Does anyone here have chronic fatigue without muscle pain?

Discussion in 'Fibromyalgia Main Forum' started by david752, Sep 19, 2003.

  1. david752

    david752 New Member

    Does anyone here have chronic fatigue WITHOUT muscle pain or flu-like symptoms? I get exhausted from doing even small activities. For example, showering (with several periods of sitting down to rest) wipes me out for the whole day. I feel faint and queasy. I have had the symptoms all my life, but they were always mild. Now it is getting worse every week. I have seen many doctors and all tests are normal. I have dysthymia (depression), but it is under good control with medicines. I have tried thyroid treatments in spite of normal test results but there was no effect. My muscles are fine (by EMG and serum enzymes). My doctor wrote me a letter saying he was giving up.
  2. Dlebbole

    Dlebbole New Member

    THis isn't me anymore, but it certainly was...what helped me the most at that point was starting glutathione injections. I saw my NK cells increase slightly, accompanied by a decrease in fatigue and weakness. But because of the expense and mostly the pain, I decided to try amino acids and make my own glutathione. It worked, actually better than the shots. I gradually built up to taking 6 capsules of Nutricology's free aminos. I say gradually because I always get worse on something, even if it will utimately help me. In other words, my fatigue actually got WORSE for a day, then would get better each time I iincreased the amino acids. Hope this helps. Diane
  3. david752

    david752 New Member

    Thanks for the wonderful, useful replies. Please keep them coming!

    I'm afraid I do eat lots of sweets and carbohydrates. Having low energy means that I cannot usually prepare food, so I have to eat things that come in bags, cartons, and bottles ready to eat. I would love to try cutting out all sugar, but I don't see how to do it.
  4. NanceZ

    NanceZ New Member

    along with drinking purified water........eating a lot of veggies, good (organic) protein and some fruit is key to getting our bodies strong enough so they can get us healthier.

    It is NOT easy at all butwithin 3 days of starting this very restricted eating plan I got clearer headed, and had more energy than i have in a year. At this point I'm frustrated as I lost the momentum I had had.......but I see I also lost the strict healthy eating protocol....and am paying for it in weariness that is stiopping my life.

    Starting now i am back on strict eating and water water water

    good luck!
  5. Madelyn

    Madelyn New Member

    ...although I did have a small amount of strange pain. I'll just tell you what has helped me. First, an Atkins type diet: no sugar, low carb, very strict. I also take Transfer Factor, but I don't know how much that is helping. After about eight years I found a good Dr., and after doing this for a year, I am much better! If I eat sugar, I go RIGHT back to what you describe.
    Take care, I can really sympathize.

    Madelyn
  6. Dlebbole

    Dlebbole New Member

    a no-sugar diet seems to be key. Please get someone to help you prepare quick meals that can be frozen and easily used when you can't cook. And if that's not feasible, there are canned veggies that don't have sugar. You may have an initial period of feeling WORSE on no sugar (I certainly did) but it is so worth it. Do this! Diane
  7. david752

    david752 New Member

    I put an ad in the local paper and interviewed people to be my personal assistant (to do whatever takes effort). Several people seemed okay, but they didn't return subsequent phone calls. I gave up anyway because I get exhausted thinking about how to tell them what to do. I can't walk all over the house while they do cleaning projects (I would have to because I'm fussy about how things are done). I just can't imagine someone coming over to boil some carrots, fry some tofu, and heat some peas. It is just not worth anyone's time to do that.

    Sigh.

    I'm back to eating cookies and lots of spring water. Actually, I do try to eat some protein when I have enough energy to do more than eat out of a package.

    I guess my condition is my own damn fault.
  8. advancewithcourage

    advancewithcourage New Member

    No pain here - but fatigue, daily headaches and terrible brain fog.

    Keep working at getting some help. If you do not have the energy to eat well you MUST get some help of some sort. If you live near any Amish or Mennonites, they make excellent housekeepers and servants. A responsible housekeeper should not have to be followed around the house and should be self sufficient. Good luck.
  9. simka

    simka New Member

    David,

    Sorry to hear you're having a hard time. Good luck. Can only share my own experience.

    It's worth it to keep trying, good luck getting supportive medical care.

    Healthy food: I got a big assortment of nutrition bars, tending toward higher protein, and experimented. Always keep a bowl around, when I need a bite and can't do anything else, there I go. I don't leave home without one. Not as tasty as cookies but much better for me.

