feel so bad how do u cope?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by suzi123, Feb 12, 2013.

  1. suzi123

    suzi123 New Member

    Today is not a good dayits days like these I feel like giving up haven't been able to get out of bed absolulty knackered haven't been able to eat any food so feel sick exhausted tight throat dizzi like a zombie can barely sit up have just lay all day and night in the dark I listened to meditation music but didn't make me feel any better am so fed up I just feel I will never get better I have cried most of the night, I can only hope tomorrow is a slightly better day but I will still be bed bound unfortunately, how does everyone else cope? I feel so bad a lot of the time I wish I just wouldn't wake up and be put out the misery
  2. gb66

    gb66 Active Member

    I'm so sorry you're still feeling so bad. Do you have anyone to help you with meals or housework? Any family or close friends.

    I have had CFS and FM for many years, in addition to other problems and I do know how hard it is to live like this. Last night my husband and I were talking about it and he said to remember, one day a time.

    I told him one day at a time is still hard when each day is painful and exhausting! He knows it's true, he's been with me ever step of the way.

    This is a cruel disease but I know you have the strength to do it too. Don't give in to feelings of doom. It will get better. All your days won't be like what you're experiencing now.

    I wish I had some great wisdom or super advice to give you but all I know is that I do take it one moment at a time and I still have hope that I'll get well one day, that we all will.

    I pray and keep on going. I'll pray for you too. Try to ease up on yourself and remember none of this is because of anything you did or didn't do. It's just a disease, not a failing on anyone's part. Hugs and Prayers, GB66
    [This Message was Edited on 02/12/2013]
  3. luigi21

    luigi21 Member

    Can identify,had an awful night 2 c it as a bonus when i do sleep. Sometimes its better 2get up and have a milky drink (studies in england found this the most beneficial. See if your body temp has dropped 2mine does although i often feel hot my temp is 35.8 and until l can get that up i wont sleep so i make a warm drink and put my heat pad on. Constipation dont help sleep either or sometimes i just have 2get up becos of pain or aching. Nothing worse thn everyone takes slerp for granted. I take 2mg of melatonin 2hours before i go 2 bed anyway
  4. skeptik2

    skeptik2 New Member

    Have you been tested for POTS, NMH or OI? The dizziness suggests you have a problem with blood pressure, to me. Many patients do have this.

    The first two years I was sick I was bedridden. I realized much later that my body was enforcing complete rest or I would really have been much much sicker even though I felt I was surely dying. However, after 23 years of this, I know that the complete rest and sleep helped me recover to a "only" moderately ill patient.

    I hope the enforced rest will help you recover, but I do think you need to see a doctor about the dizziness upon movement.

    skeptik2
  5. suzi123

    suzi123 New Member

    What's pots, nmh, or oi?

    Thanks
  6. Ronaldo60

    Ronaldo60 Member

    ...and I vowed long ago when I was also a total mess with CFS I would tell the world if I ever discovered a cure; the stress-hormone approach to CFS has been ignored mostly, but follow the advice of endocrinologist Jefferies who would have put you on a two-week trial of the "good" stress-hormone, hydrocortisone (cortisol). The easy way to do this trial is use the equal-in-strength 5mg/day prednisone, very easy to get a prescription (for any chronic inflammation issue) or simply borrow some if you can. You might literally find yourself coming back to life in a few days, mentally at first, then physically. If you improve with the test, then maybe think about supplements, etc., and see if you can slowly taper off prednisone as you start sleeping, producing more of your own cortisol again, etc..
    Worth a try for sure, as most of the other well-meaning advice around here is sadly probably not going to help you, and most doctors are clueless too!
    You should check out Dr. Teitelbaum's work on CFS as he was a sufferer himself and is an expert on the stress-hormone angle. Hang in there kiddo!
  7. mamie43

    mamie43 New Member


    Hi suzi123. It saddens me to know that this Dreadful Illness has taken another body. I was diagnosed in 1992ish? and was able to work part-time for a few years and juggle good days and bad days. But, I have been suffering a lot for almost 2 years now. My good days are on holiday I guess, :) and the bad days are here, day after day after day....... I'm not totally bed ridden as I can sit in my comfy sofa chair and watch t.v., or read. I can also use the computer for an hour or so. I recently decided to learn Spanish. The internet is filled with websites that offer lessons for free. I found the reading and learning difficult at first because of the fibro-fog, but I made sure to ease into it. Just a few pages at a time; it was all that I could tolerate.

