any young people here struggling??

Discussion in 'Fibromyalgia Main Forum' started by socalledsuccess, Apr 27, 2007.

  1. socalledsuccess

    socalledsuccess New Member

    Hello everyone!

    For starters, I'm completely new here. I've been poking around this site for a few days and you all seem like very supportive people so I decided to come on out of my shell and say hi!

    I've been strugging with lots of debilitating CFS/FM-like symptoms for the past two and a half years; the extreme exhaustion, burning/throbbing pains in my joints, random numbness and tingling in my extremities, foggy memory, occasional low-grade fever and dizziness. There will be days or even weeks when I feel somewhat "normal." But things have never been like they used to be and I ALWAYS relapse. I've had loads of blood work done, MRIs, and tons of other tests. I've ruled out Mono, Lyme, Lupus, MS, thyroid problems and pretty much everything else in the book.

    Here's the catch...I'm only 18.

    With everything else having been ruled out as a possible diagnosis, I am now headed to a rheumatologist who helped diagnose a family friend with FM after she had been to about a thousand doctors with no luck. After being literally laughed at by physician after physician, she finally recieved a diagnosis from him and has been given medication to help her manage her symptoms.

    I guess my question here is, firstly, are there any other young people here having their lives turned upside down by these debilitating symptoms?? And also, what lies ahead for me if I do finally receive a CFS/FM-related diagnosis in the next few months?

    These past two and a half years have been some of the toughest of my life, and I'm really looking to find some support here. While I still plan to graduate at the top of my high school class in a few weeks, this mystery illness I've been struggling with has literally had the power to control my entire life. I used to play two varsity sports and was president of three clubs.

    Now I struggle to get out of bed and lift my limbs...

    Thank you so much for hearing me out, and if any of you can offer advice or insight as to what may lie ahead for me if I receive a diagnosis, it would be much appreciated. Are there good pain medications out there that allow you to live your lives more fully and be more active? This has all been so hard for me to accept, and I'm hoping there is at least something for the pain that can make me feel like a normal, soon-to-be college kid. I live off of Aleve and Tylenol Arthritis and I know there's GOT to be something better.....

    [This Message was Edited on 04/27/2007]
  2. katvwolf

    katvwolf New Member

    Hi Honey! Welcome to the board! :)

    I'm sorry you're not feeling well. (((HUGS))).

    I'm only 30 and I've been suffering from fibro since the year after I graduated from high school. I know exactly how feel-in pain, tired, uncertain of the future, frustrated, devastated at times... This board has been a wonderful place for me because it is filled with amazing, genuine people, whom I can relate to! Sometimes, I come on here when I'm having a really bad pain day and it cheers me and comforts me because these people understand what I'm going through! I think attitude is half the battle with fibro-the pain can bring you down and so can some people who may not be understanding.

    When is your appointment with the rheumy? This is a good place to go if you're wondering if you have fibro. Seeing a neurologist might be a good idea too, if you're not happy with the rheumy.

    Don't become discouraged if the Rheumy says you have fibro. I'm 30 and I have a full life. I went to college and even did some graduate work. I held several jobs, one as an elementary school teacher. I am married to a wonderful man and have two amazing children. I have lots of hobbies that I enjoy. Fibro has not ruined my life. Like I said-attitude is half the battle. The key is to take one day at a time. Dwelling on the future is only going to give you anxiety. I do the best I CAN, and I don't beat myself up if I can't do all I WANT. Surrounding yourself with friends and family who are supportive is essential. Taking care of yourself is essential, too.

    There are treatments and therapies that may help you if you have fibro. I'm glad you've joined this board because there are knowledgeable people on here who are wonderful about sharing what works/doesn't work for them! There are pain medications more effective than what you are currently taking, but I'm not a physician, so I don't know what would be prescribed for you. Some of the people on here have used some amazing homeopathic remedies. Nothing cures fibro, but there are things that do help alleviate some of the symptoms!

    Sleep is a major must with fibro/cfs. How are you sleeping? There are things you can do to sleep better. For example, a warm/hot bath before bed can help relax you, soothe your muscles and help you sleep.

