Teen with Fibromyalgia

[bopper]

I don't know anything, but:

Focus on what she can do, not what she can't. "Oh this will be relaxing since we won't be go go going this trip."
Prioritize what rides/activities she wants.
Definitely rent a wheelchair....if she complains then tell her "The choice here is one day w/o a wheelchair and then you are too wiped out to do much else, or nicely paced days in a wheelchair that you can do all week."
She will probably feel like she can do more the first day than she should...you don't want her to use up all her "Spoons" in one day.
Also do a couple of park days then a rest day...that is what our family does and we don't have any mobility issues.
Not sure if heat/sunburn/dehydration exacerbate Fibro, so keep her hydrated and cool.

 

[luvdisdogs]

I have Fibro. I'm not a teenager but hope some of this helps. Try to limit sugar intake. Sit down and rest whenever she needs to. Hydration is key. Fast passes are IMPORTANT so she doesn't have to stand in line too long. I have never rented a wheelchair or use any device to get around but it is a good idea. I use to go,go,go but I have now figured out my limits and know when I need to rest. A nice Disney hat is nice to wear so no sun on head or face. I could go on and on. I have done all the rides with no real problems. I try to do shows between rides if possible.

I'm so sorry to hear that she has this. I don't wish this awful syndrome on anyone. I take it day by day. Kept a food journal for a few months to see if any foods made me feel worse. Low impact exercise and stretching are very important. I'm so glad I took the class at Mayo Clinic it helped me a lot.

 

[Lambiebell]

I was diagnosed when I was 14. That was a little over 17 years ago.
My best advice would be to just listen to her and take her seriously if she says she needs a break.
That can mean needing to be done or go back to the room for a while, but it could also just mean it's time for one of those longer sit down rides or shows.
Having a sit-down meal (even if it's a counter service that you *plan* to spend a specific amount of time relaxing with your food) each day can be a big help too! And can also take some pressure off so she doesn't necessarily feel like she is holding everyone back, or so that it's still something that everyone gets to "do" but that is good and healthy for her to get to regroup herself.
But seriously... as a someone who was a teen with FM (and even now that I'm in my 30s), I would say the best thing you can do is to listen to her. Let her know that you hear her when she needs to slow down, or to stop, or to sit down. Make sure the family is prepared to not put pressure on her to "push through it" because if she does that one day, she may not be able to do anything the next day! When you are dealing with FM, the pain and fatigue is bad enough, but when you feel like you're holding back the people you love from doing the things they want to do-- that can be really hard! So the more you can plan breaks into the day, the easier it can be on her emotionally (which will help keep her a bit more together physically).

oh... and make sure you are ALL drinking plenty of water. If she drinks enough water each day that can help keep flares at bay (and if you are ALL drinking water then it's not about her).
And definitely do NOT rent a wheelchair unless she makes that decision. If you want her to be able to enjoy the trip, then you have to let her make the decision if she will spend it in a wheelchair or not. And if she decides that she doesn't want to be in a wheelchair recognize that moving can often help relieve some FM symptoms and that for her the decision not to be in the wheelchair may be an emotional one.... so, if she chooses not to be in a wheelchair, don't punish her for it if she gets tired or achy in the parks with any "you could have" or "I told you so" because those stressors will make the pains flare further.

 

[wendow]

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

Oh Tammy, that picture breaks my heart. My dd does use Pinterest so I will share some of these with her. Thank you!

 

[wendow]

I was diagnosed when I was 14. That was a little over 17 years ago.
My best advice would be to just listen to her and take her seriously if she says she needs a break.
That can mean needing to be done or go back to the room for a while, but it could also just mean it's time for one of those longer sit down rides or shows.
Having a sit-down meal (even if it's a counter service that you *plan* to spend a specific amount of time relaxing with your food) each day can be a big help too! And can also take some pressure off so she doesn't necessarily feel like she is holding everyone back, or so that it's still something that everyone gets to "do" but that is good and healthy for her to get to regroup herself.
But seriously... as a someone who was a teen with FM (and even now that I'm in my 30s), I would say the best thing you can do is to listen to her. Let her know that you hear her when she needs to slow down, or to stop, or to sit down. Make sure the family is prepared to not put pressure on her to "push through it" because if she does that one day, she may not be able to do anything the next day! When you are dealing with FM, the pain and fatigue is bad enough, but when you feel like you're holding back the people you love from doing the things they want to do-- that can be really hard! So the more you can plan breaks into the day, the easier it can be on her emotionally (which will help keep her a bit more together physically).

oh... and make sure you are ALL drinking plenty of water. If she drinks enough water each day that can help keep flares at bay (and if you are ALL drinking water then it's not about her).
And definitely do NOT rent a wheelchair unless she makes that decision. If you want her to be able to enjoy the trip, then you have to let her make the decision if she will spend it in a wheelchair or not. And if she decides that she doesn't want to be in a wheelchair recognize that moving can often help relieve some FM symptoms and that for her the decision not to be in the wheelchair may be an emotional one.... so, if she chooses not to be in a wheelchair, don't punish her for it if she gets tired or achy in the parks with any "you could have" or "I told you so" because those stressors will make the pains flare further.

