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Hello from Oregon Newbie looking for support

Im new to the site and wanted to say hello and introduce myself. Im not someone that would normally post things online or join a group but i've reached a place in my life that Im needing to reach out and find support. However small that may be. When you feel alone and hopeless you have to do whatever you can to turn things around. I 've been living this back deal for many years now and just when I thought I had made peace with it. It took over with a vengeance.
A little background... had my first surgery at 23yr. Lamectomy L5-S1. No idea why it happened. 10yrs later Surgery 2, Microdisectomy L5-S1 I injured it lifting a box. That didn't work so Surgery 3, 1yr later Fusion L5-S. A couple yrs later had a Spinal Cord Stimulator implanted then a yr after that it was removed along with all the fusion hardware. I then adjusted my life to live "disabled" with chronic low back/leg/hip pain. Worked part time here and there when i could. I came to peace with what I couldn't do anymore. I thought ok this is as bad as its going to get, I can do this, I can stay positive and live in pain.
BUT then about 6 months ago in a brief lapse of judgment I went to pick up a large basket of clothes and turned weird. And just like that what I thought I was at peace with has become unbearable. Its not just my low back now, my entire spine and neck are enraged. Im in more pain than ive ever experienced and ive experience some pain. Not only pain but my left arm and shoulder are weak, shaky. Im dizzy all the time, headache. I haven't had more than 2hrs of sleep at a time. My chest even hurts. I cant tolerate oral opioid medications and so far cant get the insurance to approve a patch or something other than a bottle of oxy (which makes me sick) and strong Ibuprofen. So far ive only seen my pcp and its taken him 5 different referrals to get an appt with a specialist to be evaluated. Again, insurance issues. Im now 6 months waiting but finally got a dr to take me but my first appt isnt until mid July. Im not sure where the strength is going to come from to deal with the pain that much longer. I made another appt with my pcp to beg for some kind of help before then. I just dont know how to do this anymore. Im right back at square one but even worse.
I feel so defeated.... thx for listening but most of all thank you for posting and sharing. Reading your stories this last week has gotten me through alot of rough sleepless nights.



  • SavageSavage United StatesPosts: 7,270
    So sorry for all the pain you are enduring.
    It is so good you are able to see a specialist.

    I see you have posted other times, areas I have not come across, so you may have received such suggestions already ...I am thinking of sleepless nights.

    It is very good you continue with your primary doctor as you attempt to somewhat under control until July appointment.
    I was wondering if your doctor could help you with your sleep deprivation in the meantime?

    My sleep is at least more stable now, but at first , going without sleep, I was wide eyed, or wild eyed, I had difficulty concentrating on what was going on about me...I wanted to pull my hair out. In combination with the chronic pain, well, quite a living nightmare.

    I had a sleep study and then medicated to address the issue.

    That was years ago. My norm now may be a night a week, sometimes two, of no sleep. But so improved!

    Is your primary able to help you get some sleep?....even if only to get you through until you appoinment with specialist?

    I wish you all the best
    Honorary Spine-Health Moderator
    Please read my medical history at: Medical History

  • dilaurodilauro ConnecticutPosts: 13,435
    the following is some general information that should be helpful to you as you become familiar with this site

    please take the time to read this post and refer to it when you have questions

    i am sure that you will find your time on spine-health very rewarding. this site is a powerful and integrated system that is dynamic and growing.
    here are just some of the highlights that are available as tabs on the main spine-health menu bar

    spine-health main menu tabs

    conditions detailed medical libraries of articles and videos that address almost every spinal condition.
    treatment list of treatments to the conditions identified by spine-health.
    wellness section contains articles, tips and videos to help patients after surgery and also to help people avoid surgery.
    medical articles
    pain forums these are the forums you will be using
    find a doctor this provides with a method to search for doctors in various locations.
    videos index to all spine-health videos

    as a bonus, spine-health provides these patient forums. here you can meet thousands of people who understand and can relate to your situation. you will soon become part of the spiney family[/u] who provide comfort and the advantages of a support system. you are now part of this family that is approximately 27,00 international members and growing daily.


    - it is very important to understand the forum rules to make sure all of your posts[u] do not violate any of the rules.[/u]

    - all new members must read our faq in order to understand the layout of the forums, how to navigate through the forums, helpful terms, how to make effective threads and posts, plus a link index to many of the important medical forums and key medical articles on spine-health forum faq

    i am positive any member, new or old will find this chroinc pain - step by step thread very valuable.

    here are some links that all new members need to review to create effective threads and more

    read before you post
    tips for newcomers
    understanding the rules

    all of this will help make your threads better and improve the times and quality of responses you will receive.

    you can also find spine-health on these social networks

    facebook www.facebook.com/spinehealth
    pinterest https://pinterest.com/spinehealth/boards/
    twitter https://twitter.com/spinehealth

    if you have any questions or need assistance, you can use the private message facility to[u] contact any one of the spine-health moderators



    doug hell

    also working with us very closely is allison walsh from the spine-health company


    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
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  • Yes Savage the no sleep is a nightmare. I experienced this years ago with the fusion but guess my brain blocked how bad it can get. Before these last 6months my normal was 4-5hrs of sleep a night most nights at least but now im lucky to get 1-3hrs at best. Week after week its building and i feel completely crazy. I feel so much guilt for my family and what they are enduring with me. My daughter for mothers day got me a massage certificate that im using today. Im very excited! Met with my pcp this morning but didn't get far. He said until I see the specialist there's not much he can do. He upped my muscle relaxer to 3xday and im going to try a prescription sleep aid. So after my massage im taking one and praying for a few hours of sleep. You don't realize what sleep means until you don't have it.
    Thank you for the info and links. I did things backwards lol but thats nothing new. :) Reading and research have become my night time friend....that and my ice pack!
    Thanks again :)
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