    If you need to vent, or want to ask questions, feel free to send me a post! Again, welcome to the board!!!

    I hope this helps!

  3. blizzybear

    blizzybear New Member

    DID you see the other post for the 19 yr old, i wish i could give you good news, there is really only trial and error, narrowing down what helps you, read posts of things that help others, there is no mirical pill, i had to stop collage and work, i could not function anymore, i was a exercise / outdoor aholic, now i am happy to walk as many days as i can. number one rule listen to your body, pushing and feeling that will get you through it is the worst thing to do, rest when you need it, i have about 1 and 1/2 days a week during good weeks i spend resting. on good days i have 3-5 functional hrs, i break them up with rest, pushing on bad days causes more bad days, you are in a uphill battel, go see a endocrinologist, rheumatologist, they can start you on the right track, some people are lucky and get the virus for 2-3 yrs and it goes away, maybe if you focus on it now, get medicsl help, you will be lucky and i hope so for your sake, we are all here to support each other, these posts are very educational, useally more than doctors. take care
  4. bobbycat

    bobbycat New Member

    I was in my 20's when I knew something was wrong with me and I went to dr after dr looking for answers. I gave up after awhile and was not diagonised until 1999. FMS was not reconized until 1990 (I think that is when it was.) Well I am 52 now. If you do have FMS/CFS then there is help out there given that you have a good dr that knowledgeable in these area. It is also important that you educate yourself on the what it is you have and stay educated. I am not going to lie to you if that is what you have it is a long hard road. Your life will change but, you can live a productive life if you pace yourself and try to avoid stressful situations as much as possible. If you are going to further your education and you do have FMS/CFS I suggest you go into a field of work that will be condusive to your illness. I happen to be a residential appraiser which I would say is the perfect job for what we have as it allows me to work at home, pace myself, rest when I need to and work out of bed when I need to. If you do have this you need to look at your life and not say it's over because of this but, look at it and plan it differently. You can still set goals and go for them. There is documentation of kids as young as 2 having FMS. I hope you do not have it but, if you do please try to stay focused and try to set goals for yourself. I hope some younger people will answer your post as there are plenty that are suffering with it. Please keep us posted as to what you are diagnosed with. I will keep you in my prayers.
  5. theycallmeLois

    theycallmeLois New Member

    I am a bit older than you. I am 20 I have FM. My primary doctor ran every test she needed to run to find out something what was wrong with me. We came to the conclusion I have FM. This was about 3 or 4 weeks ago.

    And there is something better with pain meds. I will be taking a class about fibro with the physical therapy department of my HMO.

    [This Message was Edited on 04/28/2007]
    [This Message was Edited on 04/29/2007]
  6. dani78xo

    dani78xo New Member

    I'm 17, and I've been suffering with FM and CFS since I was 15.

    With me, I got a diagnosis within six months, mainly because I'd been through a horrible "mono-like" virus, which is what set this entire thing off. Anyways, I didn't recover after getting the virus.

    They did full blood workups on me, ruled out mono (at least 4 times, too) and everything else. They sent me to a rheumatologist and after reviewing my symptoms and the level of pain thatI had (coupled with the tender point test), he diagnosed me with fibromyalgia.

    Most of the time, I feel completely alone in this. I don't feel like a teenager.

    As for advice; if you do get the diagnosis, then try to adjust. I've learned the HARD way that if you fight these illnesses because you want to feel like you're still the same as your friends, and that you need to "push" through it to get better, you'll only get worse.

    The only thing that gets me through these days is hope, and the improvement that I've made so far, in the past year and a half.

    As for pain meds--heavier things like vicodin might make you feel better, or they might make you feel worse. Personally, I can't take any of them, because they make me feel like I have the flu.

    I've had better experience with certain antidepressants, because they don't give you that drugged feeling, though a lot of them do have at least a few side effects. The only problem with ADs is that some make you gain weight without even realizing, and for some reason, it's EXTREMELY hard to get weight off with fm, especially when you can't exercise.

