BROKENHEARTED MOM NEEDS TIPS ON CHILDS FMS

Discussion in 'Fibromyalgia Main Forum' started by judee, Oct 28, 2002.

  1. judee

    judee New Member

    If you haven't read any of my previous posts, my daughter, age 11 has had FMS for 3-4 years. It has been a long battle trying to get her diagnosed and getting anyone to listen to us, not to mention all the accusations of it being in her head like she's some emotional basketcase. She is in the midst of a major flare up, one of the worst and has basically been bedridden. She barely can attend school and has not been for a month. I read a story that she had written about her journey, (I told her that maybe she would write a book one day to help other kids), which talked about how wonderful her life was before the pain started in, how she had friends and a good life. My heart truly broke tonight when I was telling her about when I was in elementary school and we studied bones, humans and animals. All of a sudden this brought tears to her eyes and I didn't have a clue why. You see, my daughter used to be an honor roll student, she loves to learn, read (she just asked to a subscription to Time Magazine for she enjoyed the articles),and has attempted to learn a foreign language on her own. Her tears were brought on by the fact that she had missed both years in school as a result of FMS when they studied bone structure. She hates the fact that this illness has taken so much away from her. I didn't know what to say, I felt so bad. I wondered how I could ever help to make up all the things she has missed out on. I do my best to encourage her, but she is finding it difficult to see her future in any positive light in regard to FMS, High School and College. She wanted to make enough to have the things that she loves. She talks about a house with a fence so she can have a dog. She is now also afraid of losing her only childhood friend because she can never play with her (her friend is very active). I told her that their friendship will make it, she just needs to communicate with her and tell her that she really wishes she could play with her and what is going on with her, and that she would understand. but she won't open up. My question to you all is how and what can I do to keep her positve and encourage her. Any suggestions as to how I can supplement her life with the things she needs. I hope I am making sense, I just don't know anymore.
    Thanks,
    Judee
  2. judee

    judee New Member

    If you haven't read any of my previous posts, my daughter, age 11 has had FMS for 3-4 years. It has been a long battle trying to get her diagnosed and getting anyone to listen to us, not to mention all the accusations of it being in her head like she's some emotional basketcase. She is in the midst of a major flare up, one of the worst and has basically been bedridden. She barely can attend school and has not been for a month. I read a story that she had written about her journey, (I told her that maybe she would write a book one day to help other kids), which talked about how wonderful her life was before the pain started in, how she had friends and a good life. My heart truly broke tonight when I was telling her about when I was in elementary school and we studied bones, humans and animals. All of a sudden this brought tears to her eyes and I didn't have a clue why. You see, my daughter used to be an honor roll student, she loves to learn, read (she just asked to a subscription to Time Magazine for she enjoyed the articles),and has attempted to learn a foreign language on her own. Her tears were brought on by the fact that she had missed both years in school as a result of FMS when they studied bone structure. She hates the fact that this illness has taken so much away from her. I didn't know what to say, I felt so bad. I wondered how I could ever help to make up all the things she has missed out on. I do my best to encourage her, but she is finding it difficult to see her future in any positive light in regard to FMS, High School and College. She wanted to make enough to have the things that she loves. She talks about a house with a fence so she can have a dog. She is now also afraid of losing her only childhood friend because she can never play with her (her friend is very active). I told her that their friendship will make it, she just needs to communicate with her and tell her that she really wishes she could play with her and what is going on with her, and that she would understand. but she won't open up. My question to you all is how and what can I do to keep her positve and encourage her. Any suggestions as to how I can supplement her life with the things she needs. I hope I am making sense, I just don't know anymore.
    Thanks,
    Judee
  3. garyandkim

    garyandkim New Member

    is dxed. He is now 19. He was never as bad as your daughter. Everyone has to find something that they can find enjoyable to them and not dwell on the bad. But, at her age it is so hard. Is there a group near you that maybe if she can't go see them some of the younger ones could come and visit and then also have the phone and E's to keep in touch when not able to be together. Would she like to come on here. We both had FMS symtoms since we wre teens and me maybe 12. It's hard to remember. We found a doc on the docs refural listing here on the home page and it wasn't till we found him that we really got real help. My CFS doesn't bother me as much as it use to.

