Scared!

Discussion in 'Fibromyalgia Main Forum' started by sarahkate, Aug 11, 2005.

  1. sarahkate

    sarahkate New Member

    Hi everyone. My name is sarah and I am 23 years old. When I went into the doctors this last week I thought I would be told that whatever I had been dealing with over the last 6 months would go away. I was trying to be positive knowing that my symptoms were really getting worse. So the doctor told me I have FM and CFS. I didn't have a clue what it was. I have known this for a week and while researching it I have become scared. I don't know anyone else with this condition and I have already had problems with work. I am scared about the pain and fatigue and all the other things that come along with it. It sounds like some of you have been dealing with it for quite awhile. If any of you have any advice or encouraging words that would help me get over this shock and into my new lifestyle it would be great. Thank you Sarah!
  2. Jo29

    Jo29 New Member

    My daughter,who is 23 also, is going next week to see if she has FM and CF. Her reaction was the same. You girls are soooo young and have so much life left to feel this way all of the time.

    She just cried when she discovered that she was going to feel this way for the rest of her life. She also thought that she was going to be able to get over it.

    She is also having trouble at work. If you don't have your arm in a sling or something no one thinks you are feeling bad.

    I will tell you the same thing I tell her. After you get over the shock of having FM and CF, you will be able to take the advice of the many wonderful and educated people on this board just as I have. They are here for you and will help you. My daughter at least has been around me and I have FM and CF. So she at least knew what to expect.

    I am sending you a big hug. My heart goes out to you. My advice is to learn all you can about FM and CF, and don't be afraid to ask anyone here questions. You might also ask your doctor if there is a support group in your area.
    Jo
  3. craziC

    craziC New Member

    Welcome to the board! I'm glad you found us but so very sorry to have to deal with FM/CFS. I'm 28 and was diagnosed last year although I've had symptoms for many years. It is difficult dealing with a life-long illness when you're so young. My advice is dive into a treatment - anything! What works for one may not work for another. First, you might want to start taking a Magneseum/Malic Acid combo. It helps with the muscle cramping/spasms. Alot of us with FM take this and it does help.

    Also, don't expect all of your symptoms to go away when you try different treatments. Focus on improvement. It's trial and error. There is a ton of helpful info on this site about different options, meds, supplements. Of course, check with your doc before you begin something new. Especially if you're already on any meds.
  4. lvjesus

    lvjesus Member

    that once you get over the shock, you will feel better. I felt the same way you did when I started reading all that COULD happen, and I stress COULD. I was obsessive about it when I found out I had it. I read, read, read about it all the time. I thought, thought, thought about it all the time. I talked, talked, talked about it all the time.

    I read about IBS, and disability and fog and being housebound or in a wheelchair and worried, worried, worried about it and what was going to happen to me.

    Here is the reality of ME (and I stress me because we ALL have it different) almost a year and a half later (seems like much longer since my dx). I have pain every day somewhere. It is usually so mild that I do not even take anything for it, no tylenol, no advil, nothing. It is just annoying sometimes, but mostly I am just used to it. Everyone struggles with something. That is just how life and these frail bodies are.

    The fatigue was off and on, sometimes bad, sometimes not. I left work a couple of times for it, but never have missed a whole day for pain or fatigue. Many days I did tough it out until quittin' time.

    The fog for me is not bad, just more when I am tired. I started to get some major issues with light sensitivity, did some research and got a script that took care of that right away.

    You need time to adjust. It is scary to read all that could happen. Why have I not gotten worse? Well, I have gotten worse in the sense that I have more symptoms, but all are fairly mild and I just accept them and go on (sometimes blurry vision, I got reading glasses of various strenghts for that, sometimes mild dizziness, sometimes pain here or there, sometimes stiffness).

    I think it has helped me that I did not search and suffer for years before finding out and starting to fight back. I found out soon after starting with mystery pains. The doc gave me Elavil, for sleep and pain, and I found this board.

    I read what people here did for the things that bothered me most and tried it. Magnesium is the main suppliment that I take because of what my friends here said.

    When other problems arose or became disruptive to my daily life, like the extreme light sensitivity (think flourescents), I asked for help, got answers and went for another script, which I got and it worked.

    I have been to the doctor only 3 times since being dx in March of 2004. I went once for Xanax for panic attacks, then once for Klonopin for the sensory overload (lights) and then the third visit actually was an extention of the second because the PCP referred me to the rheumy.

    All of that is to say this, there is nothing set in stone that says you will wind up disabled, etc. I know that many are. I am just saying don't read that and take it as your fate.

    I think much of your fate depends on you, your attitude, how proactive you are in finding treatments and solutions that work for you.

    It will take time, but don't be obsessed is what I would want you to get out of my journey, if you can. Once I came to the realization that I HAVE fibromyalgia, I AM NOT fibromyalgia. I am me and I have a condition. Having a condition does not make me worse off than other people who don't "have a condition" that have pain or fatigue or whatever.

