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.
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!).
Welcome to the thread. I'm so sorry for what your daughter and you are going through.
It is a relief to get a diagnosis so at least you know what you're dealing with. It seems that with fibromyalgia, it's mostly about treating the symptoms the best you can while trying to balance life so that you don't cause any additional flare-ups or prolong flare-ups.
Maybe eventually more research will be done and with that more relief.
Welcome!
and
I am so sorry for what your family is going through! I have never heard of someone so young getting diagnosed. My doctor told me I was young (21 at the time... or 23... I forget) but based on my "limited" recollection we assume I had it since at least 16.
I have vertigo so I often feel dizzy and nauseated. I take meclizine at night and I drink something called Reed's Ginger Beer. It is basically a really strong ginger ale but it helps SO much when I am feeling nauseated. I usually buy mine from Trader Joe's. Again, another acquired taste
My bf hates the taste but it always makes him feel better so he drinks it.
It sounds like diet is key for your daughter! I would HIGHLY suggest NO soda and VERY limited fast food
Really the more natural you can keep things the better!
Hope you can find some of this information helpful and I hope you can get back to WDW real soon! Sounds like you need it!
I can remember back to my 20's starting with symptoms of fibromyalgia. I think at that age and time (the 80's) I mostly dismissed the varied symptoms and never thought that together they represented anything.
I get vertigo from time to time and I have a prescription for meclazine (Bonine is the brand name) to take when that happens. (I also take meclizine every day while on a cruise, and I've never had seasickness or dizzyness after the cruise).
Yeah! We were shocked. I had always thought it was an 'adult problem' that mostly women experinced (more women then men anyways). Her Rheumotologist said that everyone who HAS it, was born with it and most kids have it and it goes undiagnosed for so long that most people assume it's an adult issue, due to the "facts and studies" on it. The studies done only focus on the age that they receive the diagnosis, NOT when they actually first notice symptoms and problems from it.
Only a very small % of kids are actually diagnosed and treated for it. It's like 1-2% or some crazy small amount like that. Most teens who are diagnosed with it have already spent years with health issues before the Dr. actually finds out and diagnosses Fibro.
Her Dr. said that she has 8 cases of kids under 12 with Fibro. and 15 teens. 9 of those teens have been 'doctoring with undiagnosable diseases' for the past several years. Sometimes symptoms present as other things and form into what we know to be Fibro. Like my daughter had crazy fevers ranging from 102-105 for weeks on end, some lasting as long as a month or two. They were unexplainable fevers. Her current Dr. said that about 10 of the teens and children she has all had that exact same fever history! The unexplained fevers slowly got a little better, but only as the pain starts to become worse and other symptoms develop. With the fevers, it's not a common Fibro. symptom, so the Dr.s would look elsewhere for answers (in the genes, blood, organs). And the kids go undiagnosed. As fibro gets 'more developed and understood', her Dr. said that it's still a huge question mark because everyone has different levels of pain, different symptoms, different 'episodes'...
This is so interesting to know! I know for a fact that my IBS (irritable bowel syndrome) started in my early 20's, and now it's commonly known that people will often have IBS and FMS. I also have been diagnosed with RA for several years, and again there seems to be a link. A lot of the auto-immune diseases, I guess. :/ I've also had mild fevers a lot during my life, always feeling like I'm on the verge of coming down with the flu or something, always feeling like I'm fighting something off.
Hi pannm.. It breaks my heart to read that...
I was diagnosed in my 30's, but I am SURE I had it as young as your daughter.. I can relate to every single thing you posted..
When I was young I had episodes of not walking due to pain, the migraines, etc.
I use heat for the aches and pains.. I find it is a temporary relief, but any is better than none.
Your question about long flares.. Personally, they rarely have lasted months. Days, weeks, YEP... For me, and my Dr. is with me on this one, the changing of seasons brings out the absolute worst.. I am not sure how warm in the South you are.. I am N O R T H, and this time of year wrecks havoc.. I tend to just go with the pain, heat, rest, especially with the migraines..
