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Posted 10/8/2009 1:33 PM (GMT 0)
sad  My daugther is 17 yrs old. She has not been formally diagnosed with Fibromyalgia yet. We are still searching for a doctor to say this is the problem. She has had severe pain and hyper sensistive skin for over 3 years. We have gone to serveral doctors, but the only thing they say is it is in her head or she is just stressed. The only thing they have found is she has a B12 deficiency. I do not know what to do anymore. How do you help your daugther when she comes to you crying and with such pain and you do not know what to say..........
Posted 10/8/2009 2:40 PM (GMT 0)
You poor thing!  It is hard enough to run the diagnosis gamut for yourself, but to have to do it with your daughter... :(

You have to be persistent.  It takes many people years of searching before they find a doctor who can help them.  You may be able to find someone on one of the forums who can recommend a good doctor in your area, and you may need to consider looking in a different city if yours doesn't have many options.  I live in a small town so I drive an hour to visist my doctors, but it is well worth it for the premium care.

You may want to consider putting your daughter on a B12 supplement, that way the doctors can't use her deficiency as an excuse to ignore her pain.

Just be there for your daughter.  With all of these doctors telling her the pain is in her head, she really needs you to fully support her and let her know that someone believes her.

I pray you find a good doctor soon.

Posted 10/8/2009 3:09 PM (GMT 0)
I am so sorry that your daughter is suffering. As a mom, I know it must be frustrating
and difficult to see your daughter this way. Keep looking for a doctor who will listen.
There are still too many doctors out there who believe that Fibromyalgia does not exist.

Many of us waited a long time to get a diagnosis. I see a rheumatologist. Keep looking,
there are good doctors out there.

To help with her pain, encourage her to soak in a hot bath. Gentle stretching is good and
exercise is wonderful. If she is not active, her muscles will become more stiff and sore.
The important thing is pacing yourself, everything in moderation.

Welcome to the forum, you are a loving and caring mom. I believe the right doctor is
out there and your daughter will get the help she needs. Don't give up. We care.

Hugs

Robin
Posted 10/8/2009 3:26 PM (GMT 0)
Thanks for you encouraging words. We have an appointment with a pain clinic this afternoon. Maybe they get help. I am taking her back to our doctor next week and demanding a referal to a rhematologist.
Posted 10/8/2009 10:33 PM (GMT 0)
Hope your visit to the pain clinic was helpful. Like everyone said above, don't give up. You have to be an advocate for her and it sounds like you're headed on the right path. A lot of doctors out there don't believe what the younger patients are telling them. It must hurt to see your child in so much pain and not be able to help them. I had a very severe low B12 level and I know that when it gets low, it causes alot more pain. I have a B12 supplement I take and it's a liquid. It really makes a difference. How is her Vitamin D level, a lot of fibro patients have very low D levels too! Let us know how everything goes! This forum can be very helpful! Good luck and lots of gentle hugs to both of you!
Posted 10/8/2009 11:36 PM (GMT 0)
Wow, I can't wait to see if mom got the refferal!!! You go mom!!!! I know if it were my daughter whom i watch very closely all the time, I would be the same way. Good luck!!! Lots of prayers coming your way!!!
Laura
Posted 10/8/2009 11:47 PM (GMT 0)
Hi mom and welcome to our Fibro Forum Family!

You are in a miserable situation...when we see our children hurting we hurt right along with them as well as the worry and sometimes guild associated with it. First, please take your right arm, reach around over your left shoulder and pat yourself on the back! Why??? You have survived enough to at least come online and ask for help. Most everyone here started out that way and that's hard to do.

Plus, even though your daughter is so unfortunate to probably have fibro, she is lucky to have you for a mom. So many time the members who had fibro from a young age were not supported...but left to believe it truly was in their head and that they were whiners. We do have a lot of younger members here so I do encourage you to invite your daughter to join us. And at her age she's nearly an adult...wow, that's hard to say when they are our babies...lol This is a very family friendly site so you don't have to worry about who she talks to or what she will see here. It is well moderated to keep it appropriate for younger members as well as the rest of us.

