I can't stand feeling so exhusted all the time

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, May 15, 2012.

  1. rosemarie

    rosemarie Member

    I am so exhusted that I can't stand it. My body aches so much and I am so tired. I don't understand I have not done any thing that I would think would cause a flare yet that is how I feel.
    I was sitting in the chair about 10 minutes ago when I started to doze off. I slept better last night than most nights. In the past few weeks this has happened too many times. I don't get it why am I so tired all the time.

    What did I do to cause this extreme fatique , I dont' under stand why my body is acting up and why is it that I feel so tired all the time. It is a struggle to get up and do dishes, wash clothes just simple every day chores are suddenly exhusting. Just walking thru my house hurts like heck not just my knee's but my whole body. I need to be abel to clean the house , as my grandson is comming on Saturday night so he can stay with Nanna and poppa while mommy and daddy go to a wedding dinner. I need a clean house as he is 19 months old.
    I wil ask hubby for help and he will help but it still makes me feel like I am not doing all the things a wife who stays at home should be doing. Hubby really does not undestand what fibro is or the pain and fatique it cause's.
    I just want to scream tonight. I can't take it any more, I hate this feeling of exhustion all the time and the pain is so annoying and painful.
    Don't mean to whine about my fibro. just needed to vent a bit
  2. clementyne

    clementyne New Member

    You can vent anytime! We all understand because we have been there.

    And you know that you didn't do anything to cause this - that is 'stinkin' thinkin' ' that gets you nowhere!

    I guess that no one who doesn't have Fibro can understand the pain, fatigue and guilt that goes along with this DD.

    Do what you can, don't feel guilty about asking your DH to help out so that you can enjoy your little grandson while you have him.

    And know we are rooting for you & praying for your relief to come quickly.

    Thinking of you
  3. MicheleK

    MicheleK Member

    I wonder if you have been checked for ME/CFS along with your FM. Around 70% of ME/CFS patients also have FM.

    The reason I ask is that the exhaustion you are describling could be PEM, post exertional malaise which is a hallmark symptom of ME/CFS. Fibromyalgia will make one possibly feel fatigued but not so much to the degree you descibe. Me/CFS would cause the crushing exhaustion or feeling as if you got hit by a train or Mack truck.

    Symptoms can come from out of nowhere since these disorders affect the signaling from the brain, immune system and endocrine system. Your activity does not necessarily have to be involved, except of course when we have a good day and go out doing tons of stuff then relapse bad.

    Look over the symptoms of ME/CFS & FM on the internet at: www.treatcfsfm.org. It is a wonderful self help website provided by Dr. Charels Lapp and Dr. Bruce Campbell, both experts on ME/CFS & FM.

    Wishing you some relief and answers. Sending a hug,
  4. sunflowergirl

    sunflowergirl Well-Known Member

    I have two wonderful little grandkids....a boy 9 and a girl 4. I've missed soooo much of their lives because of FM/CFS. It makes me cry at times.

    I also get the AWFUL fatigue that seems to come out of the blue. Something that I feel helps me is I start to drink TONS of water to flush my system. I'm talking at least 2 quarts or more.......and I also add some fresh lemon juice to the water. When you start to pee again and again, and it's clear then you know your body is getting flushed of toxin buildup. I'm terrible about drinking water during the day.....usually just coffee and my water to take pills. It's something I have to keep reminding myself about.
  5. hermitlady

    hermitlady Member

    I agree, I'm sick of being so wiped out all of the time. I've been in a phase where I'm sleeping 12 hrs solid everynight, don't sleep during the day cuz I take Provigil, but so weak and fatigued.

    I can't do much around the house either, short spurts and then rest. Seems like I never get anything completely done. It's so discouraging.

    The thing that helped me in the past was stimulant meds,, but they end up backfiring after a few wks. I build up a tolerance quickly and have to increase dosage and then crash horribly after a few days.

    Same w pain meds, used to take Norco and had to quit after 3 yrs or so due to having to increase dose...and it made my pain worse in the long run. Part of the morning pain I had was due to withdrawal symptoms... until I took my first Norco of the day, and then the cycle repeated.

