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If you think; you’re the only one affected by your chronic pain –YOU’RE mistaken!

jj-from montrealjjj-from montreal Posts: 60
edited 06/11/2012 - 8:24 AM in Chronic Pain
Take my word for it, everybody around you is affected.

In my experience it is crucial that everybody without exception; parents grandparents children – (significant other) who ever is directly involved in your immediate life Have a sit down with your pain doctor and have them ask any question they want, and let the doctor answer, believe you me it carries a lot more weight if the same words came from a doctors mouth, then yours.
I remember some of the question; my parents both in the seventies asking the doctor if I’m going to become a drug addict, My son asked if I was going to die, my wife just simply asked;
“Please tell me when am I going to get my husband back?”.
I will be honest with you; it was not easy for me to sit back and listen to them, to see the desperation on their faces. I never realized how much it affected them.
You know something; at the end of the day, my pain situation did not change, however;
Now when I take my pain killers in front of my parents Im not questioned any more, when I have one of my flair ups and my pain levels are extreme my kids know, this will not kill me( leaving toys on the floor so I could trip over them will)
As for my wife, well let us just say; we are optimistic.
Understanding the situation with the “right” information is, one of the most important step in the recovery process
Remember; as bad as you feel a hug goes along way, they need it.

Keep smiling
JJ
.--------------------------------------------------------------------------------------------------------
A little back ground;
I’m a 48yrs old male, I have moderate to severe chronic pain everyday of my life for the past10 years,
I was diagnosed with sever stinosis in the neck, severe D.D.D
At 37 I had to have a lamanectomy from C3 to C7 inclusive, do to herniated disc that affected my spinal cord. The doctors have made it very clear that there is real nothing left to try, medically.
Presently I can not feel with my hands, no sensation, I have pain from my head to my toes. I have been on every type of pain medication and all stopped working after a while
Now I take Lyrica and and medical marijuana
(My advice to the world ,” acceptance, never give up, keep your self occupied . get physiological help, just to put things into prospective. Try to smile)
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Comments

  • Hi JJ,
    When I had my first neck surgery, my surgeon required my husband to meet with him. And the seriousness of the situation was explained. My husband tends to joke and laugh at everything.... My subsequent surgeries I have been alone.My little girl is well aware of my back troubles and pain. I constantly remind her that I'm ok. You apparently have a relationship with good communication and cooperation. I, on the other hand, do not. My husband's regular response to any of my issues is " what do you want me to do about it?". And unfortunately, when a child watches one of the parents treat the other with little or no concern, they tend to imitate that. My mom's reaction is to remind me of the type of work I've done my entire life. So you have an exceptional situation , to me anyway. And I am glad for you!
    Because it sucks to deal with it all alone. And your family is fortunate to have someone , who, even though is suffering, is concerned about how they are doing!
    Wish there were more like you! Feel better and take care
    Sagehen
  • Yes, when the words come out of the doctor's mouth, they tend to carry more weight. My husband can't make it to my appts, so I have to relay information. He's a comedian too, but when it comes to back problems, he knows due to having it himself. Everybody is sympathetic and supportive, even now that is obvious that I am not going to be the same physically anymore. My family is frustrated and wants me to get better, but they don't want me to subject myself to procedures that have barely a guarantee.
    I said once that I might just have to adjust to how I am, and learn to live differently.
  • Thanks for sharing that with us.
  • Knowledge is definately power. I think many of us have spouses, friends, coworkers, whathaveyou that are curious but do not wish to "butt in". Information in my opinion is good to have and give out to the people close to you. If they can sit down with you doc, even better. I for one am very interested in my back health and so research alot and know alot from the 10 years I have been dealing with it. It is good to remember that the layperson does not have as much knowledge about it as I do.

    Thanks again for sharing and I am happy that you family is willing to consider your feelings!

