Does Anyone Else Feel Like I Do?

Discussion in 'Fibromyalgia Main Forum' started by Hippo, Jul 14, 2003.

  1. Hippo

    Hippo New Member

    I must confess sometimes I feel a bit envious when reading the board and seeing the progress some folks have made. Happy for you, of course, but I have been sick for 20 years and have made no significant progress. I am actually to the point where I am a bit tired of trying new therapies. Sorry to be so downbeat, but I have lost count of the number of medicines, supplements and therapies I have tried.

  2. Julygal

    Julygal New Member

    and I've only been diagnosed for 4 yrs! Of course, I realize now that I've had these DDs for years! Constant pain is enough to drive us all over the edge.
    The only things that really have helped me are prayers, support of husband & friends, & a few medications - that only take the edge off of the pains. I pray that you at least have a good support system. I treasure that so much, & I have FMS friends who do not have that support. I really pray for them & try to lift them up.
    It's so difficult to think about this being our life! I TRY not to think of it that way, & just pray for God to use my sufferings to benefit others. He tells us that His Strength is made perfect in our weaknesses. Sometimes when the pains are especially bad I say, "Lord, this must really be helping someone out!" Ha! I'm so humanly weak that if I didn't believe with all my heart that there's a purpose for everything, I'd never survive!
    I promise you my prayers always. God bless.
  3. stillafreemind

    stillafreemind New Member

    I am just the opposite on the good news stuff here. I think its because I believe we are all the know..we are all humans and if something comes down the pike to help may well help all.

    I had my tonsils out at six. I suffered with panic attacks and muscle pain my whole life. The fatigue has always come and gone until the recent years. At 50 years where there was no such thing as fibro/cfs being diagnosed until about three years ago..I see progress. For me to be living here and finding an alternative practioner ..thats progress for me. To come here and have this board full of info to go through..thats progress for me. As a matter of fact..I think it was Klutzo that was talking about holistic meds..I so wanted to find someone who did it around here. God provided.

    I cannot be envious of someone elses good fortune. But I can pick up the ball and see if something will hit home with me. If I had given up after 20 years of this stuff..the last 25 or so years sure would have been hell!

  4. elaine_p

    elaine_p New Member

    I don't know if you've been constantly searching for a treatment that helps or not, but maybe you should give yourself permission to *not* look for awhile. And maybe seeing a counselor would help.
  5. stillafreemind

    stillafreemind New Member

    I was reading what you wrote..and it sounds just like me! I still have these weirdo things cropping up..but I do feel better also. It just struck me so funny how you put it! Thanks for the was like you were writing about me! (G) .. Sherry
  6. Plantscaper

    Plantscaper New Member

    HI Hippo,

    I wonder if I will ever get well enough to work, and therefore, have some control over my existence..I still have significant neurological symptoms, fatigue and developing new fibro-pain symptoms...So although, I have improved in some symptoms due to OLE, there are significant others that still remain..

    When I try to do much physical work, I get very fatigued...just watering and taking care of plants..When I do much, mentally, my brain gets drained.. I have had these DDs for 20+++ years, too..Eventually, my finances will run out...and it is depressing to see how much it cost to go to a CFS doc...who are not getting people in a healthy enough state to pursue their life, again.

    So, there are probably more people,who can relate to how you feel,than you may think..I have only started to get rid of my symptoms...still have a significant distance to regain my health...


  7. yellowbird

    yellowbird New Member

    but I find I feel skeptical. Like I don't really believe it is helping them as much as they say it is, and that for every person who says a certain thing helps them, there are fifty others whom it doesn't. Not very positive of me I know!! But I've gotten my hopes up many times over the past 10 years, only to be disappointed by yet another remedy that worked wonders for someone and had zero effect on me. I t even seems that some things that helped in the past (chinese herbs for example) aren't having much effect anymore. I find it is a struggle to stay hopeful and to keep trying new treatments. Doing nothing actually helped me for a while in the past.... I'm just not in that headspace anymore.

  8. Shirl

    Shirl New Member

    Another 20 year plus suffer here. Yes, I am 80% better than a year and a half ago. But you would not want to hear the whole story inbetween getting here. Its not pretty.

