Teenage daughter with fibro....

Hi, Kim, and welcome!  I am always sad when I hear of young people getting this illness.  They should be out enjoying their friends and having a great time at school.  But, your daughter will probably be able to do that once you find what works best for her.  We had a teen on here a few years ago that was soooo depressed and missed her "other" life.  We "Moms" on here guided her and she got help from her parents and her doctor and ended up doing very well.  She is now in college.  So, I think this really bad time will pass for your daughter.

 

Be sure to check out Fibro 101...the second thread on the forum.  There are links to good information about fibromyalgia and you will learn a lot there.

 

We do have flares...times when the pain is horrendous....and that causes more fatigue and it sounds like that's where she is right now.  Also, the stress of this illness can cause depression and more pain so it is like a vicious cycle. 

 

Everyone is different when it comes to fibromyalgia pain and the medications that they take.  I take ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 to help with pain and fatigue.  There are links about the supplements in Fibro 101.  They will explain how they work in the body.

It is very important that she keep moving.  I know the last thing you want to do when you are in pain is to move but, if you don't with fibro, you will be stiff as a board and you will have more pain.  There are some good stretching exercises in Fibro 101 that really do work.  Have her try these.  They can be done sitting down so, when she goes back to school, she can do these at her desk.  They aren't really noticable, either.  Also, she needs a gentle exercise plan to keep her moving.  For me, it's walking and swimming.  These both are wonderful for fibromites.  When I started walking, I could only go four houses down.  Now, I do a lot of walking, starting with a one mile walk with my dog every morning.  Some days I don't want to do it but I always feel better when I get home and I have more energy, too!  It's really worth it.

When she does things, she needs to pace herself.  She can still do much of what she did before fibro but it will take a little longer.  Her body will tell her how much she can do before it "screams" at her.  She will learn how to live with this illness.  We all do.

Moist heat is great for fibro.  Hot showers and baths feel so good.  Many have a Bed Buddy.  You can get these at Walgreens and other places or you can make one by taking a tube sock, filling it 2/3's full of raw long grain rice and tying a knot at the end.  Pop it in the microwave and it will give off moist heat due to the moisture in the rice.

 

A positive attitude is a huge benefit to have with fibromyalgia.  Have her start thinking of all the things she CAN do with fibro, instead of what she is having problems doing right now.  The negative thinking will just make her more miserable and she will hurt more, too.  She needs to know that she can have a full and enjoyable life in spite of fibromyalgia.  I know I have!  I've had fibro for decades.  When I was diagnosed, it was called fibrositis!  It hit me between the eyes one evening and I just learned how to deal with it.  Consequently, I've now done a lot of traveling in the world, I've stood on glaciers, I've snorkled and parasailed, and this past December I spent 9 hours walking through Disneyworld and even went down Splash Mountain!  I'm no spring chicken either.  I'm nearly 63 years old! 

 

I do believe that she will get there, too, once you find the right combination of medications that will give her control over the pain.  She will learn to be in control of fibro instead of fibro being in control of her!  We are here to help her, too.  It might be good for her to come on and ask questions, too.  We are very family friendly on this site.     

 

I hope I have answered some of the things that I'm sure are rolling around in your mind right now.  I can't wait to hear that she is doing better and is back at school with her friends.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you and from your daughter soon!

 

Sherrine

 

Hi Kim,

I also would like to welcome you to the forum. I know it must be hard for you to watch your daughter suffer with fibromyalgia. But I assure you that once she finds out what helps her she will have a fullfilling life. It does take a while and there are no miracle cures. Beware of that too. There are so many scams out there now that promise to cure you. And fibromyalgia has no cure.

Do check out fibro101 as Sherrine and Marlee have suggested. It is really an imformative thread. Also as was mentioned above, we did have a teen on the forum for a long time, she is doing good now and is in college. Also she has found programs to help her learn and deal with this disorder. I do email with her so I keep up with what she is going through. I know that fibrofog can be a problem, and they even have a pen that records your notes and your classes so that you don't forget. It is computer friendly.

I also think it would be a good idea if your daughter came on the forum and got some education first hand and realized that she is not alone with this. It is wonderful that you are participating by coming here and introducing youself. You will find that we all do understand and we all do care.

I hope that you have a wonderful day today.

Hugs, Karen

Kim, some doctors think that chronic fatigue and fibromyalgia are the same illnesses.  We all have the pain and the fatigue. 

 

Get your daughter on a sleep schedule.  If she goes to bed at the same time and gets up at the same time, her body will start to respond.  I'm in bed by 10 PM and I get up aroud 6:30 AM.  At her age, 10 PM would be a good time, too.  This way, she has 8 1/2 hours of rest.  With fibro, you usually have difficulty getting into the deep sleep (REM) and that's where the body starts healing itself.  We are all light sleepers.  For me, I have to have the television on to go to sleep.  I got in that habit years ago but I'm usually asleep within 15 minutes of lying down.

