CFS - what are your flares like...

Discussion in 'Fibromyalgia Main Forum' started by CarolynAnne, Jan 9, 2006.

  1. CarolynAnne

    CarolynAnne New Member

    Just curious, for those with CFS, what happens when you have a flare? Can you predict when a flare is coming on? How do you get through your flares?

    For those that are single, how do you get through it alone? My mother drove 2 hours to my house because I did not answer the phone for 2 days, and she was worried. I feel bad about putting this extra stress on my parents.

    Last week/this past weekend I had the worst flare of this DD. I am concerned that my flares are getting worse with each epsiode. I am curious for those who have had this DD longer than I if there are any "secrets" you can share.

  2. LISALOO

    LISALOO New Member

    They just come on suddenly, I usually can't tell why. I don't eat differently, sometimes i do do more than I should. I'll just wake up after sleeping extra long then feel worse.

    Just let your parent know what a flare is like, my mom knows that I won't call her and not to worry, it's just that I'm extra tired and can't get out of bed.

    Yes, each flare is worse lately, in terms of length.

    I wish I could give you secrets, but mine to to try to stay positive, tell myself I've gotten through them before, and rest extra!
  3. jane32

    jane32 New Member

    Well i have two different types. One is my fever cycle where I feel like I have the flu for 10-12 days every month-almost like clockwork-I get it around 4th of every month. My fevers go as high as 101 which makes me feel awful I learned to deal with them now since I know they will go away in ten days. But the first day or two I usually feel sorry for myself and cry in bed. The others one come on with no warning. I just wake up feeling exhausted and unable to do anything productive-like a hung over feeling. I learned to track my schedules it gives me a sense of control. I am in my 20s but married. I am happy to have someone but at the same time I just want to move forward and be like every other normal couple.
  4. elastigirl

    elastigirl New Member

    A visit to the dentist and infected tooth brought this one on. It's pain, pain, pain, exhaustion, pain, no sleep, exhaustion, and yes, more pain. The pain starts at my jaw and radiates throughout my body from there, hitting the joints and neck the hardest. I've had a non-stop headache since my appointment a few days back. No amount ibuprofen is touching this non-stop headache.

    In the old days, I'd catch a cold -- shakes, fever, pain, no-sleep, no appetite, no strength, migraines.

    I think it's only by using my supplements that I don't sink that far as often now. But the irritability from lack of sleep and non-stop pain -- watch out!

    I am single -- plus a mom. I feel so guilty when I'm like this. Meals are minimal. Sandwiches, canned soup, cereal. It makes me hate myself sometimes. But I know it's a flare and that it will pass. I least I really believe so.

    Secrets? Forgive yourself for the shortcuts you have to take. Sounds easy, but it's really so tough to do.

    Emotional stress, substantial changes in weather and tooth infections have been my major warning signs. However, sometimes they just come out of nowhere. Those are the "smasher of plans" flares.[This Message was Edited on 01/09/2006]
  5. greatgran

    greatgran Member

    I think I stay in a flare. I do have some better days but I never feel well even on my so called good days..

    I doubt my Dx. so often because I don't think I have been dx..the docs say I think
    its cfids or it is some type of immune or autoimmune disease..So I have just given up on doctors because I don't feel like going thru the hassel anymore..Or them telling me there is nothing they can do..

    Back to the crashes, I do seem to have a pattern..If I awake around 5 am especially with a sinus type headache then that day will be spent in bed..My patterns seems to go like this..I will have what is a good day for me and I will try to do a few things around the house or some errands..
    the next day I may feel more tired but albe to get up and do what is necessary..
    Then when I start having vision problems I know I am headed to bed..My vision becomes blury, I feel weird in the head, maybe like sinus or allergy problems, Then the big anxiety/depression hits big time, my ears ring 24/7..sometimes I feel like I have the flu other times just I feel terrble and can't describe it..Can't make any plans cause I never know when it is going to hit...Sometimes I think its when I over do but then there are times when I don't do much at all and it still happens..I feel mine has a lot to do with
    multiple chemical sensatives..not sure but I sure do get discouraged but try to keep positive..and be thankful for my good days..I never run a fever, my temp is always below normal, my EBV is still high positive, my ANA is very high, my c-reactive protien is high, my blood is thick, my liver labs are elevated, my ekg
    abnormal but my echo and holiter monitor were ok...and my doc doesn't seem to know what to do so nothing is done..

    This has been going on for 5 years and I never have one good week..More like up 3 days in bed 4...

    Sorry didn't mean to write a book about me, but I am searching for answers as to why I feel this way ..what doc to see, what more labs to have etc...

    Can you relate to any of this...
    greatgran
  6. zerped

    zerped New Member

    When I first had symptoms of ME/CFIDS, the headaches, dizziness, fatigue and confusion were all ineffect 24/7 for about three months. When I began taking amitryptalin, the severity of these was reduced. As I've learned more and treated myself more effectively, they are more sporadic. I am about to have my hearing for SSDI, so I do not try to work 40 hours a week. That was a BIG step. The best "treatment" I've discovered is prevention, and that means "pacing."

    If I can find the link, I'll put it up here, but an 18-year-old girl in Belgium who got this disease (at age 4!) came up with a process for not doing too much in any given day. Briefly, every 1.5-2 hours, go someplace quiet, close your eyes, and just lie there for 30 min. You need to start defining "activity" differently. Sitting up in a chair requires energy, so it's an activity. Closing your eyes and listening to relaxing music is not "rest," it is an activity. So hit the hay every 2 hours, tired or not.

    You will begin to be able to identify the causes of flare-ups. If I spend 5-6 hours driving to get to my sister's, I know that there is a price for me to pay the next day. If I'm feeling good and decide I'm doing so well I won't take my "breaks," my symptoms are much worse the next day.

    Probably the most important thing is keep a daily "log" and track what activity did you do, for how long, how did yu feel, what did you eat, how much sleep did you get, what did you take, and even what the weather was like that day (the majority of people with our disease have "SAD"--seasonal affective disorder)!

    This place is great; keep coming back. You won't believe how much you can learn.