How Do You All Make It Through?

Discussion in 'Fibromyalgia Main Forum' started by Hippo, Dec 21, 2002.

  1. Hippo

    Hippo New Member

    I have to admit I get awfully discouraged at times. I have been sick unrelentingly for almost 20 years. I can't count how many treatments I have tried and failed. Right now I'm trying Guai, but have not been on it long enough to know if it will work. Just going on faith now. I have noticed that many of you seem surprisingly upbeat and wonder what your secret is.

    Hippo
  2. Shirl

    Shirl New Member

    You are I have been at this for the same amount of time, its about twenty years for me too.

    Also have tried a whole bunch of treatments, but not the 'Gurai' yet!

    I think I would have ate mud and drank gutter water if someone would have told me it would have helped this miserable pain, fatigue, sinus, sleeplessness, headaches, etc!

    I got so sick of doctors and meds that make me sick, not well that I simply started reading books on Fibro, sinuses, etc.

    Then I got the computer two years ago. I could not sit here for longer than about ten minutes at a time without being in so much pain, that I had to be helped out of the chair! When the spasms started, or the headaches, not to mention the IBS. I would be gone for days at a time.

    But I can honestly say, I 'think' I have found what helps ME, and I have been really feeling almost 'normal' for almost a year now. Oh, I get pain sometimes, but not those flares that never end anymore.

    I went shopping today, ate breakfast out, went to a Mall (I usually stay away from Mall's like the they have the plague), stopped at a Farmer's Market, and I did get tired and did have back pain,but it was from walking in the Mall too long!
    I came home, took a nap with my heating pad and mattress heating pad for about an hour and I am fine again.

    Before, this would have put me in the bed for at least three or four days! I was also out running the streets yesterday too, and that is usually a no, no. Never two days in a row!

    As you know, I am the queen of malic acid and magnesium, ZMA and drinking water around here! I have not felt this good in close to the 20 years.

    But I did learn not to do the things that I know will cause me pain, and I pace my activities, and stay the heck away from stressful people, and situations too.

    I still have pain in my back most of the time, but its not so bad that I can't stand it. I learned to live with that.

    But I am so much better than I was before I came here. I have tired many of the suggestions I heard here, and some I got from books and articles too.

    I must sound upbeat because at this time I am upbeat. If I have a real bad day, I usually stay off the board as I don't want to say things that might hurt feelings, which I have been known to do when I first came on the board.

    I know the Guari helped MIkie, and a few others on the board too. But like the supplements, it takes time to really work. None of the alternative ways are 'quick fixes', they body needs to get use to them, and then we get results. Its a long process, not a silver bullet by no means.

    My husband is amazed how well I am doing, but he trys to make sure I don't try to over do it. He rather do things for me than to have to live with me in all that awful pain and misery again.

    I know my age has a lot to do with it too. When we get older, we have to face the fact that things we do are going to be done at a slower pace, or maybe not at all sometimes.

    The only secret I have is what I said above, and its no secret, I keep screaming it to anyone that will listen!

    I sure hope the Guari works for you, and that you start feeling good again. So much of life just seems to pass us by, but I have tried to make do with what I can do.

    You mentioned faith, I can assure you, without my faith I would have given up a long time ago, Hippo. It is the center of my life.

    Hope you holidays are pleasant, and the New Year brings great blessings for your health.

    Shalom, Shirl



  3. Stormy214

    Stormy214 New Member

    I have not been afflicted with this DD nearly as long as you or Shirl...it's only going on 3 years for me, but it has affected my life in ways I wasn't sure I'd be able to live with! I am currently in the middle of a terrible flare (the word "flare" made me think of something short term, but this has been going on since mid-October, with no sign of light at the end of the tunnel). I am working hard with my rheumy who, contrary to some of the horror stories I hear some poor souls have with theirs, is doing everything she possible can for me, and is very supportive. I am also using natural supplements, and am working myself up to trying guai. I'm one of those that has to research evrything to death before I jump--if I'm not going to do it right, what is the point? I guess the most important thing for me is, as you pointed out, trying to remain upbeat. I have accepted that my old life is gone, but I am working at making a new life that will be every bit as satisfying as the one I used to have. The important thing for me is to avoid stress and negativity as much as possible, and surround myself with people who have the same goals and postitive attitude that I try to have. It does get hard, but that's where you rely on those postive friends to help you through...then you return the favor when they are down. I hope you can keep the faith, and continue your search for a better life. You've come to the right place....
    Peace,
    Stormy
  4. 1maqt

