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Help for a struggling boyfriend

sptg45ssptg45 Posts: 1
edited 02/12/2015 - 11:21 PM in Chronic Pain
My name is Steve (25) I came across this site by chance and from what I have seen so far it looks wonderful and it has given me hope that my girlfriend Beckey (23) could finally find the support and help that she desperately needs!! A little background
she was diagnosed at a young age with Chiari 1 malformation which from what I can tell through our/my research she has many of the symptoms to a severe degree, severe migraines, dizziness, neck, and back pain trouble moving head and arms in certain ways etc. she has been bounced n and out and around to many different doctors since a young age with many diagnosis and no real headway made or solutions to her pain, she was recently diagnosed with fibro myalgia for severe joint pain and shooting pains from her neck to her feet. (Sorry for the book here) even in the 2 years we have been together I have seen her move from doctor to doctor none of whom seem to know what is going on with her and most don't seem to eager to find out, a lot of oh its this, no he was wrong its this, couldn't be that not sure what could be causing this.... It breaks my heart to watch the woman I love be brushed off or be treated like just another file, her pain grows worse each day and her hope and willpower to keep trying get less and she loses her spark and her fight she cannot sit up, lay down, stand, walk anything without tears or cries of pain. No matter how hard I try I can never know the agony she is in everyday, I am at a loss as far as how to help how to support, I do my best to make everything as easy on her as I can but I feel that I cant do enough and am at a loss for what else I can do.... I suppose that I am looking for advice on where to turn what I can do how can I connect her with people in the same position as her. I will do whatever I can do for her! We just need to know we aren't alone in our struggles

Thank you all for taking the time to read this and to make a wonderful website such as this

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Comments

  • LizLiz Posts: 7,888
    edited 02/12/2015 - 11:21 PM
    Welcome to Spine-Health

    Use that above hyperlink to help you get started with Spine-Health and navigate through the system.

    If there are any questions, you can always post them here, send Liz or myself a private message or contact Ron rdilauro@veritashealth.com

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • itsautonomicitsautonomic LouisianaPosts: 1,933
    Have you been to a Chiari malformation specialist ? I am not to familiar with it other than I ran into some people who did well after surgury, they were having many symptoms that were thought to be autonomic issues, but it was from the malformation.
    Who diagnosed her with fibro ? I suggest doing some reasearch to see if chari can mimic fibro and educate yourself on both fibro and chari as much as you can.
    Lastly I commend you for being there for her and as a chronic pain patient I respect you. Its a hard battle with health issues, but even harder without love and support from family/loved ones. You sir, are a gentleman and a scholoar :)
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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