    A book maybe she could even ask q's here to help her along and talk to others.

    Keep yourself well and take care, Kim and Gary
  4. achy

    achy New Member

    http://dizilizi1.homestead.com/page1.html

    I cannot imagine being a child with this awful disease. God bless you both.
    Achy
  5. allhart

    allhart New Member

    thank you for being such a good mother you stuck with her and belived her when others did not the is probley the best gift you have given i belive i had this sense childhood but as a child i was called a faker i would lay in bed crying from the pain and would get in trouble for it ,is your daughter on the 504 programm at school so they can send tutors to her? do you think you could ask the teachers to have a student come by each week just to share whats going on in school,maybe get her into a church youth group and they can come to the house for meetings once in a while so she feels apart of something still also talk to her friends mom and have her talk to her daughter about your daughters illness and how much there friendship matters,the more she feels involed the more positive she will feel, she may get better as the years go on reminder that she can always get a at home job when she getts older so she can have all the things she dreams of ,try and find a youth support group in your area or maybe even start one
  6. ladydi

    ladydi New Member

    Dear Judee and your Daughter,
    So sorry to hear of an 11yr old with this DD. It's certainly not fair for a child to be confinded in this way.
    I'm quite sure that her emothional well being is tearing her apart.(as yours too).
    I would recommend that you get the PCP to send her to a
    Rheumatologist for a proper diagnosis. I see young children
    in the office where I go. Although, I don't know their diagnosis, I,m sure they are getting treated like they have a REAL illness.
    Also, have you ever given your daughter Magnesium? Besides
    all the multi meds I take, I find that the Magnesium Oxide
    is my best friend. It does take away muscle pain to an extent for me.

    I've not offered you much advice, but I did want to respond to you, and let you know, that I do feal sincerly
    sorry that your daughter has to deal with this.

    (ALSO ACHY;; I COULDN'T FIND THE WEB PAGE
    YOU OFFERED IN YOUR POST.)

    Well, Judee I do pray that you will find some help for your
    precious daughter, either on this board or somewhere.

    Warm Fibro-Hugs to Judee and Daughter,
    LadyDi
  7. tedebear

    tedebear New Member

    Soft hugs.
    So sorry to hear that a young woman your daughters age is experiencing this syndrome. Prayers and hugs abound. I can't even begin to imagine the endurance level by the time she reaches my age 52.
    Hugs again.
  8. karen2002

    karen2002 New Member

    Judee,
    You mentioned your daughter's love of learning--and that because of her illness, and inability to attend school regularly, it is being impeded. Obviously, since she was an honor student, she has a love of education and knowledge. Have you thought about homeschooling to feed this wonderful appetite?
    This type of student makes a wonderful candidate for homeschooling as they are self motivated, and so anxious to learn. She can excel in this, and it will give her a source of pride, that will lift her spirits in the face of this illness.
    Homeschooling also has the added benefit that she doesn't have to keep prescribed hours of study, or even get dressed, if she is not feeling up to it. There is so much more flexibility in homeschooling. An added benefit, is that it takes much less time daily, as the child is getting individual attention, and can work at his or her own pace. In the case of your daughter, and other gifted children, they can excel, as they can accomplish the tasks much quicker than alot of their peers. There are wonderful curriculums, that are fully accredited. There are video courses available if you choose, or one can order the text books and teachers editions, going the more traditional route. Additionally, she would be less exhausted while working at home, instead of exhausting her energies daily at school, and perhaps could make playdates with her friends.
    I would be happy to share with you, any of my experiences in homeschooling, and the school that we highly recommend.
    I can be reached at jkrather@ltex.net if you are interested.
    Best Wishes,
    Karen