ALL THIS INFORMATION ON FM AND I AM STILL LOST

Discussion in 'Fibromyalgia Main Forum' started by janferg, Sep 26, 2006.

  1. janferg

    janferg New Member

    I am still new to all of this information on Fibromyalgia and I still really don't understand all of it, none of my Doctors have been a help to me.

    I was told that I had Fibro on Nov 4th of 2004, and was also told that it will never go away and that there was nothing that anyone can do for it, I was given meds to help me sleep, get started in the morning and to help with the pain and acid re-flex, along with irritable bowl syndrom.

    I have had alot happen to me in my life and have always been around to help people out in anyway, but now I feel that I need alittle help and no one knows how to help me in anyway, the doctor's I have had are not to good, you guys talk about test that you have had, well they have never really put me through any testing just blood test and really that's about it.

    I have had to go into the emergency room 2 times now for pain in my chest, but they just give me more pills and send me home.
    I don't think my family really knows how to help, they really don't talk about it much, I just started talking about my illness in the past few months when I found this chat site, it has really been a big help.

    Anyways I don't really know if I am making any since with all of this but I just wanted to see how you all keep on going sometimes I just feel like I will wake up soon and it will all be over!!!

    I tell everyone that I am not going to give into this illness, I am going to just keep on going, but lately it has been really hard to do this, I went to Sea World the other day and I was in so much pain I thought I was going to break down crying in front of everyone, but no one around me could even tell that I was in pain, I think sometimes that that is what hurts to most about this illness is that you look fine, and that is ok, but you feel so bad and no one knows...

    My birthday is the 28th of this month and yes I am a libra, so for all of you out there with your birthdays this month you all know how libras are they are very giving and caring people, I have always been a very caring person and I guess that is what people have noticed the most about me, is not my illness but that I have changed I am not as caring anymore, and I really think that comes from not feeling well and I forget dates all of the time, and I guess right now I just don't have anymore to give.

    Thank you soooooooo much for listening to all of this...

    Take care everyone,
    Jan
  2. jole

    jole Member

    My b-day is this month too, and that part I really relate to. The doing for others for sooo many years, and now not having the energy to do anymore. I don't even remember to send my own kids B-day cards! How terrible is that??

    As far as the other, my doc is not good with FM/CFS either. I learn from this site and then ask her if she is willing to try things for me. She is good about it; some are not.

    The general concensus is, I think, that we have to be our own advocate and do most of the work ourselves. We know more about us than anyone else does, and so much is just trial and error for each of us anyway.

    That's what makes this all so darn hard. When a person feels this bad, it's not easy to find the energy to do what we should for ourselves, and learn to let other things go.

    I hope you can keep looking and find a doc that is more responsive to your needs, and continue with this site - it has soooo much good info. Best of luck to you.

    Friends - Jole
  3. soretracy

    soretracy New Member

    I know what you mean. I said I wasn't going to let this disease get me down either. but it just takes so much to keep fighting it and I don't have any energy or strength left to take charge and fight the disease.

    I've been trying to keep a positive attitude and remember that God has a plan even in this, but its getting harder to keep that in mind when I can barely function through each day!!!

    I'm so tired of being tired. Reading of others fightingthe same fight gives me another wind and am ready to keep trying to fight this disease!!