 

Another thing, she should not lay in bed all the time.  The bed should be just for sleeping.  I know that sounds weird but your body will respond.  I rarely take naps and if I'm really tired, I might lay down on the couch but never my bed.  That is for me to sleep at night.  Here is a link from the Mayo Clinic with suggestions on how to get a good night's sleep.  This is important for your daughter.

 

http://www.mayoclinic.com/health/sleep/HQ01387

 

Sherrine

 

 

Oh Sherrine - I also find that walking my dog first thing in the morning helps with all of my pain and stiffness, too. It usually takes me about a mile or a little more before I start to loosen up. We usually walk between 2 - 3.5 miles. I just find it so theraputic. Even when my RA first started and I was so crippled and swollen, I felt so good pushing to walk around a block that was about 1.5 miles. I jsut knew for me at the time it was a huge accomplishment. Well, two years later I am doing much better and can do just about anything. However, the stress of my daughter's situation (with the school mostly) is catching up with me. I am so exhausted again (and we just had a weeks vacation). I just want to get her setup so she can get homeschooling and try to get her caught up with the whole year she has missed. She used to be a high honors student. I don't know what she will be able to handle now, but starting would be a step in the right direction! Happy dog walks to you!

Kim

Kim,

Know that finding the right protocol for her could take some time, so be patient with this. A lot of us find we have more energy in the wee hours. I don't know why that is, but to me I think it is because at that time of the night, there are no demands on a person and it takes that stress off. For me I think it is a psychological thing. Because nothing is expected of me at that time of the night (morning) I am more relaxed. Where during the day, there are more things to stress me out. But for some reason our clocks get off whack and we are up at night and sleep during the day, though I have been getting up rather early and sleeping earlier since I have been on a leave of absence from work. I worked second shift and was always up late, but I can't get going in the morning so second shift is easier for me.

I will email Christi (Tennis) and see if she has time to come on the forum so that she can chat with you and tell you what she went through. She has also suffered with depression which often happens with fibromyalgia. Especially for a teen who isn't able to keep up with the usual things that they were use to doing. I am sure that there were a lot of things that they are helping her with, even being more flexible with her courses. But it is nice to know that there are programs out there to help us.

I have had to take medications for my fibromyalgia, but I also take the malic acid, vitamin D3 and calcium to go with. And they have helped me a lot. Most fibromites are low in vitamin D3. I find when I take it, I feel better all around. It is a matter of keeping it in my system. I take so many medications that I tend to over look the supplements. I am (though I am on a leave of absence) now working where I didn't for 7 years. It is a part time job, but better than what I was able to do. I spent two years in bed from fibromyalgia. I am not saying in the slightest that is what your daughter will do. It effects all of us differently. But once I got on the proper medications, I have been doing much better. Though not all will need medications, everybody is different. I know that you want to see fast results, but it will take some time to find what is right for your daughter as far as getting stronger and more energy. That is the worst part for me. I can handle some pain, but I can't handle the fatigue. I do take adderall for that and it keeps me awake during the day. Otherwise I would sleep all day. There are other medications and supplements for energy. And once she gets her energy level up, then exercise alone will help. It is like we need a jump start to get going. But once you get your body on track and feel what it needs, it is smoother sailing. I hope that your daughter feels better soon. It sounds like you are getting a grip on it and now that you know what you are up against, you will know what to do.

Best wishes to you.

Hugs, Karen

Everyone has given you great advice and I hope it helps. Two things jumped out at me, though. I have never in my entire life gone to sleep at 10 when I go to bed. My family were early risers, so I was forced out of bed early for MANY years. I am now 54 and because my children are gone and I don't have a job, I can finally for the first time in my life sleep the hours my body wants to --1am-10:30 am. Many people don't believe this is OK or right, they still think I should be up at 7 am. My sleep dr. says that my way is actually healthier and he agreed after my sleep study that I am a true night owl, and there aren't too many of us.

Also, my father was very crippled by RA, had many joint replacements, took lots of experimental meds before he died in 02. I've had fibro for 26 years and many of those years, I was in much worse shape than my dad. He had fatigue caused by sleep apnea, but never as much fatigue as I have everyday. Also I was in a lot more pain, even though my joints are not misshapen.

I feel so sorry for your daughter, because my teen years were the best of my life. I got fibro at 28. It has gradually gotten worse and worse, and I am among the few who don't have remissions. Good luck finding a treatment that works for her. Diane

Diane - thank you for your input. Like you my daughter is more of a night owl than anyone else in our family. From the day she was born she has always come alive around 7 pm. Thankfully, it has never been a problem her getting up at 6 am. But now that is all different. I can't let her sleep in, but I do try to get her up around 8 am. However, that hasn't been working too well lately. She was so awake last night at midnight. I am not sure when she finally fell asleep. Even though you have had a terrible time with fibro I am glad that you didn't get RA on top of that. No one else in my family has RA but me (well, my grandmother's brother had it real bad.) We are very sad that this will effect her teenage years so much, but hope that her strong spirit will prevail.

Thanks Austen - I hope my daughter responds like you did. Its good to know about someone else that had low ferritin levels and anemia.

