Hello!!! I know that most of you (maybe all???) are adults dealing with Fibro. I didn't get to read through all of the posts to see if there were any parents with children suffering on here. My daughter was diagnosed with it about 2 weeks ago. She is 9. We are just starting the pain management and other medications.
For the past 4 years, she has had nothing that has 'made sense' to any of her 5 Dr.s. She suffers from
-Depression/severe anxiety, is on medication for it
-IBS- she either has major constipation or the exact opposite (completely horrible diarreah), as I write this she's doing the 'clean out' that her G.I. Dr. has instructed us to do when ever she deals with constipation problems for longer than 1 week. She's been tested for EVERYTHING to do with G.I. and the only thing that came up was a 'severe IBS' issue. The Dr. was thinking it was going to be Chrone's.
-PAIN...PAIN...MORE PAIN. I am at a loss for words. There are nights where she rolls into a ball and is in tears. The pain amounts, frequency, intensity and locations have only continued to get worse over the past year. In her legs, knees, neck, spine (it's the worst in her back/spine!), hips/sides...It started with her spine, new locations keep getting added monthly it seems.
-Horrible sleeping patterns, always tired
-body aches/feeling sick
-Gets sick very easily, immune system is off and once she gets sick, she's sick for a LONG TIME
-Gets dehydrated very easily and she's ALWAYS thirsty
-MAJOR MIGRAINES!!!!! In fact, they'd gotten so bad that she'd actually throw up. They are 'manageable' with medicine, but she still gets bad episodes on occasion.
-Food 'intolleraces'. She's been tested for all sorts of allergies, nothing came up positive- but because we spent about 6-8 months of 'diet restrictions and changes', we KNOW that she is extremely sensitive to dairy and corn products (corn, corn syrups). When ever she consumes anything dairy/lactose, she gets HORRIBLE stomach pains.
Her current Dr.s treat the symptoms of everything. She see's all pediatric specialists: Neuro for the migraine control, G.I. for the digestive problems, Rheumotology for the body pains (just started with this DR.) a regular ped.s Dr. who she see's when we need to get in right away- because she's easy to get into. Also, infect. disease (which will pretty much stop now that we have a different diagnosis).
For the last three years of Doctoring, we have been nothing but upset and frustrated. It took so long to get to this point! Our lives have completely been turned upside down. Everything we do has to go around whether or not our little girl feels well enough to even LEAVE THE HOUSE. There are days she refuses to even go to the store or go out for dinner. When she's having a bad episode, her and I don't leave the house for days.
Now that we have a diagnosis...and when her meds get under control...Do any of you feel like it's controlled A LITTLE bit better? I know that there will always be 'bad days/weeks' but how about months?
Because of her age, she cannot take a lot of the regular medications made for Fibro. they have to try different mixes of things (for all of her pain, anxiety, G.I.) What works for some, won't work for others. And some of the things she has taken in the past doesn't mix well with other things when it comes to meds. It is going to be a long process. Some days, I want to scream, cry and throw a fit. It's horrible to see your child to go through this and not be able to do much of anything.
I read the tip on here to use a heating/massaging pad. I definately will be trying that today with her She's had massive pain in her back and hip areas.
Any other helpful tips would be great. Tylenol does nothing for her pain, neither does ibuprophen. She may has well just eat a piece of candy.
We've tried warm baths, cold packs, heating pads, those body ache patches, body cream/pain relieving rubs. Nothing seems to really do the trick.
This past week has been very hard. We are a family that loves to get out and do things- trips to the beach, going to the zoo, going to DISNEY WORLD!!!, day trips around our area to explore.
Since this illness and pain has started, her life has changed so much. She's happy less often, no energy and a lack of interest in things. When she was in second grade, she missed over 60% of the school year. The beg. of her 3rd grade year, we pulled her out and started to home school her by November 1st of the school year, because she'd missed 36 days of school and every day she was there, she was miserable and in pain. The school nurse said that she needed to 'toughen up, because most kids with migraine and pain issues can take a pill and go back to class 10 minutes later.' I was SO FURIOUS that I reported the nurse and three of my daughters pediatric specialist Dr.s (from the MAYO clinic in Rochester, MN) sent notes to the school district saying that my daughter was in a lot of pain, suffering from a health condition and that the nurses response was unacceptable. The nurse still works there, but I was told 'proper actions of discipline was taken'
Since we've started home schooling, my daughters quality of life has been better. She has fewer migraines, less stress issues and she's happier. We are doing very well with her education. She's still involved with a lot of activities with other kids, when she's feeling up to it. We've even joined a home school group that meets once a week. We missed this week, because of her not feeling well.
We moved over this summer, now living in the Southeast. New Dr.s, new methods of testing and new ideas. With in 1 month of them looking at her charts, previous history and talking to us for about an hour- they realized that she needed to be seen in ped. rheumatology. After two visits there, the Dr. was very, very confident in her diagnosis.
We are hoping that we can get things under control a lot better than they are now. We need another Disney World trip soon!!! That would be the best celebration ever!!! She's gone for so long with out an OFFICIAL diagnosis, it's been hard to keep her health under control (or at least manageable!).
My Rheumy on Monday I am looking forward as I mentioned.. Lately my legs just give out? I walk, and they like bend and lock.. Hard to explain.. My left side is actually bruised all the way down, and I wonder if it is at all possible that the locking caused it? I dunno.. I shall ask..
I don't why I let it bother me so much. Probably cuz she wouldn't shut up about it! Lol.
Hope things start looking up real soon for ya! 
Lol! I added this thread to my subscriptions so I wouldn't forget about it like I have so many other threads. Lol. 
I always go for more holisitc remedies like acupuncture and chiropractic before I go for my medicine cabinet. Just too many side effects for me. Mostly the falling on my face. Lol. Every medication I have ever taken makes me so tired!
NO BUENO!!! Gonna go swimming tonight and probably to a class tomorrow. Gotta get my butt back in shape! Lol!
.. I hope it eases up..
and 
But I know how hard it is to feel motivated when you are in so much pain. 
