Please...need advice...Is all this just from CFS?

Discussion in 'Fibromyalgia Main Forum' started by CinCA, Mar 1, 2006.

  1. CinCA

    CinCA New Member

    Does anyone get symptoms anything like this?

    I have times I feel "fine" and get a lot done. I feel like I beat this DD, like I'm really getting better. Eat healthy, sleep okay, get in a little exercise, actually make it to things on time.

    Then, and it always is turn-on-a-dime then, everything changes 180 degrees. I feel so sluggish, under the weather. Often I start out very stressed/hypersensitive to stimuli, and will get a lovely migraine. Then, it's like my body starts to shut down. Senses are dulled, muffled...I'm awake but processing speeds are slow. I barely want to eat, and I know my blood sugar is wacked out, but I don't even get the urgent need-to-eat signals. I am tired but can't sleep, and I go through the day like a robot. It's so hard to process clocks/time, and I am late to or don't plan well for anything. I get so little done, although I can read things online or watch TV okay. This keeps going and going for awhile, then it "flips" again and I get some energy.

    I am so sick of this cycle. It is not a mood change...I am always in a fairly okay mood, and if I do get ticked off/overwhelmed, I usually have very good reason and I get over it quickly. But I am so tired of the "down" times, which sure feel more phyisical than mental. I'm in one now and suspect my body's doing a "toxin dump" (it tends to get rid of toxins all at once), because I am eliminating a lot more than I am taking in, if you know what I mean. My nose is also dripping constantly, I generally feel unwell/slightly chilled, and I've gone through this so many times (even the loss of appetite) that I can see it from a mile away.

    Again, does anyone have any idea how to better cope with this cycle/keep it from being so disruptive? Or is this just what I have to keep dealing with for awhile? It's frustrating to start good habits, like diet and exercise, and then have it be all I can do to eat breakfast and get my kid to and from school for a week.

    Thanks for any advice!
    [This Message was Edited on 03/01/2006]
  2. pepper

    pepper New Member

    Two weeks ago I had the best week that I have had in 13 yrs. I walked a long walk every day but one for 10 days and was able to cook supper almost every night. Last Thursday the fatigue hit me like a rock and I struggled to do a short walk. After that my back seized up and I have been able to do next to nothing for a whole week now.

    It is very discouraging. A week ago I thought that I had finally found a combination of treatments that was actually working. Now I am so discouraged and wonder if I will ever get well.

    We just have to keep on truckin'. The bad times will come to an end and hopefully the next good spell will be better than the last.

    I don't know where we would all be without hope.
  3. CinCA

    CinCA New Member

    I very literally have not one person I can talk to about this apart from this board....

    Thanks so much for at least telling me I'm not crazy, as I always wonder when I get like this, and there is an actual medical (well, maybe :) ) condition that can be causing all of this. It gives me hope that maybe I CAN fix it, someday.

    {{{{BIG HUGS}}}},
    [This Message was Edited on 03/01/2006]
    [This Message was Edited on 03/01/2006]
    [This Message was Edited on 03/01/2006]
  4. CinCA

    CinCA New Member

    I'd appreciate as much input on this as I can get, esp. how to try to tone down/beat these "flare" cycles. I feel a little better tonight...hopefully I am on the upswing, but we'll see.

    Thank you so much!
  5. LittleBluestem

    LittleBluestem New Member

    To tone down the ‘flare’ cycles:

    1) Eat regularly whether you feel like it or not, especially if you know that your blood sugar is out of whack. Lack of appetite is common with CFS, but that does NOT mean that you do not need to eat.

    2) Stay away from the TV. Even if you feel like you can do it OK, it is still consuming energy which you do not have to spare. If you are not doing something constructive, be lying down with your eyes closed. I think it is OK to have music or the radio playing, but others might say not. (I find music keep my mind quieter when I am not sleeping and I rest better.)

    The real key to reducing the frequency and severity of the down cycles may be to tone down your up cycles. This sounds like a ‘push/crash cycle’. You may be doing too much during your up cycles even if you do not feel like you are.