    Over the last yr I've tried several meds including Lyrica, Savella, Cymbalta, Pristique, thyroid meds and a few others. None of them agreed w me and I never noticed any improvement in symptoms. Maddening.

    I take various supps and herbs recommended by my doc, he keeps trying to help me and is very patient and kind. I cry just about everytime I go in to see him, he knows how miserable I am.

    I've seen several specialists for all of my dds, but nobody has helped in the long run. So, I totally relate!
  6. jole

    jole Member

    I totally understand. My dx was FM, but I know it also includes CFS. The pain is horrible, but the fatigue is even worse.....because I think it brings on the greatest feeling of hopelessness and worthlessness. Pain is easier to explain than being to exhausted to move, in my opinion. Some days it's too exhausting to remember to take a deep breath! How do we explain that to anyone and get them to understand?? Not gonna happen...., so we get horribly depressed. Just remember it's not YOU, it's the disease.

    Our mind and spirit still has the need and desire to do and accomplish things, and we want to feel usefull and fulfilled; yet we fight this body that absolutely shuts down on us like a spoiled donkey! Then we worry and the anxiety gets the best of us....panic attacks plague me. It would all be funny if the script were different........

    My home was cleaner when I was working full time and raising 5 kids, I kid you not. Does it bother me? You bet! But I can only do my best. A few minutes a day keeps the tops of things presentable. I do worry about everything my kids will have to sort through some day, and try to do a few things when I can. That's all I can do. My days of marathon cleaning are long gone! Don't expect more than you're able to do.

    I too have tried so many meds over the years.....soooo much money down the drain. Now I take very few meds. I feel no better, and no worse, but am not causing myself more harm. Still take Tramadol, xanax, and a couple anti-seizure meds...and some supps.

    Just remember that through it all, you are not alone! When you hurt the most, or are too tired to get yourself out of a chair, you're not alone! We're all with you, encouraging you and understanding........Hugs......

  7. Kittyweird

    Kittyweird New Member

    RoseMarie- Pro health makes an excellent product called Fibro Energy. I could not get anything done without it!
    I have also cut out high fructose corn syrup from my diet. Read labels as it is in many things. HFCS can cause energy crashes. Cleaning up my diet has helped me have more energy. Staying well hydrated seems to help also. I drink filtered water or iced green tea.

  8. pogwarden

    pogwarden New Member

    I have to deal with CFS. Been at it for 10 years or so. I understand how you are feeling and send you my best positive vibes. You said something in your post I felt I needed to comment on.

    "...it still makes me feel like I am not doing all the things a wife who stays at home should be doing."

    This kind of thinking is self-destructive big time. Over the last 15 years I've watched my wife take on more and more of the household duties. Today, I have a hard time just getting the energy to empty the dishwasher. Being a guy, particularly a once-upon-a-time tough guy, I feel its my duty, my responsibility, my obligation as a member of my marriage, to provide for my wife and family.

    Since I am forced to stay at home, the household chores should be taken care of by me. Sadly, long gone are the days I used to have dinner on the table for when my wife returned from work and the house tidy. Sigh.....

    The feeling of being a worthless member of this relationship has pushed me to the brink of ending my own life. Every time my wife comes home to a dirty kitchen I feel ashamed. She does so much for me.

    Anyway, I am rambling. Please stop feeling like you aren't doing your part. You..we...do the best we can. Sometimes its more, most times its less.

    Everyday I tell my wife I love her and I thank her for all the things she does to keep us together as a family. I send her silly little notes, and an occasional plant. Although it isn't much, I never let her forget I know the stress and workload I cause her.

    OK, I'm done. CFS changes lives. I wish you all the happiness in the world. As has been said so many times, you are not alone. Out here we have lived it, experienced it, some have learned how to adapt and share their thoughts.

    I have a great deal of respect for your husband. Let him know you love him and perhaps the feelings of self doubt will be lessened.

    Lastly, remember to do fun things twice. Its a rule.
  9. MicheleK

    MicheleK Member

    The very best thing we as people with these terrible illnesses can do is to share our experiences with one another which leads to us all realizing we are perfectly "normal" for a person with such an illness. It is important for coping well to understand that it is the illness and not our real selves that keeps us from doing what we use to or what we would like to do.