    t
  4. Rebeck

    Rebeck New Member

    DEAR JAN, I KNOW JUST EXACTLY HOW YOU FEEL, I HAVE HAD FIBROMYALGIA FOR OVER 10 YEARS, AND THEY KEEP DRAWING BLOOD EVERY TIME I WENT TO THE DR., THEY THOUGHT I HAD LUPUS, BUT MY DR. WENT TO A SEMINAR ON FIBROMYALGIA AND CAME BACK TO TELL ME THAT IS WHAT I HAD,USUALLY THEY CAN TELL BY THE PRESSURE POINTS, WHICH I CAN NOT STAND FOR ANYONE TO HUG ME OR TOUCH ME ON MY LEFT HIP AND BACK, I AM A SOLID PAIN, DON'T LET IT GET YOU DOWN IF YOU CAN HELP IT, IT EVENS HURTS FOR ME TO TYPE, WHEN YOU NEED TO REST, GO AHEAD AND REST, I MEAN FOR THE ENTIRE DAY IF NEED BE, DON'T PUSH YOURSELF WHEN YOU CAN'T GO ANY FUTHER,I HAD NEVER HEARD OF THIS UNTIL I WAS TOLD BY MY DR. AND I RESENTED IT, FIRST SAID I WAS DEPRESSED, IN OTHER WORDS WHICH COMES FIRST THE DEPRESSION OR THE FIBRO, THE FIBRO WAS FIRST WITH ME, I THINK THE BEST THING THAT HAS HELPED ME IS WATER AROBICS, MY DR. WROTE A NOTE FOR ME TO JUST WALK IN THE WATER, NOT TO TRY TO KEEP UP WITH A WORK OUT, AND I WENT TO THE Y AND THEY WERE SO GOOD, MOST EVERRYBODY HAD THE SAME THING, THE ONE THING IS THAT I WISH I HAD DONE WAS THE WATER EXERCISE WHEN I FIRST GOT IT, I KEPT PUSHING AND THE PAIN WAS REALLY BAD, AND DUE TO THAT I GOT HIGH BLOOD PRESSURE, THEN THYROID, AND NOW PERIPHERAL NEUROPATHY, IN MY LEGS, FEET AND HANDS, SO PLEASE DON'T PUSH YOURSELF WHEN YOU DON'T FEEL LIKE DOING IT, CHECK WITH YOUR DR. ABOUT THE WATER EXERCISE, IT CAN'T HURT YOU. GOD BLESS AND GOOD LUCK [email address removed as per rules]
  5. IntuneJune

    IntuneJune New Member

    The board can be very overwhelming due to the amount of information.......

    Try not to absorb everything at once, you will exhaust yourself.

    Jole said it nicely, we do have to find our own way!

    You can see, we are a large group of folks and we have taken many different approaches.

    A good solid foundation is a book by Dr. Devin Starlanyl "Fibromyalgia and Chronic Myofascial Pain" which most libraries have. She also has a web site.

    I like the book though, I used to read it relaxed in bed rather than at the computer. It sets a good foundation. For me, it was grounding.

    I am glad Prickles dropped in with her suggestions....

    And from the other posters (sorry cannot remember any more names) you get the general idea this is a caring bunch of people.

    I love working out in the water, that and myofascial release has been the best! I was DIAGNOSED over 25 years ago. Also do magnesium (and calcium). Klonopin at bedtime.

    Good luck, sorry there is no MAJIC pill.

    Fondly, June

  6. mlnitzen

    mlnitzen New Member

    When I read your post I thought "this is sounds exactly like my situation" (even down to the diagnosis date). I don't know about you, but I am very grateful for all of the posts. The only problems is there is so much information to sort through that I am feeling a little overwhelmed. I know there is no advice here, but I just wanted to say - We are in this thing together!
  7. 69mach1

    69mach1 New Member

    it think when they figure this all out we all be a happier

    jodie
  8. debbym

    debbym New Member

    Jan,

    We all have been where you are. I finally started telling people why I couldn't go here or there. It was like torture instead of pleasure. I still go to places if I am having good days but when I have to sit I do . Don't feel bad for going to bed when you have to. Tell them or write them a letter discribing what hurts where and when. They will forget so you will have to remind them you are not what you used to be. But do go when you can. Massage therapy is great. Find a massage school near you and tell them if any body needs someone to practice on you would volunteer. Make sure you tell them if you have a pressure point they should not touch cause I ended up with severe pain when I gave her permission to massage my lower back. Couldn't move much for 2 weeks.
    Good Luck
    Deb
  9. NyroFan

    NyroFan New Member

    Jan:

    I know how you feel. It usually passes for me and I try to stay on track. It is so difficult though.

    nyrofan
  10. jenni4736

    jenni4736 New Member

    Welcome....I know it is very frustrating sweetie! I have had FM for over 12 years. The one thing I have learned is the more I know about FM...the more I realize I don't know.

    It is a tough DX.SOme doctors can't agree on the Dx much less treatment for it. It is different for every one...common symptoms but reflecting differently in each of us. It makes it difficult because it changes daily even within ourselves.

    We all go through stages I think. Some days we feel strong, and others we are so beat down we can barely brush our teeth. The brain gets exhausted the most I think, for me anyway.

    I think FM is kind of like being a parent. Everyone has a different opinion on how to do things. Every doctor has a different way of handeling the symptoms.

    At some point, you have to take all of that infomation....and find what works for you. It takes years to tweek the medications...and your needs will change over the years. It IS managable though. Find a doctor that really listens to you. If you have one that you can communicate with that is half of your battle.

    Happy Birthday....stay strong....Hugs....

    Jenni