i need some HOPE from those you have less fatigue...

Discussion in 'Fibromyalgia Main Forum' started by AquariusGirl, Feb 27, 2007.

  1. AquariusGirl

    AquariusGirl New Member

    i need some HOPE from those you have less fatigue...

    It has been a LONG(2.5 years) time and no relief on the fatigue end for me. Most days, I feel like I'm at a level 7 fatigue wise. To be specific, my CFS is just a general fatigue--not ever rested type of thing--no post exercise fatigue--not that I exercise but usually aren't more fatigued if I'm out shopping or not. I've tried so many things:

    -naps don't help(neither does ambien,gabitral)

    -T3 and Cortisol (hormone balancing--not sure if helps)

    -D-Ribose & Power Cell (energy--not really helping)

    -Diflucan & Valtrex (candida and virus--maybe helps)

    -2 sleep studies (awaiting 2nd study results)

    -Provigil (no help)

    -FFC (not sure if it's helped much--over 1 year)

    -Detoxing baths (thought helped but not sure)

    -Healthy diet (no wheat,dairy--no change)

    -Allergy testing (didn't help)

    -Colonics (i'm sure makes me not get worse)

    -Prozac (helps some)


    I am 35, want to have kids and just feel normal for one second. I don't understand why we try so much and still don't see a change? Something has to help eventually, right? How do you stop yourself from going crazy with this aweful illness?



    Thanks.
  2. AquariusGirl

    AquariusGirl New Member

    bumping for responses?
  3. ravenpaige

    ravenpaige New Member

    AquariusGirl,

    One thing that may really give you hope is that often both FM and CFS seem to go in stages. In other words, often it is really bad for the first 3 years or so, and then things begin to gradually improve. I know that has happened for both me and my daughter, and I believe many others here.

    The other thing, besides time, that really seems to help is to just keep trying different things. Everyone is different, and although it sounds like you've already tried many things, there are still other possibilities to try, and of course, new treatments being discovered almost daily.

    For me, getting rid of wheat and corn was key, but that's not true for everyone. I know you've tried eliminating wheat and dairy, but have your tried a full elimination diet? Because, although wheat and dairy are common problems, they are not the problems for everyone. I know one lady who says eliminating salt helps her. Others have found other items were the key. The only way to really know for sure what food problems you might have (if any), is to eliminate anything that might be suspect, then gradually add foods back one by one.

    There is also a lot of hopeful work being done recently with antivirals. Although it's probably too soon to know if that is a good solution for many, this may be something you want to look into, or talk over with your doctor.

    Meanwhile, this is a very frustrating illness. It makes you look at every aspect of your life to figure out what little changes you might make that could make a difference. But in the end, if you're persistent, I think you will find some remedies for you. I hope you can find some little blessings along the way while you continue seeking.
  4. bigmama2

    bigmama2 New Member

    i am doing better fatigue wise on adrenal glandulars (to help my low adrenal function and adrenal fatigue, and low cortisol). but if the cortisol didn't help you then i dont know if the adrenal glandulars would help either. did you ever had the saliva adrenal stress index test? that could help pinpoint how your adrenals are doing.

    if you have a moment - what was your experience w taking cortisol? how much and how long? did you notice anything? (I am considering adding cortisol to my treatment plan)

    thanks!!!
  5. findmind

    findmind New Member

    I'm an aquarius, also!

    I think you should wait until the results of your sleep study...bet you they find something...if you have CFS, you are not sleeping very well, no doubt.

    Maybe if that issue is found and addressed, you'll feel a bit better. you've been going to FFC for 1 year, are on on those things, and only marginally better? Didn't they address the sleep issue with you?

    Hope you find something that works for you, dear one...the Dr. Cheny articles could help you understand it all better.

    findmind
    p.s. Search Diastolic Cardiomyopathy on this site.
  6. PVLady

    PVLady New Member

    I know it may seem silly, but what helped my fatigue sometimes is the supplement Emergen C. It has electrolytes in addition to vit C. It is sold in most grocery stores now. You mix it in water and it tastes fine.

    I guess everything is "trial and error" - Provigil does help me, mostly to get over the hung-over feeling from sleeping pills.

