needs to be researched more intensely, IMO. What would cause someone 12 years old to develop FM? Sadly, there really isn't much info out there about PJFMS. Hopefully that will change soon.

Anyway, its good to see you again. I was hoping you would post when you saw how many mom's are posting on behalf of their kids. I'm glad you are still around. Take care of yourself and hug your daughters!

Hugs,
tk
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Mahatma Gandhi

 
Old 07-25-2005, 05:09 PM   #6
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Dustyblue HB User
Post Re: daughter was diagnosed with Fibromyalgia

Finding a good doctor will be your best bet.
And, exercize will help. Swimming, non weight bearing.....
These links may help.


To find a new doctor, it might help to know the following sources . Here they are, in no specific order:

o Dr. Starlanyl's care providers list at
http://www.sover.net/~devstar/provider.htm

o FM Network at 800-853-2929 (their home page is http://www.fmnetnews.com/ ) to
find out if they have any listings in your area.

o Your local Arthritis Foundation office.

o If you're able to go straight to a rheumatologist without a referral (and
if you want one, of course), contact your local or state chapter of the
American College of Rheumatology or go to the online directory at
http://www.rheumatology.org/

o A list of doctors for CFS/CFIDS/FMS patients is at
http://www.co-cure.org/Good-Doc.htm

o If you're in a major metropolitan area, check out the Web sites of med
schools in your area. Find out what they say about how they educate their
students re: chronic pain, FMS, etc. If you see something you do not like
(for example, if the school doesn't teach how to treat chronic pain), do
NOT make any appointments with any graduates of that school.


Once you reach the point where you're actually calling doctors that seem
like they might be right for you, refer to the following two URLs for
specifics on how to do that:

o For tips on interviewing a doctor to find out whether he/she is
appropriate for you without having to waste time and money:
http://www.beatcfsandfms.org/

http://my.*****.com/ and do a physician search from left menu bar

http://www.healthgrades.com and get reports on many professional medical service/specialties you'd like

Last edited by Dustyblue; 07-25-2005 at 05:10 PM.

 
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