It'sAll Invisible, Though I Can See It

Discussion in 'Fibromyalgia Main Forum' started by irox, Oct 7, 2008.

  1. irox

    irox New Member

    Well like my title says I can see it and I need to connect with others
    that do too. When I was a teenager I suffered insomnia and many
    restless nights have plagued my life ever since. Many days of
    horrendous pain and numerous things happening with my body. I was
    diagnosed with Crohns Disease about 14 yrs ago. I have had 2 right
    colectomy's and have been through loads of procedures and test. About
    5 years ago I was told I had Osteopenia and reconfirmed less than 2 years ago. Though
    it is reversable for most people, soon I find out why it's not so easy
    turning the clock back for me. This past year has probually been the better
    of all 14 for my Crohns. Feel somesort of remission trying to happen and pray it
    stays on that coarse; to somewhat of a break for me! So what next?
    About a year ago I was diagnosed with Fibromyalgia. I had never heard
    of this and could not even pronouce it at the time. I have pretty much
    been in constant pain throughout my body with this and need to try
    something. I need a healthier lifestyle and encouragement to push past
    the pain. Crohn's is painfull as it is, very painfull and well just an
    ugly and embarassing illness. My fibro, give me a break, painfull and
    debilitating all the time. No one I know can see what happens with
    me. Only I can experience the nasty pictures of such an invisiable
    canvas to others. Well anyone with similar days....? Anyone see what I
    see? My family is awesome, and they think they know it all, but they
    can and will never see it all. Even if God let them, I wouldn't want
    them too.
  2. mujuer

    mujuer New Member

    Well you found a great site for people to connect with. We all do see what you are talking about. We know what it is like to live with this awful stuff. Most of us suffer from more then one thing like yourself. There is so much information and help here.

    Yes family and friends think they might know what you are talking about but nobody really knows unless they have it. Please google "spoon theory" and "a letter to normals". These are great to hand out to friends and family alike.

    I hope you have found a good doctor to work with. Most of us have gone thru alot of dr.s just to get diagnosed and many others to get treatment. What works for some won't work for others and that includes, med's, treatment protocols, foods, etc., etc. You will find out usually by trial and error. P
  3. canap

    canap New Member

    I have Fibro and my significant other has Crohn's..He has been doing well for few yrs after starting Remicade, but in last couple of months the fistula's are threatening again and seems like flu off and on. I have been in a flare for over a year now. Life just doesn't want to let me slow down enough to get passed it. To others I'm not doing much at all. They don't know what it costs me just to do the floors or bath the dog. Most of the time I not to let it bother me. I keep trying new things to help with this DD but I guess will just have to pick very carefully what I do, I'm glad you have an awesome family, it makes it much harder when they don't understand these diseases.What do you take for your Fibro? I hope you feel some relief soon.
    [This Message was Edited on 10/08/2008]
  4. sweetbeatlvr

    sweetbeatlvr New Member

    just wanted to welcome you, and tell you i can relate, unfortunately.

    you've come to a wonderful place. stick around and absorb as much info as you can.

    you're among friends.<3
  5. irox

    irox New Member

    I will definately go look at those. And yeah my doc that I have now Dx me almost year ago. Was having pain probs about 2 1/2 years though. She and get along well. though I have an appt with a pain clinic at the end of the month. My Gi and I wanted to have one person handling my pain, so we'll so how that goes. Thanks for info.
  6. irox

    irox New Member

    Thanks for your reply. I live my BF and he is diabetic so I know what go through in the matter of both you having chronic illnesses. My meds you ask. Well for Fibro, Lyrica, Cymbalta, fentanyl patch, (oxycotin for crohn's and fibro), vicodin, and flexeral for bt pain. Do physical therapy as well and going to a pain clinic at the end of the month. Hopefully buying my tens unit soon. I also have a paraffin bath at home for my hands and feet(heat therapy). Oh my that is a life saver sometimes. Well good luck to you and thanks for that reply.
  7. jasminetee

    jasminetee Member

    Welcome! I was reading your Bio and though I see you had Sx (symptoms) like insomnia and a teen, I was wondering if you have looked into Lyme Disease. The reason I bring this up is that you mentioned you had to have your knee drained many times. I think that can be indicative of LD, (Lyme Disease).

    Here's an article about a Documentary about LD with a comment about knee swelling and needing to be drained with LD:

    I know what you mean about others not seeing our pain and sickness. That's the most difficult part of suffering with these invisible illnesses. I hope you can find some relief.

  8. homesheba

    homesheba New Member

    i also have crohns, since i was 27-
    and now i am 54.
    and yep- went thru all the surgeries and stuff,
    it is a miserable thing to have,
    and like you and many here,
    thats not all i have to put up with health wise.
    but i think-
    with all the health stuff i do have,
    the fibro/c.f. is the absolute worst.
    it seems to be sapping away
    my life slowly but surely.
    atleast with the other illnesses,
    they come, hit hard and get somewhat under 'control',
    but this nightmare stuff just hangs on and on,
    never relenting one little bit.
    i sure am sorry you also wound up with it.
  9. irox

    irox New Member

    Hey, I was going look at your profile b4 I sent you a message. Btw thanks for the kind words. I am from the south!! I live in North Cali, but I am from Houma. Born and raised. All my family is still there, so I visit very often. Are you familar with houma? would be weird if we know each other? Always said small world. hope we can be friends on the board. I am very new to boards and stuff, so please forgive me for the off subject. Hope you have a good evening,
  10. irox

    irox New Member

    homesheba, thanks for your reply. My GI doc say that the fibro is secondary to Crohns. have you had anyone tell you this? He does not care about it though. Thankfully my primary is an internalist and treats it very well. I have an apptweek after next with a pain clinc. Gi says... that my crohns pain comes first because it is chronic(sp). Thankfully my primary is the one that did the referral. Gi sent sent my info to clinic as well. Hopefully things go well and I can have one person handleing my pain meds. Seems like you and I have alot in common.hope you keep touch.