Discussion in 'Fibromyalgia Main Forum' started by fibrobutterfly, Feb 3, 2009.

  1. I am sooo tired of dragging around and need some pep! Does anyone know of any thing, especially natural supplements etc.? Perhaps a protein diet?
  2. heapsreal

    heapsreal New Member

    I have heard some people have has success with d-ribose as well as NADH, I have yet to try any but will be having a shot at NADH. Would be good to hear from others who have tried these too.
    good luck
  3. AuntTammie

    AuntTammie New Member

    D-Ribose is one of the only things that had made any noticeable difference in energy levels for me...it certainly hasn't brought my energy back to what it was before getting CFS, but it does help...I also take other supplements, though, including CoQ10 and Acetyl L-carnitine, which are recommended bc they, along with D-Ribose are part of the ADP reaction in the mitochondria...I didn't notice a difference when I started taking those, but when I added the D-Ribose to them I did notice quite a difference....from what I've read only taking the D-Ribose won't have as big of an effect as taking it with the others, bc they are all needed to make the mitochondria work
  4. sydneysider

    sydneysider Member

    If you're not alreadt taking digestive enzymes, it is important to take these before food. Otherwise, you might be flushing your nutrients away.
  5. vivian53

    vivian53 Member

    I had felt like your description of "dragging around" for a long time. I feel a little better now and I think it is do to being on a high protein diet. I do the South Beach diet and have been for almost a year. I have so much more energy that I was even able to go on a vacation, the first in about 9 years. I used to be on a drug called Provigil (I believe it is a drug for narcolepsy mainly, but used for CFS) and that gave me a lot of energy but left me unable to sleep so I got off it. Hope you find what you need to feel better. What is the NADH that others are recommending for you?
  6. thanks for all the posts. Alot of it is I can't eat much because I have gastroparesis (stomach doesn't empty) along with fibro/cfs. That is horrid. I can't eat much. Nothing helps.
    I tried to find digestive enzymes in the stores/pharmacy but it must be a health food store supplement.
    What is the nadh ?
  7. mom2all

    mom2all New Member

    I know exactly how you feel. I am soooooo tired all of the time. There are very few "good" days that I have lately. My doctor took me out of work due to the fact that I know longer had the stamina to hold down my teaching position. It was so difficult to get up each morning and take a shower...my arms felt as they weighed a ton a piece...the trying to blow dry, I had to lean on the counter because my arms were in pain and very weak. I would teach all day, just waiting for the bell to ring....and would rush to the door and drive straight home. Then I would plop down on the couch or bed and fall immediately to sleep. No one could wake me up when I slept. I felt "brain dead".

    My life has changed so much over the last 2 years.... I was diagnosed with Fibromyalgia 13 years ago after the birth of my son. That took a toll on me, however it was copable at the time. I did sleep alot but did not have any pain. Now after all those years, the pain is in full force and ready for vengence....I have excrutiating pain all over my entire body everyday, allday. I am on pills but they do not seem to be helping much. I can't sleep at night without some form of sleep aid, and even then do not get restful sleep. I get 3-5 minutes of REM a nignt.....I am sleep deprived....which many of us are:( I am at my wits end and don't know what to do anymore...I'm 44, mother of two teens, wife to the most caring,understanding and wonderful man I know or have ever known (23 years). The doctor told me yesterday that he could not release me to go back to work....I have cried all day. I just finished getting my masters in curriculum and instruction right before I got soooo sick. I now have 5 Autoimmune Diseases: Fibro, CFIDS, Krons Disease, Restless leg Syndrome, and Raynauds....WooooHooooo!! With all this though I must remember that "LIFE IS GOOD!"
  8. hi all,

    i have fibromyalgia and ME/CFS.

    i am at this time having longer boughts of energy and the only things im doing is...

    drinking a glassfull of purple grape juice in the morning.

    eating a handfull of various nuts in the evening.

    eating a two inch piece of ginger root,that i cut up into tiny pieces and just put it over the meat i will be eating with my evening meal.

    i also eat a pot of activia yogurt before bedtime,and eat a peeled pair (this is keeping my bowels in order).

    im also buying small bags of dried fruit,these being apricots,prunes and dates.i will eat two of each fruit about 1 pm.

    i know its alot to have to purchase these things weekly,but i must say that i think im on a winner as regards retaining energy.

    i do also know that on occasions ill get a few mouth ulcers and feel like ive got a virus,then ill feel a bit weak,but not anything like it used to be.

    i work in a school so i think that im catching whatever virus is going around at the time.

    but having said that,i dont now go into the chronic fatigue bouts,like i used to do.

    i have started taking a one a day allergy tablet again, called.. LORATADINE 10 mg.i take this at night with my nortriptyline 25mg tablet.im no longer getting those zapping noises in my head,thank goodness.

    i do now seem able to cope with any every day stresses,that life throws at me,so i feel blessed just now.

    i do have aches in my legs at present,but weve had heavy snow over here in the uk,so im having to walk to work each day instead of bike ride.i do miss my bike though,its much harder walking with the cold muscles,than actually riding a bike.nevermind...

    take care all,love fran.


    update on my eating the activia yogurt daily.

    ive stopped eating the yogurt as im currently having a very bad bought of thrush in the mouth and vagina.my doctor gave me a canesten pessary to put into the vagina,but it seems that it hasnt helped me.

    doctor said in her opinion the thrush has nothing to do with what ive eaten,but is due to my immune system being down.

    i myself have never had such a bad bought of thrush for 16 years,so im thinking that im going to stop eating the yogurt anyway,my body seems to hate milk of any sort,but i do realise that i need milk for calcium.

    might go back to drinking goats milk in my tea/coffee instead of the cows milk.

    still sick of the fight but plodding on.

    take care all,love fran
    [This Message was Edited on 03/03/2009]
  9. klar

    klar Member

    If you find anything, please let me know!!
  10. dannybex

    dannybex Member

    Just wondering if you've tested for low stomach acid? That could easily explain the slow stomach emptying.

