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I am losing the battle one day at a time.

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Comments

  • itsautonomicitsautonomic LouisianaPosts: 2,561
    edited 01/05/2017 - 7:13 PM
    Armelind,

    I will not sit here and tell you a mental health doctor can solve your problems or change anything with pain levels that high. But some that specialize in pain can teach you ways to work with your mind to develop coping strategies and even ways to lower the pain using your own tools.  I would not have believed it if I had not seen it, but its not easy and it sure does not last , but beggars cannot be choosers if you know what I mean.  Its ultimately up to you, there is a book about mental health that I have read and it debunks alot of the promises made in many different areas that promise all this relief, but in the end this guy found that many of these things combined helped him feel 10% better, not the fully healed as advertised.  Not that your issues are mental I just apply that methodology to pain, if everything you do and add together might bring just 10% relief that would be a start and reason to keep looking and trying out things.

    I can tell you right now seeing a mental health doctor and his team did not make me want to be here anymore, did not cure my pain or even really significantly change it, did not change my thinking when pain overrides my common sense, nor radically changed my life. All I can say is I am a little better than I was before going, that is it.  Honest answer.  

    And I tell you this as a friend and I hope you do not take it the wrong way, but there will never be a time all avenues can be taken, there is always something out there as far fetched as it might be and as little odds as there might be for success, there is always something we have not tried.  Are the ones left reasonable, maybe not, but maybe they are.  But throw in money, ability and time and its an entirely different ballgame.  Some people get hope from focusing on that "one more try" mentality even against all odds because what else is there, living this way and knowing this is it ?? I am better off six feet under.  When we start to accept this is it, in my opinion we die inside , others will say that accepting is when they began to live, but I cannot grasp that concept when your pain overrides everything.  I suspect that acceptance comes more when pain is under some type of control or managed in some way, but that is just a theory.

    Wish you the best and hope something changes for you, the fear is a killer, but I have not figured out how to avoid it either.
    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
    Every solution is depends on how far you want to take it. I specifically and seriously asked my pain dr what else is there after my pain stimulator. He said nothing is left. He cannot (or wont) do anymore. I have an appointment with him in February and I will ask him again. 

    Its funny... and ironic. I feel too good to be disabled by my pain.... but I feel so terrible that I can't do anything. I guess it probably is no different than a genetic defect or fibromyalgia or some other nerve issue. Outwardly intact yet in terrible pain. I don't even walk with a limp most days.

    There is nothing wrong with me other than my nerves telling my body "You are broken, you need to be fixed. I will not let you function properly with this defect."

    And with that, I want to be fixed. There has to be something. Cut off that bundle of nerves!!

    If I could describe it as anything, I am walking around, sitting and living with a crushed pelvis that didn't heal properly. I am guessing this is what that feels like. But all my CAT scans and MRI's and other tests say that other than a growing area of scarred nerves, my bones are fine, my muscles are healthy and I should be pain free and doing well.

    The only thing I can think of is psychological help... I haven't done it but truthfully, I dont see how it could help. I am not against seeing a mental health provider, I doubt that I have something they could help with. 

    I am done for tonight... I keep going blank and my thoughts are scattering. I am tired. I will talk more another time.


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  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Invisible illness, suffering inside while the world sees someone normal.  It is rough.

    As someone who has damaged nerves, that is the issue the body almost betrays itself as the nerves continue to interpret dysfunction as pain.  Nerve pain is considered the worst pains and is doctors least favorite to treat due to the complex nature of it and interaction with the mind.  Its no different than phantom limb syndrome, the limb is gone yet the mind interpets damage to old limb because it cannot compute it does not exist any longer.  These type of things are very common with neurological issues outside a impingement source.

    When an external force is causing the issue such as a disc pressing on a nerve its pretty different than the issue being internally driven and systemic.  The long term impingement an often bring this on, but it can be localized.  Something like central pain is driven in the mind, long after the injury, disease or occurrence has passed.  It used to be called thalamic syndrome due to the belief it originated in the brain, but this is not mental disorder it is a disorder of the central nervous system.


    I know I have probably asked you this , but have you ever been to a large top of the food chain teaching hospital.  Something about your posts and the lack of concrete diagnosis yet horrible pain speaks to me that you potentially have not see a doctor that correctly has identified the root cause and named it.  I highly suggest it if you have the means, it was life changing for me .  When a doctor tells you there is nothing more that can be done is often that time to seek the teaching hospital, and I can say I have not once heard there is nothing more that can be done in them.  It may not be something I want to do or may not have good odds to work , but they believe there is always something to attempt.
    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
    My Dr called it Epidural Fibrosis. So when I said "the only thing wrong is my scarred nerves", that's what I was referring to. And really the most I have read it about it on the internet every time I looked are links to articles that originate from this site.

    Between two MRIs taken 6 months apart (2 years ago) he could see how my area of scarred nerves have grown or spread. The only thing he could say was "I am sorry". He said he would do everything he can to help treat the pain but other than some experimental treatments, there was nothing else he could do. And that I should consider myself lucky that I am not needing a walker or wheelchair as others with my same issue need them. And that others are bed-ridden because the pain is too great.

    My Dr did say there was one more thing but he cant do it. Stem Cells. And my thought on it is like this: As long as the public thinks that the only way to get stem cells is thru aborted fetuses, then it will never be a viable medical procedure for the public.

    I truly hate how the ignorant politicizes everything and then throws religion on it for good measure. I live in South Texas and there aint nothing more righteous than a God fearing politician here. Thats my opinion of course but I dont think I am too far off the target.
  • I found out I had epidural fibrosis after my fusion, and this is why I ended up with a pain pump. Although technically successful, my pain was worse. Corrective surgery or attempting to remove said tissue was not feasible in my case. I also choose not to go to a pain psychologist or other counseling for now. I can talk to anyone else for free but it's not professional of course. Over the years I've come to accept my lot in life and adapt to my constant companion called pain. Some things in life are out of our control. I have my down days and am going through a particularly bad time now myself. It's a struggle every day to retain my sanity. I have children and family who need me. Sometimes I want to hide away from the world and not talk to anyone. Only those who go through what we do fully understand. 
    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
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  • armelindarmelind South TexasPosts: 131
    My wife and family keep praying for me to get better. They dont understand that it wont. As far as I know... it never will, it will only get worse. It does only get worse. 

    Am I wrong?
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Was this epidural fibrosis what @kimmy79 had the procedure to break up the nerves?
    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 dont know what she had. I dont remember. Will have to look later.
  • Lysis of adhesions
    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
  • I guess I'm going to go ahead and pipe in, although I'm a day late and a dollar short....Armelind, you said it best a while back...".It's more of a "what kind of lewd act or behavior would you be willing to perform to guarantee pain relief from this current issue?"

    Just about anything lol. It's a shame...when a person has been an optimist most of their lives, despite things that would give the general population nightmares. Then, this pain kicks in and it's like, what else?? The brain keeps moving but the body is unwilling. Late nights of thoughts while you're alone and the whole house is asleep.. Anyway, I've nothing to offer but a sliver of understanding and al the compassion in the world. 
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