Young with Fibro

Discussion in 'Fibromyalgia Main Forum' started by brella, Sep 1, 2006.

  1. brella

    brella New Member

    I was just wondering if anyone in here is young and has fibromyalgia? I'm 20 and I just don't know how to deal. My life is just starting and I feel like I was hit by a bus all the time.
    Just any words of advice or other people with my same issue?
  2. StephieBee

    StephieBee New Member

    Im 25. I started getting symptoms at 18 and i was dx'd at 20.

    It is hard when you are so young to deal with this! It turns your whole life around. We want to be able to do everything that everyone else our age is but this DD stops us! I feel like im 90!

    The only thing that I can tell you is that it will be hard to deal with for the rest of your life, but the anger and biterness does go away in time. It took me many years to accept this, but I did. Don't get me wrong...I still vent about it, but Im not constantly angry at the whole world. I dont have that "why me" attitude anymore.

    I have come to realize that I could have alot worse. So atleast I can be grateful of that fact.

    Hugs,
    Stephanie
    [This Message was Edited on 09/01/2006]
  3. Konakid63

    Konakid63 New Member

    Hi there,
    I am not nearly as young as you are, but was diagnosed in my 30's and felt the same way alot of times. I just wanted to let you know that for me, it hasn't always been bad. I rollercoater up & down, and yes, that can be frustrating; but finally after several years of being diagnosed, I now know that I can go out & do some of the things that I love.

    My advise to you would be to really listen to your body, and I mean REALLY listen. If you don't know how to do that, just really listen to your gut feeling...it will lead you. And if you really don't think you will feel up to it, then say so. Maybe your friends can change their plans or at least modify them a bit. Give your friends & loved ones a chance. Sometimes they truly don't get it, but other times they can really be there for you!

    Hang in there. Try to keep positive.
    Here's a BIG Hug coming your way.

    ~ Susie
  4. peachrie

    peachrie New Member

    hey there,

    im also 20...do i understand how hard it is at this age!!!
    i feel like im 80, i have spine problems, and ive had fm for past few years. but i always think a bout the times before i had this...u know when i could be my age and not have to think about pain!

    are u in college? how long have u had it?

    all i can saay, is keep trying to find ways to cope- i have big hopes that we can find relief soon...i look 4ward to getting to know u!

    hugs, p
  5. brella

    brella New Member

    I'm in college...my 4th year.
    I'm not sure I have it. Well I think I do but 2 different doctors said they thought I did and then said they didn't think so.
    I have like every symptom though.
    But it's progressed from back pain to every symptom over for almost 4 years. I got hit by a car when I was riding a bike.
  6. rachel432

    rachel432 New Member

    i'm 32 and i think i'm to young for this! looking back i started getting sick at 22 with debilitating daily headaches, followed by joint pains. i wasn't diagnosed with this dd until a year ago. but since i was diagnosed my medical treatment has improved and i've felt better then i have in years.

    at least if you find a good doctor now you won't lose years of you life being treated incorrectly. so you'll end up better off in the long run. if you read the stories on this boars it seems like so many people stated getting syptoms in their 20's or even younger. it sucks to jut be starting your life and feel like it's falling apart.

    rachel
  7. 143alan

    143alan New Member

    Thanks prickles for your response to brella. I hope it helps you a lot brella as I hope it helps my own son. My son is 15 and has had RND (kissing cousin to FM) since he was 5. Doctor's kept calling it growing pains. I threw a screaming fit at a Dr. when he was 10 and had to tell THEM that there was such a thing as Juvenile RA and they need to test him for it. He agreed (mostly felt sorry for me, or thought I was going to kill him)drew blood and tested and sure enough discovered that he had RA. RND(Reflex Neurovascular Dystrophy) developed because he had gone so many years without treatment for the RA. In RND the spinal cord sends an amplified pain signal to the brain. One so-called specialist at Vanderbilt University wanted me to send him (age 10) to a treatment facility in Wisconsin where he would be exposed to extreme pain to supposedly trigger the brain to correctly respond to pain. Whata bunch of crap...there is no way I was sending my baby to a torture camp.

    Hang in there brella. My son has at times talked about suicide because he is tired of being in pain, but then he focuses on the things that interest him to take his mind off of it. Find what works for you. Thanks again prickles for your list I copied it for my son to read.
  8. KMD90603

    KMD90603 New Member

    I'm 24 and was diagnosed with CFIDS. I was 15 when I first became sick, after having mono. My symptoms really increased after having my son at 19 years old. I finally sought help when I was 21, and was diagnosed by an infectious disease doctor when I was 22.

