Teen with Fibromyalgia

[wendow]

Hello Dis'ers! I am looking for advice and guidance. My 15yo DD was diagnosed last week with fibromyalgia. She got mono last summer that never really would go away and the doctors believe it triggered fibro. We are still 'processing' what this means for her. She has two grandmas with fibromyalgia so I know what it looks like in a 60+ yo woman but I am having trouble wrapping my brain around what this looks like in a 15yo.

We have a trip planned for Sept. We typically hit RD, leave after lunch, go back to the resort for pool time/naps for who needs them and then back to parks for dinner through the close. Is that going to be too much now? How do others with fibro tour the parks?

Also, anyone with a teen with fibro? I'm really interested in talking to someone b/c I just feel a bit lost here. Everything I read online about fibro is middle aged women...

Thank you for any help!

 

[5kidsmommy]

I don't have a teen with fibro, I have a 15 year old daughter with POTS though and many of the issues faced are similar, exhaustion, pain, etc.

My daughter and I did a trip in November, she had just recently started getting really ill a few months before we left so it was a learning experience. The one thing I would suggest for your daughter is a wheelchair, that way she can save her strength. Having my daughter in a wheelchair made it possible for us to spend more than a couple hours in the parks. Also plan for frequent breaks, although we went in November it was hot and the het makes exhaustion worse.

This trip was different too because she couldn't do too many rides. We switched between rides and activities to give her body a break. The key is being flexible, running from ride to ride just probably won't be possible.

I hope that helps a title. My daughter did have an amazing time on the trip, despite having a few days where we went back to the resort mid day for naps. Your daughter can still have a wonderful trip.

 

[nikkislaght]

Hi , I have fibro.. and never considered myself middle ages.. but I guess I am. . when did that happen?
anyway, we do Disney yearly , I take my time.. have good footwear, make sure I eat properly.. and lots of resting..
I take a really great med.. if you want the name and some info on it PM and I can send you a link.. I believe without this med I would be bed ridden..

I also don't shower in the AM.. the change in temp really does bother me.. and if she has a GERD that can set off an "attack"
I still get fibro fogs, but not as bad.. I have other pain issues on top of Fibro so I deal with that too..
I have not needed a wheelchair in any of our trips. but I do use a cane.. I take my time to get from one ride to another.. we also do 5 days , this helps reduce the amount of time running from place to place..
I hope you have a great trip..

 

[mamabunny]

Our daughter was diagnosed at age 11 with Fibro. (She is 22 years old now)

I understand your shock. There is very little info out there for parents; extrapolating how the disease process works in a 65 year old grandmother isn't always accurate when you are dealing with a teenager.

The main thing you both need to know is this: It isn't life-ending. She can still do all the things she wants to, but she may have to do some of them differently, or more slowly, or at different times of the day. This doesn't just apply to WDW; it will hold true in all aspects of her life. You will (both) learn to adapt to this new "normal", and in time you will find the little tweaks that will make her as comfortable as possible. In time, it becomes second nature. It doesn't make the symptoms go away magically, but you will begin to feel more like you have control over your lives again.

Wheelchairs, Rollators, even the "Junior" version of this scooter are all things we have tried over the years. Her custom Ti-Lite chair is just about at the end of it's useful life for her; she now finds as an adult that the scooter works better for her overall. She and I now have a "matched set" of scooters due to my own health issues.

Preventing "flares" is key to quality of life - and controlling them once started - is an art form. Because they are still growing, and hormones are dumping in at a scary rate at this age, you have all the "fun" of normal teen angst paired with fibro. It can seem like punishment at times.

So, to your daughter, I say this: Fibro sucks. I'm really, really sorry. But you can't give in to it - you have to hold strong, and keep your head up, because if you don't, you will regret it. We don't believe in "no pain, no gain" at our house - but we do know that sometimes you have to find a way to push past it long enough to do the things you want to do. Yes, there is a price to be paid the next day (or two or 10) but every time you do it, you win - and the fibro loses.