I wish I had so much more to say, but none of the pills have ever worked for me. Not enough to take daily..
I am sorry if you covered this ( i have memory issues) has she had a brain MRI for those migraines, or a CTSCAN? Just to appease yourselves...
And I wish my Mother had me speak to someone professionally for all that I was going through.. Especially when you seem to be the odd man out (so to speak).. I do weekly now, and it helps me SOOO much... If anything to just clarify I am not crazy, this is real, and it is happening.. Know what I mean?
I can hear your hearbreak for your little girl.. I wish I had a magic wand... Sending lots and lots of gentle hugs to your family
Please feel free to ask away!
I seem to have flares that last for months, for the last few years. I only have the occasional good day or week.
I use heat for temporary relief. I also will use Biofreeze for temporary pain relief.
As for Lyrica, etc, they haven't helped me much at all.
hello Fibro Friends!
I just returned from
10 days at WDW and i am very proud to say I MADE IT!! I can't believe it. not ONE flare up! i was a wreck for weeks thinking I'd be in the resort every day not having fun. but i did it. i also had a day at Discovery Cove which was just a day of swimming and relaxing and it helped a lot.
Of course, now that I'm home i feel like collapsing, but I went to my chiro this morning nd she helped me a lot. Does anyone else use a chiropractor at all? I truly feel seeing one has helped me gain a few extra spoons
take care everyone.
namaste!
jenne
I'm so glad that you had an awesome vacation! I've had mostly very good experiences with flares while on vacation, I think it's the adrenaline that kicks in that helps. Then I totally crash when I get home. For WDW and for a cruise, the after-crash is totally worth it, but I've had to cut out on smaller vacations and trips because I can't stand the thought of the crash when I get home.
Hi all-I am a first time poster. I usually hang on the Budget Board and lurk the Dining Reviews. LOL. I've had fibro for about 6 years. It manifested after I had abdominal surgery. I've also had numerous fender benders, always rear ended, I feel like I have a target on my back. So I've had neck issues for about 15 years. Anyway....I have noticed a pattern of feeling pretty good during the spring and summer. My really bad symptoms don't usually start till about November. This year however I feel terrible already. I teach 2nd grade and I already called in sick today(only 3 weeks into school). I didn't sleep all night. Woke up officially at 4 am with a completely stiff neck and terrible leg pain. Before I went to bed last night I told my husband I would make him a sandwich for his lunch and leave in on the top shelf of the dryer. He looked at me a little funny. Haha. But I feel like here comes the fibro fog again....I feel so unfocused.
Just wondering if everyone feels like their fibro is worse in the fall/winter? I don't take any kind of medication. I haven't been to the rheumatologist in about 4 years because if I won't take meds what's the point. Just looking for some commiseration I guess....and i have an appointment tomorrow night for a massage. Does anyone have experience with massage? Does it help?
Welcome to the thread. I think that massage would be great; I've had professional massages in the past, but not in the last few years. But when my DH rubs my back or shoulders, it does help. They just have to understand that they can't be too rough because our muscle pains are not the same as other peoples'. I hope the massage helps you.
Agreed! Mental health is just as important and in some cases necessary. I know it was suggested to me when I was first diagnosed. It did help.
My fibro is always worse when it's cold. So annoying because I actually like the fall/winter
I hate heat! Lol.
I have fibro fog AND ADD. It's a bundle of fun over here!!! I really wish... um... I forgot! Lol. Wow. Okay moving on!
I also choose not to take meds. I do take some ibuprofen and/or vicodin when my pain gets too hard to handle. I try not to do it too often.
I use massage, acupuncture, chiropractic, and muscle injections. It's just hard to stay on top of all the appointments sometimes with my work so I don't really get all the relief I could/need. I'd say these things definitely do help but it's temporary.
Much love and many gentle hugs to all!
