Teenage daughter with fibro....

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pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 3/1/2010 7:56 AM (GMT -7)   
Hi, I am new here.  I don't have fibromyalgia but my daughter (age 14 and a freshman in high school) does.  She also has a very low ferritin level and POTS.  She has been sick since the beginning of Sept. but she jsut got diagnosed the beginning of February.  She isn't able to go to school.  We have a PPT on Wednesday with hopes of getting home tutoring.  She just seems to be in alot of pain and exhausted.  Sleep issues which I know are common.  I would love to hear from other teens with this or others that were so debilitated in the beginning and stories of how it did improve.  I do understand some of this because I have rheumatoid arthritis.  Looking for lots of support and understanding.  Thanks.
 
Kim

Sherrine
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Date Joined Apr 2005
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   Posted 3/1/2010 8:54 AM (GMT -7)   
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
 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 3/1/2010 12:16 PM (GMT -7)   
Hi Kim and welcome. It is heart breaking to read where somone so young has fibro or any debilitating disorder. All of our teens seem to have disappeared but that is a good thing, maybe they are out enjoying life. We still have some very young people in college on the forum so hopefully your daughter will join us and bond with them.
 
I'm sure as a mother you feel helpless when your daughter is suffering. I hope some of the things that help us like heat and stretching, that has been mentioned, will help her. Fatigue is my biggest problem so I haven't tried lyrica or the other new meds out for fibro, that's my personal choice to take as few meds as possible for fibro but it doesn't work for everyone. It really is all trial and error to find what works for each person.
 
luv and hugs
Marlee
 
 
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getting by
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Date Joined Sep 2007
Total Posts : 40573
   Posted 3/1/2010 1:02 PM (GMT -7)   
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
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 3/1/2010 1:14 PM (GMT -7)   
Thanks Sherrine and Marlee - do you know if many people are this debilatated (especially in the beggining)? Her doctor said she has symptoms of both fibromyalgia and chronic fatigue syndrome, but I am not sure was his written diagnosis will actually be. I know he will definitely go with fibromyalgia (not sure about the CFS). I do know that her ferritin level is at 10 and she is now taking iron supplements 3 x day with vitamin C. Marlee, I feel like you do with medicines, I hate giving them to my daughter. The problem is that she can't do anything right now and I have to deal with our school system. (Hired a lawyer to help out there.) She doesn't usually fall asleep until somewhere between midnight and 2 am. I get her up by 8 am or a little after. Its a long battle. Do most people have this much trouble getting up and getting going? I understand the whole trial and error part. That's how it is with my RA. I hardly ever took tylenol or anything like that. I never drank coffee until I turned 44 years old and was so desparate for help with the fatigue I was going through with the RA. Thanks for any info you can share.

Kim

Sherrine
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Date Joined Apr 2005
Total Posts : 17094
   Posted 3/1/2010 1:48 PM (GMT -7)   
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.
 
 
Sherrine
 
 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 3/1/2010 2:37 PM (GMT -7)   
Hi Karen - thanks for the info. If you are aware of anything else that might help out in the education area, will you lwt me know. There are definite times when she can't retain anything she reads and she can't concentrate. She always has a headache, but when it is really bad, she can't function at all. Sometimes she is light sensitive and wears sunglasses indoors. At times she is sound sensitive. I do hope that the iron will get her ferritin level back up and help with the fatigue. That is supposed to take many months to get it back up. Do you know if the girl in college was housebound at all in her high school years or was she always able to attend school? Thanks for your support and warm welcome.

Hi again Sherrine - I totally agree with you on the sleep schedule and not staying in bed. I have always pushed a consistant sleep schedule. She is in bed by 10 pm. The problem is that she can't get to sleep until somewhere between midnight and 2 am. Then I try getting her up at 8 am. That can take me atleast a half hour most mornings to complete. She doesn't nap during the day, but she is pretty much couchbound. Our doctor said the we first have to try to get some of the pain undercontrol and then we woudl start her on some physical therapy. If we do that too soon she will just end up back in bed. Most of the day she is sitting up on the couch. I know this is all going to take alot of time to figure out, so thanks for all your help and support.

Kim

pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 3/1/2010 2:44 PM (GMT -7)   
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

Sherrine
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Date Joined Apr 2005
Total Posts : 17094
   Posted 3/1/2010 3:19 PM (GMT -7)   
Kim, I'm glad to see the walking has helped you so much, too!  It made a big difference with me.  When the weather is not good, I have a walking in place video that I use, too. 
 
The teenager who is in college now that Karen and I have mentioned is an honor student, too! I did just email her and asked her if she could  give some pointers as what she did with her schooling to help out.  I know it was hard for her but she did it!  I'm not sure how often she checks her email though, but I hope we do hear from her.  She is one of our success stories!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40573
   Posted 3/1/2010 3:23 PM (GMT -7)   
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
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


AustenFan
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Date Joined Aug 2008
Total Posts : 1771
   Posted 3/1/2010 3:38 PM (GMT -7)   
Hi Kim, and welcome. I'm sorry your daughter is having such a hard time; as the mother of a teenage daughter, I can just imagine how hard it is for you too.