You will have to try and explain your limitations to your friends, and to whoever you date. Spoon theory is the easiest thing we have found to explain to people not familiar with how fibro affects you.

And to you, Mom, I can only say that I know how hard this is - to watch your child struggle, and live in pain is horrifying. To know that there are drugs available - but only once she reaches a certain age or growth phase is equally horrifying. I know you need to grieve at the thought of all of the ways this will impact her life, but it is important to not let it rule your or your family's world completely. As unhappy as this is, there are always, most certainly, other folks out there who are dealing with far worse burdens, day in and day out. Our family's motto has become "Normal is just a setting on the washing machine".

It gets easier, I promise.

Welcome to Holland. You aren't alone. It's a strange new place, but I promise, in time, it gets better.

 

[Fuhnuh]

This is totally anecdotal, so I'm not professing any real understanding of making things better. DW also had a mysterious illness, originally diagnosed as mono, in high school. She has battled fibro since then, although it wasn't until she was in her late 20s that she knew what it was. We have been together since she was 18 and it seemed to get worse and more frequent in her 20s. We bought a walker for her so she could get to the bathroom when things got really bad. Before she got pregnant at 29, she was having frequent and severe flareups. I was so worried how bad it was going to be for her at the end of her pregnancy. Luckily, her last trimester was as good a three-month period that she had for a long time. But, in the weeks after her pregnancy she had one of her worst flareups. We were at a loss and tried acupuncture which gave her a little relief but not much. Her acupuncturist suggested she stop eating nightshade family plants (e.g., tomatoes, peppers, potatoes). She tried it and got better pretty fast. We chalked it up to coincidence and a few weeks after she got better she ended her restricted diet. She ended up with another flareup. Since then, she has went on and off the restricted diet many times (she loves tomatoes and spicy food). Without fail, she has had a flareup afterwards. It is hard to ignore the connection but it is also possibly psychosomatic. She is now 44 (sh, don't tell anyone) and has been able to, for the most part, manage her fibro by avoiding trigger foods. Overactivity and stress can still trigger a flareup, but they haven't been severe enough for me to have to pull out the walker or think about getting her a wheelchair for 15 years.

After all that, I guess I'm saying that for DW and others I've talked to, finding triggers, not over exerting, and keeping stress levels low seems to help. What I'm not saying is that there's a direct link between nightshade and fibro. It does seem, again anecdotally, that many sufferers can be triggered by inflammatory reactions to certain foods. I don't know how useful any of this info is to anyone, but I thought it was worth posting just in case it might help anyone at all.

 

[wendow]

Thank you to everyone who has posted! I really, really appreciate any advice and it is very helpful to me to hear your stories. I have lots of questions, and I may PM a couple of you since this probably isn't the place to ask generic questions about fibro.

I have really considered taking my dd off gluten. She is already pretty much dairy free as one of my ds's has a dairy allergy so we eat mostly dairy free already. But I have read gluten can be a trigger. I've read about nightshades being inflammatory also so I will definitely take that into consideration.

I hear you all saying the same thing in terms of finding triggers. That is my #1 goal right now as we aren't real sure. She had a very stressful and exhausting week about 4 weeks ago. I believe that is what triggered this but I can't figure out how to stop the flare. It's all super overwhelming.

Again, thank you all for posting.

 

[mamabunny]

babybunny has some really specific triggers - stress (physical or emotional), cold weather and overexertion are her primary triggers.

babybunny has also had night terrors since she was about six months old, so she has had disrupted sleep her entire life. We don't know if they are related, but they definitely both impact her quality of life, especially when they occur together.

We lost my Mom and DH's mom within about 16 months of each other, and that set off what could best be described as a firestorm of flares.

babybunny does have some relief from hot baths, hot tubs or spas, and wrapping up in warm blankets. Warm, moist heat helps a lot. When she is in a flare, it is not uncommon for her to sleep literally every possible moment. BIG distractions (like a trip to her happy place, WDW!) can also help.