Karen - That had to be really tough having to spend two years in bed. I am aware that some people are bedridden for some time. I am hoping that won't be the case for my daughter. I hope that when we get her ferritin level up to where it should be that will help alot. Time will tell. We could be alot more patient if we could get her schooling issues under control. We have a PPT tomorrow and hope that they won't challenge us and provide the necessary tutoring to try to get her caught up. She has missed most of the year. If we could have afternoon tutoring then I know she would be able to do her homework late at night. (Except for the times she is severly crippled with headaches. (Thankfully, even though she always has a headache, most are manageable.) I hope I don't have to continue to try to fit a square peg into a round hole much longer!!! Wish me luck at the PPT tomorrow! Thanks, too for e-mailing Christi.

Sherrine - thank you to for e-mailing Christi. I live in Connecticut and got to enjoy a nice milder walk this morning with my dog. Hope you got your walk in as well.

Kim

Actually Sherrine got ahold of Christi before I could. But I knew she would come to help you. She is a wonderful person and can give your daughter a lot of advice.

I think that in time you will find a plan that fits for her. Even if she does become a night owl, maybe the school can work something out so that she can come in later in the day. Right now, I think she needs to do what is right for her, and eventually this will all work out. The schools have a way of making exceptions for disabled students. I am sure that Christi will give you some resources that she has learned about to help you.

Wishing you and your daughter a wonderful painfree day.

Hugs, Karen

hi. i just saw this, as i haven't been on alot this week, since i've been so busy at school. I'm 20 and a sophomore in college. I got fibro when i was 11. One thing that helped alot, which i didn't do for a while, was to find other people my age with fibro. I didn't know anyone in my area, but I found people from sites online (like this one), and we would talk online with each other. Facebook is good for this, if your daughter has one.

Maybe she can go onto this forum. I know its nice to hear from other people that you aren't the only one that something is happening too.

For sleep, I don't sleep well at all either. I have trouble falling asleep and staying asleep. I did an overnight sleep study test at the hospital, and they found out that something was wrong with my beta or alpha waves (i don't remember which one), and that I don't really go into REM sleep at all. They did offer me sleep meds (like ambien cr or lunesta). I chose not to take them, because I didn't want to get attached to them, but its nice knowing why you don't sleep. If you want something to help her sleep, then a sleep study might help (my rheumy sent me for it).

also, like christi, there are alot of accommodations that you can get for school. I still get them in college, and i don't know what i would do without them! I did go to school, but i also missed alot.

its interesting that she got fibro right after the flu. I had mono, and then i got fibro right after that.

its nice to meet you

-Aliza

Hi Aliza and Karen and everyone else! Aliza, it is so nice to meet you. Thanks for introducing yourself to me. We had our PPT yesterday with the school. It was 10 of them against 3 of us. I could have screamed in there! After our new pediatrician suspected fibro and 2 well respected doctors diagnosed her with Fibro, the school is still challenging us. Part of that problem goes to the first doctor who beleives fibro is all in your head! She has been accused of anxiety, school phobia, school refusal, a somatoform disorder, and social/emotional issues. It just doesn't end. She has an outstanding school record (high honors) and involved in various activities and loved to go out socially with firends to dances, etc. She got sick when school first started (just like my son and husband). I will say our lawyer grabbed my arm at one point to calm me down. The stress of this situation is killing both my husband and myself. He woke up this morning with a really bad headache and the shakes. OUr school district has a real budget crisis and will probably have to layoff lots of teachers, so they certainly don't want to have to pay for a tutor. They think she will get better in a couple of weeks! It appears they just want to label her as some mental case and drug her. I no longer discuss what meds she is on with the school. They want to be able to talk to her doctor (but that got us in trouble last time since she believed fibro/cfids is all in your head. anyway, we do have a tutor for two classes for the next 6 weeks. There isn't any real plan to get her caught up. She is still being punished for getting sick. Thankfully I love our new doctor - he understands. I also have the support of the woman that is head of the CT CFIDS and Fibro organization. I jsut want the school to accept the diagnosis and move on to educating my daughter until she can get back into school. There are some people that are bedridden or housebound for years. We are jsut starting treatment and need sometime to see if we can find something that helps. I'm glad that winter is coming to an end and spring is around the corner. IT all helps. Thank you all for your support.

Kim

Kim, it seems to me that these educators need some education about fibromyalgia.  These links just might help.  This link is in the Fibro 101 thread.  Perhaps this could help you convince the school system.  Also, fibromyalgia is recognized by the National Institute of Health, the American College of Rheumatology, the American Medical Association,  and Social Security!  Here is the first link.

 

http://www.fmnetnews.com/basics-news-archives-respond.php

Here is the link from the American College of Rheumatology

 

http://www.nfra.net/Diagnost.htm

Sherrine

kim, I am majoring in special education. i am in a 5 year program, so i come out with a masters. It does get hard, but I just love spending time with kids with special needs. Just seeing them so happy all the time, helps me forget about the pain for a bit.

good luck with everything!!

-Aliza