new to web site

This topic contains 20 replies, has 9 voices, and was last updated by  Noki4 1 year, 9 months ago.

  • Author
    Posts
  • #4784

    gosiatracz6
    Participant

    I am married to my husband who has been diagnosed with chronic pain disorder about five months ago. Since then he has been completely relying on pain meds. and says that work and other life related events get in the way of alternative measures. I have encouraged exercise, massage, physio, but am given empty promises.
    I don’t like what the meds do to him physically; drowsiness, itching, picks at his face, sleepless, craves sugar, constricted pupils. It’s a roller coaster, he is fine for a few days and then I see the symptoms.
    I don’t know anybody else in this type of situation and don’t know if this is part of dealing with the pain or if this is problematic.
    If you have an input or if you have a suggestion who I can talk to in more detail about this please let me know,
    thank you.

  • #4799

    Noki4
    Participant

    Have you mentioned these symptoms to his doctor? Medications react differently on people and his doctor should be aware of unusual symptoms and your concerns.

  • #4801

    petmom1
    Participant

    See if you can get him to keep a pain diary or notebook. Get him to note when his pain is lower and what that allows him to do compared to when it his pain is more intense. If his pain medication is interfering with his ability to get up, move around, beginning to do little things he once enjoyed—then it is time to have a conversation with his pain care team. He may be depressed as well as frustrated that this pain has not lessened or gone away. He may feel like he is less of a man, husband, father (if you have children) or brother (if he has siblings). This is a tough time for him as well as you, I can read that in between the lines.

  • #4802

    TPC_YaYa
    Moderator

    Hello and welcome to TPC. We would like to invite you to join us in our live hosted chats. Monday, Wednesday & Friday at 11am eastern time. It is a wonderful place to talk to others who truly understand the journey of pain.

    You can share as much or as little as you feel comfortable and it is a safe, secure, judgment free place.

    If you have any questions please let us know.

    TPC YAYA
    “The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”

  • #4805

    Carolyn Noel
    Participant

    Hi gosiatracz6,

    Welcome to TPC! I’m so glad you found us and thank you for being a good caregiver for your husband. As someone who lives with pain, I can tell you that it’s really important to have a good support system.

    I can tell you from personal experience that massage really helped me to be able to get out of my wheelchair and walk again. I think that every person has to find the right combination of treatments that works for them. Each situation is so different and complicated, but it helped me to keep a pain journal and write down the levels of pain. how much sleep I was getting, what kind of treatments I had that day/week, etc. and how much physical activity I’ve participated in. A journal helped me really see what things were helping and which weren’t.

    Thanks for all you are doing for your hubby.

    Carolyn

  • #4818

    Samantha
    Member

    Please do not give up on him. It is so hard for him and you, I know. Please keep encourage him to help him self. Exercise is so important to stay ahead of the pain. Eating greens is vital and avoid sugar at all costs it will add to his pain levels. Try to suggest a therapist I see one who helps cope with chronic pain, and I highly recommend it. Pain medicines are necessary for physical function however a therapist is vital to the emotional effects of chronic pain. He has to help himself to be of any help to others. Keep the faith my friend and just try to be as patient as possible. It will pay of greatly.

  • #4822

    Noki4
    Participant

    First let me say that it is hard to be a caregiver. Please be sure and take care of yourself.

    It sounds like this is a fairly new diagnosis and with that comes so much change for both of you.
    He may feel that if the medications are not easing his pain enough then how could massage or physical therapy help. Frustration can be over the top for both of you. He can feel the frustration from feeling as if he isn’t the same person he was before the pain. You may feel frustration because you cannot take the pain or ease the pain for him.

    This frustration can get in the way of conversations happening between the two of you.
    I can only speak and share from my own experience, my husband was beyond frustrated and angry because he was suppose to protect me and he was helpless to stop the pain. I being the one in pain was frustrated because I didn’t understand his frustration, I failed to see how it was all affecting him.

    It helped both of us when he began going to my appointments with me. It helped him to hear what the doctor was saying to me and it allowed him the chance to ask questions and share his concerns. It helped to open up our communication at home too.

    I wish you both the best.

  • #22153

    FredFriend
    Participant

    I’ve been poking around the website and love the recent update. The resources under the Education tab are tremendous! Have you checked them out?

  • #23868

    Noki4
    Participant

    Gosiatracz6,

    I hope you were able to help your husband and look forward to hearing an update.