    It's difficult to know that you are young and may have to live with this illness for the rest of your life, or at least for a very long time. The thing to remember is that you can still live a productive life with your disease. Fibro and CFIDS does mean you have to give up. Continue to research about the disease, and try different treatments. Allow yourself extra time to rest, because that is key in avoiding/minimizing flareups.

    Gentle hugs,
    Kim
  9. JoFMS

    JoFMS New Member

    Hi Brella,

    I'm 27yrs old and have been suffering with fibromyalgia for 3 and a half years. I wasn't diagnosed until June this year but kind of knew I had it from my symptoms. It's really difficult being told you have a condition with no cure. I found it even more difficult being young as there are a lot of things I can't do. I used to cry every day because of the pain.

    During the last 2 years I have tried the following: chiropractor - didnt help
    physiotherapist - helped for a few days
    osteopath - helps relieve headaches and tension (v good)
    low level laser therapy - excellent combined with osteopathy, helps the muscles to heal
    bowen technique - no improvement
    acupuncture - no improvement
    most painkillers - no improvement
    amitryptilline - too many side effects to continue
    cranial sacro therapy - no improvement

    The only things I currently do now is take 2 Tramacet painkillers everyday at 10am, I find these have completely changed me from someone who was crying every day and bedridden back to myself again (at least up until about 6pm). I almost feel normal on these tablets and will prob continue taking them long term. I also take 350mg magnesium, 500mg malic acid and a good B complex vitamin.

    I find saunas, spas, baths listening to relaxing music all help.

    I have a problem with confidence and nervousness when in pain every day and the painkillers definitely help that. ithout them I dont want to see anyone or even leave the house!

    I hope you find something that works for you and please reply, I haven't had one yet.

    Take care, you will find something to help you.
  10. brella

    brella New Member

    I just wanted to reply in general and say thanks for everyone's replies.

    Just to give my story a little bit, I got hit by a car when I was about 16 (4 years ago). I started with chronic lower back pain that progressed to tons and tons of symptoms.

    Everyday I'll have a new pain or symptom it seems like. Some of them scare me and make me think I have something else happening. (Like sharp pains in my head/head aches=brain tumor) It may seem weird but I'm not used to all this yet. I don't know what to do to function in just daily life sometimes.

    I've tried many things...physical therapy 3 different places, acupuncture 2 different places, any pain killer/anti inflammatory/natural methods.

    My most recent doctor said she thought I had fibro but then now wants me to get some genetic testing for mitochondria disorder or something?? Doctors are useless.

    Just one question...I'm out of shape physcially because whenver I do any physical activity I have worse pain for a week or so after wards. Any suggestions on how to get exercise but something that won't make me flare up?
  11. StephieBee

    StephieBee New Member

  12. rachel432

    rachel432 New Member

    hi brella
    i've found that 3 types of exrcise don't couse me immense pain. pilates, eliptical machines, and riding a bike. i've foung that as long as i take it slow i can do any one of these without causeing a flar. i think the reason is that all of these have no impact or jarring motions.
    i hope this helps.
    rachel
  13. boltchik

    boltchik New Member

    Hi brella,

    I do water therapy exercises. It is very peaceful and low impact. My pain is pretty nasty right now, but when I am in the pool I feel relaxed and good about doing something for myself to ease the pain. Take good care of yourself, Kim
  14. michellokitty

    michellokitty New Member

    I was diagnosed officially with fibro at age 29, but have lived with it for 6 years. My life is a mess in many ways even though to the average person I seem to be very organized and happy. The worst thing for me has been creating and cultivating friends. I feel as if noone understands me, so i have realized that I need to find some that are like me. Feeling left out is a big part of this disorder. I am left out when my family goes bike riding. I am left out when my parents visit big fun parks. I just cant do those things. It hurts because inside I want to RUN! I hope you all create the best life you can while dealing with this. It is so hard sometimes. I find pretense can be the only way to survive, but you begin to feel that you are living a lie too. I am a working professional and hiding from the pain day in and day out is terrible. I pay for it when I get home each night and on the weekends. I feel for anyone who is young suffering from this. Keep you chin up. You have a friend here!