Too Young for Fibro

Discussion in 'Fibromyalgia Main Forum' started by psyank, Jan 14, 2006.

  1. psyank

    psyank New Member

    I have a 20 year old daughter who is FM. She is currently taking morphine (when needed) for the pain. She was misdiagnosed for most of her life until 5 years ago. They all thought she had migranes (we couldn't understand why no meds ever worked on her). Tonight she is going for a sleep study. I dont know what to do for her anymore. I have taken her to so many drs. that sometimes I wind up taking her back a second time not realizing I have been there until I see the drs. face. Besides the pain in the entire body, she sometimes gets heart attack symptoms. Her new thing was the tingling on the left side of the brain the other day. She goes to school part time and works part time. I commend her on not giving into this disease (most of the time). But she can't lead a normal life.
  2. ellikers

    ellikers New Member

    I am sorry to hear about your daughter's struggles ... I'm about her age (I just turned 23) and I have what appears to be CFIDS, what doctors also think seems like fibro and a bunch of other chronic conditions. It sucks to be young and sometimes feel like you are the only sick one. Everyone else seems to be pushing their lives and bodies too hard by getting minimal sleep, tons of bad food, caffiene and alcohol, and yet their bodies are letting them get away with it!

    I use to be a very active person, but over the last year my life seems to have screeched to a halt. It's incredibly frustrating to be in this situation, not to mention also being young. (I've even been told by some doctors that I couldn't have _____ problem because I'm too young! As if that cancels out the pain and frustration of what I'm dealing with!)

    It sounds like you are being an amazing support and you're doing all you can do. Just know what she probably doesn't want to be a burden and probably wishes she could do more to ease your pain of being with her as she struggles.

    I just wanted to let you know, from the perspective of the sick daughter ;) that you are awesome for supporting her the way you are and that you are a great mother! Nothing more could be asked of you. Take care!!
  3. lease79

    lease79 New Member

    I started having symptoms at 11, & was diagnosed by 18 with CFS. FMS by 21.
    I am sorry that your daughter has this, it must be awful watching your child go through it.
  4. smiffy79

    smiffy79 New Member

    my symptoms started at 9 i am now 27.

    dont disregard the migrains they may (still) be there.
    my nuero was amazed after my mri,im walking around with a migrain all the time strong enough to put you in a dark room hiding under covers and as a result i suffer these weird phenomonens.

    unfortunatly most of us here have had to go dr hunting on order to find a good one,i found mine by accident :)

    the thing is you must listen to her,she may look fine she may put on a brave face but this illness is massive and it took until i was violently sick and shaking before my husband could see just how huge it is.
    i call it my many headed beast.
  5. psyank

    psyank New Member

    my daughter has had 13 sinus surgeries also. i don't think the two are linked (or are they). She has tried massagae therapy and physical therapy. Physical therapy did her no good and the massage therapy worked for a limited time. She wants to become a child psychologist. And I tell her go for it. And to all of you...go for your dreams...don't let this damn disease win.
  6. psyank

    psyank New Member

    she was tested for lymes, lupus and cystic fibro....all came up negative...sometimes i wish one would come up positive so i have more of an answer. ........ have a good week
  7. ~Sibyle~

    ~Sibyle~ New Member

    I began having symptoms at 5 or 6 then began getting migranes at 9. At 19 things began to get really bad for me. I had mono and my spleen swelled up. I had to take 2 weeks off of work and eat a special diet.

    I am 26 now and have two beautiful children and a loving supportive husband. I get along OK most days. Eat well, lots of fruit and veggies. Stormy's shake has been a lifesaver! Make sure she gets lots of rest, lots of water and lots of good, healthy food.

    Best wishes!
  8. psyank

    psyank New Member

    Thank you to everyone who has responded to my first message. Your responses have been overwhelming. I appreciate your suggestions and what has not been tried...will be tried. I asked her if she wanted to go on this board and she said no. I wish she would. One thing I have to say is that she is definitely not depressed. I will use this board for myself. Its definitely a way of therapy for me. Again..thank you all.
  9. ~Sibyle~

    ~Sibyle~ New Member

    Please come here any time! We are here to support the families of CFS/FM sufferers too.

    I am so happy you believe your daughter's diagnosis. My own mother doubts the validity of this DD. She is convinced that I am simply lazy.
  10. ellikers

    ellikers New Member

    I realize that we aren't "too young" to be sick, it's just that it's hard and when you are surrounded by very active young people (your age) living a different life than you are able to. And so different than you used to be able to. But if I was nearer my parent's age, for instance, people have a different lifestyle and more health problems that present themselves mostly because of they are just naturally growing older.

    It sucks for us ALL though, regardless of age, gender etc, and as this forum proves, it sucks for our familes and friends as well.

    Take care everyone. I'm so sorry to hear that so many people here have been sick for SOOOOOO long. We all deserve to get wonderful help with our health and live the best lives we are able. :)
  11. smiffy79

    smiffy79 New Member

    if or when she is ready to come meet us she will be made very welcome,im in study to become a dog trainer and (if) i pass i will then continue my study in dog psyhcology.

    tell her to go for it,there may be times when pacing is needed or when you pick up a book and read the same line over and over and it makes no sence (these are part of cognitive dysfunction) but dont let her beat herself up over it.
    grab a breath of fresh air or take a short nap before hitting the books again :)

    welcome by the way,were a happy bunch some of us are a little strange around the edges lol but were all friendly
  12. psyank

    psyank New Member

    if you meet my daughter, she will always have a smile on her face. no one would ever think she is "sick". she is going to school to become a child psychologist and i commend her for that. she will take 4 years to complete a 2 year community college and then she wants to transfer to another college. i say more power to her and everyone else. today she took an entire morphine pill because of the pain she is in. but she still went on with her daily activities. i have found a dr. who has fibro himself and and taking her to see him feb. 1st. of course, he doesn't take my insurance, but i will do anything to help her. she has a boyfriend for the last 4 years who is very good to her and very understanding. i asked her last night if she would come and write on this board and she said no. i wish she would.

    again, thank you for listening to me.
  13. psyank

    psyank New Member

    the dr. i am taking her to is dr. mark guariglia in point pleasant, new jersey. we will see what he can do for her. i am not sure what insurances he takes (know he doesnt take mine). she doesnt take any anti depressents. i just got back from her with the results of her sleep study. they found nothing. we will just have to wait and see what this dr. can do for her. do you think you can get to see him? take care and feel good