    Noki4

  • #25014

    Shadowbox
    Participant

    Welcome – I just joined today and was reading through the posts…
    I know just where your husband is at – I was there not too long ago.
    I was on pain meds for a couple of years for a back problem. I didn’t want to do anything because it caused pain. I wanted to be free of pain but even with the pain meds I couldn’t.
    Then, almost 2 years ago I was involved in a horrific auto accident the result of which I am now diagnosed as an incomplete paraplegic. My pain level moved to an entire new level and I did even less.
    One year after the accident, completely addicted to the pain medications (I took the addiction to places no one even wants to know!), I started wondering if the addiction was driving the pain so I quit the pain medications completely. I was in a living hell for 8 months. I couldn’t concentrate because of the pain and as a result could not work. I lost my business, my house, the dogs and my wife. I moved 2,000 miles away to stay with friends who could help me with some of the day to day things I could not do.
    Long story short, I came to the realization that I would live with an incredible amount of pain for the rest of my life. It wasn’t going to get much better and waiting for it to do so was futile. I went back on the pain medication just a few weeks ago and my life changed overnight. The medications “took the edge off” so I was able to concentrate and am trying to rebuild my business. I’m taking steps to deal with the addiction part.
    Most importantly, I changed my way of thinking. I no longer am waiting for the pain to get better – it won’t. I do things, even if they cause me pain because, well, that my lot in life. In short, I have accepted that pain is going to be part of my life and do my best not to let it interfere (as much as I can – I still spend a lot of time in bed or a recliner because of it). When I accepted that I was going to be in pain and that nothing was going to take that away, things changed. Mt entire attitude and outlook on life changed.
    I can’t say how I did it – I don’t know. But I know that it changed my life!
    Don’t get me wrong, I struggle every day with it. There are days I wake up and look forward to whatever the day brings, while there are other days I awake and wish the accident had taken me, but I still try to do everything I can do for that day.
    My being here writing this is an example. I wouldn’t be here if my attitude hadn’t changed…

    Good luck. My only advise is that he has to change and there is little you can do for that except be supportive as best you can…

  • #25227

    Noki4
    Participant

    Hi, Shadowbox,

    It is nice to meet you. I do wish it was under different circumstances. You are so right, we each have to find our way to accept what life has become while living with pain. Support is a very important key but it is up to the one living with pain to decide how to move forward or not to move forward. It is a struggle all the way. It is easier for some than it is for others. The stages of grief that we all go through, it isn’t just for the death of a loved one or friend, it is for the life that we once had. The seven emotional stages of grief are usually, shock, denial, bargaining, guilt, anger, depression, and acceptance/hope. For many of us we go through the stages over and over and sometimes we go through multiple stages at the same time. I really believe that having a support system like these discussion forums and live chats here at The Pain Community can make a big difference for so many.

    Take care
    Noki4

  • #25357

    Shadowbox
    Participant

    Noki4-
    Thanks for the welcome!

    I agree, I’m still relatively new to all of this, having had my accident about 3 months shy of 2 years now. It has been a struggle – I spent the first year not dealing with any of it – I was concentrating on recovery and angry at the pain I was in. Then at one year from the accident, I decided it was time to deal with things – I’m a strong believer in needing to deal (mentally and emotionally) with events. Well, it threw me for a tailspin and into a deep depression. I realized I was not where I had hoped to be, although I still amazed everyone else at how far I’d come. The fact that I can walk is a miracle but I still thought I could “beat this”. Ha!
    Now I’ve come to accept it and move on. I’ll be dealing with it emotionally for the rest of my life but I’m coming out of what I call “survival mode” (from the depression) and can now takes bits and pieces of it to deal with and not get too overwhelmed.
    I’ve never been a “poor me” type of person and still am not that way but I’m still mourning the things I cannot do.
    By being back on the medications, I now realize just how much I needed them (not just the pain medications but the others many of us are familiar with – the Baclofin, Gabapentin and so forth). I can finally concentrate to work which was my biggest worry – I now know a lot of that is coming from the pain.
    Anyway, I’m getting my life back on track – thanks again fro the welcome and to gosiatracz6, I hope things work out – It’s a crazy, mixed up world when something of this magnitude happens to someone. As much as I thought I was “holding it together” it turns out I was shutting everyone out and crawling into a hole without even realizing it (just ask my wife!)!
    Take care…

  • #25479

    TPC_YaYa
    Moderator

    Shadowbox,

    Your words speak of hope and renewal. Two key things that we as people living with pain need to have close by in our lives.
    The journey of pain is a long & hard road to navigate. We sometimes lock ourselves away from the world around us because pain can be and is dark, lonely, frustrating and over-whelming. We search to find the light again and have a hard time finding the light switch.

