Sorry, but this all sounds so grim......

Discussion in 'Fibromyalgia Main Forum' started by Kathleen12, May 24, 2006.

  1. Kathleen12

    Kathleen12 New Member

    I was hoping that I could find SOMETHING on here that would give me reason to believe that I do not have CFS. Was hoping that I have something that could actually be treated, and BAM...no fatigue.
    EVERYTHING I have read on here sounds like me. Brain fog, memory loss, not feeling rested, unexplained fevers, etc.
    I am so disappointed.....I don't want to live the rest of my life like this! I used to be very active and love the outdoors. I HATE this sofa that has become my home for most of the past 6 years! I am so sorry for my pessimism, but all this is kind of hitting hard for me. Now I just want to cry. Again.....I'm sorry for the downer.
  2. NyroFan

    NyroFan New Member

    Kathleen12:

    I am sorry you are feeling the way you do. Maybe it is time to be proactive and find a doctor or two who can get you off of the couch. I was the same way until I hit upon the right doctor who manages my pain, exercise program and meds.

    And you might want to invest in a large heating pad for those times on the couch. It really helps me.

    Feel sad, it's OK..just part of the process of what we have to go through. I am sure others can explain that better than me: it has to do with the grieving about our 'old selves'.

    You rest and take care.

    hugs,
    nyrofan
  3. windblade

    windblade Active Member

    Don't be sorry! This is a good place to grieve, vent and receive support from others. Many people have been able to improve their health to some degree.

    I used to be completely bedridden, even had a hard time turning over. Now I am up and about a lot more, and working hard still on my healing process.

    Don't give up .... there are things to do for help.
    It is a big task but at least it's hopeful.


  4. findmind

    findmind New Member

    I'm so sorry you're going thru the grieving process all over again. It seems every once in a while we feel we can actually be 'normal' and try to do something we used to be able to do, and

    WHAM, we are reminded things are different now.

    We begin to see that no, the old life we had is no longer. Sometimes we think about other things we could do to make our lives more interesting in order to feel we actually have a life!

    We can pursue a hobby we didn't have time for before, or find one that interests us to try out; we can become 'listeners' for others...I have yet to meet a person that doesn't need one!

    Find something to do with yourself, dear one, just grieve for awhile, and carry on, ok? We care....

    findmind
  5. jarjar

    jarjar New Member

    I was like your for so many years with the CFS or chronic epstein bar diagnosis. Brain fog, exhausted and disabled.
    Luckily I had another CFS sufferer kept pushing me to get an Igenex Western Blot taken for Lyme. I kept putting her off and saying I don't have lyme...I have classic CFS....
    WRONG....the test proved beyond a doubt that I was dealing with a lyme issue.

    I found a great LLMD that has treated all aspects of the disease from hormones to antibiotics and I'm getting my life back and looking at part time work.

    There is hope,

    jay
  6. TxSongBird

    TxSongBird New Member

    I am one of those people who suffers from Fibro along with other aliments and I still do stuff. I just go to bed earlier than I use to and try and not push myself at home too hard after a long day at work. I still have a great sense of humor, but I do have times when I could cry, we all do. Keep your chin up, you can get through the hard times, it will all come out in the wash as we say. No there is no cure, but the Doc's and scientists are working on it and hopefully there will be a cure someday.

    TxSongBird
  7. jenni4736

    jenni4736 New Member

    Honey you are now where many of us have stood.

    This is tough. You sort of MOURN the person you thought you "would be". We mourn all of the things that we suddendly remember we wanted to do.

    o.k.....get a good cry...and move forward.

    Read everything you can get your hands on. Give yourself the power and permission to take control and make a good life for yourself. Get a doctor that is willing to HELP you on your path to wellness. You may never be that person you thought you would. You may be destined for a different calling.

    Empower yourself. Be proud of who you are. YOu may need something that helps you. It sounds like sleep is a definate isssue. If you are not sleeping well, you will never be able to handle this bear. You need a doc that will get the sleep in order FIRST and NOW!