    1maqt New Member

    THIS IS 1MAQT, MOTHER OF 6, GRANDMOTHER OF 18, 58YRS OLD.
    THERE ARE CERTAINLY DOWN DAYS FOR US ALL...WE JUST TRY NOT TO GIVE THEM TO OTHERS.
    FOR MOST OF US, IT IS A FAITH THING..MEANING WE LET GO AND LET GOD. THIS IS A CHOICE. I MAY BE ROBBED OFMY HEALTH, BUT MY RELATIONSHIP WITH THE LORD CAN NOT BE TAKEN AWAY.
    WENT THROUTH 13 YRS OF THERAPY FOR ONE THING, PSYCIATRIC THAT IS. SOME UNKIND PEOPLE TRIED TO ROB ME OF WHO I AM, AND GOD GAVE ME, BACK TO ME. HARD WORK I MUST SAY. I THINK THIS IS WHY THIS BOARD IS SO GOOD FOR US.
    WE CAN VENT, WE CAN HAVE AN OPPINION, WE CAN SAY THINGS THAT HELP OTHERS, AND IT'S OKAY. WE SPEAK THE SAME LANGUAGE, AND KNOW WHAT BRAIN FOG IS, AND DEPRESSION, AND PAIN THAT FEELS LIKE MAC TRUCK RAN OVER YOU SOME DAYS.BUT THE BEST THING IS THAT HERE THERE IS A SUPPORT GROUP AND WE WILL BE GOOD TO YOU. XXXX"S TO YOU 1MAQT
  5. stillafreemind

    stillafreemind New Member

    I surely hope your new treatment kicks in shortly and you start reaping some benefits from it. It does take time like many have said. I have had symptoms since I was six..I almost believe I started with cfs first..then the fibro. I will be fifty in Feb. I have tried most of my life to just slug it out with my body and mind. I have always had the most physical jobs and always had to be the best. At age forty..I hit the wall. BUT I also came to the Lord. It was more than a good tradeoff. I depend on Father to get me through the physical pain and through the mental ups and downs of the day to day battle with these diseases.

    I too do the alternative methods..mostly because I have never gotten along with meds..they over react on me. I have slowly been coming back..some weeks I do not get much done..ahhh, but this last week I drove the truck to town and back..I had not done that for months..what a gift!

    You are handling this I would say. Heck you have taken control of your method of treatment. You go girl and give this disease the tussle of its life. It will take time..but I truly believe, from looking back the last forty years..there will be something on the horizon to give us our lives back. Heck .. until I was in my forties..I never heard anyone even give how I had felt for so long a name.

    Merry Christmas..
  6. cls

    cls New Member

    maybe what you see here is a the positive benefit of having the opportunity to share your joys and woes with others who are going through the same thing. I have not been on this board long, but some of the suggestions offered here have given me the hope that I may get some relief from one of my symptoms. Also, I get reassurance that others have the same symptoms that I thought was just something I was imagining because I'm fixating on my symptoms too much. I have not had this DD as long as you, but I have noticed that in order not to despair, I need to latch onto some idea for improvement of a physical ailment, or some personal goal (even a small one) that I want to reach. When I get really down, that is a technique I use to pull myself out of it. You are obviously not alone in your suffering. Hopefully the guai will give you positive results, others on the board have found some relief from it. Hang in there! you have lots of support here.
  7. Mikie

    Mikie Moderator

    I do hope the Guai treatment helps you. You've been through a lot for a long time. As you know, the Guai treatment can take a while before you see any results, so just hang in there. Sometimes, the first glimmer of improvement is just a fleeting feeling of well-being one day. It starts out slowly and it can get worse before it gets better. In fact, if you do not have a Guai flare, be sure to get your doc to increase your dose slowly until you do. That is the signal that you have reached the right does. Then, just sit back and wait for it to work.

    Once, you arrive at the lowest effective dose, you can increase it if you wish to speed up the process. I'm now at 2400 mgs. a day. When I went from 1200 mgs to 1800 mgs, I had to go back to 1200 for a while as the flare was just too much. I tried again later and was able to get through the Guai flare much better. I started passing so much phosphate debris that it was building up in the bottom of the bowl of my slow-flushing toilet. I had to manually stir it up and flush it down.

    I have had the blessing of therapy to help me get through the rough times. It has helped me cope with the losses and to learn to adjust to my new reality. I try to never give up hope and when I'm feeling down now, I just divert my attention to something else like a book, shopping, or TV. I do believe that our lives are sacred and how we handle them is our God-given challenge. Bless you.