    Finding support that is secure, safe and welcoming can make all the difference. We discover that we are not alone and there are others out there who are traveling the road of pain and are also searching for the light.

    Noki4 shared the 7 stages of grief and it is important that we grieve the loss we feel. By understanding the different stages we are able to validate what we are feeling and that can be very helpful.

    It seems from reading your update that you have found the right path for your journey and are on track to the hope and renewal and we are so happy to read that. Thank you for sharing with us.

    Take care,

    TPC_YaYa
    TPC Community Moderator
    “The views or opinion(s) contained herein do not necessarily represent those of The Pain Community.”

  • #25635

    FredFriend
    Participant

    Welcome Shadowbox!
    You are so right about how we delude ourselves into thinking that we are “holding it together” when in fact we may be shutting everyone else out. I’ve been thru that cycle and now I try to keep moving forward with joy. I go farther on the good days than on the bad days and always HOPE for more good days. Figuring out the myriad of things that help to diminish the pain just a little is an ongoing puzzle to put together. Finding a safe place to express myself (like here) has been a very positive part of my journey. I also rely on acupuncture, sleep management, distraction, exercise and prescriptions. You are so right when you said that the medication picture isn’t limited to pain relievers because we have to attain a level of overall health in order for the body to be ready to manage the pain. I believe that a significant portion of pain perception is in our attitude and emotions toward the pain. The more limited or angry I feel (mentally) the more aware of the physical pain I am.

    Your updates show a great path and great self awareness that will bring hope to others. Thank you for sharing.

  • #25636

    FredFriend
    Participant

    Dear gosiatracz6,

    Your willingness to share and reach out shows to me that you are a great caregiver. Each of us who lives with pain has to acknowledge and understand the uniqueness of our own pain. We also have to take into account how our own pain affects the people around us. My experience since my teen years is that my pain will never fully go away. Once I came to that realization, like Shadowbox, I was able to move forward and participate in life by finding lots of little things to whittle away the pain.

    Exercise and nutrition are so much a part of my life that I sometimes forget that they are part of my pain management plan. Every step I take is a step towards overall health. A few years ago someone gave me one of those little drugstore pedometers that you can find for under $10 and challenged me to wear it for a month. Every day I recorded the number of steps taken that day on the wall calendar and saw that on a good day I’d take about 3,000 just moving around the house. The second month I challenged myself to add 50 steps every week. It has worked out great for me and I now know that if I take too many steps in a single day I’m going to be in pain and do less the next couple of days. I also learned that if I have a lower number of steps than I will be stiff and be aware of more pain. So now I know what my average steps should be per day and by checking the pedometer I am able to meter my activity to be enough to help and less than the harmful amount.

    Maybe you could do a similar challenge with your husband. Maybe you could challenge yourself.

  • #32167

    puma
    Participant

    Hello TPC, I am a newbie to this community but not a newbie to pain, like you all. This is my first post. This is the topic I’m looking for support and thoughts on: I have had fibromyalgia/arthritis for 20 years, and it has been getting worse especially in the past two. I’m in the pain management clinic at Kaiser, yadda yadda. What I find myself doing is protecting my lovely husband from my pain. I am fortunate to be married to the most amazing superman. I love him to death, he is so supportive! But my pain has taken a turn for the worse, and my own symptom-management is not “doing it” like times past (ya know, meds + mindfulness + acupuncture + chiropractic + natural supplements + yadda yadda). I have hit a new pain high, and he can tell in my expression and body movements. I find myself not wanting to “complain” to him, and although he is a wonderful listener, I don’t want to burn his ear off. But he can see it. So that’s where I am at. Maybe that’s why I’m reaching out now, and haven’t before – because I’m entering a whole new level of pain, and I’m really worried, and I’m scared to tell him. Thank you for letting me share. – Puma

  • #32286

    Shadowbox
    Participant

    Puma-

    I can relate – I was the caretaker for my wife for 8 years until I myself had a terrible auto accident and now am on the other side as well.

    From my own experience, I tend not to harp too much on how I am doing. My wife is aware that I am in pain. On the other hand, when things get worse or I have a new symptom that is bothering me, I do talk about it with her. It’s important for her to know when things are worse, if for no other reason so she knows that my behavior change is due to a new issue or new level of pain and not something else 🙂

  • #32315

    FredFriend
    Participant

    I find that communication with my partner is key to heading off misunderstandings. I fight to overcome my tendency to go quiet when in pain AND when something is bothering me. A few years ago we scheduled a sit down meeting to come up with mutually agreeable “rules of engagement” around things that bug us. A big thing was that when I “hermitized” myself it was seen as anger and the dreaded quiet treatment. Now either one of us is able to use a keyword that suspends emotional judgement and inquire about the other’s mood or speak up about one’s own pain/emotion.

