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I am losing the battle one day at a time.

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Comments

  • Hi Armelind, Twyler, et al. Just commiserating with those of us whose relationships, careers, hobbies, and activities of daily living are beaten down by chronic pain. Reading escapist novels (I love the colonial period) is my best distraction. I've read every half-way decent novel ever written...The characters /stories do transport me away from my pain while I am reading. It's vicarious living - we Pain People have to live so much inside our own heads with no physical outlets. 
    Laurita
  • BizcoachBBizcoach CanadaPosts: 29
    edited 03/21/2016 - 3:46 AM
    I too, feel like the pain control/dailylife battle is slowly being lost. 
    Accepting the new reality of permanent excruciating pain is a hard pill to swallow. 

    I recently revisitied the "[edit]" and I am now near the top end of the "Crippled" scores ajd very close to the "Bed bound" category. This explains me laying flat on the bed for 22 hours of each day. I do not want those last two hours to slip away.... because, then what? 

    I still have SCS option or implanted pain pump, which we will discuss in a couple weeks at my next appointment .

    Losing the battle but not completely out of fight yet. This forum helps. Great people here.  
    May 13, 2015. L4/L5
    2X bilateral lam
    2X s. process removed
    2X lumbar sten
    1X discotomy
    1X synovial cystectomy
    4X f. joint modifications
    4X foramenotomies
    1X spondylolisthesis
    1X bilateral post. Llumbar fusion
    1X instrumented fixation
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  • armelindarmelind South TexasPosts: 131
    I had an unusual Sunday and half of Monday. I was virtually pain free for those 1.5 days. I didn't do anything different, I had no reason for it. But Monday, the pain came creeping back in, getting considerably bad Tuesday. This was the first incident of this for me in several years. Maybe I was distracted enough...maybe I was fooling myself?

    I don't know for sure. I just know that prior to this, I have had some of the worst pain associated with this condition than I have had since my surgeries. For the prior month and a half, I have been dealing with new and "crippling" pain in my hip. After going to a doctor, they confirmed that it is my nerve damage traveling to my sciatic nerve. I could barely walk. I now understand what it means to be in too much pain to walk. I now understand how others lose their mobility from their pain. I had no issue with my ability to move and no limited range of motion, just pain all the time. Like the switch in my brain was fused on for my pain receptors. Also, I have been experiencing the weakness of my lower extremities when walking. I get the burning sensation of walking too far way too soon. I mentioned this before in other posts.

    When the new pain started hitting, nothing gave me comfort. No change in position or resting position lowered my level of pain or increased my comfort. Even laying down in certain resting positions hurt more than usual. It seems like this switch that is on also affects my ability to rest and sleep. When it is FULL ON, I cant get my brain to slow down. It's as if the pain requires my full attention because it is so present and in the front of my perception of everything. Very little actions distracted me enough from my pain that I could concentrate on other things or activities. While I am at work, I have started to wonder if I would be better off at home. Because of this, I think my pain is putting a larger or more substantial strain on my mental well-being. I know others close to me have noticed a change in my mental state. 

    Not sure what to do, which is why I am typing on here now. As the title of this post suggests, I am consistently losing this battle with pain, one day at a time. It takes more effort to be at work and with family than it ever used to. I don't know how far the coping mechanism in my body can go. It scares me for the day when I finally had enough. Who do I go to? Who can help? What can someone else do that I haven't done already? The ER is no help. Will bed rest be enough? Will another DR appointment give me anything I don't already have? Probably not. So.... what then? Where? How? WHO??
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Hey armelind, boy wish you could figure those 1.5 days out and why the relief came.  I know what you mean about the pain, when I think about mine at its worse it is like the filter I see life through.  Like that old cartoon where the toe is bigger than the rest of the body , red and throbbing .  That's the image that comes to mind sometimes.  I had an injection that really worked the other day and it did not cure me but for 4 days it took my pain and put it in the back of my mind vs the front.  I told Drs that is all I am looking to do is this exactly and I will do anything to do it.  Wish I could help more , but hoping you get some more good days like that.
    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.
  • I'm here to tell you that I put on my big girl panties and walked through my thoughts, only to find a lot of negative feelings! 
    I decided to get up and DO!
    I am winning!
    Its a positive mind set that you need help with,it's helping me!
    Slowly but surly I AM WINNING! 
    You can too!
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  • armelindarmelind South TexasPosts: 131
    edited 04/06/2016 - 2:51 PM
    Tova, I understand what you say. But I dont see it from your perspective. I am positive much of my life. I DO, mainly because if i dont, nothing gets done. I put the fake smile on everyday and sometimes, its a real one. But when you have come to the end of your treatment, and you were left with the same thing you originally went in for, its hard to see how it is all better and shiny. I have been to different doctors, I have been thru all the tests, injections, burnt nerves, nerve blockers, opiate pain meds, pain patches and whatever else....all but the spinal chord stimulator, whats next? I have gone years telling myself its only going to get better and the pain is still here, worse than it has ever been, and it will probably get worse before all is said and done.