You've gotten some great advice, but I would like to add something about the fatigue. Both my sister and I have struggled with low ferritin and anemia. For me the resulting exhaustion before I was diagnosed was much worse than the fibro exhaustion. Once I got my ferritin levels up, which took me about 2-3 months tops, the exhaustion greatly improved. I still have it with the fibro, but it is nothing like it was with the anemia. I'm hoping your daughter's will improve with time.

Hugs - Austen
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
 
 
 
 
 
 


RedDiane
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Date Joined Jun 2007
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   Posted 3/1/2010 3:58 PM (GMT -7)   
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
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea


TeNNiSd0C09
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Date Joined Jul 2007
Total Posts : 1303
   Posted 3/2/2010 10:36 AM (GMT -7)   
Hey, I'm Christi. I'm so glad to see my fellow members informing me when o
can help. I'm busy with classes but never too busy to help! I'm 18 now and graduated last May.

I want to offer some encouragement and tips to stay strong. My problems started when I was 12. Schhool was challenging, but not impossible. I was an athlete and I got depressed because I felt weak like a failure for not being to
play anymore, and I was really good at all sports. Since being I'm college, it has been harder which is why I would like to give you guys some advice. Talk to the school because your daughter has rights under the ADA (americans with disabilities act). She is allowed any accommodation she needs. From extra time on tests, missing school whatever. The school has to legally work with your daughter to specialize a plan for her. Look in to that for sure. Also, invest in a recorder so she can record lectures & listen to them whenever as many times as she needs. This also allows her to not have to write notes.

Work closely with the school counselor for support & advocacy. I spent a lot of time talking to my
counselor & I see a therapist outside of school to control depression and talk about different stresses in my life. That affects how one feels during the day. Get your daughter on a sleep cycle. Going to sleep early and getting up at a decent time everyday no matter what.

I have more to say, but I'm in class so... I will back on in a little while. Take care!
Lyrica (15 months-quit Feb. 09), Paxil (10 months-quit 6-4-09), Cymbalta 6-6-09(horrible effects), Rozerem, Melatonin, Currently taking: Prozac 40mg (July 09), Trazadone 100mg (Sept 09), Focalin XR 5mg, Clonazepam 1mg, Wellburtin XL 150mg-Fibromyalgia, Depression, Anxiety Disorder, Panic Disorder, Eating Disorder, ADHD, Dysthymic Disorder, OCD
"Cracks in the concrete are just reminders that you fall apart no matter how strong you are"
"Sometimes it is best to forget what you feel and remember what you deserve"
   


pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 3/2/2010 10:39 AM (GMT -7)   
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

Sherrine
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Date Joined Apr 2005
Total Posts : 17094
   Posted 3/2/2010 10:56 AM (GMT -7)   
You're welcome!  I was happy to since I hadn't touched base with Christi since she went away to college.  Christi is a lovely young woman who has been through so much for her age.  She did give you excellent advice and I'm sure she will have more advice, too.  She has lived this!
 
Even though your daughter is a "night owl" she will probably need to change that.  Sleep is ultra important with fibro.  Her staying up late like that doesn't give her enough rest and she is far more fatigued this way.  So, she should adjust her bedtime so that she has plenty of rest and is able to get up at a regular time for school.  Besides, in a few years, she would have a problem getting to work on time, too.  I hope she can do that.  It would make life easier for you too! 
 
Yes, I have been able to walk my dog.  I live in Florida now but used to live in Ohio.  Being in Florida has helped me a lot because I can get out often and don't have to worry about snow drifts! 
 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 3/2/2010 11:00:36 AM (GMT-7)


getting by
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Date Joined Sep 2007
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   Posted 3/2/2010 1:39 PM (GMT -7)   
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
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 3/2/2010 2:55 PM (GMT -7)   
Hello Christi, Sherrine, and Karen! Thank you all for everything. I can't wait to hear more from you, Christi. I know you are very busy in college, so thank you for trying to help out. Actually, my daughter goes to bed between 9:30 and 11:00. However, she is unable to sleep. She usually can't fall asleep until between midnight and 2 am. I still try to get her up by 8 am but its tough since she has only gotten between 6 - 8 hours of sleep. The doctor is aware of that issue. Before she got sick she would fall asleep shortly after going to bed.