    My husband does not "have something" but his back has hurt for years, his shoulder has bone spurs that are very painful, he has had daily headaches off and on the whole time I have known him (12 - 13 years) and before. He is working 56 hours a week in the heat and is a welder. When he comes home he is tired, often more than I so we share the load. I used to be irritated when I would mention pain or fatigue and he would say "me too". Then I decided I needed to get off my pity pot and realize the world does not revolve around me and my "condition".

    I also got mad, in a way. I have given in many times when perhaps I could have pushed back a bit. Now I do more than I used to when tired or hurting because I feel like taking control, not letting it control me. You have to know you own body.

    I know I can SOMETIMES fix dinner and clean up after before I collapse instead of laying on the couch. Sometimes I push and hit the wall, then I quit. Sometimes my back hurts, but I do what I feel like needs to be done and then I rest. Some cannot do that. If you cannot, don't feel bad. If you can't, you can't.

    My point is DON'T GIVE UP. Fight back.

    Sorry this is long, hope it helped and made some sense.

    God Bless,
    Sonya
  5. WoodstocksMusic

    WoodstocksMusic New Member

    Welcome to the best board on the web for Fibromyalgia!

    I am so sorry you are dealing with this at such a young age. You will find many answers on this board.

    You will also find that what is working for some does not work for others...you will need to determine what stage you are at and what you need most.... sleep / pain relief / sleep / pain relief / sleep..... vicious cycle we live in.

    I have often asked which came first the pain that caused me to lose sleep or the loss of sleep that eventually brought the pain???? I have not really answered myself yet.

    Remember this...pain meds which put some out like a light will make some hyper and unable to sleep.... I learned after a year of fighting for sleep that my pain meds were keeping me up all night...sigh

    But now I use those same pain meds first thing in the morning (when I need pain meds) and after 2pm I will NOT take a pain pill!

    This seems to make me hyper enough to move around in the am....moving of anykind is exercise for the body.... and then I would be tired enough that with a sleeping pill I could get 7+hours of sleep.

    I seldom take a pain pill or a sleeping pill these days and 3 years ago I was totally housebound and almost totally bedridden for a 2 year span!

    You will eventually find things that work for you and once your body is rested you will find things better!

    Good luck and welcome again to our wonderful family.
  6. Rosiebud

    Rosiebud New Member

    dont be scared but do gather all the information you can. You'll find lots on this board.

    My daughter was diagnosed with CFS/Fibro after glandular fever when she was 15 - she's 28 now, got all her exams despite missing school - got her first degree - worked - married and is now doing a social work degree. Yes, she still gets ill but she is not incapacitated by this horrible illness and she has a life.

    If I sound like I'm boasting about her, it's just that I'm so proud and so thankful that she has a life and I want to show you that there's hope.

    It's true that many younger people are stronger with this illness, I am disabled by it as many people are but so many others are not.

    Please stay on the board, you'll get loads of information and support.

    love
    Rosie

  7. hollie630

    hollie630 New Member

    Hi, I am 25 and was diagnosed with FM yesterday afternoon. My mom was diagnosed at 35 and my grandmother about two years ago. I think I am comforted a little in the fact that FM has never been debilitating for my mom. I am hoping I will follow her course. My pain is only annoying at this point, usually not even bad enough to take anything. My problem is numbness and tingling. I feel like my limbs are almost asleep all of the time. Does anyone else have this problem?
  8. Francey54

    Francey54 New Member

    Hi Sarahkate:

    I understand what you are going through. I too was so scared when I was diagnosed 5 years ago. I had been feeling awful for about 5 years before the diagnosis.

    The only thing I can tell you hon is that don't be scared, you are very young and your system is probably stronger than many of us here who are in their 40's and 50's. I am sure your doctor will give you something for the pain, if you have insomnia, something to help you sleep. If you get depressed there is help for that too.

    Just know that you are not alone. We are all here for you and you can write to us anytime you feel the need. We give each other a lot of support, comfort and many hugs.

    I pray will pray for you little Sarahkate.

    God Bless.

    Francey
  9. lilaclover30

    lilaclover30 New Member

    You are so very young but you have the years ahead of you that will probably find a cause, etc. I know it has to be so very hard when you have a husband and children and a life ahead of you.
    But don't give up. I have been on various meds. and I think have found the right combination. Sure, I have bad days - I can't deny that but some days will be better than others.

    I have always been the caregiver and I am not a very good one right now and that is the hardest. My hubby has had 3 heart attacks, heart by-pass surgery, and 8 operations that resulted in leg amputation. And guess what? He can still smile. The FM doesn't make him smile much but we handle it together. As long as your hubby has a smile for you, that makes you able to handle it all much better.

    Read, read, read. Scan the Internet for info. But you will find that this board is by far the best. We can all listen to you, let you vent if necessary, you can tell us over and over when you are scared, you can tell us of your triumphs that you experience with life.......just anything. We are here for you. Welcome to the best group of people in the world!!!

    Gentle Hugs