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14 yr with fibromyalgia

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Posted 7/14/2010 8:33 PM (GMT 0)
My daughter has been diagnosed with fibromyalgia . I have seen the symptoms progress over the lsat few years and she is in rough shape now. Any parents out there who have experienced their child having this? Perhaps you know someone you can pass this request on to. Any support would be appreciated, thanks.....
Posted 7/14/2010 8:46 PM (GMT 0)
confused  oh my. This breaks my heart so bad so so young.I no if i would have had this at 14 i would have lost so much of my life   Read fibro 101 there are a lot of good people on this site that can give a lot of info and support  oh GOD BLEES YOU sonny boy
Posted 7/14/2010 9:25 PM (GMT 0)
perlygates, Welcome to our forum! My heart always goes out to young people with
fibro. As a mother it must be so difficult to watch your daughter suffer. There are
mothers on our forum who come to get information to help their children.

Do check out fibro 101, second thread, first page...Sherrine has compiled a wonderful
resource of great info on fibromyalgia.

I have found for myself that exercise really helps even when I'm flaring and hurting.
If I don't exercise I hurt all the more. It is important to keep the muscles moving,
inactivity is the worst thing for fibro. Heat is the fibromites friend. If you haven't
already...invest in the microwave rice heating pads...or you can make your own using
tube socks and filling them with rice. Encourage hot baths or long hot showers.

My doctor has prescibed Savella and a muscle relaxer Flexeril ( cyclobenzaprine).
We all tolerate meds differantly and you will see we take many differant med combos
to help. I'm glad that you have found us. Post often with any concerns or questions.
There are many caring and understanding people here that are willing to help!

hugs, Robin
Posted 7/14/2010 11:37 PM (GMT 0)
My appreciation Robin , for your gracious reply. I will look at the info you suggested and take what you have suggested to heart. I'm sure I will have questions. Meanwhile I do hope to hear from parents in my circumstance. Hugs back to you - Leslie
Posted 7/15/2010 10:24 PM (GMT 0)
Hi Perlygates - I am so sorry that your daughter has fibro. I am the mother of a now 15 year old daughter who has fibromyalgia, chronic fatigue syndrome, and POTS (postural orthostatic tachycardia syndrome). She also has a very low ferritin level for which she takes iron supplements 3 x day. She takes Lyrica for the fibro which has helped alot. She still has pain but its a level 3 usually as opposed to 7 or 8. My daughter got all of this following what was probably the H1N1 flu back in the beginning of Sept. 09. She had just started 9th grade. She has been more or less homebound. Exhausted and has sleep issues. It has been one very stressful year for us. If I can answer any questions for you let me know. However, we don't have it all figured out either. Hope your daughter feels better.

Kim
Posted 7/15/2010 10:33 PM (GMT 0)
Dear Kim, I am so sorry about your daughter too. Mine has so many symptoms it is overwhelming, but so far, keeps going. (on will alone I think) Nights are the hardest, and it is quite sad for me to see this distress, as I am sure it is for you. We are at least happy to have a bit of sleep relief with the trazadone, which usually, but not always, works. I suspect Lyrica is next. She starts high school in the fall and is such a hard worker that I think the stress of that will be another challenge. Does your daughter talk to her friends about it? My child does not like people to know. Has there been anything else you have found that is helpful besides the meds? many thanks...Leslie
Posted 7/15/2010 11:42 PM (GMT 0)
Sorry Leslie - I just did a very long reply and lost it!!! I will write again later with more.

Kim
Posted 7/16/2010 2:20 AM (GMT 0)
Hi, Perlygates, and welcome!  It has to be so hard to see your child hurt like this but we have had several teens on this forum in the past and now they are doing quite well.  One is in college now.  We are family friendly here so your daughter might like to come on, too, and read and ask questions.  You have to be 13 years old in order to post on HealingWell.

 

We have several people, including another mod, that has had fibro since they were small children...younger than your daughter.  You do need to have her keep moving.  I know it hurts but she will hurt more if she sits or lays too long.  You get sooo stiff that way.  The more she moves, the more flexible she will be and she should have less pain.  A gentle form of exercise would be good for her.  I walk and swim as my exercise.  When I lived up north, I would use a walking in place video when the weather was too bad to get outside.  I used ones by Leslie Sansone that were good but I'm sure there are others out there.

 

I wrote on another of your threads about some supplements I take and they have helped me a lot.  I also use ibuprofen with food and extra strength Tylenol to help be in control of the pain.  Notice I didn't say I was pain-free.  Pain goes hand-in-hand with fibro but, once she finds what works best for her to help be in control of the pain, then she will get her life back on track.  The problem is, what works for one doesn't necessarily work for another.  This is why fibro is a challenge for doctors.  But, she will find what works for her.  For me, I like to go with less medication and use supplements and exercise to help me. 

 

I've had fibro for 23 years and have had a full and enjoyable life in spite of it.  She needs to be in control of fibro...not fibro being in control of her.  Let her know she has a wonderful life ahead of her.  I've done many things with fibro, including walking on a glacier and parasailing.  A good positive attitude and a good sense of humor go a long way with this illness. too.  Right now I'm sure she is depressed with this situation but once she gets a handle on the pain, she will be fine.  She will learn how to work around fibro to do the things she wants to do.  

 

I'm so glad you found us and joined in.  I hope to hear more from you soon.

 

Sherrine 

Posted 7/16/2010 2:58 AM (GMT 0)
Thanks Sherrine for sharing your experience with me., and for the welcome. We have had no luck with nsaids and will be seeing a new doc on tues who may have other ideas. My daughter does not like talking about this with anyone but me , but at least she is talking to me. She will be starting high school in the fall and would like to take dance classes. (can't get her to swim and her feet are in bad shape, partially due to fm, part to planter fac. and part because they are constructed poorly.) I do appreciaate all the help and support. It is so hard to watch her in distress. Leslie
Posted 7/16/2010 3:01 AM (GMT 0)
I had plantar faciitis really bad in both feet and started wearing Birkenstock shoes and, after several months, the pain left.  I haven't had the problem since and it's been 16 years.  I wear Birkenstock shoes all of the time. 

 

With ibuprofen, I have to take 600 mg. at a time for it to work for me.  The 400 mg did nothing for me. 

 

Sherrine

Posted 7/16/2010 12:15 PM (GMT 0)
Good morning Leslie - my daughters friends know about her illnesses but I don't think they discuss it often. My daughter will read info on what she has if I have it up on the screen or print it, but she won't research it herself or reach out to others with this stuff. I think its hard to accept this and you always want your health / previous life back. We definitely have our ups and downs. Sometimes she gets very frustrated with being so exhausted all the time and not being able to do much. I am thankful for texting! That has allowed her to stay in touch with her friends. When she was at her worst she didn't do much texting. I totally believe in exercise. However, our doctor only allowed her 5 minutes of exercise each day for two weeks. If that went ok then she was allowed to increase it by another 5 minutes for two weeks, etc. If she did too much too soon she would end up back in bed for days. We still struggle with this. She is able to bike ride. That's easier than walking for her (due to POTS). She does yoga/pilates many nights before bed. She says that helps alot. So, just be careful with the exercise. We had and still do have alot of trouble with our high school. I hope you have things in place and your daughter has a good freshman year. Is her energy level ok?

Kim
Posted 7/16/2010 3:13 PM (GMT 0)
My daughter was diagnosed when she was 12, she is 24 now. Been a very long lonely road. Do whatever you can to keep her connected with the outside world and be her best advocate.
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