    Also keep Whey protein powder at all times, mix with water/OJ mix for quick hunger fix.

    Pantry/Freezer/Fridge: heat and eat soups, there are some relatively tasty and not unhealthy ones. Keep loaf or two of whole grain bread in freezer (not fridge) and take out slice or two at time to toast and have with peanut butter or good quality deli turkey or ham.

    To deal with my own fussiness/perfectionism: joining flylady website has been helping me. It seems geared to housekeeping but I don't have much to do in that regard, and I can do hardly anything so I delete/ignore most messages about specific tasks. The key message for me has been "baby steps" and overcoming perfectionism (and procrastination). Many subscribers apparently have chronic illness including depression. Key thing is to keep taking small steps. let some things go, and don't beat ourselves up about what we can't do. Some good tips as well.

    Keep going and keep posting.

    Simka
  10. Theresa

    Theresa New Member

    David,
    One way that I've found to eat healthy instead of resorting to junkfood around is to buy some frozen vegetables. All you have to do is take out the amount you'd like and microwave or steam them. Like one of them other members mentioned, buy some sliced turkey to have on hand. When I'm too tired to cook, I'll have a turkey sandwich w/ some
    canned soup. When you do cook, make enough for a few days.
    Also, if I can't find the time or energy to cook, I'll get takeout from a healthier place that has chicken rather than a hamburger, etc.
    Take care, Theresa
  11. kholmes

    kholmes New Member

    For me, it's CFS without much muscle pain but with the flu symptoms: fatigue, head pressure, painful glands, ...
    Diet has definitely helped me: LOTS of veggies, fresh veggie juices, some fruit.
    I'm also doing a long detox and taking Transfer Factor.
    Have a cold this week, so feeling pretty crummy.
    It's worth it to find a more knowledgable doctor. Check out the good doctor site or ask on this site if anyone knows of an excellent doctor in your area.
    Check out Teitelbaum's book, From Fatigued to Fantastic for lots of good information and treatments your doctor probably knows nothing about.
    There IS help out there!
    --Kholmes
  12. david752

    david752 New Member

    Thanks to everyone for the information. I especially liked the suggestion about protein powder.

    I like the name Simka. Carol Kane played a Simka on Taxi; I loved her character.

    Unfortunately, my diet management is complicated by two facts:

    1) I have low energy and avoid starting tasks that require energy, so I usually don't do things like heating a can of soup. (And for some reason I prefer a can of baked beans to a can of lentil soup, although I like both.)

    2) I have many strong food dislikes due to early childhood trauma. For example, the only vegetables I really like are peas and carrots, and only when well cooked. Cooking destroys over 80% of the antioxidants, and much of the nutritional content.

    I am not expecting anyone to come up with a solution: I have had over fifty years to think about this.

    Again, thanks to all for the messages.
  13. carole128

    carole128 New Member

    David
    I have just spend several minutes reading your post and all the helpful messages you received. There's a wise saying: That you can take a horse to water but you can't make him drink! You have to help yourself to feel better and not use your fatigue to play the victim role. Preparing and feeding yourself good healthy food is the most important thing you can do to nourish and love yourself. You have the choice to eat crap food and feel like crap! (you are what you eat) Or you can choose to spend a little time in preparing good healthy food. If you refuse to do this simple thing to help yourself then I don't blame your doctor giving up on you.
    At the moment you are like the mouse that just keeps going around and around the wheel. You feel low on energy so you eat high sugared food which makes you even more fatigued so you eat more sugar to give you a few minutes energy before your energy sinks again. Only you have the power to take back your power. Stop playing the victim and spend some time and money on healing yourself.
    I know I sound a really bossy cow. But sometimes a good kick in the pants does more then sweet talk.
    Carole
  14. Nannibel

    Nannibel Member

    This year I've tried very hard at changing my diet, I figure what we eat is just about the only thing I can control that might affect this disease. It hasn't been easy, but I've limited meat to a minimum and learned to eat tofu, beans and various kinds of lentils (good protein) , and vegetables that I always rejected before in my diet. I never thought I could get used to tofu, but I am and so are my kids (when youre hungry enough you'll eat anything!) and everytime I want toeat something sugary I just imagine new cavities in my mouth and it helps me change my mind quick. There are lots of frozen foods that are really healthy, look for them in the organic grocery store if you have one nearby.
  15. Nannibel