You have given me lots of good info here and in PM. Thank you! I know without any hesitation that my dd will need to use a wheelchair. But getting her to realize that and be ok with it is going to be a challenge. But I agree with you, it has to be her choice and decision.

 

[wendow]

@Lambiebell , I notice you are gluten free. Have you found that helps your fibro symptoms?

 

[Lambiebell]

@Lambiebell , I notice you are gluten free. Have you found that helps your fibro symptoms?

Yes, I just started that recently and it is helping greatly. It also is helpful because of what my blood type is. I recommend if you do not have access to a nutritionist, at least researching the suggestions for what your daughter's blood type is as those things may make much more of a difference for her as someone with FM than the average person. It is more because of my blood type that it is helpful than because of the FM, I think... and because FM makes me more sensitive to everything and my blood type makes me more gluten sensitive, that combination, well, you know.

 

[Floridadreaming2016]

My 18 year old DS hasn't been to Disney since his AMPS diagnosis and I am worried. My DH has MD and is in a wheelchair but i understand it. I can handle that the pain syndrome is kicking our butts. He has type 1 diabetes too he can't do the traditional program the hospital has. He also has Aspergers so his diet is already limited. Nothing helps his pain. Disney will be a welcome break. Any advice as to how you all deal with pain syndrome is appreciated.

 

[Lambiebell]

My 18 year old DS hasn't been to Disney since his AMPS diagnosis and I am worried. My DH has MD and is in a wheelchair but i understand it. I can handle that the pain syndrome is kicking our butts. He has type 1 diabetes too he can't do the traditional program the hospital has. He also has Aspergers so his diet is already limited. Nothing helps his pain. Disney will be a welcome break. Any advice as to how you all deal with pain syndrome is appreciated.

Make sure everyone is drinking plenty of water. Plan a mid-day break each day (whether it's back to the hotel for a nap or just a planned sit down meal or longer ride/show). And know that Disney is one of the best places for limited diets. Every one of the restaurants (including counter service) has an allergy menu that can tell you what things can help for restrictions. And most places have traditional kids meals for a pickier eater.

Two personal points of reference--
All the places that sell cups of soda will give you cups of water or ice water for free, so you don't have to spend money on those crazy expensive water bottles or worry about carry one around all over the place with everything else you need for the day, too.
And the gluten free kids mac and cheese is one of this grown-up's favorite things in the whole wide Disney world. It's like Disney magic.

 

[Floridadreaming2016]

Make sure everyone is drinking plenty of water. Plan a mid-day break each day (whether it's back to the hotel for a nap or just a planned sit down meal or longer ride/show). And know that Disney is one of the best places for limited diets. Every one of the restaurants (including counter service) has an allergy menu that can tell you what things can help for restrictions. And most places have traditional kids meals for a pickier eater.

Two personal points of reference--
All the places that sell cups of soda will give you cups of water or ice water for free, so you don't have to spend money on those crazy expensive water bottles or worry about carry one around all over the place with everything else you need for the day, too.
And the gluten free kids mac and cheese is one of this grown-up's favorite things in the whole wide Disney world. It's like Disney magic.

Make sure everyone is drinking plenty of water. Plan a mid-day break each day (whether it's back to the hotel for a nap or just a planned sit down meal or longer ride/show). And know that Disney is one of the best places for limited diets. Every one of the restaurants (including counter service) has an allergy menu that can tell you what things can help for restrictions. And most places have traditional kids meals for a pickier eater.

Two personal points of reference--
All the places that sell cups of soda will give you cups of water or ice water for free, so you don't have to spend money on those crazy expensive water bottles or worry about carry one around all over the place with everything else you need for the day, too.
And the gluten free kids mac and cheese is one of this grown-up's favorite things in the whole wide Disney world. It's like Disney magic.

Make sure everyone is drinking plenty of water. Plan a mid-day break each day (whether it's back to the hotel for a nap or just a planned sit down meal or longer ride/show). And know that Disney is one of the best places for limited diets. Every one of the restaurants (including counter service) has an allergy menu that can tell you what things can help for restrictions. And most places have traditional kids meals for a pickier eater.

