Just Diagnosis with Fibromyalgia, Not sure how to handle this

Discussion in 'Fibromyalgia Main Forum' started by CgWife, Jul 10, 2006.

  1. CgWife

    CgWife New Member

    Hi, I was just told by my Dr's that I have fibromyalgia and was told that there is no cure and that I will always be in pain. I find that rather depressing, I sleep sitting up on a pile of pillows because I cant take the pressure on my neck and shoulders. My hands go numb or my fingers will throb and send sharp shooting pains into my hands and wake me up (if I am actually sleeping). I am still learning more about this disorder. Can anyone share their story, and what they do about it. The funny thing about this whole thing is that I have everyone of the symptoms of this disease and I have had it for over 13yrs and had serveral surgerys just to find out this is what I had all along. I have the Irritable bowel,panic attacks,
    restless legs,mirgraines,insominia,depression the whole thing and just now getting the right diagnosis, how depressing. I dont know what to do about a job? can anyone help me?
    signed Confussed
    CGWife
  2. eeyoreblue02

    eeyoreblue02 Member

    Welcome to the board. Sorry you are having to deal with all the problems that go along with FM.

    One of the best things I have found for pain is a supplement that is a combination of magnesium, calcium and Vitamin D. Recently when I ran out I was waking up with a backache every day. After getting another bottle it only took a couple of days to feel the difference.

    Getting enough sleep is vital. I know it's hard for most of us, especially when we have kids and other things going on that require us to be available to our families. I take a 30-minute nap in the day if necessary. Anything over 30 minutes messes up my whole sleep pattern.

    Keep asking questions on this board. No matter what you need to know there is usually someone with an answer.

    Hang in there,

    Linda
  3. hugs4evry1

    hugs4evry1 New Member

    Hello and welcome to the board.

    Many of us here have posted what's helped us out on our way to wellness.

    If you click on my name next to this post and look for the title about "things I've done on my way to wellness" you'll see my list and how much it's helped me since I've been in a flare for almost 2 years.

    Yours sounds like a classic case and you'll find so much information here to help you. Much of it will be easy and basic.

    Try the suggestions like a great multi vitamin. I've recently tried the Pro Health Fibro Complete Multi w/Malic Acid and it's wonderful. I had more energy than I've had for 2 years in 2 days of starting this!!!

    The magnesium suggestion is a must for folks like us. Magnesium relaxes our muscles and we can't get enough from food sources.

    And read, read, read....there's so much information on this board. Since we're all in different stages of illness, some can actually do the research for us!!!

    Hugs,

    Nancy B.
  4. KateMac329

    KateMac329 New Member

    Hello and welcome to the community!

    You will meet many wonderful people here who will help you through this tough journey!

    When I first got diagnosed back in 2002 it was devastating!

    I mean you finally get a name for what is wrong with you but are told there is nothing you can do about it.

    Well they are wrong! You CAN do something about it but you have to be your own advocate!

    RESEARCH RESEARCH RESEARCH RESEARCH RESEARCH RESEARCH

    THAT will be your best friend! You will find so much stuff on FM and CFS that it can actually be overwhelming! But keep with it because it will pay off.

    Something to remember is that what works for one person does not necessarily work for another. For some reason we all have the same symptoms but need different combinations of treatment.

    Believe it or not exercise DOES really help! There are a lot of people on here who will probably disagree with me but I am simply stating what works for me. AND...exercise works for me.

    I have to really push myself to get out there and do it too and some days I feel like I am going to die either from the pain or from the exhaustion but I know that NOT doing anything will only make me worse.

    I was in that boat once and made a vow to myself to never be there again! (After my initial diagnosis I went downhill and fast! I was so sick that I literally spent the first year of my marriage on the couch! YES, I was THAT bad!)

    So even if all you can do is just walk up and down your street once!, do it to get those muscles going! DON'T let yourself get atrophied!!!

    Water! DRINK DRINK DRINK DRINK DRINK!!!!!

    Not only does water keep you hydrated but it flushes out toxins in your body, protects your joints and regulates your body temperature! So get drinking sister!

    Cut out the sugar! And I don't mean that you can NEVER have another piece of candy or pie or whatever your vice is but just eat those things in moderation.

    Sugar is bad for us! Big time! Well I mean it is bad for anyone but sugar actually promotes fatigue!

    Eat a lot of raw foods! Before you even start, keep a food diary and you will be surprised at how much raw food you probably already eat.

    The less food is processed the better it is for us! You will find some posts on this board that have some good recipes and to find them just go to the search box and type recipes and it will pull up a list of posts.

