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    I'm sixteen and was recently diagnosed with Fibromylgia
    bonjourfatimaa posted:
    Hello All, I am new to this and quite frankly I don't know where to begin. My doctors have been looking for answers to my recent joint and muscle pain for about six months now, and two doctors think that is may be the answer. I suffer from chronic immobilizing pain, and I am having trouble making accommodations for myself. I am used to getting everything I need to get done, done. But with this condition I find it gets in the way very much especially when it comes to my school work. Its been tough, I hate change and as you all may relate this condition really changes aspects taken for granted in life.

    I guess, I want to know it gets better from people that going and/or went through this. Its just an adjustment period right?

    Thanks for listening
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    dollbug responded:
    Hello and welcome....MiMi in NC. Sorry that you are dealing with so much right now. It is true that this condition really changes a person's life. Things can get better though as you learn more about the wrath of the dragon, aka FM....and figure out what might help you cope better. Will you ever be painfree, probably not....but there are certainly *tools* that will help you cope better. I do hope you will check out the info here under *tips* and *resources* and be sure and review the *member toolbox* where you will find some good *tools* that just might make a difference for you.

    Since you are 16 I am interested in knowing if you have any idea what *brought your FM to the surface*? Did you have any sickness or trauma which took place in the beginning? Did you just wake up one day and something was wrong?

    I am sorry that you are so young and are facing the wrath of the dragon. I am assuming that your doctor has ruled out other illnesses as well.

    Did your doctor check your Vitamin D level? If not, then I would encourage you to be sure and ask the doctor to do this. Low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well. It is a simple blood test BUT you normally have to ask the doctor to run it.

    Everything with this illness is a process....and it does take time and effort to figure out how to make it better. So hang in here and learn all you can about it. Try whatever you think might help you and allow at least 6 - 8 weeks of whatever you decide to try, unless, of course what you are doing is making you even sicker than you were.

    Learning how to pace, pace and pace even more is a good thing to start with....try not to over do or cross the line. Taking a hot shower at night using lavender bath salts which help relax your body so that you can sleep better might also help you. We, FMers, need to get plenty of sleep....a lot of us don't and this can certainly make a difference in how we feel. Eating right and drinking plenty of water each day might also help you as well. Using a heating pad on the places which just refuse to quite hurting might also provide you with some relief. Using Stopain Spray (found at walmart) might help you as well.
    If you are having problems with getting comfortable when you sleep, you might also try a mattress topper.

    These are just a few of the *tools* that you might try.

    Hang in here and learn all you can about what others have found that has made a difference for them. Ask questions about things you might want to know. This is a good support group and we are here to share what info we can with others to help make a difference for them.

    We do understand how you feel, as we have been there, done you are NOT ALONE.

    Take care.


    rudyandirmouse responded:
    Hello and Welcome bonjourfatimaa. I'm sorry that you have been diagnosed with Fibromyalgia but am so glad you have found your way to this site where there is support and understanding.

    Fibromyalgia isn't a stop you in you're tracks illness, not unless you just let "IT". I say that because I did do just that when I was 27 and got the DX. I just laid on the living room couch for 6 months and felt sorry for myself. With each new ach and pain I pitied myself more. Finally, friends from collage got me back in classes, on track, took me to campus and plunked me down into a seat and ya know it worked.. I was sick, yes, felt so ill each step hurt, but I was out doing the day my way. "IT" didn't take charge.

    A suggestion: Since your in school try water exercises to help with any muscle pain.

    So each day, sick or well, and you will have remissions with fibro ( spring and summer are better for us than in the colder months ), days where you feel no pain or aches at all, I get up and do what I can, in a big way or small, and I feel pretty good at the end of the day.

    Also, there is so much out there to help with the symptoms of Fibro. When I got the DX back in the Dinosaurs years, there was nothing.. now it's either on a script or OTC ( supplements like D3 and the B's helps so much ).

    With fibro it's a trail and error process.. one size doesn't fit all. Something I do or take won't help someone else here.. so if something you see here.. and I do hope you come back to us. Know that we're here to listen, support and care.