Two personal points of reference--
All the places that sell cups of soda will give you cups of water or ice water for free, so you don't have to spend money on those crazy expensive water bottles or worry about carry one around all over the place with everything else you need for the day, too.
And the gluten free kids mac and cheese is one of this grown-up's favorite things in the whole wide Disney world. It's like Disney magic.

Thank you

 

[wendow]

My 18 year old DS hasn't been to Disney since his AMPS diagnosis and I am worried. My DH has MD and is in a wheelchair but i understand it. I can handle that the pain syndrome is kicking our butts. He has type 1 diabetes too he can't do the traditional program the hospital has. He also has Aspergers so his diet is already limited. Nothing helps his pain. Disney will be a welcome break. Any advice as to how you all deal with pain syndrome is appreciated.

What is AMPS? I am so sorry for all that your DS is going through. Watching my dd go through this has broken my heart beyond anything I know at this point. I am worried about our trip too. My dd cannot walk through the park and a wheelchair will be helpful. But she cannot stand for very long either...lots of muscle weakness mainly in her legs...so *that* is what is worrying me most.

 

[Floridadreaming2016]

What is AMPS? I am so sorry for all that your DS is going through. Watching my dd go through this has broken my heart beyond anything I know at this point. I am worried about our trip too. My dd cannot walk through the park and a wheelchair will be helpful. But she cannot stand for very long either...lots of muscle weakness mainly in her legs...so *that* is what is worrying me most.

AMPS is amplified pain. Extreme pain in limbs. He will not use a mobility device ever. It will be a challenge to meet his needs and my DH wants. This trip is a wish trip for my DH. He doesn't have long to live.

 

[wendow]

AMPS is amplified pain. Extreme pain in limbs. He will not use a mobility device ever. It will be a challenge to meet his needs and my DH wants. This trip is a wish trip for my DH. He doesn't have long to live.

THank you for explaining. I am so very sorry about your ds.

 

[pktbMouse]

I am at a loss to why the doctor does not have your child on Lyrica, Gabapentin or Cymbalta...Fybro is nothing to do with inflammation...its a neurological disorder that makes your brain THINK you have inflammation... and therefor feel pain. cutting sugar and gluten does nothing at all for fybro, that was proven many moons ago. I feel awful for your daughter dealing with this but you have to manage the pain not mask it. Hopefully you can get her to a good neurologist that can help. Meantime, good advice has been given here as to taking it easy, good nights sleep ( perhaps something to help her sleep ) and as least stress as possible. Its all to do with how the central nervous system(brain and spinalcord)processes pain. This is why pain relievers such as Tylenol and Anti Inflammatory meds rarely work . Good luck to you

 

[wendow]

I am at a loss to why the doctor does not have your child on Lyrica, Gabapentin or Cymbalta...Fybro is nothing to do with inflammation...its a neurological disorder that makes your brain THINK you have inflammation... and therefor feel pain. cutting sugar and gluten does nothing at all for fybro, that was proven many moons ago. I feel awful for your daughter dealing with this but you have to manage the pain not mask it. Hopefully you can get her to a good neurologist that can help. Meantime, good advice has been given here as to taking it easy, good nights sleep ( perhaps something to help her sleep ) and as least stress as possible. Its all to do with how the central nervous system(brain and spinalcord)processes pain. This is why pain relievers such as Tylenol and Anti Inflammatory meds rarely work . Good luck to you

Our doctor said she didn't want to be 'aggressive' with meds for a 15yo...she said lifestyle changes would be best right now...But my dd is having a very difficult time with the pain and I am completely unsure what to do. Are the meds you mention safe for a teen? I keep reading online that most of the meds used to treat fibro are not well-studied in juveniles so many docs are hesitant to prescribe. I think that is what we are dealing with.

My dd was started on Nortriptyline about a week ago. So far, I would say it's not really helped...not with sleep, not with her pain.

 

[mamabunny]

Our doctor said she didn't want to be 'aggressive' with meds for a 15yo...she said lifestyle changes would be best right now...But my dd is having a very difficult time with the pain and I am completely unsure what to do. Are the meds you mention safe for a teen? I keep reading online that most of the meds used to treat fibro are not well-studied in juveniles so many docs are hesitant to prescribe. I think that is what we are dealing with.

My dd was started on Nortriptyline about a week ago. So far, I would say it's not really helped...not with sleep, not with her pain.

