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The day has arrived

itsautonomicitsautonomic LouisianaPosts: 1,819
edited 10/03/2015 - 7:39 AM in Chronic Pain
I was referred to a dual pain management / neurologist to talk about why my pain levels are so intense and have such an adverse effect. He has officially diagnosed me with central pain syndrome from spinal cord injury and possible CRPS after seeing a picture of my foot swollen and skin damaged that I need to be monitored for but since it's been so many years the trophic changes are not as obvious. I am officially in pain management the rest of my life as meds are really only option and no cure and will be worked up with strong neurological meds and narcotics in future to control the pain. its considered intractable now.
I am beyond let down since this means the current job I work ismt really an option any longer. I guess life doesn't care how hard you work. But I'm exhausted beyond measure and the toll the last 4 years have taken on my life are just overwhelming so I accept this defeat for now. Everything I did in school was to reclaim my life and stay out of surgury and pain meds. In the end it didn't matter, that I beat it all when just around the corner lived the hardest thing I would ever experience. It's a sad, sad day for me. Disappointed in medical field that could have possibly prevented it from getting here if they listened early on instead of saying its in my head, disappointed in my family for thinking I was a hypochondriac even though I never have been in my life, disappointed in myself for not being able to beat this. Just plain disappointed that no matter how hard I work I won't beat this. Part of me is in denial , but I know it's the only explanation that can explain this level of pain that feels like a cold metal piece is pressing on an exposed nerve all over your right side of body, along with tremors and spasms that never end.
I used to want my life back , but I would settle for peace and less suffering.
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.


  • dilaurodilauro ConnecticutPosts: 9,877
    I am so sorry to hear this.
    I know you will find a way to come up again.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Motor1MMotor1 Pittsburgh, PaPosts: 557
    It really saddened me to read your post.
    Please know that I wish for strength for you to get through this.
  • I wish for you to gain some measure of peace as well.
    I hope us Spineys can help you with this.
    Kirsti x
  • SavageSavage United StatesPosts: 5,476
    ...saddened reading your post.
    All the disappointments and other emotions you must be feeling....
    I hope to be here for you while you work through this, as you always here for me, and for so many.
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • Just incredibly sad to read this. Know you are on my mind and in my heart. Hugs.
  • We don't get to live the life we used to have. And sometimes no matter how hard we try it is out of our control. Am feeling for you and your frustrations. And for your pain.
    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    We each go through the stages of grief, some of us, many times over as we are told diagnoses that change as the information is gathered. While I realize you are still feeling defeated it's important to start now with recovery. I don't mean recovery from pain or from loss. Recovery is what you do what you get hit while you're down. People either recover or they sink more deeply into depression. I took the depression route so many times until I realized that there was another option.

    For years and years I wanted someone to acknowledge that I was in pain! Then last year when the Pain Clinic diagnosed chronic intractable pain and centralized pain syndrome I looked over my shoulder. I thought they had to be talking about someone else! I clung to the words of the residents who would say, "Well if you work really hard in rehab you can gain back..." They were residents and not really doing me any favors. I was skidding around pretty out of control until I found this forum and really caught up on things.

    Accepting what I needed to gave me the opportunity to start with new goals. I'm not going to be able to do many things I dream about but I have found peace in the acceptance of this and found joy in finding my way around limitations. But last December I would have claimed all was "cool" but I was a mess. I was directionless. I felt like I was mere months from being in a wheel chair in assisted living. (I turned 49 three days ago.)

    What has started to happen as I've been able to see beyond my pain is a lightening of my personal view. I have found people wanting to be around me and asking me to teach them things. And I realized that although I may not be able to do these things I can teach. I can take the time and help others learn those things which it took me decades to learn. And while I'm thinking about one area there are many ways I can still make a difference in people's lives. I still have so much to give!

    Remember, you are not your limitations! You are your talents, your experience, your words, your thoughts, and your actions. You are the courage it takes to get back up after being pushed down again. And you're the person others will look to while they are down.

    I'm sorry that you're feeling low and desperate now but I know you will overcome this too.

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • I am so sorry reading this. You gave me such strength so many times. I think of you every day and will continue to hope every day that things will get better.
  • I am feeling for you. don't be loose.You can fight.
  • SavageSavage United StatesPosts: 5,476
    edited 10/08/2015 - 4:42 AM
    Welcome to Spine-Health
    Please click on link for helpful information!
    Spine-Health Moderator
    Please read my medical history at: Medical History

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