    Will close this here.. Gentle hugs to you, Linda R
    bonjourfatimaa replied to dollbug's response:
    Thank you so much MiMi, I really was not expecting such care and support.
    So, my symptoms started just as I was leaving for my Honors Math and Science program at Berkeley this past summer and I had to come back home to see my doctor. I got loads of blood work, but as you've probably experienced my labs came back normal. She first prescribed Naproxen, later Tramadol as the pain worsened while away. Being ill like this was definitly new, but I personally believe that my life was pretty much the same before. Besides leaving for UCB, life was pretty constant and going great since I was uber excited to go see my buddies for five weeks.

    Although, the second time I came back ill from the program after my best friend wrote a very descriptive email to my doctor of a very painful night; my doctor seemed sceptical. Her words, "How can you sit here smiling when in your email you said your pain level was 9-10? Are you JUST homesick and want an excuse to be back?" As you can imagine, I was furious and upset that she or anyone could think I make this up, then I began to question myself. I would ask myself, what if this IS actually in my head because my labs are normal. But I would reply, why would I knowingly put myself through this? And the conclusion was an obvious no. But after worsening symptoms and more medicine that just didn't work, I was finally referred to a rheumatologist that believed I may have Lupus since it runs in my family. I got tested and that was not an answer, but he saw the distraught in my eyes when he said he didn't have a diagnosis. After more and more questions and more and more labs, and after checking the fibro tender spots, he concluded I may Fibromyalgia. BUT, referred me to Stanford for a second option. BUT, right now I am in a battle with my "poor people" insurance that doesn't want to cover my visit, nor to another specialist. That's pretty much my history from my last visits.

    I really cannot wait until I fully discover what will work best for me because as bad as it may sound I hate not being in control. For example, I am working on cutting out dairy and working in yoga. Time is sparse for me at the moment because of finals, but I will get my self to yoga!
    But, in the midst of this mess of naming my condition, I can't complain too much. Smiling is truly the best medicine and stress reliever.

    Thank you so much, hope you're doing well!
    bonjourfatimaa replied to rudyandirmouse's response:
    Thank you so much for this Linda R, I really appreciate it.

    After having this diagnosis for about two months, I have made peace with it. I try and get my things handled while well and then try and use distractions when not instead of meds. As many women, I love to shop and I use retail therapy as an outlet for frustration and stress. But of course, we cannot always go to our favorite stores because we are sick or its late at night or you can't drive like myself. So, I do online shop especially when upset with my fibro. I wanted to ask if it was strange in any way, that I feel a bit better about this situation if I buy cute hot water covers or pretty pill cases. Shopping for things that will my fibro a bit more pleasing is now a new hobby when I cannot get out of bed. Is that strange?

    I really want to look into water exercise, but first need to learn to swim properly. And, I need to make time outside of school because my school is very small, new, and academicly focused which leads to no sports.

    Thank you so much for caring, Hope you have a beautiful day!
    katmandulou responded:
    Hi bonjourfatimaa and welcome! You are not the first young woman to have these questions, and I hope we can help you.

    Pay really close attention to MiMi, and when she says pace yourself she means PACE YOURSELF! You'll find you can get more done when you do. The Vitamin D thing is important too. I asked, got tested,and now take 1,000IU every day. I try to get my D naturally, but this is New England and the sun hasn't been out in a few days...

    Listen to every thing your body tells you - when it's tired, rest. When it's sore, take pain meds. And when it's almost unbearable, call your doc for more help.

    I see a rheumy, and he, along with his PA, is the absolute best! That insurance thing can really cramp your style, but use a bit of energy to push back for what you need. Ask your doc's office staff to help; they do that, and it will be worth it.

    There are some good resources in the right-hand column. Also check out . It has good tips for us, and you have to check out The Spoon Theory - it will help you explain to people what it's like to be in your body.

    I certainly hope we're helpful. Have the best day you can possibly have,
    bette_kaffitz responded:
    Sorry, but the news is not what you want to hear. Most of us will have fibromyalgia for the rest of our lives.