    Some liver support might prevent toxins building up to the point that your body does a ‘toxin dump’. Probiotics also might help in the long run, but can produce some toxins in the short term, especially if you have a candida overgrowth. Maybe even some controlled detoxing would be better than this ‘whenever my body has had enough’ routine.
  6. AnnJ

    AnnJ New Member

    Hi Cinca,
    One of my previous DR's told me that sometimes we have to force ourselves and enjoy an event and not count the cost but rather the enjoyment we gained. I thought he as nuts as i was complaing about the late night hockey games and then next 2 days put me in major flares! But i learned that he was right on the money.
    Yippee I got my new Dr today without any problems.
    Hope that helps a bit!
  7. CinCA

    CinCA New Member

    For your good ideas! Nice chatting the other evening, too, Ann. I so appreciate everyone's support. Still in a flare, but it helps with the virtual friends on this board.
  8. greatgran

    greatgran Member

    So glad to read your post it sounds so much like me except I have never had more than 5 good days..Then within an hour it can all change..

    When this happens I can't make myself do anything but rest that is all I am able to do..Its hard for me to get to the bathroom..So I rest get to feeling better, only to start the same cycle over again..

    Don't have an answer but sure can relate..

    God Bless,
  9. jane32

    jane32 New Member

    but I still searching for answers myself. I can start to feel good and then crash even when not doing anything so I learned to be more spontaneous and enjoy my good days. I make sure I get iout of the house and spend some time doing errands or being with my husband and family. Even on good days I can only put in about 4 1/2 hrs. before I start to get a headache and feel lousy!
  10. CinCA

    CinCA New Member

    It's good I am not the only one, and I actually sound more productive than most (but more 'cause I have no choice). Still, it is so frustrating that we go through all of this and so many cannot get any sort of relief.

    I keep looking for answers, any kind of incremental improvement. But it's so hard when a lot is tied to stress, and I have so many chronic stressors I can't really change. All I can say is please, if this is all CFS, don't assume this is how you will have to spend the rest of your days. Don't give up. I know for me there IS a reason I feel so awful and it's something I CAN do something about, however small. Just how I get through each day. I wish you all find your answers, too, and you do get to where you have more good days!

  11. NyroFan

    NyroFan New Member

    You will do another 180 and improve again. Just give it some time and rest as much as you can. Like you said, it is physical, not mental. When the body winds down it is telling you something. You will get to feeling better soon. Just let this pass. And it will.
  12. CinCA

    CinCA New Member

    Love the screen name! I am in a big chocolate-craving mood right now...haven't in a long time. Splurged and got some organic dark stuff at TJ's (Trader Joe's) yesterday. :)

    Yes, my daughter is in preschool/pre-K 5 days a week now, from 9 'til 3 if not longer (she likes staying late as there are no little kids around here where we're renting). So I do have a lot of time to myself, and I should be doing better. I think all the stress/changes just overwhelm me, and I am notorious for having good days where I feel fine and then get flares 'cause I do too much. I was doing fine for a little while, though, which is really hard as it's unpredictable.

    I do see my dr. next week again, so we'll see what he says. And I am toying with seeing someone recommended up here as well as maybe calling the Torrance FFC. But our insurance is changing in a couple of months re: the new job, and it would be better if I could hold off.

    Hopefully I will do the 180 soon and feel better. I also am going to make sure I go to bed early all this week, right after I put my daughter down. Hope that helps.

  13. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    you're not alone for sure.

  14. jacampbell

    jacampbell New Member

    but I was diagnosed bi-polar for years. Then when I got older and my body could not take it like it use to, I starting getting the pain. Then they decided I had FMS.

    My son has been diagnosed as bi polar but I think I might have him check for FMS.
  15. cathugs

    cathugs New Member

    my rheumy has always told me to always rest and do nothing on my good days,and to push my self on my bad days,and do all i possibly could stand to do on my bad daxxxxxxxxxxxxxxxxxxxx Love Cathugs
  16. zerped

    zerped New Member

    I can really relate: any time I'm not bummed out on what I can't do, I'm secretly plotting ways of "beating the system," which always results in...well you know the rest.

    I often find myself at the computer a few hours after I woke up, and I'll feel the change come on like a tidal wave. I see myself as an hourglass with all the sand sifting down to the bottom. Or I'll feel like I'm inflatable and someone just let the air out of me. I don't have much of a problem with the tv, but when I'm at the computer, I lose track of time. Then I get hit with a "fatigue wave," and I'm too tired to get up out of my chair and take three steps to the bed!

    Thanks for the reminder(s) everybody. I will remember for the rest of the day the advice I read from a doctor to his CFIDS patient: "Write down as much as you think you can do today without causing any repercussions. Then do only half of what's on the list." (!)

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