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I am losing the battle one day at a time.

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  • @armelind I know all too well the feeling of 24 hour a day pain. I have no real advice for you, as I barely even have advice for myself at this point. 

    What I can say is this, when you feel stressed, alone or just plain tired somebody is here for you. Spine Health has shown me I am not alone in this horrid world of Chronic Pain. I have a disease that before doctors actually found it, made me think I was crazy! I have CRPS in my right arm. The pain is highly intense to put it lightly 8 to 9 24 hours a day non stop. My entire right arm if effected from the base of my neck to my finger tips. I am right handed, I have about zero range of motion, cannot grip, extreme swelling, purple skin and feel like I have been lit on fire while the inside of my arm feels like I have been out in a snow storm for hours. Cold burning, makes no sense to others, damaged nerves are devils! 

    The point is nobody understood me at all, until I stumbled upon another member here who is dealing with this too. Now, even with all this pain and the fact that I have no use of my dominant hand/arm, I do not feel as crazy or alone in this world. Sometimes that it all it takes to help push past the circle we get stuck in. Finding another who can relate to our issues when nobody else can. 

    Anyway, I hope you can keep up with your music. Dont let pieces of yourself slip away to pain. Try to keep as much as you can, even if only for for 10 minutes at a time. 
  • armelindarmelind South TexasPosts: 130
    That reminds me of a way out of whack shingles outbreak. I had one and it was "uncomfortable" at most but I had wet, cold, sunburnt sensations up and down my one arm. Like it was every sensation you could have all at once on different places. Man, I couldnt imagine it being so bad like that. 

    I had gotten so far into myself, that instead of whining on here. I forgot all about this site. I didnt have any outlet. I guess I am back for a bit again.
    Thanks for sharing your experience.
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  • memerainboltmemerainbolt IndianaPosts: 6,473
    Armelind, I have gone back and read this 2 page thread over and over. You have so much going on that I can relate to. I happened upon this site back in August and before that my days were filled with a void. Now, I feel as though I do have a purpose. It's to let others know they are not alone struggling in pain. And, giving others my thoughts, no matter how deep into that hole I go.
    By giving others our experiences, mental or physical, we all hope it would help someone else. It's like texting all day to your friends. But here, we have no judgement and are supportive to each other. We can tell secrets and feel safe.
    We only lose the constant battle of pain when we give up. And I've never given up, even when the doctors, 6 yrs ago, said they couldn't do anything. I've lived with constant pain for longer than that, with the last 3 getting worse. Now, I can't go anywhere, do anything, I only get out to go to the doctor. My pain level is 9 on a good day. You name it, I've tried it.
    A few years ago I had a SCS but had to have it removed, I had too much nerve damage. But we started the process for a pain pump in September, jumped thru all the hoops, and my trial is January 3. Praying the pain will decrease but it won't fix the problems. I know I'll be in a wheelchair soon, but I sill have so much I want to accomplish.
    Hoping you get more relief with the SCS, keep us posted as others will learn from it. 
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • armelindarmelind South TexasPosts: 130
    memerainbolt,
    Thanks for that. I too hope you get some form of relief. Btw I am sure you agree....but I hate the pain scale. It doesn't make sense to me. 5 yrs ago my current pain would have been a 10 if I put it on a sliding scale. But today my everyday pain is (maybe) 6 to 9?? I don't know. Its the worst pain I ever felt but I am not screaming in pain uncontrollably so I know it isn't a 10. So am I that much stronger? Is my pain that much less? No I don't think so. 

    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?"

    I could say right now, I would do some pretty low stuff at the moment. I mean "in the history books" type of stuff and I would gladly film it live on facebook LOL!!! So.... yeah its that bad.

    This whole forum and sharing thing reminds me a lot of AA. I tried it to help understand my behavior but I failed at it. I was told by my sponsor that I wasn't an alcoholic in a sense that he understood it. He was clearly an alcoholic but my behavior never took me anywhere near his or most of the others situations. But besides that, I did learn a lot. I guess it is helping somewhat remembering the lessons I learned and what to do to live my life in some meaningful way. But as for me, I am not a member of AA anymore. I dont have the problem I thought I had. My body regulates my behavior much better than it used to. I cannot drink much at all. I know that drinking on opiates is looked down upon but a few ounces does help me to relax here and there. But my body always tells me when I have had enough. I listen to it. And it is always before I go too far. 

    Let me say before anyone judges too much. I do not look down on anyone that has a problem. I have no quarrel with any one with an addiction issue. Please don't think that you can judge my actions because you have me figured out. You don't and I don't share "everything" on here but this is sort of my "safe zone". I do more of my complaining on here than I do in person. So what you see here are my inner thoughts and some of my low points.