    One Love,

    Stephanie
  • I have been in chronic severe pain for almost a year and a half. Those closest to me (including my grown children) just cant take seeing me suffer so. I am transparent to them. If the pain is almost unbearable you can't hide it, and they don't know how to help so they run.
    THIS IS HARD TO TAKE EVEN IF YOU UNDERSTAND IT.
    IT IS ALSO DANGEROUSLY DEPRESSING.
    Any ideas.
    Less pain to you all, Eric
    :<
  • My husband at first was the same way. He would just say I don't know what to do for you and he pretty much ignored me. He didn't know how to deal with it. He grew up with a mother that was always complaining about her pain so he is pretty much numb to anyone with pain. He is starting to come around although the other day when I asked him to take me to the ER he really dragged his feet and acted put out by the whole thing. We are getting counciling now and hopefully he will get on board and stop pretending my pain doesn't exist. He did get angry the other day but he explained he is not angry with me but angry with what the pain has done to our lives. I can cope with that, its a step in him acknowlegeing my pain. This has been one of the toughest years we have had and we have had some pretty tough years.
  • You could be telling MY story! It's the same thing at my house, minus the complaining mother. We don't really talk very much and it seems like the only thing I know to talk about is how crappy I feel. I don't want to sound like a complainer to him, but pain is what I know about, 24/7. I noticed that he is 'looking' depressed to me and I don't know how to help him. Since I have been hurt I have gained quite a bit of weight and I know that it bothers him because the woman he fell in love with was thin and fun! It seems that no matter how hard I try, I can't shed the weight. Maybe hypnotherapy?! Plant the idea in my head that "food is bad", just until I'm able to lose some weight! lol ">image
    I guess I'll keep to my computer therapy, for now. I'm open to any ideas to help the relationship between my husband and I. I really would like to fix things, as much as I can anyway.
    OK, back to the chores...">image
  • It is so frustrating because my husband didn't "buy in" to a broken wife. I used to be fun but I just can't get there due to the pain. I feel a little abandonded because he did tell me that although he is going to be there for me he does need to have a life outside of this dark place we are now. It really made me feel bad at first but he is right, just because I can't do things I shouldn't expect him to sit around the house and wait for me to get better.

    He joined a Corvette Club recently and I was rather upset by it. They meet up twice a month for dinner and so far I have been unable to go, but he goes and I encourage it now.

    I am hopeful that this is just a "season" and soon I will be back to some sort of a normal life. There really is no other way to look at it. It is what it is right now.
  • My husband has to handle me like fine china. He likes to snuggle, but I often head him off at the pass because I'm afraid he may cause pain by accident. He's super careful rubbing my back, and he know to stay away from where the sciatic nerve runs. It's really sad.
    I have to be waited on because I'm slow, I take long to get dressed ( I don't want to look like how I feel), and I need help with this or that. Sometimes I feel like I run my family ragged because they have to pick up my slack. I used to have high expectations and it was hard to let go. I wanted everything perfect. Now I just wait for a couple weeks til the carpet gets vacuum. People want to relax on weekends, not do strenuous chores.
    I guess everyone here is getting used to this new way of home life, and having to help mom with things. I taught my kids how to use the washer and dryer, vacuum, and dishwasher. I see it this way- these are necessary skills they need for when they go out on their own.
    My husband has lots of hobbies to keep him entertained and his stress at bay too.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,728
    My wife is a rock and I have 1 brother that suffers chronic pain from back surgery also. But my grown children and all the rest that are close to me. Well..... you just put it into words for me. I am transparent to them. And I don't blame them as it's not that they don't care. They care very much. But I guess this is their way of dealing with it. My idea for you, me, and all the rest of us is STOP trying to understand it. That leads to massive depression. And Just learn to ACCEPT IT. It may become easier with time.
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • Thanks a million! BEST ADVISE about pain and the family I have ever seen.
    Take care, Eric =D>
  • Or a day,month,decade,whatever the case may be.

    This is a good topic,one touched on every day-but not usually so deeply.

