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Thread: Need help explaining to wife about nerve pain

  1. #1
    Junior Member spinal-c6-c7's Avatar
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    Need help explaining to wife about nerve pain

    I have not posted alot on here, I am usually just a reader. Most of the time somebody else says what I would say before I get to read and respond.
    I am a C6-C7 incomplete with a whole hell of alot of neuropathic nerve pain (from my nipple line to my toes). The part of my body that is paralyzed is the part that hurts the worst. And no Doc's can give any explanation why!

    I have tried to explain what it is like going threw life in constant pain. So bad that I dont want to get out of bed for days on end some times. and then there some times that I feel good for a week or 2. She persists that I have not yet come to terms with being in a wheel chair and that I need to go to shrink. I feel I have, it is what is and that is that. I have a 7year old that needs his dad and I have figured it out that I can give the stuff to make it threw life with my knowledge and not have to have the physical ability to show him the way.

    I dont want to lead anybody to the ways and words that I used. I would like an unbias opinion. So if you could give your definition and experience with not only dealing with life as quad (bad enough but able to overcome) but pain so bad that I can not sit in my chair for more than 2 hours because nerve pain and my tailbone is so sensitive (I have tried different cushions with no relief). Thank you EJ

  2. #2
    Senior Member alan's Avatar
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    Check some of the articles at painonline.com and painonline.org. Also many threads in this forum discuss what you ask.

  3. #3
    I don't know just how bad your pain is b/c I can't feel it, but I have chronic pain in my lower back. It sucks, but I don't let it get the better of me. I'm the same level as you, C6/7.

    My first recomendation would be to really analyze how you're sitting in the chair. Seriously, have your wife sit down in a normal chair, tell her to maintain good posture, and then examine her & compare yourself sitting down. Are you slouching a lot? Leaning one direction? Do your feet sit flat? Etc etc etc. Obviously the paralysis will have some effect on this for you, but if you sit as best as possible, that'll help.

    Secondly, call around to a few local chiropractors & see if you can find one who sounds intelligent, understands the nervous system, and offers some hope. Just talk w/ them, and see if they can give you some ideas. Chiropractic care is simply maintence of the nervous system. Don't think they'll mess up your spine, b/c if you find a good chiro, which there are plenty of, chances are they can help reduce neuropathic pain in more simple ways than you'd expect.

    Don't waste your time with a shrink quite yet, at least over this issue. We can pretty much coach you through anything here at CareCure, give you pep talks, advice, etc... because the majority of us here know the hell involved w/ SCI firsthand. As for your relationship with your wife, cherish it & let her know you love her... which may likely involve more than words, but that's for you to figure out.

    Good luck & take care bro.

    Scott
    Last edited by -scott-; 09-29-2005 at 11:45 PM.

  4. #4
    You answered your own question.

    You need help explaining your pain to your wife. There is absolulty nothing wrong with going to a "Shrink" as you say.

    I dont know your entire situation but if you and your wife are having problems communitcating you do need help.

    Do you know that a "Shrink" could be a friend, a pastor, a wife, a husband, a mom, a dad, a sister, a brother, a cousin, a neice, a nephew.....Doesnt have to be a Dr. that holds some piece of paper that says they know what they are talking about.

    Just talk with someone that you trust, that will help you, someone you love, someone that loves you for who you are. The most important thing is that you be honest with whom ever you are speaking to.

    Talk with your wife, dont fight.
    She is obviously your wife because she loves you.

    If you dont do it for you, do it for that 7 year old. That child needs you and your wife.

  5. #5
    Senior Member Jadis's Avatar
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    OMG... I know what you mean...
    -constant burning like you're touching a hot burner but can't pull your hand away -- only it's all over below point of injury.
    -feeling like you are being stabbed with thousands of needles at once.
    -unable to stand the feeling of clothes touching you, or the sheets/blankets on you at night. I wear clothes that a bigger than my actual size in an attempt to not have them touch me.

    there's never a break, it's always there. When I first got hurt and went through this I cried constantly because I couldn't get away from it. My doctor put me on antidepressants in addition to pain mgmt meds for neuropain. Finally after a year, I was able to deal with the pain. It's not gone away, but I have figured out ways to deal. Meditation helps me, and sometimes I can go outside my body and escape the pain for a few minutes. That one took me a few years to learn.

    I have had these on my computer in a word file for years and have no idea where they came from. They were emailed to me by a friend. It deals more with chronic pain, so maybe you can find something here to help you. I printed them out and mailed them to fanmily members so they would finally "get it."

    TIPS FOR DEALING WITH PEOPLE IN PAIN

    People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

    An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

    Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

    The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

    Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

    Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

    Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

    Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

    Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

    Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

    Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

    We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.
    LETTER TO PEOPLE WITHOUT CHRONIC PAIN:

    Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

    In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me...

    Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time I'd still like to hear you talk about yours, too.

    Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

    Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

    Please repeat the above paragraph substituting, "sitting", "walking", "thinking", concentrating, "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

    „ Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!¡¨ If you want me to do something, then ask if I can.

    In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

    Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do.

    Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine.

    Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.


    Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

    If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

    If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

    If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

    Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

    In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

    I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

  6. #6
    spinal, check out some of the descriptions of pain at painonline.org for ideas. Or just have her read the page herself and see if it makes an impact.

    http://www.painonline.org/description.htm

  7. #7
    Jadis-- awesome stuff... it's really hard for my BF to communicate to how is his pain is sometimes, it is nice to read something that explains in better detail where he is at with it all of the time... i realize it doesn't go away for him, but it's easy to forget on this 'good' days that he is still in so much pain. Thanks for the insight.

    Spinal-c6-c7...something to think about... this is purely from where i sit, everyone is different...but if you are in pain all of the time, then you are probably very sensitive to touch (i'm just thinking of what i deal with when the BF is hurting really badly). Is your wife an affectionate person? not everyone is, I am, so when I can't touch him, it's really hard for me to deal with him hurting. I'm just the type of person that wants/needs to touch a person that i care about, especially on a 'bad' day. The problem is that when he is having a 'bad' day then he can't handle this at all. I realize that it's not that he doesn't want the physical contact, it's just that he can't handle the stimulation on top of everything else that he is dealing with at the time, it's not personal, it's his pain. It isn't that he doesn't want me there or to not touch him, it just doesn't help, but literally makes it worse. luckily on other days he can, so i get my 'fix' then. It's hardest when it's days and days of not being able to touch that start wearing me down, plus, let's face it... it is a horrible feeling to be around someone you care about and watch pain just cripple them, almost worse than the physical injury that they sustained to reach this point. I don't know about your wife, but limitations i can handle, knowing that he is pain and it can't be fixed or should i say, I can't fix it... and even drugs take a long time, IF they work at all...now THAT makes me a wreck. Especially when you know that you will never truly comprehend what they are going through, it can be very hard emotionally. I know this might not be even close to what you are dealing with everyday and your wife might not be like me at all, but maybe it's just a different perspective.

    Regardless, I hope you find something that helps your pain soon.
    "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, margarita in one hand - chocolate in the other, body thoroughly used up, totally worn out and screaming WOO HOO - What a Ride!"

  8. #8
    Senior Member Jadis's Avatar
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    glad I could help.

    Boog and I are both affectionate people too. He's a hugger and likes to rub me when I hurt. The worst part is he absentmindedly does it. My legs hurt, he just reaches over and starts rubbing without thinking.

    i used to tell him to stop, that worked for a while.
    then came putting my hand on his, or throwing his hand off, that worked for a while.
    saying "that hurts me" didn't work... so i learned to tell him exactly what it felt like.

    so now when he starts rubbing, I just say "bugs." It literally feels like bugs crawling on me, then more bugs and shocks added when he starts rubbing. It took a while, but he finally gets it. He no longer takes it as a personal attack on him, or that he is failing me because he can't fix it.

    I'm not saying he didn't want to fix me, he has. We have been where you are, and it wore us out emotionally. Being worn down emotionally starts to affect other parts of your life as well. There comes a point where you have to say "I can't change this. Am I going to let it destroy me, or am I going to accept it? or help in areas where I am needed?"

    Some days I can push through the pain and accomplish great things...other days, I can't get out of bed. I never know from one day to the next. I have the best of intentions, but never make it out of bed and put my pants on. It's extremely frustrating, especially since I was a go-getter and independent prior to the accident.

    Communication is key; we can't read each other's minds.

  9. #9
    Jadis-
    yep, the big thing with me was just to remind myself... it's not about me, it's not about me... right now, we both need to just focus on him.... AND as you mentioned... LOL... we're not psychic... so i got really good at asking not what hurts, but what kind of hurt.... then i would know whether or not i was aggravating the situation or if something like hot/cold or even massaging would work... once i got that in my head, plus just getting him to talk, things got much smoother, well, as smooth as this can be. so once that level of 'non-psychic' was dealt with, we actually got much better at silent comms, too...kinda funny how it came around full circle.

    at least when i read your thread i can kinda visualize what is in his head. or at least on those days when life looks pretty bleak. he's a self-proclaimed non-communicator, so since i'm the opposite, these details are what i need.

    Thanks much!!!
    "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, margarita in one hand - chocolate in the other, body thoroughly used up, totally worn out and screaming WOO HOO - What a Ride!"

  10. #10
    One more thing that got a bit bypassed in my ramblings is....

    YOU DO NOT NEED A SHRINK FOR NERVE PAIN.

    whether or not you are still dealing with being injured and in a wheelchair is totally besides the point....that is a conversation for a different day.

    but on the issue of your pain, that is not in your head. it is real. I think that jadis and i have both tackled that concept, that even though it isn't always easily explained or understood, it is a very real thing.

    I really wish you luck on finding a level of understanding with your spouse on this... but more than that, i really hope that you find a way (drugs, a decent pain doctor, etc) for you to be able to get back to living, enjoying your child, family, affection, etc. Whatever it takes for you to not have to be in pain, I hope you find it.

    Good luck.
    "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, margarita in one hand - chocolate in the other, body thoroughly used up, totally worn out and screaming WOO HOO - What a Ride!"

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