Typically, what will end a flare for her is either a major distraction, or a five to seven day stretch where she can just sleep her way out of it. She also has had some
success with guided imagery and similar techniques that she has been working on for *years*. "Pain management" has been largely useless for her. Recently, we have discovered that Tylenol Arthritis actually is very helpful for her. She takes it only at night, and it is proving to be quite successful. So far. :::knocking on wood:::

We are going to experiment with removing all of the nightshade related items from her diet as well; I had never heard that either!

 

[Pridemom]

My 16yo daughter has fibro secondary to her Juvenile Arthritis. The new term is Amplified Pain Syndrome. When her juvenile arthritis is really bad, it amplifies pain everywhere.

You could try removing sugar and flour from her diet to see if it helps inflammation levels. It helps mine (I have juvenile arthritis, too), but I can't get my daughter on board.

Our children's hospital has a program for kids with Amplified Pain Syndrome that has good results. It's physically and mentally taxing, but the kids go to clinic five days a week and they have physical therapy, occupational therapy, counseling, and lots of exercise. Kids can go from barely able to move due to horrible pain to nearly pain free. My girl hasn't gone through it because when her JA flares are controlled, her pain levels are greatly improved.

 

[wendow]

babybunny has also had night terrors since she was about six months old, so she has had disrupted sleep her entire life. We don't know if they are related, but they definitely both impact her quality of life, especially when they occur together.

Recently, we have discovered that Tylenol Arthritis actually is very helpful for her. She takes it only at night, and it is proving to be quite successful. So far. :::knocking on wood:::

My dd had night terrors also (not from 6mos though!!)...probably from ages 4-8 but she has never been a good sleeper, even as a newborn. She also was a sleepwalker for many years. Even prior to this fibro stuff, she wakes most nights for several hour stretches. I do the same and had trouble sleeping even as a child so I just assumed it was her genetics (which clearly stink!).

Does Tylenol Arthritis have caffeine in it? I may look into that. My dd is currently on no meds as our doc said they do not use many meds for juveniles with fibromyalgia but prefer lifestyle changes. Which I prefer also but if she is in pain, she needs some relief...!

 

[wendow]

You could try removing sugar and flour from her diet to see if it helps inflammation levels. It helps mine (I have juvenile arthritis, too), but I can't get my daughter on board.

I have begun cutting my dd's sugar. She is also willing to give up gluten foods. It helps that there are so many alternatives. I just need to make a menu and go for it. My dd is more willing on the gluten than the sugar but she has not complained too much so I'm trying to slowly cut back.

 

[mamabunny]

My dd had night terrors also (not from 6mos though!!)...probably from ages 4-8 but she has never been a good sleeper, even as a newborn. She also was a sleepwalker for many years. Even prior to this fibro stuff, she wakes most nights for several hour stretches. I do the same and had trouble sleeping even as a child so I just assumed it was her genetics (which clearly stink!).

Does Tylenol Arthritis have caffeine in it? I may look into that. My dd is currently on no meds as our doc said they do not use many meds for juveniles with fibromyalgia but prefer lifestyle changes. Which I prefer also but if she is in pain, she needs some relief...!

No caffeine - it may even make her a bit sleepier than normal if it helps her pain subside. babybunny literally gets so sleepy when her pain subsides that you might as well just give her a spot to lie down and a blanket, cuz she's OUT!

We couldn't find any Tylenol Arthritis locally for a long time, so had to order it off of Amazon.com.

 

[Pridemom]

Poor sleep contributes to fibro. Has she been seen by a sleep specialist? My eldest was a horrible sleeper from day one. He was up every two hours for his first two years, walked in his sleep, had reflux, and snored terribly. A sleep study revealed his problems and after tonsillectomy and reflux meds, he slept!

 

[wendow]

Poor sleep contributes to fibro. Has she been seen by a sleep specialist? My eldest was a horrible sleeper from day one. He was up every two hours for his first two years, walked in his sleep, had reflux, and snored terribly. A sleep study revealed his problems and after tonsillectomy and reflux meds, he slept!