    Love, Mikie
  8. Hippo

    Hippo New Member

    I really appreciate everyone's support. I am struggling to raise 3 children alone, and 2 of them have psychiatric problems. Thanks for all the hugs and prayers.

    Hippo
  9. Rumpsonfire

    Rumpsonfire New Member

    Hippo,

    I hate to hear when people are becoming discouraged and depressed about thier condition. I was just diagnosed in September and went through 3 months of looking at the worst of everything. I gave up on alot of things I loved thinking that I just wasn't able to to them, or that I wouldn't want to get anymore involved because of fear I would not be able to do them as well with Fibro. Luckly, my boyfriend did not give up on me and told me that he knew I could do more than I was admiting to and even if I wasn't able to do all of the things I used to be able to do, I could at least try. No one ever fails if they at least try. So that got my butt in gear.

    My next step was to get information about how to help myself. I researched fitness for fibro and what the limitations are. I became good friend with a neighbor of my mom who is only 7 years older than I am who has arthritis and bursitis. Together we joined the local YMCA and enrolled in a warm water aerobics program as well as working with a fitness trainer who is going to put together a fitness program just for us with our disabilities in mind.

    You can contact your local Arthritis Foundation for listings of local Fibromyalgia Support Groups. There you may be able to make friends with someone who would like to fight fibro too. I once thought that there would be no way I could get out of bed and go to the Y to actually work out. But just breaking a sweat after a half hour on the tredmill makes me feel so much more in control of my fibro than I have ever felt before.

    And the big one...DON'T GIVE UP!!!


    If you need any more support or help, let me know!

    Amanda's Rumpsonfire
  10. JaciBart

    JaciBart Member

    What I am finding does work for me most of the time is to pace myself. I take my meds (zoloft, skelaxin, ultram, levoxyl, toprol, neurontin, diclofenac, vit e, valtrex) in the am real early, my hubby brings them to me when he gets up with a glass of water, I go back to sleep, it really helps me if I can sleep another hour or two. I also avoid public places if at all possible, I go on any necessary errands with a list, do them as quickly as I can and get home. I get sensory overload so bad and when that starts I cannot stop it, my adrenaline just goes crazy for the rest of the day usually. I drink a lot of water, did not used to ever drink water. I try to eat pretty healthy, and the most important thing is on those days where I just wonder why I am still alive and I don't necessarily want to be, I wallow in self pity and I do know that it will pass. I have the ability to thoroughly beat myself up for being immoral and having my priorities way backwards when I was young & stupid, which was up until just the past few yrs at 42!! Takes me a while longer than most thing & I have to learn everything the hard way. Anyway, just know that tomorrow is a different day and as they say "One day at a time"

    Jaci
  11. 1Writer

    1Writer New Member

    I know what you mean....there was a time a few years ago when I had to have help just to get up off the toilet!:( I'm better now: on Arthrotec (for joint swelling and pain), Klonopin (for anxiety and insomnia), Synthroid (for thyroid disease), Femhrt (for HRT), Pravachol (for cholesterol) and Benedryl and Albuterol inhaler (for allergies & asthma). I went thru over 5 years of being mis-dx'd as depressed, bi-polar, "it's all in your head", etc. and then finally, a little over a month ago, I was finally dx'd w/CFS. I will never take another anti-depressant the rest of my life if I can help it!!! All they did was drag me down into a bottomless pit of fatigue!
    I love this board for one BIG reason...I DON'T FEEL ALONE HERE! Just reading all the posts about other people 'like me', makes me feel not so very alone and crazy. My family is pretty supportive, but they all have problems of their own and so I try not to complain too loudly...I think that works to my advantage; that way they are there for me when I really need them. I do hope you feel better soon with the new things you're trying...Good luck and God Bless.

    MERRY CHRISTMAS, TOO!
    1Writer
  12. pcynthia

    pcynthia New Member

    Faith has a lot to do with it. The right doctor, the right minerals and vitamins...I've found if something doesn't work, try something else. This is slow moving so it takes a long time for something to work. Some days I just push a little harder, get the necessary things done and then spend some time in bed. I have shown my husband articles from the internet so he can understand this a little better and he is much more understanding. One of the most awful things about this is, no one can see how bad you feel. At my worst I use trigger point accupressure on my legs. The pain is beyond belief but when I'm finished the relief is great. Sometimes you cry, sometimes you curse, sometimes you take what joy you can from life.
  13. pcynthia

    pcynthia New Member

    I agree wholeheartedly about the malic acid and magnesium. Takes pretty high doses but it does work. The internet will give more help than anything else I've seen. I suffered death til I found the Fibromyalgia Network and started working out what would help me.