This is what we dealt with. Most doctors (the ones who actually *recognize* fibro as a "thing") won't prescribe those drugs to a teen. When our daughter turned 18, we talked to her doctor again, and she was VERY hesitant - she really wanted Babybunny to wait until she was at least 21.

It really is horrifying to see your child in pain, and to feel so helpless. When it comes to fibro, adults have options. Children/teens have... very very little, other than the pain.

@wendow, I hope with all my heart that she finds some respite soon

 

[wendow]

@mamabunny , Thank you. It's hard b/c I tend to take a more natural approach and reach for herbs and vitamins. But I believe there is a time and a place for prescription meds and if you are in pain, you need relief. No one can be expected to live that way if there is something that might could help. I'm thinking we will be looking for a new doctor.

 

[hsmamato2]

I am at a loss to why the doctor does not have your child on Lyrica, Gabapentin or Cymbalta...cutting sugar and gluten does nothing at all for fybro, that was proven many moons ago. Hopefully you can get her to a good neurologist that can help. Meantime, good advice has been given here as to taking it easy, good nights sleep ( perhaps something to help her sleep ) and as least stress as possible.

***There is no 'one cure-all' for any of this,if there were, we would all have a simple one size fits all answer,and we DON'T.***
I think everyone here (myself included) have only the best intentions when sharing our own personal stories.... but I do think that 'blanket advice' about what will and won't help each person is highly individualized..... to OP and anyone else reading here, your best advice here is to find info that means something to you (and daughter) and learn as much as you can about different avenues to help her. I have a friend who takes Lyrica (or something like it) and it seems to help,she is continuing. For myself, my illness seems to have a lot to do with what I eat. (among other things)
I don't take any prescription meds, but a diet and lifestyle change is what seems to make the most difference for me in how I feel every day.(Sugar is a very bad thing for my body) That's a why a thread, with differing life stories and experiences,can be helpful... For most of us, it's a trial and error sort of process to feeling better.....
One thing I do know... A trip to Disney is one of the best places to vacation,when you don't 'feel well'..... I honestly feel like it levels the playing field for enjoyment for many different people and their needs.....

 

[StilAPrincessAtHeart]

So sorry that your daughter has to deal with this at such a young age. I was diagnosed 3 years ago at age 36 and it has changed my life. I was a bit in denial and pushed myself instead of learning how to rest when I needed it. I am now finally figuring that out. I also deal with dysautonomia and chronic fatigue.

Lots of great advice given already, but wanted to share a few more practical suggestions.

-If possible, do one "On" day at a park and then one "Off" day resting at the pool etc... This saved me last year at Disneyland/CA. I was very scared since it was my first trip since becoming ill. It helped so much. A whole day of relaxing fun in between was just enough to help me get going again for days 2 and 3 in the park.

-Encourage her to take a short rest in the first aid station if she starts to feel overwhelmed. I did not know this was an option til others suggested it here, but I will use it on my next trip.

-For sleeping, bring ear plugs for blocking out late night guests coming back to the hotel at night. And, encourage her to not have caffeine in the evenings. That's so hard to do on vacation, but getting the best sleep she can will help tremendously.

One more tidbit from my own everyday sleep experience. I too had a sleep study done only to find no snoring, apnea, etc... But, my Primary Physician actually figured out that I had restless leg syndrome which is common in fibro. That may be something worth looking into. There are some medications that are waaaay safer than sleep aids that can help. I actually take gabapentin for pain/neuro issues and that also helps with the RLS. But, there are other meds that may be safe for teens.

I wish your teen the best of luck. And, hope you all have a good trip.

 

[wendow]

Thank you all for the helpful responses. The Nortriptyline has done absolutely nothing. We go back to the doctor this Friday so I plan to tell her we are stopping that.

What has provided some relief is Flexeril. The doc actually mentioned it for helping with my dd's sleep at the appt she was first diagnosed at. But then, we kind of got off that and then at a later date she prescribed the Nortriptyline. Well, I happened to mention to my dh about the Flexeril, which he has and occasionally will take for a headache. Our dd's pain as been so bad and she's not been sleeping well so in desperation, we cut a Flexeril in half and gave it to her. The next day was amazing. She seemed much better. Gave her one that night and again, good day the next day. It's been like 4 'good' days now. SHe still has pain, is still dizzy and gets fatigued easily but this is the best she has been in months. She will still need a wheelchair at WDW but if she stays like this, I am more encouraged about us still going. I'd been wondering if we should just cancel for now.

Anyways, just thought I would share about that. I am looking for another doc who will have a little more of an open mind and maybe be willing to consider some meds that have been recommended to me.