    The good news is that 99% of the time you will not be at that level 9 or 10 pain. With proper treatment and a lot of pacing on your part, you will probably spend 80% of the time with your pain level around 3 or 4. You will be able to distract yourself from this pain with a little bit of ingenuity. But there WILL be some times when the pain level scoots up and invades your life.

    Your job is to find out what works. Find out while the pain level is manageable. You won't have the energy on a really bad day. Stock up on pain management techniques that work for you. Ask your doctor for a "rescue" medication to have on hand for emergency use. Sometimes, somehow just having this medication takes the fear out of your equation. You know that you will not have to face the worst possible pain unless you yourself decide to tough it out.

    Please check out the Tips to your right here. Some of them will seem weird to you. Skip them. Give some of the others a try. Do try warm water exercises. They are a lifesaver.

    Keep as active as possible. You will be building up reserves that will be there for you next time you need them.

    Your life will be a life that includes fibro. So was mine. It did not stop me from earning 3 degrees, teaching for 11 years, and raising two wonderful sons. My dear husband will attest that you can still have a satisfying and loving relationship. Friday will be the 50th anniversary of the day we met roller skating. We've been married since 1967.

    Fibro is not the end of your life. It is the beginning of a slightly different life from the one you imagined. But it can be a good life. Even at 70!

    bonjourfatimaa replied to katmandulou's response:
    Thanks! I will ask my dr next time I go in to be tested for my Vitamin D levels. And, as for pacing, I will definitely work on it. Being used to always getting good grades, having interruptions from my fibro makes me work that much harder and stay up as much. I will check out the Spoon Theory, and I just browsed the website! I love this website, thank you for letting me know of this blog.

    Thank you again, take care
    mortam replied to dollbug's response:
    I've just been reading through some tips and comments and came across your post above Mimi, although it was not for me it really hit home and is so nice to hear there is support out there, since finding out only 5 months ago I have felt very alone and that people don't understand and can make me feel like I'm over-reacting or over dramatising they don't say but you feel like you can't tell truthfully how you are feeling. At first I was relieved to find out as I no longer had the unknowing feeling and I can get on with my life, but now it's like the reality of what I have and that it's not going anywhere is daunting and makes me sad at times as I now have to plan my life around it and what I can manage, And most importantly that the pain is not going away and those awful flare ups will be back! Thank you for such a nice post
    missist replied to mortam's response:
    Hi.. I know lots of folks have already chimed in.. I was just thinking of something--many people with fibro have it begin with something stressful or painful. I notice you are 16, an honors student an going to college? For me that would have been a stress kicker-- it is possible that may have kicked off what may have been a potential issue to begin with. Does anyone in your family history-- near to you-- cousins, sibling, aunt/uncle/ gramma/ parent-- have any serious chronic pain issue?

    Mine began during a super stressful year--I was pregnant with my 2nd child in a stressed out marriage with hubby in school, working at a physical job and then got a hard to whip sinus infection and topped it off with a work injury. I was one of those people who drove myself to do really well in my job and as a parent and was also very 'should be' about my marriage. So kind of perfectionist/type A ish. Seems like a lot of us who have had to learn to Pace pace pace ourselves with this disorder began with that kind of work ethic and an inablilty to keep it up.

    Just mention this because your situation sounds like someone who is 'driven' toward excellance--nothing wrong with that--but you may need to slow down a notch there to continue on with this disorder as if it is fibro its not going away. You can work with it --learn ways to carry on and cope but Type A is not going to fly.

    HOpe that is useful to you.
    will pray for you,
    God Bless,
    arlenecm responded:
    The most important part of FM is getting your sleep I know its hard, but finding away to get a really good night sleep is key. Try meditation not drugs. There are some herbal things to try like melatonin or Valarian root with hops. Keep moving, yoga, swimming nothing that's hard on the joints. Sorry to say their is no adjustment period you have to learn to do things within your limits. Get a really good specialist that deals in FM.

    Good luck and someone is always listening. See if there are any support groups in your area.

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