    We are not what we do. We are who we are as a person and as Christopher Reeves wife said to him "you are still you". I have learned so much more on how to differenciate between what is the illness and what is not since coming online a couple years ago and sharing with people like the ones on this board. Thank you all for being willing to tell your experiences and feelings. It does help.
  10. rosemarie

    rosemarie Member

    Thanks to Michele,for reminding me that I have worth, no matter what dd I have. Fibro may reside in my body and wear me out but it does not own me. I do. I am the one that can chose what mood I am in and what I am going to do about it.
    Thanks for reminding me that I am no alone in this battle, that men as well as women live with fibro and each of us feel alone and like we should be doing more than we do, I think it would be really hard for a man to have fibro in the society I grew up in where men were the bread winners and women did the house work.I bet your wife likes that you do help her when you can and that you are making an effort to be a good husband. And you are one.
    Jaminhealth,Kittywierd,Jole, Hermitlady, Sunflowergirl and Clementyne,
    you all had such great thoughts to share with me, they all made me stop to think that dispite the fact that I have a disableing disease I can do things of value, most of all for sending me a boot to the head. Stop feeling sorry for your self.
    It is one of the hardest things to do, I really dont' need to look very far before I find some one else who's life is much harder than mine and that I have so many blessings to be thankful for.

    I can count quite a few. Seven of the sweeteest grandchildren who love me and want to do things with me if only sitting on my lap and reading them a book, or playing in sand box with them. I get great happiness when I hear those words " Nanna , I love you, can I come to your house and have a play date?
    I need to read and put into my life the Serenity prayer.
    "God grant me the serenity to accept the things I cannot change
    Courage to change the things I can change,
    and the wisdom to know the diference"
    Some times it is so hard to accept the dd that I can't change and to know that my attitude could be better and I would be happier if I accepted that knowlege and changed what I could and let go of what I can't.
    I won't promise that I won't feel down on my self again because I am human and I know that hurting and fatique can make your mood not so great.

    I know that i am a woman of value, I can do things that make me happy and share what I have made with others and it will make them happy.
    It is time to have my hubby go out to the garage and find my tole paints, brushes, books {of which I have many} and wood that I can paint on. I have two different type s of perpetual calanders that I want to paint and to give to one of my girls and a friend. I have alot of differnet precut wood that I could paint and when I am painting it makes me relax and feel much happier.

    Thank you all for helping me to wipe the fog out of my eye's so that I can see that dispite the pain that I feel and the fatique I feel , I still can do some thing that I enjoy and it will help me to not dwell on how I feel.
    Thank you all for the suggestions. About the fibro energy I have looked at it but it costs too much for to spend at this time. With my hubby not feeling well and not being happy with his job money is really tight . But thanks for the thought. One question, I am having a brain blank what is ME? I can't get my brain to work right and understand what it is and how it affects us.
    Many hugs to you all.
    [This Message was Edited on 05/18/2012]
  11. Kittyweird

    Kittyweird New Member

    Rosemarie- I have been going through a very tough time about this illness also. Feeling worthless & frustrated. Luckily, I have a wonderfully supportive husband.
    I spend most of my days alone & sometimes it is a very lonely life for me.
    I think you are right in that we have to remember who we are & that we do have value.
    If I did not have my art work to do, I would completely lose my mind! I say get out those paints!
    Money is very tight for me also. My husband works 3 jobs for us to survive. But I would be in worse shape if I did not buy my Pro Health supplements. Fibro energy is $30 if you sign up for the Savings club ($2.99 shipping). There are 90 capsules in a bottle. I only take one a day, so it averages out to only $10 a month. Just a thought.
    Take care,
  12. hermitlady

    hermitlady Member

    It helps so much to hear from others who are living similar lives w these dds. I woke up feeling like I was beaten up while I slept. Cried within the first 5 minutes of getting out of bed.

    I came back here, read all of these posts and feel a bit better mentally. We all need each other's support at times.

