The 12th Invest in ME Research Conference June, 2017, Part 2
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Rare Good Days

Discussion in 'Lifestyle Management' started by Carrigon, May 17, 2011.

  1. Carrigon

    Carrigon Senior Member

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    Today, started off with some lightheadedness. But by this afternoon, after getting some more sleep, miracle, felt better. Nearly no fibro pain at all. Just plain felt better out of nowhere.

    I think there's a real hormonal link for me. I had some spotting this week and bloating and just have that feeling like I'm going to get my period and didn't get it yet. And all of a sudden, I feel better. The only other time this happened to me was when I was on the Ortho Tri Cyclen. That made my fibro pain pretty much disappear when I was on it. I wish I could still take those pills, but I don't seem to be able to take any of them now.

    I still have fatigue today, but the pain level is much better. Of course this will not last, it never does. It's one of those rare days where I get to see what it would be like if I was almost well. And then tomorrow, I will probably be screaming in pain again and want to die.

    I rarely ever have good days anymore. This is so rare for me. It's such a shame it never lasts.
     
  2. Carrigon

    Carrigon Senior Member

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    I've crashed now, but at least I had several good hours. I just wish that would have lasted.
     
  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I hope you get more good hours soon!
     
  4. alex3619

    alex3619 Senior Member

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    Hi Carrigon, I had numerous "good day" episodes in the late 90s through 2001. They were associated with higher antioxidants and other supplements in diet. They lasted for four to six hours at a time, but on one occasion I went to bed on a good day and had a good nights sleep. Bye, Alex
     
  5. Leslie

    Leslie

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    Rare good days....I can relate. I became sick sometime early 2000, I was pretty bad for quite a few years, then had some good years, not great, but could get out. Now......rarely a good day. maybe a few hours. I am not sure why. Stress? Yes, there has been a lot of that lately. Probably the reason, I just wish I could have a good day.

    Here is praying for all of us a good day!
     
  6. Carrigon

    Carrigon Senior Member

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    Today, I'm right back to being sick and in pain, just as though I didn't have any good hours at all. It's just so awful because those rare, rare times when I don't feel like this, it's like so cruel to show me what I might be like if I were almost well. And then to take it away again and give me the pain and fatigue and the million other symptoms. It's cruel.
     
  7. Nielk

    Nielk

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    Hi Carrigon,

    I think that we all go through times when we are feeling a little better and then right back to where we started. It's very frustrating. Do you think you could figure out what triggers the "better times"? Maybe it's when you are more relaxed for some reason or maybe it's something in your diet. We all need to be detectives to try to figure out how to have more of these better moments. I know that with me, I can pinpoint a couple of things. The less stress I am dealing with, the better I feel. (It's just logical sense)In addition, if I'm able to get out to sit at a beach or take a scenic drive, the beauty of nature seems to affect me positively. Another thing that I'm very sensitive to is the quality of my sleep the night before. Even though I hate taking drugs, I do it for sleep because I see a big difference when I get a good night sleep. Then again, many times there is no rhyme or reason for my decline but I try to pay attention as to what is different in my life to affect me that way.
    I hope I made any sense to you. I do get how frustrating it is.
    Be well,
    Nielk
     
  8. Carrigon

    Carrigon Senior Member

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    No clue what triggers it, just that I think there's a hormonal connection. That, and maybe whatever it is goes dormant for a very short period of time.
     
  9. drex13

    drex13 Senior Member

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    It's almost like if we want to try and figure these things out we would have to document every minute of everyday, what we did, what we ate, what supplements we took and when, etc... and then see if a pattern or patterns emerge over time. But this would be so very time consuming, not to mention both physically and mentally taxing to a group of people who already have very limited physical and mental resources.
     

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