    I hope I set an example of non-judgement on others in all of my posts on here. If not, I would gladly like to apologize and try to amend my ways. Otherwise, I do enjoy the community here and I hope that I can continue to help and be helped.
  • armelindarmelind South TexasPosts: 130
    itsautonomic,
    she says she is happy and praying for me everyday. i don't want that. as for the cheating, i have no proof, i am not looking for it either, but there are some changes in behavior and i let her do whatever she wants because in my mind, i may be a prisoner in my home, it doesn't mean she has to be. i know she would be resentful if i made it difficult to leave the house. my only issue is that she is a good looking woman and she likes to go out and see friends. i know that she has admirers. i know at least once at the beginning of my pain issues when i started isolating myself because i didn't want her to see me in pain so much or complaining or crying. she took that as me losing interest. i never lost interest but i couldn't vocalize my problem. i was just mad all the time and she was in the firing line. she started seeking the comfort of her friend. where it went, i don't know and i haven't asked but i gave her the ultimatum, me or him and she chose me. we went to counseling and things have been ok and we became closer. but, things have only gotten worse on my end and she is still as wonderful and vibrant and still wants to do stuff but i am stuck at home waiting for relief because i don't want to be out by her side while wishing i was home the whole time.

    maybe i am too nice, maybe i am too understanding. maybe my mind is making stuff up?? all i know is everyday i am glad she is there and resentful of her small issues she has that are so "devastating" to her. i want her happy with me, not unhappy with me. so if that means she is free, then i say go. but i will miss her. but she says she doesn't want to go. so if she is fooling around behind my back, it will be so easy to be mad.

    our mind is so complex and mean sometimes... right?!
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  • armelindarmelind South TexasPosts: 130
    Yup. all my life I was fairly fit and healthy (with minor back irritations here and there) me and my wife have been friends for like 15 yrs before we started dating. Then a year after dating bam, this happens. Been together 8 yrs now. I dont know if its over, its just a thing going thru my head.
  • memerainboltmemerainbolt IndianaPosts: 6,473
    Armelind, please don't push her away if she doesn't want to go. I understand the guilt you are going through, it almost destroyed me.
    A few years ago I started having stomach issues which took me down to 83 lbs and had just been diagnosed with very progressive scoliosis. I was in horrible pain and throwing up 5-6 times a day. Add that to an excruciating back.
    The medicines were not helping, no one was helping, I had enough.
    My hubby and I have been married for 27 wonderful years, I've said it before on here, he's a saint. Except for one dark night that I went in that hole and didn't want to come out, our marriage was perfect.  And it wasn't just the pain but the guilt. I was having to let go of so much that we loved to do together, especially riding our Harleys.
    That one dark night I wanted to find the nearest bridge.  And he literally stopped me. He said, let me decided if this is the life i want with you, give the doctors a chance to find something to help. We've battled this together for years, why are you trying to tell me what i want.
    And with that I came out of the hole, starting seeing a pain psychologist.  I've learned how to deal with the guilt, anxiety and depression that goes hand in hand with chronic pain. Yes, the pain is still there but not the guilt. We did not cause this but we have to deal with it.
    One of the many things he and I are good at is talking. We don't argue, fuss or raise our voices, we talk. 
    On this forum we talk about the pain and what problems it causes but not very many on here talk about relationship issues and what that causes.
    Hopefully this will open a whole new issue. I hope you find peace within.

    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  •  Armelind, I understand how you feel..the isolation, loss, hopelessness, fear, and non-stop anxiety. I don't know what to do either and am not much help I'm sorry to say. Even though there are many of us going through the same things, I can't help to feel all alone in my own little universe. The relief is brief but then the pain comes roaring back. Not just the physical but all the emotional pain as well. Every day is a struggle and we can only hope that the next will be better. 
    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 have been where you are.  I spent 5 years in and out of ERs. I have been through the pain medication  ringer and had just enough  quality of life to be depressed.  My marriage was in shambles I didn't care if we made it or not.  When pain is excruciating that's all you can think about and care about.  I know it's hard.... It's not easy for your family either.  All I remember is being depressed and angry.  One day after realizing I had "lost myself " I went to my doctor and got a referral  to psychiatrist and got on antidepressants, then I started talking to a psychologist a few times a week.  Little by little I tried to mend my marriage and myself.  I had genetic issues with meds so the pain meds weren't working properly. I then for a year or so toyed with my opioids and found something that made life a little more bearable.  I finally had a fusion and decompression surgery and feel like life is worth living again.  Look, I ended up in a chair for years and I even made my marriage open so my wife could still have a sexual life.  Message me if you need to talk.  I sure hope you find relief.
    Ankylosing spondylitis, moderate lumbar spinal stenosis, spondylolthesis L5- S1, 5mm disc protrusions T6- 9 with minimal cord compression, cerebral palsy of the right side

    PLIF fusion L5- S1 with decompression and hardware Dec 7th 2016
  • armelindarmelind South TexasPosts: 130
    edited 12/17/2016 - 8:57 PM
    Call me old fashioned or insecure, I don't think I would be ok with an open marriage. We are married, we took the vows I still have kept my end. If she wants someone else, she can be with someone else without me. I have made sacrifices for my wife that I now realize she wouldn't have made for me. But I still care for her and I guess I have always been that way. If my wife became handicapped or unable to "be with me" as long as we are together, I wouldn't stray.
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