    Tears and hugs for all of you.....Hermit
  13. MicheleK

    MicheleK Member

    We all get days where we feel we just can't take it anymore. It's just natural. Who, after living day in and day out with so many limiting symptoms wouldn't get worn down? It's so nice to know with an internet connection and places like these, we can be in touch instantly with another patient who may be able to make us temporarily forgot the cares of the day. What did people do before the internet????
  14. rosemarie

    rosemarie Member

    Thank you for all your thoughts and suggestions. I want to thank every one on the board for your understanding and acceptance, I want to let you all know how special you all are too me. Knowing that I can come here and vent really is helpful and I don't feel so alone, God bless you all
  15. BlueSky555

    BlueSky555 New Member

    I know how you feel and go ahead and vent! If anyone has had FM pain, then they know how it can make you ache all over.

    I was having the exhaustion also but did nothing about it until it was time for my bloodwork. Well, my blood was low; something like 8.something (sorry I forgot) but dr put me on Iron and I have been on and off of it for 6 years now. Of course the next time I go, I'm going to tell him to stop playing around with my health and lets find the problem; not just a "fix for now" thing. All along, it has been anemia.

    Just wanted to let you know; get your bloodwork checked regularly.

    I hope this helps some Rosemare,

  16. BlueDiamonds

    BlueDiamonds New Member

    Hi Rosemarie: Just an idea - when you get a blood test can you also ask that your levels of Vit D 2 be checked? Low levels can cause severe body pains in additional to the CF. This test can be done by the primary care doctor and the Vit D 2 is about $10.00. It is very difficult for family members to understand why we have the extreme fatigue, fibro, etc and cannot do regular things. Terry
  17. sixtyslady

    sixtyslady Member

    I just sat here and read your post,Back in april I started to have alot more pain and chills with a low grade temp. Now I have fatigue so bad I can hardly do nothing around the house and just have become so depressed. I"m 1 of the few here who have trouble taking meds,most of them make me worse.
    Have no Dr, I just gave up going to them they always make me feel like it,s just a make believe illness ,so I have no respect for Dr,s anymore.plus I"m on Medicare & part B so there,s not many around here that want to deal with it.
    As I read all the post I realize just how many of us are so fatigue to me that is the worst part,pain I can use my thera cane & heat, and my hubby is good at finding the knots and getting them to release. I found a muscle relief lotion it,s green in color it helps my tense muscle,s. you can buy it at walmarts, anyway I just want to say reading the post helped me out tonight,just knowing I"m not the only one in the world that feels like this,we have Graduation parties tomorrow for Grandkids, I pray that I can get dressed and make it. Sixtyslady
    [This Message was Edited on 06/08/2012]
  18. CalSailor

    CalSailor New Member

    I've had fibro for more than 20 years (getting it diagnosed has been a problem; military doctors did not want to hear it, so it has been diagnosed for about 15 years.

    I have a pain mgmt neurologist who is relatively new to medicine and is very smart, and very compassionate. I told him that I was so frustrated because I was always exhausted, and that if I took a nap in the afternoon, it turned into a 3 hour (or longer) crash. I would literally be so exhausted I couldn't move. It is, in fact the reason that I had to give up parish ministry. After Sunday AM services, I could not participate in Sunday afternoon/evening events I was so exhausted. So the doctor asked if I had tried Provigil. I said no, and he wrote a script for 200 mg taken once/day. I take in the morning, either just after getting up, or later in the morning. It has given me back my life. It has NO side effects for me; it doesn't make me high, doesn't make me dopey, has no crash...it just lets me live a normal life. I understand this was developed for the military, so that missions that lasted many hours could be completed by pilots, tank drivers, etc. Many troops in Iraq in that first race to Baghdad took the meds for a couple of days.

    Provigil has just gone generic, so you might want to see what your doc will say.

    I can't say enough good things about this med. A couple of doctors I've talked with have had nothing but positives about it. (A friend who has cereberal palsy and has had difficulty walking long periods because of the challenge of moving. On this last trip we were on, it was apparent the days he had taken it...he could stand more upright, his gait was smoother and he could walk more easily.)

