NOT WILLING TO GIVE UP

Discussion in 'Fibromyalgia Main Forum' started by Kathleen12, Sep 23, 2006.

  1. Kathleen12

    Kathleen12 New Member

    After going through a few weeks of being sad because no one can figure out what's going on with me, I finally said "ok...Uncle! I quit trying."

    I saw my Endo and he released me because he doesn't know. He said that all his patients have Fibro as the major problem with some fatigue. I, on the other hand, have no pain but extreme fatigue. So he did some brain-storming and wrote down a bunch of things to consider getting tested for and told me to take the list to my GP.

    I left there so dejected and went to my GP with the list and he looked at it and told me that this was all "House" stuff, but we could get as crazy as I want. He didn't offer alot of hope for these tests and they are costly.

    So I started crying and told him that I don't wnat to give up and live the rest of my life like this. He had compassion and told me that he would call some of his collegues to find out if there are any doctors who have studied in depth on this and refer me to him/her if he finds anyone. I believe he will, too. He told me that I may have to travel, and I don't mind that as long as I think someone has some working knowlege of this.

    So here I sit, waiting for the call from my doctor. I will be going to California on the 3rd of October to visit my uncle for 3 weeks and I am hoping that my energy will be up enough to be able to enjoy the visit.
  2. monicaz49

    monicaz49 New Member

    I totally sympathize with you. Actually i was just at the doctors yesterday doing the SAME exact thing. i have seen many docs who have been no help but i hate giving up. my fatigue is the worst! its haaaaaard to deal with. and i am a single mother.
    it makes me anxious, etc.
    i asked for a referal to see a rheumatologist...and she didnt think it was necessary but she agreed to. she assumed fatigue=depression.
    A DIAGNOSIS is very impt to me...but i havent received one.
    I know i have some candida issues also....
    What part of CA are u visiting??? I am from Cal.
    Good luck with your search for help. We all need as much support as possible. I wish there was something we could all collectively do to bring this out to the public more. And to be taken seriously.
    :)
  3. Kathleen12

    Kathleen12 New Member

    I hope I got your name right. I forgot what it was by the time this page came up....LOL.

    Any way, I am going to a small town called Placervile. It is a little notheast of Sacramento. I may go on up to an even smaller town called Greenville. I love it there!

    I am so sorry that you, too, are going through the same thing I am.

    I must make a correction though with my post. I saw a rheumotologist, not an Endo. The Endo treats my Diabetes, LOL.
  4. Kathleen12

    Kathleen12 New Member

    Thank you so much for your reply to my post and the suggestion you gave me. I have not looked for your post yet but will as soon as I finish with this one.

    Due to my despondance (giveing up) I have not been on the board at all for a while and have not yet read anything. I know that there is really nothing left on these sites that can benifit me nor that I can benitit anyone else.

    I now have a little renewd hope and will be here a little more often now. Thank you.
  5. Marta608

    Marta608 Member

    What did I miss?? This appears from here to be so typically CFS!

    With a wonderful smile like you have, who'd know you were tired or, as we hate to hear: But you LOOK so good! ;>)

    Good luck in California. My son will be coming FROM there in two weeks. JOY!

    Marta
  6. carebelle

    carebelle New Member

    I only had Fatigue for several years before I had any pain

    now I have both. If I knew then before the pain what I had I would have rested more and prepared my self with as much knowledge ahead of time like learning things to help me deal with the pain when I got it.

    God forbid you get the Pain but if you do or when you do know what people do to help them selfs. Meditation can help some with Fatigue .Exercise now you may not be able to later. Get as healthy as you can with your diet. All those can help prepare you to deal with what ever happens .

    The better you take care of yourself now then you will know how to treat yourself as time goes by.I hope you find a good Doctor.
  7. zenouchy

    zenouchy Member

    I wish you all the best in finding the answers you deserve. Sending you prayers and hugs and wishing you a great trip to California so you can relax and take a breather from all the stress. Warmly, Erika
  8. shar6710

    shar6710 New Member

    I too had fatigue for the first 2 years the pain really set in after that.

    I read your profile and I was very much like you-always outside. I haven't ridden since Feb 2004. I look out the back window and can see my two horses, my straw covered garden, my fruit trees and bushes and I want to be out there. But I can't. It took me 9 months from my dx of CFS to accept that I may never be able to work with my horses again but if I can just take care of myself I hope to at least be able to groom them again.

    Right now I am very sick, pretty much bedridden. I'm always bad this time of year ( maybe because my allergies kick in?). But I have faith that I will be a little better if I rest. Once I'm able to be up and around more I am determined not to listen to the taunts of the weeds and tangled manes and overdo.