We were trying to work with a counselor. However, our first doctor (she even delivered my daughter) decided that nothing was physically wrong with my daughter and sent us to a therapist that she selected. From the very first meeting my daughter was guilty until she could prove herself innocent. She didn't believe that she could get through middle school without any issues. (My daughter is very sure of herself. She was a high honors student. Very social. She was able to go to their homecoming game and dance before her illness got real bad. She played soccer from 2nd grade untilthe start of 9th grade. This fall she had just started doing crew and loved it. then she got sick. Most likely the flu at the beginning of Sept. Its been all downhill since.) Lots of problems with the counselor and the first doctor. Finally I changed and it was the best thing I did. The first doctor only tested her for mono and her complete blood count. Eventually we were able to alot of other bloodwork and rule out other things. Then are new pediatrician suspected fibromyalgia and then two doctors gave her the same diagnosis. Now tomorrow we have a meeting with the school and our lawyer with a note from our doctor. It is recommended that she be tutored at home for the remainder of the year. Hopefully the school won't challenge us. Its been a long ugly battle. I had talked to the woman that is president of the Connecticut CFIDS and FM organization and she was very helpful, too. Hr daughter had CFIDS many years ago and was homebound for 3.5 years - all of her high school years. After 7 years she got better and is doing great.

Look forward to hearing from you soon. Thanks again for everything.

Kim

colabear2890
Regular Member


Date Joined Nov 2008
Total Posts : 103
   Posted 3/3/2010 10:20 PM (GMT -7)   
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
"never regret something that made you smile"

fibro, GERD, IBS, and appendicitis alot of times, finally removed

Meds:

prevacid, zofran, mircogestion , and ultram ER,


getting by
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Date Joined Sep 2007
Total Posts : 40573
   Posted 3/4/2010 6:41 AM (GMT -7)   
pksmdrag,

How is everything going for your daughter? Just popping in to see. I hope that you have a good day.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 3/4/2010 2:43 PM (GMT -7)   
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

pksmdrag
Regular Member


Date Joined Mar 2010
Total Posts : 72
   Posted 3/4/2010 2:53 PM (GMT -7)   
Aliza - can I ask you what you have decided to major in? I am happy that you are making it through college - good for you. I am sure its very hard at times.

I never used to take any meds but then I got RA and am currently taking a few to get it under control. am presently trying to get off one of them but that will have to wait a few more months. Prior to that I was so sleep deprived I finally told my doctor about all my sleep issues (actually I have always felt that i never really get into a deep sleep.) Anyway, she gave me Ambien. Well, I took one pill by 8 or 9 pm and was so tired after 8 hours of sleep the next day, that I never took it again. If I was going to be so tired it would be without the medicine. I msut say that since I don't have as much inflammation from my RA going on that I am not as exhausted. She seems to sleep ok once she gets to sleep. I am hoping with the longer days coming that will help, too.

I have tried to get her to come on to this forum but she isn't interested yet. I think she is still denying it or this is her way of coping. Well, you guys get me until she changes her mind!!! Hope that is ok.

Kim

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 3/4/2010 3:33 PM (GMT -7)   
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.
 
 
Here is the link from the American College of Rheumatology
 
 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 3/4/2010 3:37:01 PM (GMT-7)


AustenFan
Veteran Member


Date Joined Aug 2008
Total Posts : 1771
   Posted 3/4/2010 4:53 PM (GMT -7)   
Kim, if you Google "fibromyalgia teens" you will find a lot of info. including a support group for teens.

Good luck with the school; I hope everything works out for her.

Hugs - Austen
"There is no charm equal to tenderness of  heart." - Jane Austen
 
 
 
 
 
 
 
 


colabear2890
Regular Member


Date Joined Nov 2008
Total Posts : 103
   Posted 3/6/2010 7:07 PM (GMT -7)   
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
"never regret something that made you smile"

fibro, GERD, IBS, and appendicitis alot of times, finally removed

Meds:

prevacid, zofran, mircogestion , and ultram ER,


ksny_ru
Regular Member


Date Joined Mar 2010
Total Posts : 30
   Posted 3/8/2010 1:10 AM (GMT -7)   
Hi there. Im only 23 and i got fibro in the military, about 2 yrs ago. Fatigue, pain and concentraition are one of the worst things. Tried alot of meds and what im doing now is going to sleep around 8-9 pm with ambien (lower dose), wake up tired and take adderall right in the morning, and keeps me going. Im still in the military so concentraition and paying atention to detailes are very important. So far it has been working fine for me. Before i started it my memory sucked and concentraition was not there, i could barely read and remember. So may be you could consider that. You have to be carefull with adderal because it raises your heart rate for couple months but then it should get back to normal, make sure she has no heart problems. If you have any other questions ask me. I know that another medication called provigil helps with energy as well but for me adderal was the best choice. I also planning to attend college very soon and it seems like i wil have to take it in order to get decent grades... I dont know if i answered your question but you can always ask for more detailes. wink
 
"Life is 10% of what happens to me and 90% of how I react to it."
"If you don't go after what you want, you'll never have it. If you don't ask, the answer is always no. If you don't step forward, you're always in the same place."
--------------------------------------------

~KSNY_RU~
 
- Fibromyalgia, PTSD, IBS, Migranes, RLS, back problems
- Lyrica, Adderall, Ambien, Celexa, Norco, Clonazepam, Flexeril, Phenergan, Motrin
- Vit D, Calcium 1200

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