She has not been seen by a sleep specialist. And she is not sleeping well lately...well, since the fibromyalgia has set in...so I need to get her some help with that. Our doctor said to take melatonin but we have used melatonin since she was like 5yo and it really does not help her much.

My dd does not snore or reflux though. She refluxed as a baby, and we treated it with meds, but she outgrew it at about 1yo.

 

[wendow]

Curious if other use DAS for this...I have a ds who is mildly austistic. We've been ok managing him in the parks and never felt we needed the DAS. I hate to go overboard and do not want to take away anything from guests who need more assistance than my dd. But I'd be lying if I said I wasn't wasn't concerned about her standing in lines in very hot weather.

 

[hsmamato2]

interesting thread..... Unfortunately b/c Fibro and it's 'sister' CFIDS are basically "garbage can diagnoses" (not my term) it can be challenging to find good,realistic help,since reports vary so widely,and so do symptoms/levels of pain,etc. (I should know,I have the same issues,seems like it's a 'family' trait) I really like mamabunnys advice...this isn't the end, just...different. I tend to go slower in general than I used to,and I am SO carfeul about triggering any worse symptoms (at first I felt selfish,now I just consider it good self care) For me that means an extremely careful diet, GF and DF,soy free (that's the basis) multiple supplements to help balance my body,careful exercises targeted at easing inflammation points- for a trip like Disney, I try to let others in my party go do extra stuff and have fun while I catch a break,watch a show, or just people watch to rest up a bit.

 

[hsmamato2]

Hello Dis'ers! I am looking for advice and guidance. My 15yo DD was diagnosed last week with fibromyalgia. She got mono last summer that never really would go away and the doctors believe it triggered fibro.

FWIW.... I can't remember what study this was, but I was online researching the similiarities/differences between CFIDS(chronic fatigue) and Fibro.... (my natural doc I visit regularly agreed with this info too) Almost all cases of CFIDS/Fibro suffer from both, somewhere between 75-90%...and the trigger to 'kickoff' (my term lol) differs... in general, Fibro is more likely to begin b/c of stress...CFIDS is usually 'kicked off' b/c of a viral/bacterial load....For some reason I found this interesting(didn't really change anything of course) And that mono (epstein Barre) is HUGE common factor in Cfids 'kickoffs'.... So just another fun fact that doesn't tell us much but clarified a few things for me.(3 strains at once in my case!)
Sorry,I am 'middle aged' too but I am discovering that age doesn't matter so much as severity of symptoms. I don't like that a 'garbage can diagnosis' just means 'stuff there's no real explanation for...yet'- I don't take meds per say for anything,as I am try as hard as I can to avoid those anyway.(unless it's an advil kind of day,those tend to happen when on a long vacation) But regular trips to my 'nature doc' for chiropractic/muscle work/acupuncture,etc have been invaluable.

 

[tamitra]

I had to create an account to be able to reply to you. I don't have a teen with fibro, but I myself have it and have for about seven years. I wanted to give you and your daughter some thoughts.

As someone else said, Fibro sucks. And I agree - the Spoon Theory is a great way for you to explain it to your friends, and for her to explain it to her friends. Every disease is different, and every Fibro patient has different systems and finds relief different ways. If something that someone suggests here or somewhere else doesn't work great for you, try something else. My mom and sister have Fibro and we all manage our diseases differently.

That being said, here are some 'universal fibro truths' I've learned since my diagnosis that apply to a Disney trip.:

• Get used to taking breaks. There's nothing wrong with sitting down to rest. You're not lazy, you're recharging your body. Stop and enjoy the parades from a seated position. Sometimes a 10 minute rest on a bench buys you another hour of activity.
• You have to learn to make choices and accept that you can't do it all. You can't do an early morning to late night -- it's too much. Find what time of day is 'best' for you and make the most of that window. (Non Disney point: Over time I've found that I need about three nights 'at home' to recharge for every one night I venture out. And I'm not talking about going dancing or clubbing or doing something physical. Venturing out is usually as strenuous as sitting at a restaurant table, but that's all I can accomplish. Saturdays are my errand days, but I can only manage about an hour before I'm wiped out and need to go home. As I said above, Fibro sucks.)
• On days when you feel GREAT (they're rare but precious) resist the urge to tackle big projects or go overboard trying to do the stuff you normally don't have energy for. You'll pay for it later.
• Many Fibro sufferers find their sleep is disrupted between 2:00 and 4:00 every morning. Like clockwork I'll find myself wide awake and completely unable to return to sleep. In order to compensate I find I have to go to bed earlier than I used to (and earlier than I want to) in order to compensate. I also take mild prescription muscle relaxants to try and get my body to relax quicker and fall asleep faster. For this reason...
• It's probably worthwhile to plan (2? 3?) days at a park followed by a hotel/pool day to sleep in and recover. It feels like a waste to spend a ton on a park admission and you only have the energy for two hours.
  
• Most of us feel that our Fibro pain jumps - one days my legs are killing me then another day my forearms feel like i'm holding 50 pound weights. (Because of this, on my next trip, I will likely rent a motorized scooter, especially for venues requiring long walks, like EPCOT World Showcase and Disney Springs. It's the uninterrupted walking that really kills me, especially when my Fibro pain is centered in my legs. I won't abuse the system, of course -- I'll wait in line like everyone else but I won't have to endure killer long walks into the parks and between attractions.)

I made my first post-diagnosis trip to WDW in October with a young family and delightfully found that the kids' frequent breaks for bathrooms and snacks worked well in my favor, and I could rest for a few minutes.. In my youth I would have been the girl going from park to park taking advantage of extra magic hours. I was always the first to volunteer to sit with the baby when he was napping so that the parents could go on rides. I was afraid that both going with little kids and going with Fibro was going to cramp my style and I wouldn't get to "do everything I wanted to do". In the end I maximized what I was physically able to do and was still wrapped up in the Disney Magic at the other times, so it was great.

Best of luck to you and your daughter.

 

[wendow]

Thank you, tamitra, for creating an account just to give me some advice. I appreciate it!

I am thankful for all the thoughts and ideas shared on this thread. We've only had the diagnosis a little over two weeks but she has been sick for going on a year. I'm trying to process this all and figure out how to help her. I want to make our Disney trip as good for her as it can be and I don't mind taking breaks...we like breaks really...We hit the parks early, leave after lunch and do not go back until the evening so hopefully that will still work ok for her.

I am also still just trying to figure out everyday life for her right now. We homeschool (always have) so that is a huge saving grace right now. But she was very active in various 15yo girl things like dance, theater, church activities, friends, sleepovers, babysitting, etc. Her life has been drastically changed. She's sad that she feels so bad and has had to drop so many things. Ugh, fibro does suck. It sucks big time.

 

[tamitra]

You're welcome, Wendow. My heart hurts for your girl. I know there are a lot tougher diseases and conditions out there - I'm not minimizing those - but it's really tough having an invisible illness. You look fine and you WANT to be able to do the things you've always done. There's a long period of adjustment realizing that you're not the person you were and can't do what you could easily do before. She'll cry and get frustrated. One of the best things you can do is just say "I know it sucks." Acknowledge her illness, her frustration and her limitations. That validation that something is actually wrong even though you can't see it means a lot. I send this picture to my coworkers when they ask me why I'm not smiling: https://www.pinterest.com/pin/500181102338257641/. The horrified look on their faces makes me feel better for a few seconds. I don't feel like that every day, but some days I do.

That being said, it's not a death sentence. It changes us, but it doesn't destroy us. She'll learn ways to cope, as you and the rest of her family will adapt. Appreciate the small wins and especially the days she feels great.

I've found Pinterest has helped me with my Fibro. I find support from other sufferers, articles about research and also great ways to explain the disease to non-sufferers. There's a lot of info out there but as I said in my previous post, not everything applies to every patient. So I try things out and keep what works.

You're both in my thoughts -
Tammy

 

[mamabunny]

Welcome Tammy!