My thoughts on Fibro -- do you agree?

Discussion in 'Fibromyalgia Main Forum' started by marcus1243, Nov 18, 2002.

  1. marcus1243

    marcus1243 New Member

    Hi everybody. Over my tenure with this miserable affliction, I've picked up a few observations which I thought I might throw out there and see if any of you feel the same:

    1)Forums like this messageboard are more useful for symptoms and explanations than just about any PCP out there.

    2)Fibro doesn't get better or 'burn itself out', it just changes. It might become more neurological or more arthritic, but it definitely evolves.

    3)The fear of having or developing a more devastating and chronic illness is one of the worst things about fibro.

    4)Supplements are one of the first lines of defence against the illness.

    5)Once you're on the supplements, you pretty much have to stay on them because you're body adjusts, and it reacts negatively to being without them.

    6)No two people's fibro is the same.

    7)Heat is heaven, cold is hell.

    8)You can have a good day, but you can never feel well again.

    9)Just when you think you've beaten one symptom, another one crops up. Then the old one comes back, lol!

    10)You find out pretty quickly who your real friends are.

    Hope you're all getting by,
    --Marcus
  2. marcus1243

    marcus1243 New Member

    Hi everybody. Over my tenure with this miserable affliction, I've picked up a few observations which I thought I might throw out there and see if any of you feel the same:

    1)Forums like this messageboard are more useful for symptoms and explanations than just about any PCP out there.

    2)Fibro doesn't get better or 'burn itself out', it just changes. It might become more neurological or more arthritic, but it definitely evolves.

    3)The fear of having or developing a more devastating and chronic illness is one of the worst things about fibro.

    4)Supplements are one of the first lines of defence against the illness.

    5)Once you're on the supplements, you pretty much have to stay on them because you're body adjusts, and it reacts negatively to being without them.

    6)No two people's fibro is the same.

    7)Heat is heaven, cold is hell.

    8)You can have a good day, but you can never feel well again.

    9)Just when you think you've beaten one symptom, another one crops up. Then the old one comes back, lol!

    10)You find out pretty quickly who your real friends are.

    Hope you're all getting by,
    --Marcus
  3. nogilroy

    nogilroy New Member

    yes i have to agree on all ten .sorry for the short note . my back is burning now and that is new . Feels like a sun burn . bye for now.
    norma
  4. Mikie

    Mikie Moderator

    I think you pretty much have this nailed down. However, I'm not sure about number eight. I have had some remissions where I have felt well, not perfect, but well. I'm talking about not just an absence of symptoms but also a feeling of well-being, optimism. I believe these are the remissions produced by the Gaui. So far, unfortunately, I have not been able to sustain these remission periods, but I continue to hope that one of these days, my remission will become permanent. It could happen.

    Love, Mikie
  5. phenom

    phenom New Member

    sounds just like it to me! its still amazes me to come on this site and see people describe 'my' life - i couldn't cope without it. good on you.

    phenom
  6. Rozmund

    Rozmund New Member

    Dead on Mikie - I would like to add - in each day if you do listen to your body - there is a window of reduced discomfort - for me I found it is very early in the morning - so that is when I do stuff that is important - before brain fog sets in - I usually nap between 7 and 9PM - and then again I feel better and usually do the laundry -
    both of these time periods reflect times in my life when the family is otherwise occupied and when I can be alone - to groan and grunt to myself - move slowly without questioning eyes - with my eye on the goal of completion rather than the painful trip of getting there. But when the week is in - I still have managed to get things done and do feel good about myself.

    Last year I laid a winding sidewalk 20 feet long and 6 feet wide using small patio stones that each weighed 8 lbs.
    I had the fun of planning it out mathematically, purchasing the stones to exactly fit my drawing - It took me all summer - and I did a bit every morning from 6-7AM along with my walkman and my coffee - but I got it done and it looks great - after each episode I soaked for an hour in an epsom salts tub - and took my calcium to replace the calcium loss that happens after drinking several cups of coffee - I look at that walkway now daily with pride - it did not take anything away from me - my life has not been shortened - my FM is not worse exactly but yes it has progressed to include more of my body systems.





  7. joyof3

    joyof3 New Member

    Hello,i agree with you. This board has been a life saver for me,and I just love to come here,and read what others with this DD are also dealing with. This board has made me see I am truly not alone.

    stephanie
  8. tedebear

    tedebear New Member

    Right on the money. Nice sum-up.
    Soft hugs. Fibro friends on this site are awesome.
  9. pam_d

    pam_d New Member

    You're makin' a lot of sense, man!!

    #7, for me only, I would amend to "Heat is hell, cold is worse hell"!! My body can't deal well with the extremes, either extreme cold or extreme heat. That's just me.

    Take care,
    Pam
  10. klutzo

    klutzo New Member

    I would've agreed with all of your points before I went through Menopause.
    Now, I have to disagree with Number 7. It has finally turned cool here in Florida, and I have a new lease on life. I am hot all the time since "the change", and the heat saps my strength. I am getting up two hours earlier already since it cooled down and taking my dogs for a nice walk outside again.
    Klutzo
  11. marcus1243

    marcus1243 New Member

    Sorry, should've remembered that LOTS of folks with Fibro don't like extremes of temperature. Goes for CFS too.

    So:

    7)Being overheated is hell. Being too cold is hell again. And being just right is near damned impossible.

    ;)

    Marcus

  12. Shirl

    Shirl New Member

    Marcus, I just disagree with #8, I had remissions twice that I remember that lasted a year or more. I truly though I had beat it, then it came back with a vengence!

    Also #7, I live in Louisiana, the humidity and heat is draining. I feel so much better in the winter months. More energy, clearer head etc.
    But I agree that heat is necessary close to the body. If I can keep my body from getting chilled, then the pain is way down no matter what the temperature.

    I keep the house at 69-70 degrees year round, I feel better putting more clothes on that having the athmophere warm!

    On all other points, you are right on the mark.

    Shalom, Shirl
  13. Shelle16

    Shelle16 New Member

    I agree with you totally! Except for me Extreme Hot and Extreme Cold is h*** for me. I used to love summer swimming, jet skiing, etc. This year I did not even bother to put on a swimsuit.I still have some friends but, some just act like I'm nuts or insociable because I don't go out anymore.

    HUGS
    Shelle
  14. loonie

    loonie New Member

    In not bothering to "put on a bathing suit" are we to assume that you also did not bother to go swimming? Otherwise, mayhaps that is why some friends think you are nuts? LOL

    For me the heat has always been unpleasant, but I inherited that from my mother, who cannot tolerate weather above 70 degrees and prefers 50 degrees. I can tolerate up to 80 but am not real happy.

    Part of this comes from having excellent circulation due in part to not having plaque in our arteries(confirmed by my mother's angiogram at 70+ years and my carotid dopler ultrasound at 54 years). This in turn comes from not drinking homogenized milk. My mom does not like milk and has not drunk it since whe was old enough to say no to it, and I do not care much for it and since I found out what homogenization does to milk, I have only consumed raw milk, or at least not homogenized.

    All the other fibro stuff seem to be true to me, also.
    Happy days, Loonie
    [This Message was Edited on 11/19/2002]
  15. LisaMay

    LisaMay New Member

    You hit it square on the head! I've made a copy of this for my doc - I think he'll appreciate it.

    Have a great day. Lisa