    Before the holidays I even tackled a jigsaw puzzle; 500 pieces. I didn't rush myself or try to do more than I felt comfortable with. I pace myself with everything I do. I haven't been able to do much housework so my hubby sometimes does some. I was a clean freak in the past but I had to learn to let it go. "Its not going to kill anybody", is what I had to repeat to myself quite a few times and now it no longer bothers me. Sweeping the kitchen floor puts me to bed for half a day. Its not worth it. Please don't feel bad about crying. We need that once in a while....it helps with coping. I'm a mental help therapist (retired) and I think its very important to see your doctor if you find yourself giving up with life. Please try to find something you enjoy doing and that you can tolerate for a few minutes at a time. Let me know, please if you've started something to do.
    Hugs, Mamie43
  8. Serenity123

    Serenity123 New Member

    I just wanted to say that I understand how you feel. i am newly diagnosed with this as well as another autoimmune disease and am not only in a fog, pain and no energy now I am also depressed at the prospect of feeling like this the rest of my life?!? I read online forums and sometimes they overwhelm or depress me.. I am learning to listen to my self and when something feels good do more of it and whensomething feels depressing or hurts do less.. I know that seems obvious but I think (at least for with brain fog and overwhelm) that sometimes we forget to make what is important for us as an individual just as important as other people's advice .. I keep questioning myself and how I should be reacting and comparing mslef - "I should have better attitude at least I dont have cancer". W can get good at beating ourselves up - be kind to yourself first and formost! Patty
  9. Saoirse3

    Saoirse3 Member

    I know how much pain hurts! Sounds dumb, but when you're body hurts your spirit does too. I've been right where you are since the New Year. My family is a mess and I'm supposed to be the strong one! I have wished so much to be teleported to an uncharted island, accessible only by helicopter! But since that isn't happening anytime soon, I do this. Find ONE thing, no matter how small, that is important to YOU!! For me, it's my backyard zoo, as I call them. I started feeding a raven one day. He looked cold and miserable, so I gave him some bread. He came back. Every day, for five winters, "Nevermore" has returned to y yard. In the meantime, I learned everything I could. I feed him differently, and he now brings his family. I know you won't believe this, but on my birthday there was one rose sitting on my car. Nobody but my husband knew it was my birthday and I had said halfheartedly to Nevermore that it was. A rose? In February? In Alaska? What had I given when I had so little to give? Well, apparently it was good enough. And for me as well. But there are hundreds of people and animals that need cheer, and what I find is that doing for someone or something is a tonic. TWO benefit! And always be kind to YOU! You deserve it!

    Soft hugs,
    Stacey
  10. sunflowergirl

    sunflowergirl Active Member

    You have such a way with words and know how to lift someone up. I love the thought that perhaps this raven did find the flower for you..........I believe angels come in all shapes and disguises. Perhaps this is one who visits you to lift your spirts seeing how your family is bringing such pain to you. I really hope that you keep a daily diary......along the way I'm sure it would be something to be published for others to read.

    Suzi......I'm sorry you're going thru a rough time. I think what I HATE the most with all of this is the fibro fog and the dizzies I get. There doesn't seem to be anything that can help this. I tend to have a bit of hypoglycemia (Dr. St. Amand has a whole chapter in his book on this) so I've learned I have to keep a steady supply of protein coming into my body. As soon as I get up in the morning I eat a cup of cottage cheese, since it's the highest in protein with the least amount of trouble. I also eat some almond butter throughout the day, always have protein for lunch and dinner and then almond butter before I go to bed so it will carry me through the night.

    Did you know how gold is refined? It's heated up really really HOT, the imperfections are skimmed off and when you can see your face in it then it has been made perfect. When God can see his face in us then he knows you also have been made perfect. Sad thing is, none of us want to go through the tough times filled with pain and sadness, ME included. But when we've come through it we can see that this is the time we've grown the most.

    A tree doesn't put out good fruit unless it has been pruned and shaped, fed and watered.
    [This Message was Edited on 03/15/2013]
  11. rose515

    rose515 Member

    This is rather long.