    Nicely told JJ

    Tonight my neck hurts really bad,and I'd like to go to sleep & wake up...and one day the first words out of my mouth NOT be "ahhhh my neck".Actually here lately I haven't been saying it out loud,but thinking it just the same.I think my BF may be burned out and tired of hearing it,and maybe he has just gotten so used to it that he phases it out.I know that he loves me,but what can he do anyway.I try to deny my pain until the day of my PM appt. or regular PCP,and even then I feel like I just don't want to talk about it.

    I like to think of it as acceptance,but then there it is.Mostly I just try to make it through the days with very little mention of it.Quite frankly I'm embarrassed about it. :$
  • Robin,
    please don't be embaressessed about your pain. At the moment think of it as one of your lifes unwanted vices ie being addicted to chocolate/ice-cream etc, you and several of us here have back pain. We are seeking treatment for our unwanted 'vice' by getting help from our GP, PM, PT etc. Some people are able to overcome their problem fairly easily, with others it takes a little longer.

    As for being invisible to family/friends oh yes I know that one well. I had a fall in a store a few weeks back, my mum walked right on by. I called her for help, she told me to get up, stop being embaressing. The emotional pain that caused me that day really hurt but then I thought if thats the way she wants to deal with it fine, I will deal with her issues like it too. Trust me, she didnt like it.

    My hubby lives with pain every day too, he has muscle wasting condition. Some days he finds it hard to deal with my pain too but then I help him with his. Now we aren't afraid to say how we are feeling.

    It has had its moments where we thought it would end our marriage, I have been ill 7years out of our 8yr marriage so it does takes it toil. Now he knows I don't like it either, but by punching a wall etc doesn't make it any easier or deal with the issues we both face.

    Sorry for the long post, its been a great topic.

    Love and hugs
    Danni
  • I am so sorry your Mother treated you that way. That is just awfull. It almost sounds like something my Mom would do. She is type who says, "buck up" when I had just lost my husband. How's that for cruel. Anyway I'm sorry that your mother is not more understanding.

    I don't think a lot of people get it. My brother suffers from lower back pain and he can't understand why I just don't ignore my pain and get on with it. Obviously his pain is not as dibilating as mine but that is not something I can to say to him. I would like to just "get on with it" but I really can't. Everyone wants to compare their pain to yours and that just can't be done.

    Suzie
  • I am in tears reading this post. I have recently been doing the same things... trying not to say "ow this hurts" etc. I am so afraid that my husband is "tired" of hearing it. He is such an amazing man. He is very supportive, whether or not he understands, he doesn't let on. I just feel like he can't possibly want to listen to this EVERYDAY. Which is why I have found this forum so helpful. I find myself complaining more here, and less there.

    I encourage him to go out without me... if I am not feeling great. I also have to encourage him to not feel guilty about doing so.

    I never really understood how much chronic pain affects EVERYONE around us. Reading this post kinda puts it all into light for me.

    Thank You
    Amanda
  • I agree with a lot here. My biggest thing is the guilt that I have for holding my family back from doing things. Don't get me wrong, I encourage them to go out and do things. I just feel bad for not doing more with them, or when I do certain things with them I am in more pain the next day. I hate it that my little one has to ask me how my back is doing (although it is very sweet when she does). Also, I feel guilty when lately my DH has to make dinner, do laundry, and clean up the house because I can't.

    However I do feel blessed that I have a husband who is very understanding. Sometimes he really amazes me how he is just willing to jump in and help me. He is really a sweet guy. Our only problem is that he has ADD and sometimes he may need me to ask him things more than once, etc and when I am in pain I have no patience at all. Does anyone else have that issue?