I see a psychologist a few times a month. I started seeing him for something unrelated to my physical health, but boy he's been great to talk to about having an "invisible" disability, so to speak. He's been a great help about encouraging me to tell my family and my primary care doctor how bad the pain really is, and to not be afraid or ashamed to take it easy on myself when I'm feeling really lousy. I had been keeping a lot of it to myself and only venting to him about it. He has several patients that he said he sees to help deal with fibromyalgia, and other similar diseases.
This sort of thing scares the crap out of me. I've always been afraid to drive, so I've never even learned how. I always thought that maybe eventually I'd learn, but now that fibro has the habit of chewing on my brain meats I definitely do not plan on learning to drive. Between the fibro and the meds for fibro (it figures!) my memory and attention span are shot. I so do not need that kicking in while I drive.
I finally broke down and told my husband I was thinking of getting a walking stick (which sounds better than "cane", at least to me). I told him ahead of time that he's not allowed to make fun of me for it though. We've always been the kind of people that tease and pick on each other constantly, (I've even noticed people thinking we were actually fighting) but there are limits. Maybe if I do decide to go with the stick and get comfortable with it, then I'll tell him it's okay to tease me.
I've found myself starting to daydream (for lack of a better word) while driving, so now I really make myself pay attention. And I don't drive too far for anything, fortunately.
I like the idea of a cane but due to my RA and carpal tunnel, I'd end up splatted on the ground if I relied on the strength in my hands and wrists to keep me up. LOL
DO IT DO IT DO IT!!! Lol. I love my canes!
I have two! The first one is one of the cheapos from Wal-Mart that I wrapped in zebra print duck tape
My second one is a custom cut one that I bought at San Diego Comic Con this past summer from a guy who specializes in steampunk accesories
I call it my classy cane
And its gorgeous! Haha!
I do get some weird looks especially at Disney but I don't care! Helps me get through my long Disney days when I don't feel like being high on meds. Lol.
Your cane sounds pretty cool!
I have a question. The last couple of posters have said they have decided not to take medicine specifically for they fibro. How and/or why did you come to that decision?
I've been on meds for over 9 years and I'm running out of effective options. So I'm just looking for other ways to treat/cope right now.
I tried amytriptline (SP?), Lyrica, and gabapentin. I didn't notice much improvement so I stopped taking them. I did try them for several years because I know they have to have time to build up in your system.
I currently take Adderall XR due to the extreme daytime drowsyness and lack of concentration that I have. I have noticed a definite improvement, though not a miracle cure, so I am still taking that. I also take Plaquenil for RA. I don't know how much that's helping because I'm in a lot of pain every single day, but don't know if its from RA for FMS.
Hey ya'll.
I have had fibro for about 15 years. For the most part I've learned to just make the best of most situations.
But traveling is becoming harder and harder. Due to the sitting while driving and hotel beds. We usually stop more often now to let me get out and move. Other wise the stiffness becomes unbearable. Now the hotel beds.... do any of you travel with any type of mattress topper? If you do what type? I have to find something that works or our vacationing may be in danger. If any of you have any suggestions..... help please.
I've to totally eliminate road trips.
I haven't been back to NJ to see my family in about a year and a half, and I used to go a few times a year. I just can't bear the thought of that long of a car trip (about 5-6 hours), and then getting there and not feeling well enough to do anything with my family.
Regarding beds, usually I don't have a problem but last year on the Disney Magic I don't know if it was me or the bed, but I had a hard time getting comfortable and ended up with a fair amount of pain from sleeping.
Even at home now with our awesome pillow-top bed I have to place pillows under my legs, next to my sides, etc, just to get comfortable and not wake up in extreme pain. I wear wrist splints to sleep in for carpal tunnel and those things work great; I wish there was a body-cast type thing that would hold my entire body in the correct position while I slept. LOL But next time we travel I will ask for extra pillows to use.
Hey, have any of you seen or heard from tigger at all? I hope she's ok!!
..
I called out of work today and basically slept most of the day, so I didn't even accomplish much of anything at home either. 