    Get your sleep! I still can't sleep without a sleepaid but one day I will. I just need to figure out how to relax enough to do so.

    I also keep a journal of quotes that help keep me motivated and look through it when I feel I am letting myself down. Which if you are a perfectionist like me, well you know what I am talking about! LOL

    Um, there are about a million things I could sit here and write to you but this is your journey. You will try so many things and find that maybe only a handful of them work for you but that is a start.

    A book I would like to recommend is "Prescription for Nutritional Healing" by James and Phylis Balch. It is wonderful and gives some good ideas on how to treat FM and several other diseases and ailments.

    Well I am sorry this is so long. I hope I helped a little. I am no expert! There are many on this board who are much more informed than I am but I thought I would welcome you and let you know what works for me.

    (((((((HUGS))))))

    kate

  5. laura3951

    laura3951 New Member

    hi i know how you feel i was dx with ra in march i spent two weeks on the couch. then i decided to do all i can, there is no cure but we can do what will make our daily lives better. i am scared to death of being crippled and not being able to do with my children but i am gonna fight, give yourself some well deserved wallowing time then start the process of acceptance. missy
  6. onlythestrong

    onlythestrong New Member

    One day at a time that is how we all do it.
    And most importent NEVER give up hope.
    Good luck and hugs to you,
    Mary
  7. CockatooMom

    CockatooMom New Member

    So glad you found us!!

    I learn something everyday from the fantastic and knowledgeable people on this board (My family)

    Exercise helps ME also.

    Drinking lots of water helps me.

    I'm going to start working on diet changes, but am EXTREMELY fearful of giving up ice cream. (my drug of choice)

    Good to meet you, and welcome again!
  8. nice2meetu

    nice2meetu New Member

    Welcome to our humble abode!

    This is it. The place to get info and friendship with others who know first hand what FMS and CFIDS can do to a person! Search out your answers above and you will find many things directly related to this wonderful disease.

    You and I started the same way. With similar symptoms in the neck and hands etc. Sleeping is very hard for me. Pillows have to be just so.

    As far as what the DR said, I know of many people who have had remissions (for lack of wording) of a sort where they become less painful and have many good days. But that how this is good days and bad days.

    Don't fret it isn't good for you and it only makes you feel worse pain wise.

    Find a way to release your stress. I use music and writing. It helps ease the inner turmoil.

    Yes, it IS depressing. But there are worse things that can happen to us.

    And BTW I've had this for over 20 years and thought it was "all in my head" ...but it wasn't!
  9. daymom

    daymom New Member

    I have all your symtoms ,and i have found the only way to live the rest of my life with it is to learn to live with it.... this is my new approch to this crazy disease. I have tried everything and now I understand if I do not learn to live with it it will control my every move. The best thing I did was hypnosis we have a Fibro group in rhode Island that meet once a week with a hypnotist and he is teaching us how to relaxe. and how to use self hypnosis it is wonderful and has been the only thing that has even touched my symtoms. I do not think there is any Doctor anywhere who realy know how to stop this pain we all live with everyday. Yes the pain is still there but this is my body and I must be strong and move on. Someday you will understand what I mean. The more you learn about it the more you understand. Fibromyalgia Show me where it hurts is a wonderful DVD I just watched it is a great souce of imformation. www.lifebeyondpain.com try to keep your head up high. learn to live with the pain do not let it live with you.
  10. CgWife

    CgWife New Member

    Wow, I can't believe all the support I am getting form this group. Its awesome. I have a supportive Husband as well. Thank you for your encouragement, I have been felling alittle down since being diagnosed. I think that is part of Fibromyalgia? I am still learning more each day about this. I will keep in touch, if you don't mind maybe we can encourage and support one another.
    Thank You!
    Blessings!
    Deborah
  11. CgWife

    CgWife New Member

    Thank you for replying, I was wondering about which supplements to take, What do you do for energy? any supplements for that? I too stay in my pj's all day if I am not going anywere, it is a big hassel to change into clothes when you don;t feel like going anywere. That is the hearest thing about fibro, I feel like it is in some ways limiting me. I just fell frustrated!
    Thanks for listening.
    Blessings
    Deborah
  12. CgWife

    CgWife New Member

    Thank you, I will look into that web site. I am trying to live with this. I think because my diagnosis is so new to me that I am in a state of disbelief right now. I just can't seem to do anything lately. I know this will pass, Thanks for your support!!
    Blessings
    Deborah