Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

No longer holding on to hope

azemem01aazemem01 Posts: 15
edited 06/11/2012 - 8:39 AM in Chronic Pain
I have gone to my neuro on Thursday, We talked like we had the past few appointment I had with him. This time was differant. This time he had a vibe that just radiated from him that I could not ignore. All bloodwork, MRI's labs had come back and again not for the first time. He had a paper all filled out for me asked me how things were as usual told him something was happening because I was noticing more changes physically. He had a permanent disability form filled and signed for me. He told me there was Charcot Marie Tooth Neuropathy, Chronic severe back pain,severe disabling neurapathy and pain. As sure as he was about signing without hesitation he was kind and personal with me. I felt disgusted but he made it feel like I was going to get through it and he would be there for me. At least thats how I felt. My condition started at least I noticed around 2000-2001 somewhere there. It was an aweful car accident gave me back problems and dominoed from there. Have had several surgeries, laminectomies, and after the second one to no relief. Ive tried numerous meds therapies and doctors none have had any great success and now we know why. So i Just wanted to vent and say about about myself hope others come by that may be at this point and beyond and can give me some advice or some words that they to are and will be allright. Thank you all have a great rest of weekend.


  • Hi Mike,

    I, although, am still holding out hope for better days, but I ACCEPT the fact that this is my life now. It has taken me 8 years to accept it, but I do.
    My life will not be lived without pain. There is no cure. No doctor will operate on me again (I've tried for a fusion). All conservative treatments fail. I'm 30 years old and have been falling apart since 21 and getting worse as I get older. I'm watching my pain medicine getting increased about every 6-8 months. Is there an end to this road?

    I say, Mike, to always hold out hope because if you choose hope, then anything is possible. And at least it will lead us to the end of our lives by an agreeable route. IMO.
    I hope for technology to come out with something that will help us all and lead us to pain free days. If I don't hold on to that, what will I have left to hold on to??? It's a scary thought.

    I accept my situation, but I don't lose out on hope.

    Good weekend to you and better spirits Mike!

    Hope you have a pain free day,

  • Mike, I have no answers, but I just want to say that you will be in my thoughts and prayers.
  • I too was given a paper like that this year after I had my 4th back surgery, I also have trouble walking, going up stairs andif I bend down I can hardly get back up, my legsdo not have any feeling from the knees down, and the top of bith of my feet feel like they are burnt, anything that touches them makes them hurt. I know where you are coming from and I am saddeden that I will not be able to go back to a job I truly loved. This has been very hard on me and I have recentley started taking something for depression. I know in my heart things will get better what I dont know is WHEN. Hang in there we are a group of survivors and we are here for each other.Good Luck and dont let it pull you down.
  • I do know how you are feeling. But your life is far from over. You must keep dredging along until you can at least find some relief from the pain. There may be no cure but there is always hope. You may not be able to do the things that you used to but you will be able to find new things that you can do. I know that there is at least a med (s) out there that will at least make it tolerable enough to have some quality of life. You just have to find the right combo. Who knows maybe a medical breakthrough is just around the corner that will be able to help you. Please do not give up hope.
  • I appreciate you all given me the time of day to give me your opinions of thoughts. I know life is hard and we have to accomadate what we do for the new us. It just takes time and sometimes like not it takes an emotional toll. I am trying to deal with it and in no way want things to control me. Unfortunalty it had been and I lost a wife because she let it be known that she was not ready to give up on our old lifestyle. And that she felt that this coud not be it for us. SO now being single I have all the time in the world to think whats next. I hope I can find people in here we can chat and relate to each other and we will see what happens. take care mike az
  • thanks all for replying and carin i hope ican continue to get support from you all and hope that you all get better pain relief let meknow if anything Ican do so we can take each other some support thanks to all
  • you can absolutely take to the bank is getting support from everyone here. You can usually find someone here day or night to talk to. Please do keep posting and letting us know how things are going. Do not be afraid of what is next in life. You never know it could be a good thing. Try and think of it as a new adventure. You will have ups and downs but hopefully more ups in the long run. You are not alone.
  • Mike,
    Loss of hope is an emotive issue and in telling you the reality of your condition you are then more able to deal with the future rather looking for that illusive magic bullet remedy that may have eluded you.

    It is not defeatist to accept this ideal and although that disappointment and shock is tangible you do have some control of what happens next, hope to that extent is inactive and relies on a desire or wish, that is ok if the reality to attain this has some validity, for some chasing the surgery that will be effective maybe the only option and it is right that we fully embrace that option if it is the reality, not just an unattainable objective. Even the words “no longer” seem unusual after all the emphasis on this as a solution, to see closure of that option is upsetting emotional and scary.

    You as many before are at another crossroad and knowing what and how to proceed is always difficult as you decide, that not letting it control you is vitally important in keeping ahead of the game and planning for this next chapter with the knowledge that you now have, my own professor said, this would be a lifelong condition and dealing with that is difficult.

    You have done well to endure the breakdown of a relationship embraced with pain and it highlights how difficult dealing with these issues constantly can be, you have and will overcome all these trials one step at a time,with good and supportive encouragement.

    This is my life now and I deal with it the best I can every day, you are strong and the challenges you have had make those achievement even more special, this is just another door and opportunity, looking back and living with what is left is never easy, you are here to help you with your journey, in all that we do, we can be helpful supportive and encouraging, your hope may not be as bright as it once was, time will illuminate the future and soon those new goals and continuing achievements will shine through once more.

    Take care and be kind to yourself.


    20th year soon.

  • I know the despair that comes when they tell you there is nothing they can do for you. Hopefully, with the developments being made in medicine, there may be something for you down the road. In the meanwhile, stay here with us and talk things out when they are bothering you. There's always a little bit of hope, even when things seem terribly dark.

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
This discussion has been closed.
Sign In or Register to comment.