    Pr Chris
  19. rosemarie

    rosemarie Member

    since I was last tested for vitiamn D levels. Is there more than one test for vit d Levels ? I don't know what vit D2 is? When I had my vit checked it was really LOW so for about 6 months I was taking 50,000 units of VIt D3 once a week , I had to go in every few weeks and get my levels checked again.
    AFter a while my tests came back saying that my levels were at a low normal, so my rehumy took me off the 50,000 units and told me to take 2,000 to 3,000 units daily. I have been doing it.

    But I have not asked to have my levels checked again, I thought that my doctor would want to know what they are at least once a year but I guess my rehumy does not care about me as a patient. Who knows. AFter this past 2 months I am not so happy with him.

    I will call him and ask to have the levels checked before my next visit ,Which by the way is not till December. 2012.

    I don't really want to go back in and have to pay the $40 co-pay just to have my levels checked and to have him call me a week to 10 days later and let me know what the results were. But I am going to talk with his staff any way.

    I am so old school , when my pain problems started I would call the doctor and speak to him , not his nurse, receptionsit, the doctor. I liked that it worked well for me, I knew that he was listening to my problems and was telling me what was best for me in treatments. I hate it now when I call I get his nurse, or receptionist and they ask my questions. But I never know if they really asked the question like I would have asked it. Did they say every thing I wanted to tell him, every symptom every thing that I felt was important for him to help me with my pain problems. I don't know, I never know if his staff really spoke to him or just said they did and told me what they thought he would say. OR maybe they did talk to him but did not word my problem as I would have and he did not really understand my problems realted to pain.
    I know that when I could talk to the doctor my self I knew he heard what I said how I felt, what was happening to me and I knew that he understdood and helped me in the best way he could. NOw I don't think he even knows when I call and ask questoins.
    I would change doctors but getting one who is willing to keep me on the same meds as I am on now is really hard.

    Most doctor's even pain doctors don't use pain meds and are really big on injections and other invasive things. I am not they injections and steriods only cause me far more pain than I started out with so I don't want to ever do them again.

    Going to a new doctor thinks that treating me with out pain meds is the best way to go.. I know this as I have talked to many different doctors about treating my fibro and cmps.

    I get the same answer we don't like to use narcoitcs as they are addictive. I am already on them and dependant so what is the big deal.? I take my meds just like each script was written and I dont' take any more and most of the time I try to take less.
    I am gettting off the subject, Vitiman D I didn'td know abot the different types of vit D.
    Thanks for your sugggestions.
  20. Sansofpa

    Sansofpa New Member

    Hi Rosemarie,

    My current situation is almost identical to yours.

    I'm more exhausted now, than I have been recently, like you.
    I can't put my finger on anything to cause some of my flares - like you.
    Next weekend my son and his family are coming to visit me -
    Friday through Monday, and my grandbabies are 3 months old,
    and 3 years old- like your visit.

    I'm so happy you'll find joy in your grandson's visit :)

    In days gone by, I would be cleaning relentlessly. Now I'm barely
    able to wash my own dishes.

    My plan, because I don't have a husband, is to clean one area at a
    time, rest, and start over. I will have a spotless house by next Friday
    even if I am tired or have pain . . I have no other choice.

    Do you notice that if you do something physical today that tomorrow
    you suffer more? Last Saturday I cleaned my bathroom, and on
    Sunday, it felt like I was hit by a truck and had the flu. I can't
    recall feeling that way when I went to bed, so it seems to be a pattern
    of the "next day flare" with me. I must pay close attention to this,
    because I may be onto something - that my body is telling me -
    and that might be the answer to unexplained flares.

    I do have a question . . how do you know if you have CFS and ME along
    with FMS? I read about them, and along with FMS symptoms, I have
    the symptoms related to CFS and ME. How would a doctor know,
    and is everyone actually diagnosed with all three, or because the
    symptoms are present, they include the others with their FMS
    diagnosis? I go to the Reumatologist for the first time next Tuesday
    and don't know if I should bring this up or not. Opinions?

    I still work full time and barely make it through the day.
    I start at 7 a.m. and by 2 p.m. I'm a zombie . . and everyone at work
    knows it. Some days I don't know how I drive home without collapsing
    behind the wheel.

    ....I want to scream, too . . but it would probably cause something
    to hurt!

    Enjoy your family and I wish you well,

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