    I am not bitter at your comment, I just dont understand how its ok to be in so much pain and that smile is supposed to tell anyone or yourself that you won or are winning. I am still alive and sane. I can walk. Ok good. But how does that stop the hurt, or help me sleep better or allow me to get out of my home when I hurt too much to go see someone.

    I have hobbies I am trying to take up and I also play music in a band. I am just wondering how its going to feel playing in a wheelchair. I have been informed that it is a real possibility for me in the near future.

    One thing I dont think I have had is an epidural... maybe I have, But I dont think so. Has any one had one and did it help you with back pain from damaged nerves?
  • Armelind
    As soon as you find out about how that pain free day come,about..i had one about 7 years ago...
    William Garza
    Spine-Health Mod
    erator

    Welcome to Spine-Health

  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Armelind, I do think that is a common misconception.  If you are negative on here/in daily life you must be sitting around the house doing absolutely nothing, getting nothing done.  I have been negative many times on here, but in the real world was getting a mechanical engineering degree and a process technology degree, other times I was working full time at a very demanding high pressure job.  There is no correlation in being positive and doing more or being negative and doing less.  Matter of fact I would argue that people in chronic pain working full time, managing daily ins/outs , taking care of themselves alone may have more reason to be negative because of the shear burden of it all and trying to do to much to maintain.  It wears you down.  There is always a trade off , I have been working and not working with chronic pain.  Working the shame I felt is gone which is great , but the burden of keeping up with peers in overwhelming and stressful and I feel negative because I have to make the same deadlines as them even though I also have a chronic issue to deal with so its double hard to keep up.  When I am not working that pressure is gone, but the shame and new pressures creep back in.  I prefer working honestly and will return once I get straight, but at a less demanding ( and much less paying  :'() job.

    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.
  • armelindarmelind South TexasPosts: 131
    I am not trying to contradict you in any way, but that is another thing I don't understand. Shame? I don't feel that. Maybe for me its the feeling like I wish I could do what I used to do, is what you feel as shame. I am happy to live up to the standards that I can. And I am sure shame will come into the picture when I no longer can. Otherwise I do see what you are saying.

    Since one cannot get the true meaning of someones feelings or demeanor by reading their posts, they assume a person is being one way or another. And I hope that Tova doesn't think I jumped down their neck attacking them. I wasn't. Online it seems that people assume the worst in people and it is easy to come to that conclusion because FB and other websites tend to bring out the worst in people. And being that this is a website that caters to many people in need or that are in a bad way, it would be easy to assume that someone being a bit negative is not seeing the world for what it truly is out there. However, I would say I do see what is out there... from my window or from experiences thru what others share because I am no longer capable.

    When my wife says she will feel so much better after she can go camping or have a vacation somewhere, I feel jealous on a small level because she can leave her negativity or bad feelings somewhere else. I cannot (and I am sure many feel the same way) I carry this "dark passenger" with me at all times. It bears its tons of weight on to my body as I trudge on. I can smile as I watch people pass me up while I hike up this huge mountain of life with this excessive weight of a condition planted on me probably for the rest of my life. I wish for that one last procedure to deliver me from this heavy burden but I am also a realist. I have to plan ahead for the possibility that this one last option that I do have will fail like all the others.

    If that happens, I am not sure what I can or will do. After looking up some disability issues and some other things, it seems that I will have to lose the majority of my current life before I will qualify for any kind of help. I don't make much, but I do still work and I am still able to...but just barely. Since I do low impact work, it seems as though I don't have much to fall back on before things really turn bad financially for me and my family.
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    No I totally understand, I just felt the shame when I was on long term disability through work.  But it was alot of shame that I cant do what I did included.  I don't look at others with shame , just myself so it could be a personal issue with my situation.  I am glad you don't feel it, I hate it. 
    I often have to remind myself of that and for me its been true, sometimes in my darkest moments this forum is a place to unload vs. my family.  Its not as if I am always the same way in real life as I am here.
    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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