    I was in the same place with my health as you are about 12 years ago. Everyday is a struggle but I am no longer bedridden. I still do not have sustainable energy or sustainable immune system function. I think I was at the bottom of the barrel at some points in time. I have learned a great deal thru research and connecting with others in a similar position.


    Lectures by Dr. Lapp and Dr. Tietlebaum may be helpful as well as other lectures by docs on the topic of cfs. Whatever controversy you meet you can still go forward. I think remission is possible even if genetics is a factor. My first episode of disabilty I recovered from after 1 year. I did not have relentless fatigue at that time but my immune system could not keep me well. When I finally felt well I returned to work and within 8 days had shingles. I later recovered and did return to work for many years.

    Supplements that I use that are helpful to me are as follows:

    1. Probiotics -I use GOLIVE because it is the only one that really works for me and allows me to digest and eat a greater variety of foods. Find what works for you as it will help keep your gut in balance. CFS usually causes persistant gut issues.

    2. DGL-complex by progressive labs. It is for improving gut issues

    2. D-Ribose helps with energy- the brand Now has some chewable wafers that are easy to take and not as pricey. There is another one by pure encapsulation with added Peak ATP which works better but it is pricey.

    3. NT factor energylipids powder by allergy research group. Super pricey. If you know an RN or doc that can help you get these products at a discount that would help. They would have to be ones that are into holistic medicine.

    4. Foods, juicing and supplements that support the thryoid gland, the adrenals and the liver.
    If you can't afford any supplements or don't believe they can help you can always start by making some improvements with super healthy food choices.
    Gluten and dairy free are choices I have made as well as almost 100% animal free at this point in time.

    A very soothing drink I learned about from wathching Dr. OZ is as follows:

    8oz of almond or rice milk heated on stove with a dash of cinammon,
    1/8 to 1/4th tsp of tumeric and
    1/8 to 1/4th tsp of cardamon.
    The tumeric may not be well tolerated but if it is it can decrease inflammation.

    If you have a blender of vitamix:
    Almond milk and or coconut water plus 1/4 of a banana, 1/2 cup frozen or fresh spinach, 1 oz flaxseeds, 1-2 tspoons of coconut oil, a few frozen pineapple pieces, and a scoop of ultrainflamx (metagenics powder) or whey protein powder by Biotics research group. If you don't have this add some walnuts and 1-2 tablespoons of almond butter. I add to my drinks green powders that contain lots of greens, fruits and chlorella and spirulina, aloe vera juice. A good green powder is NANOGREENS.It's organic.

    4. Addressing all hormones can at some point prove most beneficial.There is lots of info on this topic here. If you are young it is a bit more tricky but very worth reading about. Many people are deficient in iodine. Food can be the best choice here or at least a good place to start.


    Herbs & supps that are helpful are Rhodiola, ashwaganda grapeseed extract and resveretrol.

    5. Vitamin D is super helpful for improving immunity and joint/muscle aches. I suggest getting your levels checked and research what are optimum levels. Also for muscle aches and all over body strength I use a tiny dot dose of a compounded testosterone cream. The prescibed amount would be way to much for me. My older age plays a factor in my choice to use this hormone. Holistic docs are best to consult.

    Magnesium liquid topical by lifeflo or ancient minerals. I can only use 1 spray in am and pm as I get gut issues otherwise. You may not be able to tolerate this until you improve.

    6. A liver cleanse which I did with the help of a doctor at one point in time pulled me out of the grave.Try to find a doc for this. It truely was a life saver. No words can express the benefit.

    7. I find that periodically I have to take cleansing herbs to rid me of excess bugs in addition to taking the GOLIVE. Some of those herbs are wormwood, cloves, grapeseed extract and black walnut hull. Perhaps the peptide injections or some other thing will eliminate having to do all this stuff.

    Other helpful things that I have used

    Sinus problems--sinusalia by borion

    D-mannose for urinary tract infections-I used this right after a surgery that required catherterization. It hepled tremendously.

    Hope this provides some help.
    ruby













  12. tjblueeyes

    tjblueeyes New Member

    I try to stay away from negative and sarcastic people and pray a lot. Sometimes crying helps. I think God gave us tears to help us get through sometimes. Remember, there is always somebody worse off than you. I do know ,though, that it's hard to get off that pity potty at times. We are stronger than we think we are