    Haleycole (sp?) has some great posts about push/crash cycles and living within your energy envelope. I am trying to read through all the info myself now. You might want to take a look too.

    BTW, I lived in Biloxi-actually Keesler-my dad was in the Air Force. I hear our house was destroyed by Katrina.

    Best of luck to you,
    Shar
  9. Kathleen12

    Kathleen12 New Member

    It is good to see another fellow equestrianne on here! I have often said that even if a horse were groomed, tacked, and pulled up to my fromt porch and someone lifted me on, I still would not be able to ride. Such sadness...

    I did go down to the facility where I used to work and helped feed treat the many minor injuries that come along with a herd of horses. It was GREAT to get the smell of horse on my hands again. I did not wash them for two days, LOL.

    Do you know where Kiln, Mississippi is? that is where our facility is. It is called Gaits to Success. A small center but it is growing and improving by leaps and bounds now that we have a new director. We had quite a few volunteers who came out to help from Keesler a few years ago. They were WONDERFUL to work with!

    I have also been reading about the push/crash by Bruce Campble, and it makes sense to me. But that is not a "cure". It is good management though until we can get down to the bottom of this. I do hope you start feeling better soon so you can at least get the dust off of your ponies' backs. Don't even try to comb out the manes and tails unless you know you have all day to do it and your energy level is unstoppable, LOL!
    [This Message was Edited on 09/23/2006]
  10. shar6710

    shar6710 New Member

    I have heard of Kiln but never been there. Is that where Brett Farve is from?

    I know what you mean about not being able to ride even if you didn't have to do any of the prep. I don't have the balance to ride anymore even if I managed to get on. I have an Icelandic mare, bought her so I could just hop on bareback and go, but got sick about 2 weeks after I got her. I thought about getting a cart and driving but I'd be exhausted after harnessing up.

    Did I miss it or have you been dx with CFS?

    Shar
  11. Kathleen12

    Kathleen12 New Member

    My neighbor has an Icelandic and they are so broad in the back which makes for a PERFECT bareback ride. I would like for our center to consider an Icelandic for our students. They seem to have a wonderful disposition for this type of work. And also a good gait for therapy. Plus haveing a short stature makes them easy to sidewalk and ease the anxiety of some students.

    To answer your questions, Kiln is the home of Brett Farve. There is a convenience store there that has an outside wall dedicated to Brett Farve graffiti. The whole wall is filled with people from all over the country supporting him. He is the home-town idol there, though I don't care for him too much. Got to hand it to him, though, he donates yearly to our center!

    Also, yes, I do have CFS. Only been "diagnosed" about 6 months ago, but have had it for about 5 years. It has slowly progressed to where I had to quit work and am now pretty much house bound with a few weeks of "remission" in between.
  12. hermitlady

    hermitlady Member

    I used to live in Sacramento and I know the Placerville area too....very nice place. Have a nice trip, wave to my inlaws as you pass Sac! LOL We were up there July 4 and also went to Grass Valley. I would love to move back up to N CA, as I'm in So CA now, yucko.

    I'm at a GIVING UP phase right now, need to swing myself in the other direction. Just want to magically wake up w lots of energy and no aching!

    Best wishes....xxxooo Hermit
  13. Kathleen12

    Kathleen12 New Member

    I know where Grass Valley is. One of my aunts used to live there. She has since moved to Auburn.

    I am sorry that you, too, are in a slump and at the "give up" point. I hope that soon you'll be able to find one more string to pull yourself up with. I just wonder if we don't all go through these "phases" at some point.
  14. shar6710

    shar6710 New Member

    I posted a picture of my fat girl in my profile-she needs exercise! Her name is Vaenting. She is very short, her back comes just to my armpit so she gets lots of hugs!

    Back on topic: I know how frustrating it is to be so extremly fatigued. But if you have had the basic labwork to rule out the other usual suspects for fatigue and then were dx with CFS than you should accept it. And I don't want to preach because god knows I am as guilty as anyone about pushing too much and I also have worn myself out searching for a cure. But there isn't one, yet. The best we can do right now is manage our fatigue as best we can until we're either better or science figures it out.

    I'm going to start using the log like Bruce Cambell suggests. I had thought of doing something like this before but was afraid I would become too obsessed with my illness. But I think I can look at it as a managment tool and make it a very positive thing. Actually I already had figured out a lot of what he says, I guess I just needed some guidance to implement it in my life.

    Please try to rest and reduce stress in your life for your sake. I hope this doesn't sound too preachy. I just want to help out a fellow horse lover and I hope someday to read here how much better you are and that you are riding again.

    Have a good trip!
    Shar