  • #32407

    Noki4
    Participant

    Hi Puma,

    You sound just like me. Pain has been the third person in our relationship for 27 out of the 28 years we have been together. I have always tried to protect him. He is beyond wonderful, beyond supportive, beyond compassionate and he would fly to the moon if it could help ease my pain. Even though I know all of this, I have always tried to keep the pain to myself as much as possible
    I do talk about it when there is a need. Like Shadowbox & FredFriend shared, I know he needs to know especially if it is new pain or if it has become that extreme overwhelming kind of pain. You know the kind where we know we are in the kind of mood that we are not so much fun to be around, grumpy, angry, scared all those feelings we go through when our pain levels increase.

    Our guys sound so much alike, he can take one look at me and tell when my pain is bad and he can tell when I am not telling him the full story when he asks how I am doing. I know all this and I still will say things like, No, really I am okay or it isn’t anything I cannot handle.
    He also knows I am lying to him but for the most part he rarely calls me out on it. He will patiently step off to the side and let me do what I need to do to try to ease the pain. If he see’s nothing is working then he will step in and say something like, “are you ready to tell me what is going on and how bad the pain really is, so we can work on this together?”

    Over the last year, my pain levels has taken a severe nose dive. In all the years I have been dealing with increasing amounts of pain over the years, never have I had a year like the last one. It seems like the pain increased daily and just kept on climbing. I shielded him from most of it, (it helps that he works out of state thru the week) but still he can tell when he is home that things are different. It wasn’t until after the holidays that I finally broke down and told him how bad things have gotten. That things I could do 6 months ago, I am having difficulty doing now. He knew that I was shielding him and while he adores the fact that I want to protect him, he was upset that I was worried/scared to share with him just how bad things had gotten.
    He said to me, ” how can I help you, support you and be there for you, if you are always trying to protect me?” He then said the one thing I have known through out all of this but kept pushing aside, he said, “we have made it through this 27 year pain journey by working together, we made it through it by always communicating honestly with each other, we made it through it hand in hand. I have never, ever even had the thought of not wanting to continue to support you no matter how many potholes the pain put in the road and if the pain is going to start throwing boulders in the road it had better bring some back up, cause I am not going anywhere and we will make it through this together.”

    Talk to him, I bet you hear pretty much the same things I heard.

    Take care,
    Noki4

  • #32408

    puma
    Participant

    Wow,
    Thank you Shadowbox, FredFriend and Chronic Pain Survivor, I have been really touched by your supportiveness and words. They have really helped! I needed everything you all have said.

    Yes, my wonderful husband has been very supportive, but like you Chronic Pain Survivor, I have hit a new plateau recently, that scared me, and I found myself wanting to protect him. Reason is – we are still working. We’re both 54; not planning to retire until 63-ish. We are not doing badly financially. I’m saying this because we keep talking about all this travel we are going to do in retirement, and I’m scared that I may/may not be able to do it, if my pain progresses like this…I’m just worried that when we retire and “have money” I won’t be able to move…thing is, we can travel now, and we both know it. He’s just a very good steward of our cash-flow (very conservative unlike me!) We take maybe a vacation a year (I shouldn’t complain). But, we could do more… I’m concerned that if we wait until we ae 63…I don’t know if I can do “the big travel” then… we are going to see our financial planner tomorrow, and then we’ll have a good idea where we’re at. I’m thinkin’ travel more now while I can still move… (I mean, we also have inheritance on the horizon ‘n all). So that’s what I’ve been sacred about recently. Thank you all for sharing!

    Puma

  • #33515

    Noki4
    Participant

    Puma,
    We also had that plan to travel when he retires. He will turn 60 this year, so we have a few more years to go.
    Plus we have hit a snag in the road so not sure that traveling will be in the cards. One of our daughters was given the diagnosis of cancer.
    The insurance that she had through work turned out to be horrible. Lots of big co-pays that had to be made at the time of treatments or no treatment. We went through all of our savings and maxed out a few credit cards to ensure that our daughter was given every treatment available.
    We are very thankful that she has now been cancer free for a little over a year.
    We have no regrets and would do it all over again in a heartbeat.

    I am sharing this so you will understand why I am of the mindset that if you can go ahead and start traveling now, you should.

    We just never know what tomorrow, next week, next month or next year will bring.

    Take care,
    Noki4

You must be logged in to reply to this topic.