    Nannibel Member

    This year I've tried very hard at changing my diet, I figure what we eat is just about the only thing I can control that might affect this disease. It hasn't been easy, but I've limited meat to a minimum and learned to eat tofu, beans and various kinds of lentils (good protein) , and vegetables that I always rejected before in my diet. I never thought I could get used to tofu, but I am and so are my kids (when youre hungry enough you'll eat anything!) and everytime I want toeat something sugary I just imagine new cavities in my mouth and it helps me change my mind quick. There are lots of frozen foods that are really healthy, look for them in the organic grocery store if you have one nearby.
  16. david752

    david752 New Member

    carole128, Thank you very much for your insight. I suspect you are correct. I think I do feel sorry for myself and use my fatigue and my early trauma as excuses not to push myself to prepare good food.

    Although I agree intellectually, I feel powerless. Perhaps your words will percolate into my inner self and have some good effect. I can hope!

    Thanks,
    David
  17. spitz01

    spitz01 New Member

    Dear David, you have received many good suggestions. I have had CFS for about 7 years. My shower used to be all that I could accomplish in a day and then I had to sit on a bucket in the shower. Have you had a tilt table test? It really sounds like you are having trouble with Neurally Mediated Hypotension-It is where your blood pressure drops. I think you should check this out. Depression can be a by product of our condition not a cause.
    I also have started controlling my condition by switching to "low/no sugar no simple carb" diet. I am very happy with the South Beach diet. Check it out.
    I have just started to have a crash. My first in a year. Hoping I could find something here to help. Good luck you just have to start one step at a time.
  18. david752

    david752 New Member

    What is a tilt table test? Can I do it myself? I do not have symptoms of postural hypotension. I do not feel dizzy or faint when I stand up. My blood pressure is normal, perhaps on the high side a little, and does not drop when I sit or stand (I've measured it with a home sphygmomanometer).
  19. hollie9

    hollie9 New Member

    Back to your original question: I caught CFS about 10 years ago. My first 2 years were very painful, muscle pain, flu-like symptoms, could barely get off the sofa, could barely go food shopping.

    Then the pain went away and I have been muscle pain free, just have the other CFS symptoms, energy improved (not normal though). I did see a very good massage therapist about 3 times a week during my painful years.

    I also don't know what I would do without my house cleaner who does all the hard housework, she comes in once a week. I've been searching for everyday help but haven't had the energy to really put to it, although I have told everyone I know that I'm looking and word of mouth referrals are usually the best.

    For me high protein, no sugar, very low carb makes my diet situation better and I get more energy. I usually loosely follow an Atkins/Suzanne Somers diet, haven't read the South Beach diet but hear it's good and similar to those above.

    I don't know why you have been like this all your life, most people remember "catching" CFS.

    Good Luck
    Hollie
  20. simka

    simka New Member

    David,

    I just want to encourage you to take the next steps to help your diet. That is, get things into your house NOW to try that are better than your current diet.

    You said you liked the protein powder idea. I like vanilla flavor since it blends better than chocolate with other ingredients, and definitely go with whey rather than soy. Get a big canister of vanilla whey protein powder and some orange juice!

    On the soups, I think I saw where the Campbell Select line has heat in the bowl versions now, I assume microwave. I'm not able to shop so I can't swear this is true. Italian Wedding is a family favorite but we get it in cans to serve multiple people. Get a couple varieties in your next grocery list and try, I think these are just microwave. This is simpler than cans and stovetop.

    I guess it's too much to hope you'd like yogurt (not the sugar loaded kind, preferably)? Cheeses, other dairy products? A lot of kids even like cheese sticks, they are I think low fat mozzarella type and individually serving sized.

    For yourself, this week, just get a couple things in the house to try, enough so that for the next few weeks you will be able to resort to something besides cookies etc at least once a day. And also see what "healthier" sweets you can find, like banana nut bread or pumpkin bread instead of cookies. If you like nuts, get them, these are a favorite snack in our house.

    Try a couple of the things that sound easiest, see how they work, and go from there. You're not likely to change 50 years of habits in a few weeks or months, but you can work on one small thing for now and move on from there. But please take the small steps starting now! Good food helps almost everyone. Treat yourself to things that you like that are better for you! Make this your gift to yourself for the holiday season beginning soon.

    I wish you luck! Please let us know after the next shopping trip what you try and how it works for you.

    Simka