    Some days, it's hard to even get out of bed. I can tell if it's going to rain on any given day, because my pain will be 5 times worse that morning. Cold weather makes my muscles stiff, and increases pain tenfold. If I do too much, I WILL pay for it later, even if I don't realize it at the time. Most medications that I try give me horrible side effects--supposed "rare" reactions. I crash at random times, and don't want to do anything but sleep. Without concerta, I can't do anything for more than two hours. And I get sick around chemicals that have strong fumes.

    Some of the "symptoms" that we have to deal with are absolutely awful, but I get by on hope. I'm young. When I first got sick, I couldn't get out of the house. I missed my entire sophomore year of high school. But I worked my endurance up, and I got back into school for my junior year. And now? I'm in school full time, though I'm out sick at least one out of every three days. But some days, I can do a three mile hike with my dogs.

    You never know what to expect from fm or cfs, but despite how hopeless it seems sometimes, I think people are right when they say that if you get these illnesses young, you're more likely to heal. Sometimes I get so angry at life, in general, because I know I'll be stuck with this for life, but then I think about the good changes that it's brought on me. And about the hope for a GOOD treatment, or even a cure, some day.

    It's really really hard to get past the diagnosis at first--I still haven't completely accepted it, and I spent the first six months of diagnosis in complete denial, convinced that I had something else--something TREATABLE, and that they'd just missed it. It's better to try to accept it sooner, because if you and your illness come to a head, it'll win.

    The way I see it, I'm five times as motivated as I was before to do what I want to do in life. I went against everyone else to get into school full time, because they thought I should only do partial days. I'm happy that I'm doing it though, because sometimes it's frustratingly difficult, but I know that I'm sick, and struggle more than anyone else in school, but STILL pulling off good grades.

    Just don't give in to it, because that's the worst thing you can do.

    I sincerely hope you find that you have something else, but if you do get the diagnosis of fm or cfs, I hope something I said helps, even a little bit :].
  7. fiddlestix

    fiddlestix New Member

    Hi there!

    I'm 24 and I understand all the huge changes and struggles that we as younger folks have to contend with when faced with serious illness. Seems like our lives are only beginning to take shape in the first place. Just remember that you are not your illness. You are a person, a human being with uniquness and wonderful qualities. And lots of people do care. Heard the song "Never Alone" by Jim Brickman? Welcome to the board,

  8. OhWhatPain

    OhWhatPain New Member

    I'm 41 male that has had FMS my whole life..As others have said load yourself with all the information you can find..
    Medicines we have all tried all sorts of cocktails..
    hang in there

  9. bljnebraska

    bljnebraska New Member

    I'm 31 now and newly diagnosed; however, I have had pain since high school. I was an athlete and always attributed my joint and muscle pains to that even though it didn't always make sense. Glad to hear you're getting help now. I may have save myself a lot of pain over the years if I would have sought help sooner.

  10. redsox10

    redsox10 New Member

    Welcome to the boards. I have an 18 year old daughter who has been ill for 4 years and a adult son who is ill. After 2 years of CFS she was diagnosed with Lyme disease. This was ruled out twice.. most doctors do not do the correct testing for Lyme. You might want to check out the lyme boards on this site. There is also alot of information on lymenet dot com.

    Make sure you read about Lyme disease. My daughter is still gettting treated for this and has improved and my son is now 90% better since treated for lyme disease.

    Good luck and healthy thoughts come your way.
  11. evol_or_revert

    evol_or_revert New Member

    dont give up hope and dont give up fighting!!!

    I have fibro and CFS since I was 14 dignosised at 17 I'm now 20.

    It turned my life upside down!! I was a competitive horse rider now i not.

    Anyways at your age I was in that exact place unable to get out of bed, these days I'm able to function at about 95% even running around!! I'm in my third year at university as well.

    You have age on your side at the moment :)

    What helps people get better does differ greatly, but if you want any advice or to hear what i did im more then happy to help.
  12. powpow

    powpow New Member

    I'm fairly young and been dealing with my problem for 10 years and it's controlling my life, nothing works and I have done everything to help my problem i've seen doctors and totally lost respect for them. I'm starting guaifenesin therapy will see how thats going to go. I want to get off this roller coster.
  13. OhWhatPain

    OhWhatPain New Member

    wish you the best

    [This Message was Edited on 05/04/2007]