This must be what hell is like.......

Discussion in 'Fibromyalgia Main Forum' started by PepperGirl52, Sep 21, 2005.

  1. PepperGirl52

    PepperGirl52 New Member

    To have everything you really want to do, everything that you desire and DO to cause great, unending PAIN!!

    I have recently taken up beading as a hobby. And as a novice, I have to say, I'm doing pretty darn good. I've even had a few people ask to buy things from me that I didn't even have for sell!

    Well, of course, in the midst of loving this new-found hobby, just the sitting, the tedious moments, the strain, etc....all causes a great flare! I've been in tremendous pain-sleepless pain-for 3 days now. All from making a necklace and a bracelet!!

    What do you do? Give up EVERYTHING??????? I refuse! But how do you live like this?? I have been doubling up on my meds, and I can only do that so long before the docs and my liver start screaming at me!!

    AGH!!! Just needed to scream this morning. Thanks for hearing me out. PG
  2. nanday

    nanday New Member

    Hi Peppergirl52,

    I am so sorry you are in so much pain. What is encouraging about this site is we truly know how you feel.

    I am so glad that you have found something that you love to do to try to get you brain diverted onto something else besides the awful pain you feel. Maybe you can try some kind of pillows to help you change a position to support your back or neck when you are doing this beading? If your hands are hurting I heard that some people are trying that warm wax therapy, where you soak your hands in this warm wax machine (like they have at a salon). I may look into this myself to see if it helps. I sew and can hardly feed my cat a can of food (to open I mean with the can opener).

    My ears are here to hear any screaming you want to do!

    nanday
  3. Bailey-smom

    Bailey-smom New Member

    I start to flare when I quilt. Can you find a different way to sit while you bead? In a recliner with something across your lap?? Would that help?

    Kelly
  4. KJ2003

    KJ2003 New Member

    Hi Pepper,

    I'm sorry you are struggling so much with this and, no, you do not have to give up something you love because of this DD.

    Why not make yourself a more comfortable place to do your hobby? Can you put a heating pad on your back while you are working on your hobby, to keep those muscles lucid? Before you sit down and after you get up, do some stretches! Stretching really helps get those tight muscles unwound again.

    I drink Gatorade throughout the day and I've noticed a difference.

    Take some calcium/magnesium, too. I take it at night so it can go to work on my body while I am asleep.

    Maybe take more breaks when you do your hobby. Stretch, walk around a bit, move your head from side to side, etc. Try to maintain good posture. I know when I am doing research on the computer, I tend to get hunched over...I look like a mad scientist at work...lol.

    However, I am learning to do stretches while I am at the computer. One that really helps is putting my hands behind my head, arms out, head up, and slowly lean back...then go from side to side. This tends to get everything 'popped' back into position.

    Sorry to go on and on...just trying to help. Another good stretch is to grab onto the left side of the chair with your right hand and stretch. Push out a bit and, while holding on, lift your arm up a bit and then down and really work the stretch. The same goes for the other side. You get a really good stretch in those muscles that tend to spasm.

    I hope this helps. Also, at times you may want to alternate hot with cold, but you know that already.

    Don't stop your hobby...just begin again in a different way.

    ((((hugs))))

    Chin up,

    Kim
  5. Rosiebud

    Rosiebud New Member

    things I like to do just kill me, like sewing. It can throw me into a flare too for days.

    I'm going to try painting but I am quite sure I will be overcome by fumes or my wrist will hurt too much or some other part of my illness will stop me. I'm going to give it a try anyway.

    It's very frustrating. Hope you can carry on with your beading, maybe do a little at a time. I am very impatient, if I start to make something I want it finished quickly.

    Good luck
    Rosie

    I like
  6. gnanny

    gnanny New Member

    looks like a great hobby but I may have waited too long. My eyes arent very good, my brain cant comprehend the directions and my fingers are stiff enough that just buttoning my clothes can be a challenge.
    I still want to give it a try.
    I echo your sentiments...I already have given up so much. Whats left? Cant do, cant go, cant even eat what I like.heavy sigh.

    Soon I will be that old lady who shuffles around with her clothes buttoned up wrong....not even a hint of the vibrant, competent busy woman I was in another life.

    you're not alone.
  7. Mareeok

    Mareeok New Member

    ...someone scream this morning. I didn't know it was you (((((( PG )))))))

    I want to take up needlepoint again. I haven't done it in a long time because of pain. But now I will start again and just take my time. You have to pace yourself and throw away your old priorities. Approach what you want to do slowly and stop before you get frustrated. Try not to force yourself into your past abilities. Take baby steps and celebrate each good day. Have a small pity party when you need to and then count your blessings. That may sound simplistic but you need to remind yourself what a good and valuable person you are. I recall how not too long ago I was feeling like a failure of a mother. I didn't say anything about it and one day not too far after that my adult daughter started a conversation about how much she admires me. I was astounded. I felt so much better. We need to remind ourselves, often or else this pain will make us forget who we really are.

    Have a happy day today despite the pain.
    Maree





  8. PepperGirl52

    PepperGirl52 New Member

    Some great bits of advice here, and I definitely will try them.

    Being impatient is something that is most certainly working against me, and I have to slow down and take my time!

    Thank you all again-will change chairs, set up the heating pad ahead of time, get a little desk to work off of, etc.!!!

    THANKS!!!! I feel better already! PG