    I do have to say that one of the best things I did lately was to go on depression medication. It has helped me soo much in dealing with things better. So, if anyone is having problems and is thinking about getting medication for depression. Go ahead and do it!
  • :< :< :< :< :< :S :S :S It takes a toll on everybody yes.. Its still hard to always be on the "outside" because you cant do whatever you used to or when your out and an about you have to stop and rest... I get sooooo SICK AND TIRED OF HEARING MY OWN SELF saying my back hurts, or im hurting, or I cant do that because...The one person that was by my side through thick and thin was my mother. i am the baby out of 6 and was mommas baby.. a PROUD MOMMAS BOY.. She passed back in Feb and its been hell on earth since then.. We are in this together since we sought out this website and started talking..
    Now that I am waiting to see the new dr to get the pain under control, i not only lost my mother a few months back but my relationship is falling apart and I dont know what to do.. PHYSICAL PAIN AND EMOTIONAL PAIN is about to get the best of me.. How much more can one person take or stand? yes i agree i need some sort of pain management, but that will not happen for a while.. To get in for EMOTIONAL pain therapy is an even LONGER wait..The surgeon done my ALIF on a fri afternoon at 4pm i was released the next morning at 8am. With no pain meds to help have been going through hell since then.. The pain gets worse everyday, have since fired my DR. He told me that since i was a 29 y/o male that he didnt want to put me on any pain meds. I could just deal with it. The last x-ray showed that the vertebrae are not fusing.The surgery was done on Aug 15,2008... Im sick and tired of being sick and tired... :< :< :< :< :''( :''( :''( :''( ~X( ~X( ~X( ~X( :< :< :< :<
  • You are indeed lucky to have a understanding husband. My husband tries to help out but I get a feeling from him that he really doesn't want to do it and I get tired of asking. I guess I just want him to know I am in pain and just jump in and do it.

    I am also on antidepressants and I think they are helping. I have been on Remeron for anxiety which I love, but the Doctor has now added Cymbalta for nerve pain and I'm not really liking it but I do think it may be helping with the pain. The cymbalta ramps my anxiety level which I hate... The two drugs seem to be working against each other. The doctor said to try to stay with it and those feelings would go away. We will see. :W
  • Suziee,
    Your husband DID buy into a broken wife when he took those sacred vows with you. If he didn't mean what he was saying, then he shouldn't have said them at all. Whatever happened to "in sickness and in health"? Just because you are in chronic pain doesn't mean that nothing will ever happen to him. Does that mean you will turn your back on him when he gets sick. I have a feeling the answer would be NO! I hope the very best for you and hope that your husband will someday open his eyes to the beautiful wife that he still has. You may be in pain, but the real you is still there.
  • I have a sister who also had to have back surgery and she still has some discomfort from it over the years. Well, she expects me to be like her. She has no understanding of what I am going through or how hard it is to deal with. I think it's actually harder when there is someone else who has had something similar, but with better results, they tend to judge more harshly. And Suziee, I'm so sorry to hear about your husband, my heart breaks for you.
  • I'm very shocked at the response from your mother. I'm also very sorry that happened to you. As she gets older and begins to need help, which will happen, she will finally understand. But where will your relationship be at that point? Sending you a hug! >:D<
  • I have been through so much of this myself, I understand where so many of you are coming from. So I'm sending all of you a big bunch of hugs!
    >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D<
  • I am so sorry that your mom has passed >:D< Thats got to be tough in its self. i can relate to some of what you have said, i think im losing my fiance because of all this, i dont like being around me, so i cant blame him really. just wanted to say your not alone



    Angiex
  • =(( ...........

    ...... >:D<

    And you are not alone either.. :)
  • So many of us share a common thread(no pun intended- :))( )

    It's weird that I only realized last night/this am-whenever I read this thread that I keep this part of my life seperate from my "real" life.

    That I don't think of myself as phoney or fake in any sense of the word is an understatement,but now I wonder...at least about this part.

    Nobody in my RL(real life)other than my BF and Drs even know that I take medication on a daily basis(other than thyroid meds).Part of the reason,at least with my boys is because I don't want them to THINK of my pain or issues as chronic.I just don't see any reason for people to know about it when there is nothing they can do about it.I feel it would make them feel helpless(knowing them)and that bothers me too... :S

    I always thought that my mom had a sense of denial about her & now I'm beginning to think that I'm not so different,at least in this area.I also thought she was beautiful and classy...maybe I'll become like her in those areas as well... 8> .....Right~Not so much(lol)

    Danni~Thank You for that.I'm sorry about how your mom dealt with you falling too..I guess we never know how other people think or what makes them tick.