    I take betaine HCL (hydrochloric acid capsules) with my meals. If I didn't, the food would just sit there for four-five hours.

    Then about an hour or so after the meal, I'll sometimes take 1/4-1/2 teaspoon of baking soda, that helps the pancreas release it's digestive enzymes and also helps the stomach empty itself.

    There are several ways to test for low stomach acid. The easiest is to take one capsule w/a meal, then add one with the next meal, and the next, until you get a feeling of 'warmth' in the stomach -- then you'll know you have enough, or perhaps too much. So you back off by one capsule, and then take however many you need until you gradually restore acid production.

    Five years ago I needed NINE capsules before I felt any warmth. Now I take 4 with some meals, and 5 with larger meals.

    Just my two cents!


    p.s. and you certainly won't be able to digest very much protein if you have low stomach acid levels. Also, don't drink ice water with your meals...that will basically put cold water on any digestive 'fire' you may be trying to acheive, and also cause a sort of fake 'acid' reflux.[This Message was Edited on 02/06/2009]
  11. thanks everyone... DAN how do they test for low stomach acid and are the betaine HCL (hydrochloric acid capsules) a prescription med? Some have said to take digestive enymes but can't find those either?
  12. vivian53

    vivian53 Member

    I am interested in gastroparesis and digestion difficulties also. I have never heard of the medicine that Dan talks about, hydrochloric acid capsules. What is being said makes sense in that it's hard to get energy from food if it is not being digested in a timely manner. My son just completed a gastric emptying test and was diagnosed with this condition. He also has severe GERD. I wonder if this remedy would work for him too or just exacerbate it. I would like to find out from Dan ,or anyone else that has found a way of dealing with this problem so I can take that information and can discuss it with his Gastro Doc. I will appreciate any further discussion on this topic.

  13. Hawkeye

    Hawkeye New Member

    I have posted this before but this stuff is a Godsend to me. I would not be able to cope without it. I don't take it every single day but when I get in a cycle where I am just at the end of my rope I take it for a week or so.
    It is called Rhodiola Energy. This stuff is amazing. It is a herb without any side effects that I have found.

    Hope this helps, I buy it online just google it.

  14. Beadlady

    Beadlady Member

    with malic acid--comes from apple pectin helps me with energy, and lately I've been on an orange juice kick--and it helps me alot too.
  15. dannybex

    dannybex Member

    Betaine HCL is available at almost any supplement store -- and definitely available online. Prohealth probably sells it.

    It is basically the acid that your stomach may be low in, but in capsule form. Very common supplement. And it helps to digest protein in the stomach.

    This can be tested at a doctor's office (usually a naturopath, but I'm sure an up to date M.D.) could perform the same test. Tell him you're concerned about 'hypochlorydia', which is what they call low stomach acid. "Achlorydia" is NO stomach acid.

    Anyway, GERD can be a result of either too much acid, or actually not enough.

    An easy way to test for this on your own (as recommended several years ago by my doctor) is to take one betaine HCL capsule with your meal. If you feel a warm sensation, then that will tell you your producing enough stomach acid. If you DON'T feel any warmth during the meal, then you take 2 caps with your next meal.

    Same thing...if you still don't feel any warmth, you take 3 caps with the next meal. And if still no warm feeling, then you keep adding a capsule until you get that warm feeling, then you back off by one capsule.

    Five-six years ago I had to take NINE caps with a meal before I felt any warmth. The doc was shocked...but I stayed at 8 caps for awhile, but am now down to 4 or 5, as your stomach should gradually start producing it's own hydrochloric acid after awhile. My sister used to have this problem as well, and she's down to ONE per meal.

    There are other digestive enzymes, but they usually are digesting other things like carbs, fat, and also proteins, but down in the intestinal tract. I take 2 digestive enzyme (plant-based) caps kind of near the end of my meals. Definitely notice a difference if I don't take them.

    Hope this helps. You can also google "low stomach acid" and maybe "HCL", and will turn up lots of information.

    Take care,

  16. vivian53

    vivian53 Member

    You are very thorough and thoughtful in your replies and I greatly appreciate your taking the time to do that.
  17. Kay31

    Kay31 Member

    Hi Beadlady,

    I can't take most magnesium tablets because I'd have to live in my bathroom. Yet I know, from all I've read that magnesium is a key ingredient for us.

    Please tell me more.

  18. My dr just told me about propel water with vitamins. I bought a bottle of grape and love it. It has...

    10 calories,
    0 fat,
    7 gms carbs,
    5 g sugar,
    vit c 30 %
    vit E 25 %
    niacin 60 %
    b6 60 %
    b12 10%
    pantothenic acid 60 %

    I pd $1.39 bottle at krogers, but they are expensive, hoping walmart has it cheaper. If just short term when feeling low drinking it, It seems to help . and I need all the help I can get as I don't get alot of energy from foods as I have gastroparesis and can't eat normally.

  19. Dannybex thanks so much for the info, drs want me to take nexium for reflux since I have b12 low, and gastroparesis, so can I still have low stomach acid, I thought with reflux you had too much? fibrofog!
  20. kay31 I too have trouble taking magnesium but take one pill of the lowest mg. to start with and with food.