    Then see if you need to add an anti-depressant or pain control meds. When you hurt all the time, you can't handle anything, especially if you aren't getting decent sleep.

    If your doc is not helping you, find one that will. You have been suffering for 6 years, it sounds like it is time to try something new. New med are definatly in order maybe a new doc too.

    Crying feels good, but taking CONTROL OF YOUR LIFE FEELS BETTER! This DD is tough, put on your boxing gloves and give it the good fight girl!

    EDIT***
    I did not mean to imply that you we not allow to be sad,or cry, or express yourself.I hope I did not come over that way because that was never my intention.

    I heard myself in your e-mail. I was sick for a long time and I sort of just TOOK whatever it dished out. This is a great board with wonderful, supportive people who will always be here to support each other whether its a good time or a rough one. PLease know my words were intended to be one of strength and encouragement.

    This disease live in us. But I refuse to let it be who I am. I am bigger than this...and today I am stonger...SO TODAY,I FIGHT! I am sick on a lot of days, but I refuse to let it be all that i am and i hope you find some strength in my words.

    You are bigger than this disease... and you are stronger (even on the bad days).

    jenni


    [This Message was Edited on 05/25/2006]
  8. kriket

    kriket New Member



    We all do it here. Most of us either are or have been in the place you are in now. It kind of stuns you when you start researching and realizing that it sounds like you. It will be ok to share how you really feel. We all understand. Hugs!!!!


    Kriket
  9. Kathleen12

    Kathleen12 New Member

    I wish I could answer each of you individually, but I only have a couple of minutes here before I begin my first Anodyne Therapy session.
    I just wanted to thank you soooo much for all of your kind and supportvie words of encouragement. I am still very depressed about this, but this,too,shall pass.
    I want to find someone in my area who specialises in this disorder and who can guide me in the right direction. Maybe a test has been missed and that I do have something that can be treated and get me back to my old life again.
    I have Type1 Diabetes and that is so easy for me to live with. But this fatigue is more debilitating than the diabetes.
    Home Health came by today and said that in order for my insurance to cover the cost of the therapy, I must be "homebound". I never thought of myself as bieng homebound, but I am actually, for sometimes 3 weeks out of every month. This is embarrassing to me. I AM ONLY 43 YEARS OLD!!!!!
    Sorry to be rambling....I am NOT going to cry about it any more. I am going to do everything I can to make my life better and meaningful in whatever way I can. I just need guidance on where to begin. How do I find the right doctor? Maybe that should be step one.
    Again, Thank you all so much for your patience and support.

    Kathleen
  10. TxSongBird

    TxSongBird New Member

    Google your area for Dr.'s that treat Fibromyalgia and Chronic Fatigue Syndrome, believe me there are some out there.

    TxSongBird
  11. ellikers

    ellikers New Member

    It's not as hopeless as it may seem. Yes, this is a very frustrating bundle of problems for anyone to be dealing with but there are lots of things that can help. This board may be filled with a lot of venting because we are trying to get it out, but there are also lots of stories of recovery, feeling better and many resources to use while healing!

    Personally, I've been feeling great recently! That's why I haven't had as much time to be on this board, because I'm busy living my life. You can click on my profile and search for my story on the board to hear how I started getting better. Thanks to a combination of medications, herbs, vitamins, eating nutritiously, doing yoga and relaxation, good sleep, exercise, and seeing a therapist for a while, my body has started climbing out of the hole it was in.

    I wish you all the best. Do you have a doctor or any sort of medical professional that can help you get diagnosed and treated? Two books I recommend reading (they are helpful resources and supportive) "From Fatigued to Fantastic" by Jacob Teitelbaum and "Living Well With Chronic Fatigue Syndrome and FIbromyalgia" by Mary J. Shomon.

    Take care!
    - Ellikers
  12. Mikie

    Mikie Moderator

    There are things which have worked for some of us. Do you have a good doc? If not, try to find one. It's only normal to let these illnesses get us down. We wouldn't be human if we didn't feel this way.

    My prayers are with you.

    Love, Mikie