    My real beginning to getting better was a member on this board name Mel (I ask God's blessings on him as often as I pray).
    He pestered me for 6 months to try ZMA for sleep. It was not that I didn't believe him, I was just 'tired' of taking pills, liquids, etc. that did not work. You get your hopes up, and then a big 'crash' again.

    I have had a sleeping problem since I was a child. But it did not bother me in anyway. I was healthy, but did not sleep much. My family/friends all called me a 'Nighthawk' and that was about it.

    I was so 'convenient' if on of my friends or family could not sleep (occasionally), or needed a ride in the middle of the night, anything. You could depend on 'Shirl' to be up and full of energy, so my phone rang all night long, and my door was knocked on too in the middle of the night! I was the safety net for everyone I knew if they had a problem in the middle of the night.

    This went on for my whole adult life. Then I got pneumonia, after that it was a down hill spiral, the pain started, sinus, headaches, IBS, etc. Finally diagnosed with FM.
    Oh, I still could not sleep, but all that bundle of energy was gone.
    I was so tired of begging doctors to give me something to sleep! I wish I had just the money I spent on doctors/drugs for sleep, that would work for awhile, then it was back to being up all night.

    I tried everything I could find in the heathfood stores/OTC's to sleep . Some made me ill, other just didn't work for me. And the Pain went on and on.

    So I did not want to try anything else. I really gave up on ever sleeping like normal people do.

    Last Feburary I decide to give the ZMA a try. Not believing that it would help me, but to prove that it wouldn't more or less and to shut Mel up :)

    After about 2 weeks, I was, to my husbands and I's amazement SLEEPING for 7-8 hours in on night, to both of us that was a miracle.
    My husband of 30 years learned to sleep with a light flickering on and off all night long with me. I would read, then feel a little sleepy, so put the light out, then would be wide awake in an hour, then put the light back on. This is a patient man believe me. I was in the bed, out of the bed, this went on and on all these years.

    Now I am still sleeping for that amount of time ever since I started the ZMA (one year and five months now). Why it works? I really don't have a clue, but hay, it works and that is what is important to me.

    Then the sinus headaches, the allergies, well that was the result of reading a book; ABC of Asthma, Allergies, and Lupus' by F. Batmanghelidj,MD.

    When I first came to this board, I was a basket case with the pain, headaches, no sleep, etc.

    I started drinking water, half my body weight in ounces a day. I never drank any amount of water in my life.

    After a few weeks of water drinking, the headaches were gone, the constant sinus pressure was gone. So now for almost two years I am 80% better!
    So simply, 2 capsules a night and 70 ounces of water a day? Is this possible? yes and I hope it continues for the rest of my life.

    Am I cured? hell no. I still get flares, I am always in some pain, an occasional headache. My husband will tell you that I am 'almost' back to normal. Not completely, but at the least I am not more in the bed than I am on my feet these days.

    Now if I could just find a simply answer to the fatigue that I get now and then, and the IBS, that I still get. The chemical sensitivies, etc.

    But I am grateful for the help I did get, and this board is where I found the sleep help. That was one of the biggest things in my life. The flares are not as frequent and do not last as long anymore.

    It took over twenty years to get this much help, so keep your chin up Hippo, there is help out there. You just need to find what works for you, and don't ever give up trying. I didn't, and God knows I am so grateful for the sleep and not getting five different kinds of headaches on a weekly basis anymore!

    Shalom, Shirl

    PS. I kept that pace up with pain and all untill about 6 years ago. Thats when I really crashed. If you want to know how nuts I really was, go read my Bio, I was doing all those things with no sleep, in pain, headaches, IBS etc!(My children never had a chance with their curfew, I was waiting at the door for them whenever they went out, they still tease me about this).

    By the way, all those nightly calls I had? well there is not one person that 'I' could call till this day if I had a bad night!

    [This Message was Edited on 07/14/2003]
    [This Message was Edited on 07/14/2003]
  9. Hippo

    Hippo New Member

    I really appreciate it.

  10. 1by1

    1by1 New Member

    dear hippo,
    i am new to the board, but wanted to put my 2 cents in. we all have to stick together here. i came here for hope and encouragement. i don't know where i would be without this board right now. depression is working on me big time. but this board is keeping me going. let's stay together. we will help each other.
    1 by 1