    I think I'm starting to get an addiction to vanilla(only the kind with real vanilla bean)ice cream with chocolate & nuts..(seriously-lol),but it seems to only taste good when Frasier reruns are on.. :??
  • What are spouses, family, parents, children would post in this thread. You may or may not want to read it. It could be brutally honest. Maybe it may explain the indifferent behavior. Or the need to get away from not you per se, but the situation. I resent it; I need my spouse around all the time. He works long hours in the week; and on weekends I want him all to myself. I know it sounds selfish. I need to give him space. But I feel lonely.
    And jealous of people who don't greet the day with pain. I want to jump out of bed, make breakfast for my family, and get things done that I used to, and now their burdened with it. I try to do stuff, but I suffer for it. And there are days when I don't do anything to avoid more pain. Like yesterday. I wanted to get away from home, but had to much pain.
    You know you're bad off when you want to buy something and you can't bring yourself to go.
    Or you're not up to doing something fun with the kids. That is what kills me the most. They say "it's okay mom, you can't help it." I can't promise no one nothing or be reliable. Life is played by ear. Nothing is in concrete. =((
  • I never promised you a rose garden

    Along with the sunshine

    Theres gotta be a little rain sometime >:D<

    My boys ARE brutally honest.I may not want to read PARTS of what they had to say,...but most of it would be sweet.They love me.. :X

    I don't think you sound to awful selfish.I think you sound incredibly honest :)))
  • I'm just having a bad day. Sometimes I feel like everyone misses out on things because of me. I know my kids love me too. I wish I could give them more. I guess I'll never be supermom, but I'm there for them; they feel free to talk to me about stuff, and hope they listen to my advice. I believe in being frank. You can't sugar coat nothing these days.
  • Because I frequently do that here ;))

    You might say the same thing if you were healthy. Work, wife, mom, social life, housekeeper, hobbies, there is never enough time for all of the thing we want to do, think we should be doing, etc. I know its worse when you are dealing with pain and you ARE so limited, but I think people with chronic pain (and their families) perhaps appreciate the times when they CAN get out for dinner or back to school shopping or whatever far more than the supermom's who never think they can do enough.

    You give your kids what you can. You don't pretend to be something you are not. You are honest. You love them and you tell them you love them. That is a pretty darn fabulous mom. Blessings to you.
  • It's been just over 8 years for me. I was a busy mom with a career and a very active social life. When I first heard the words "I'm sorry, there's nothing we can do, but try to manage your pain", I thought my head would spin right off of my body.

    I have a very supportive hubby and now grown daughter, but have other family members and "friends" who have never come to understand what I live with, let alone even try. I guess I realized that these people would never "get it", when I was about 2 years into it. Luckily for me, most of these people are not people who I have to see or live with on a day to day basis. For that, I feel truly grateful.

    Even when a loved one "gets it", it doesn't mean that they don't get frustrated or that we don't feel guilty about it from time to time. Especially when it comes to wanting to do the things we used to do, and realizing that we can't anymore. I am lucky enough to have several people in my life who understand and accept me for who I am now, but the hardest person to convince is usually myself.

    I've found that therapy has been the most successful tool I have to cope with the loss of my old self. I am learning how to actually mourn the person that I was and start accepting the person I am now. It really is a kind of "death of self", if you think about it. And my psych doc has helped me to see that I have to go through the steps of grief, just as if it were the loss of someone dear to me. I know I'm not all the way there yet, but I have come a long way. And it seems that the more I come to terms with it, the more my family does too.

    I'm not saying this will absolutely work for every person, but it has been such an amazing experience for me that I wanted to share it. I just wanted to say that I know where you are all coming from and that I am so glad that I found this forum. Every day that I log on, I learn so much.

    Thanks to all of you for sharing your experiences and for providing a place to interact with people who truly understand each other. I think places like this are very much a part of what heals each of us in one way or another. I wish everyone the best in their journey with chronic pain. And thanks for being here to share the ride.

    Peace, Mitzi

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