    Hope you find something to help....

  7. Manaleon

    Manaleon New Member

    My doctor put me on Imipramine to help with sleep. Tt tooks some trial and error trying to find the a balance, but it helped. The fatigue was begining to drive me insane and then one day I realized it wasn't there. It was amazing.

    I also started taking grapeseed oil pills. They're also suppose to help with the fatigue. I was told to take 2 when I wake up, and 2 around noon.

    Unfortunately there's no guarantee.

  8. AquariusGirl

    AquariusGirl New Member

    I took the bull my the horns last night and made a list of all new things to try--I'm gonna post it later today on my lunch hour.

    Love and support to all in this forum.
  9. monkeykat

    monkeykat Member

    Hi Aquariusgirl,
    Honestly, my health kept growing worse over many years and was not getting better.

    All traditional medicine could do was destroy my health. We are all different but that was it's effect on me. Only 2 of the naturopaths that i saw were able to help me without making me worse with supplements or other treatments.

    The 2 naturopaths that helped both knew how to do muscle response test (aka applied kinesiology). THIS is what made the difference for me because they were able to test each supplement and treatment to see if it was beneficial for me, if it was a good product and if I was allergic to it. They were able to determine "best" dose so that I wasn't taking more than I needed.

    Anyway, try to find someone who knows how to do this type of testing if you are not finding that the non-traditional treatments are helping or if you find that some things make you worse or you are not sure what is helping or what is making you worse.

    Good luck,
    Keeping Hope Alive, Monkeykat
  10. jinlee

    jinlee Member

    I also find the Emergen C really helps. Look on the Internet for cheap price on this. There are grocery stores with health food sections that sell it on sale quite often. I keep a glass of it with ice on the table and throughout the day I sip this.

    Also exercise outside in the sun, even if it is just a 10 minute walk. It is hard to do I know and if I did not have my neighbor prodding me, I would not be as inclined to exrercise. We walk now for about an hour. We talk, explore, feed the ducks, etc. At first I was dead the next two days from walking but now it feels refreshing and I am not as tired. Start out slow.

    My thoughts are with you and hope you find something that helps. For a long time I had beyond extreme exhaustion , even if I slept most of the day and did nothing, but no pain. Then the fatigue got better and I developed the pain.

    Take care,
    Jinlee
  11. skierchik

    skierchik New Member


    There is definitely hope, and I know it's frustrating. I've been fighting Chronic Fatigue for a long time. Something is definitely changing in my body and I feel really good.

    Please find my message, just posted, to Auntyem. I explain it there. The things you have to do may feel overwhelming at first. It did for me, but it works!!! Not only do I have CF, but I have had juvenile diabetes for 25 years and Hashimotos (low thyroid) for 20 years. So my road to recovery may be more challenging than most. But guess what, I'm going skiing tomorrow and I haven't felt well enough to do that all season. I, do feel, that I'm on the road to recovery.

    Please don't give up. Our bodies are very complicating and we have to do a lot to keep them running well. Read as much as you can and make the necessary changes. You'll be feeling well, soon.

    Take care,

    Skierchik

  12. sascha

    sascha Member

    i know how that feels.

    you are off wheat and dairy- what about carbs in general? i'm on a carb-less (virtually) diet now, and it definitely boosts my functioning level. i have no carbs from flours or grains of any kind (except for a special mix oatmeal breakfast cereal i cook), and no carbs from high-glycemic fruits and vegetables either. no sugar at all - i just use stevia sweetener from health food stores); no diet sodas, no caffeine, alcohol. so just about everything is prepared fresh. i have lots of berries- i mix them in a kefir drink (the only dairy product i use).

    i'm just wondering if maybe tightening up your diet plan more might pay off in results, but of course, maybe you're already doing these things.

    i'm guiding by Perricone right now- his diet plan- becuase he mentioned his approach heals mitochondrial damage. that rang a bell for me because i've always though mitochondria (the power sources in our cells) have been compromised and are part of my CFIDS problem.

    i am doing better on this strict and careful eating plan.

    keep up the search! there must be answers! Best from Sascha