Then...as far as ideas to help your daughter, you have gotten some great ideas already. We all try many things to help our pain level to be under control ... some work, others don't. Check out our Fibro 101 Thread. It will be placed at the top of the page permanently very soon. (long story but last week we had a 'crash' and lots several items) In that thread are lots of great ideas for helping with pain, medications, you name it!

If I were you I would take my daughter to the closest university/teaching medical hospital. Call and tell them what you need...a doctor who can diagnose and treat fibromyalgia in younger patients. It might be a long drive or an over night stay but no way will they dismiss you and your daughter as being "in her head". It's shameful that her doctor won't get his head out of the dark ages and listen to her. Sure, it might be something else, but once those are eliminated, and it sounds like you've had most all of the tests run, then Fibro is the most likely reason for the pain. Plus the 'tender points' will most likely be active on her body.

Please keep posting and stay with us. We're here to support you and your daughter. Tonight, Thursday, happens to be our Chat Night. We meed in the Chronic Pain chat room at 6 PM, Pacific, 9 PM Eastern time. For more details refer to the Chat Night post I put up on Thursday mornings. It should be on page 1.

Hang on mom...in fact take my hand (extending hand) and we'll all make it together. We find ways to have a "normal' life and also to get the help we need and desire.

Hugs!
Chutzie
Posted 10/9/2009 12:15 AM (GMT 0)
Oh does that sound familiar. I can relate to your daughter, my symptoms all started when I was 15 and it took several years before I was finally diagnosed last summer before I turned 21. I agree with what others on here have already said, having a mom that supports and understands is the best thing in the world, I for one don't know where I'd be if my mom hadn't been just like you and adamant about finding the right answer.

Hope you find the right doctor very soon, again like every one that's posted before me, don't give up, be there for her, just having even one person believe you helps. Good luck!
Posted 10/9/2009 12:19 PM (GMT 0)
Well we went to the pain clinic yesterday. He was a Chropractior - Nutritionist. His input was that it could be a nutrition problem. He wants to run a nutrition test and the put her on a diet and supplement. Also said the b12 pill she is taking everyday needs to be along with a complex vitamin. I have decided to let him do the test to see what he may find, then I will see about he program. I want to make sure he is not just trying to push his program...... However, he does seem to believe there is a problem, but maybe not fibromyalgia. Anyone ever tried this before??????
Posted 10/9/2009 1:13 PM (GMT 0)
Hi Melsmom and welcome. Please be very cautious with this chiropractor. Some of them are just out to sell you a lot of vitamins that they make money on. Plus a chiropractor can not run the necessary test to rule out all the things that it could be to get to the bottom of your daughter's problem. If he wants to do any adjustments on her make sure he is trained in the fibro body, we can't take the normal adjustments.

 

We have members that have had fibro all their lives and can't remember living without pain. They have been told it is growing pains or all in their heads.

 

I would look for a rheumatologist that believes in fibro. When I was searching for the one I have now I asked to speak to his nurse, receptionist dont' know much about a doc's beliefs, and I asked her if he treated fibro and myofacial pain syndrome and if he believed these were real disorders. Then I asked my GP for a referal to him. As it turns out he is a very caring doc. and I like him as a person.

 

Good luck and I hope she gets a dx soon.

 

luv and hugs

Marlee

Posted 10/9/2009 4:03 PM (GMT 0)

Hi, Melsmom, and welcome.  I totally agree with Marlee.  Check out the Fibro 101 thread.  It should be on the first page of the forum.  There is a lot of information in there that may help you and  your daughter. 

It's so difficult when you are seeing your children ill.  I went through that with one of my daughters and the doctors were saying it's all in her head.  She was in tears because she wasn't being taken seriously.  We didn't settle for that and found a doctor that listened.  In her case, she had endometriosis but the docs were telling her it was all in her head and that she was vomitting because she was bulimic.  She was never bulimic!  So, keep the search up.  You know there is something wrong and you need to really find out what  it is.  I'm sending many prayers your way.

Sherrine

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