Discussion in 'Fibromyalgia Main Forum' started by djnor, Aug 26, 2008.

  1. djnor

    djnor New Member

    I am so t-i-r-e-d! I can almost give up (not really) but I am in desperate need of any advise to help regain some of my energy.
    Per my rhuemy I have FM-have not had very much success with any meds--have had a little luck with supplements(grape seed extract, magnesium, multi-vitamin, vit-d, fish oil) but my problem has always been more fatigue than pain related.
    I have pain in all the trigger points but the worse is this crushing fatigue-feels as if you are going around with 100 lb weights attached to all body parts. I have tried the diet-lost 35 lbs/exercise-when my body allows me too-but cannot find any relief.
    I have an appointment with my rhuemy on 9/25 any suggestions would be great.

    Thanks to all
  2. lisadot

    lisadot New Member

    I lost weight and have been exercising (pretty faithfully)in order to feel better. Maybe it helps my body to have a normal BMI, but I sure don't notice any change with respect to energy level or pain. It stinks, and it's so not fair! I'm taking flaxseed, milk thistle, acidophilus, and HRT to keep my ovaries from going haywire, and an occasional muscle relaxant and/or Tramadol. Nothing really helps, and besides I'd rather have a *fix* than a bandaid, but so far no luck. I wonder if acupuncture would help???
  3. kking0412

    kking0412 New Member

    they put me on Resperidone for sleep last month; keeps me awake. if you look at the lit it also says something like 'may cause increased mental clarity and ability to function in daily life' which is what it is doing for me. I have had a very good, productive (longer days out of bed)3 weeks. it could go either way but I'd say worth a try, based on my
    experiance. and then there is the ever popular Provigal. both pricey but worth it. Provigal is available from drugs from Canada at a great price, have not checked the Resperidne yet.....
  4. Catseye

    Catseye Member

    I can't help with the rhuemy, all of this is way beyond their knowledge, but you can help yourself if you do the research. And since I've done it, I can steer you in the right direction.

    I got over the severe fatigue by myself. I figured out what the body does to make energy and went with supplements. The reason you don't have any energy is because they body's energy makers, the mitochondria, are starved for the ingredients they need to make energy. Digestion is not working and so we end up like people dying of starvation - we are deficient in everything.

    The main ingredients that the mitochondria use to make energy are:

    magnesium - use an easily absorbable form like glycinate, malate or taurate, NOT oxide, it just passes through the body and that's why it's used in laxatives, you probably want between 400 and 800 mg per day

    acetyl l carnitine - easiest absorbable form of the amino acid carnitine - I was using 500 mg 3x per day

    coq10 - get an oil-based gel cap, NOT the powdered capsule, this is the most expensive one - I started with 100 mg 5-6x per day and decreased after awhile

    ribose - 5 grams (2 tsp) 2-3x per day, use cautiously if you are hypoglycemic

    And you also need to make sure you have enough coenzyme A in your body to help make energy, too:

    the precursors (things needed to make it) are the magnesium and carnitine from above and also:

    pantethine - bioactive form of vitamin B5

    calcium pyruvate

    l cystine - I used N acetyl cyteine and also Dr. Vickery's Platinum Plus Essential Amino Acid formula, I think it's the best amino acid blend I've used

    AND you need to make sure you have enough antioxidant enzymes in place because as you make energy, you make free radicals, the most damaging one being peroxynitrite. It is so powerfully bad, that it causes tissue damage. So part of the reason we get so fatigued is that the body tries to make energy, it ends up making some peroxynitrite and when it sees it doesn't have the enzymes to scavenge it, the body shuts down energy production to protect itself from it.

    If you want to understand all of this, then here's the things to read:

    An article called "Heart Disease Secondary to Mitochondrial Malfunction" - don't worry if you have heart disease or not, it's about energy, you can google for it, by Dr. Myhill.

    I have a couple of threads about the antioxidant enzymes and what I'm doing to get better, it's all working, too:

    Mitochondria's role in PEM (crash) and how you can reduce it
    scientific articles on how to restore mitochondrial function

    toxic guts, toxic body, why do a comprehensive stool analysis

    Sorry that's so much homework for you but it will tell you what you need to know.
    This energy problem isn't impossible to deal with, it's just a royal pain and will get expensive with all the supplements you need.

    good luck


  5. gapsych

    gapsych New Member

    Have you had a sleep test? Many of us have some kind of sleep disorder which not only makes us tired but can also increase any pain.

    Has your rheumy suggested that you also may have CFS/ME?

    What kind of tests have you had?

    It is very important to rule out the many things that could be causing your exhaustion. I certainly know how debilitating the exhaustion can be.

    I take Provigil which is for people with Narcolepsy and that many people with FM/CFS have taken.

    I only take it in emergencies but it does give me some stamina without making me nervous. I saw my PCP today, I am having her manage my FM/CFS as she is very knowledgeable about our DD. She suggested taking a lower dose every day to get my sleep cycle straightened out.

    What kind of diet helped you lose weight?

    Take care.