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Wife Of A Husband Who Has Chronic Pain...is Anyone Out There Still???

I am looking for support from other spouses in my situation and this was the only group I could find but it looks like the latest posts on here were from last year :( Is anyone still on here?????????
PittMom PittMom 31-35, F 58 Responses Dec 25, 2010

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I'm in a relationship with this amazing man. we have been dating since Summer of 2011 and we're both 22. he's got chronic back pain thats only gotten worse. its hard sometimes but he is so ******* determined to stay sweet and stay talking that most days are great. he feels suicidal on days we cant get drugs, we have to get them off the street because his doctors probably think he's a pill popper so they won't prescribe pain meds!! so ******* frustrating!! in these couple years we've been together we have smoked weed, which he says helps a little, he has tried kratom from our local headshop which helped, pills obviously like pain killers, and even robotussin tripping because it is a dissociative drug. finally, this past couple months after going thru hoops for different doctors and continuing care with his primary care physician, he has found that laser heat therapy is helping a little. before, he would buy massages which lasted an hour and it helped but as soon as he left, his back would gradually go back to searing pain. I massage him less than every day but as much as I remember to. usually we're in bed falling asleep and I have to rub his whole back, his thighs, groin, butt, backs of the legs, and I can literally feel these super tight tendons stretching through his legs as if his muscles are too short for his tall body!! I don't know, but we keep praying every day and we are thankful because years ago he just dealt with it every day and now we are lucky to have jobs and connects to be able to buy drugs or weed whatever, but there's never enough for him to be pain free for an entire week. its very sad. it kills me. he says the only reason he won't off himself is because he knows me and his family would be completely devastated. I reinforce this all the time. we all need and love him, because he is so smart and interesting, he's polite, and funny. he's SUCH a gentleman. even in his pain, he will pop some extra pills just so we can make love. it is truly amazing. only recently our sex life is iffy because my poor love is so depressed and discouraged. he has terrible days where everything goes wrong just from losing money, getting bad deals, to having to say no to hanging out with friends because of pain, to little things like traffic being ridiculous, and his constant need to be around a bathroom. he is very prone to getting sick when his pain is excruciating. honestly I read about 8 stories. everyone says their sex life is down, they feel alone, and they have to complete a lonely life of responsibilities all while waiting to see the man they have been missing because he is clouded by his pain. KEEP IT UP! He appreciates it so much! he needs you! don't give up! he would do this for you, and maybe (you never know) you will receive a solution, and the tables will turn and you will need him. and he would be so happy to be there for you. my boyfriend has always been there for me with advice, love, care, understanding, a listening ear, hugs, kisses, sympathy, and any chance he gets we try to catch a movie in the comfort of our home, or go get dinner out, once in a blue moon. we love eachother so much, and he's always been here for me, so I'm here for him best I know how to be. the only thing I can't stand is cleaning up for him. he's always been really messy and it drives me up a ******* wall. it doesn't matter how much I clean he can dirty it all in a couple of days. so I don't clean any more. I don't know if I'm being cruel or if I'm just realizing that he'll learn to do it himself if I stop doing it for him. I want the best for him. I just don't want him in terrible pain either. it drives me nuts. anyways, I'm sure it will get harder the longer we're together but also, he's my best friend in the entire world. we're each other's soul mates. so I can't give up on him. He was there for me at the worst time in my life, so I'll be here for him in his terrible times. I just want to encourage everyone here to keepby their spouse's side. they don't have to say it and it could hurt their ego or pride so much just understand, they are so grateful but also feeling like a burden. do your best to prevent them from feeling like a burden. that makes someone want to remove themselves completely. so keep on keepin' on, feel free to chat. most of all, have patience and try to bring the light from the end of the tunnel a little bit closer for your disabled and crippled and hurting lovers. care for them. they are injured.

Glad to have found this group! My wife has had chronic pain for our entire marriage. She is a very strong person and has worked through the pain for well over a decade. She doesnt give herself any down time, fearing that if she stops moving the pain will get worse. She has taken to drinking and has gotten very bad - accusatory, attacking, abusive. I want to be supportive and help her through all of this, but also need to protect myself and my health. It's been going on for more than a decade. I love my wife and want to be here for her but don't know how to cope. Any experiences you want to share will be most helpful!

Yes. Just joined this group. My wife has been in chronic pain since a botched knee replaceable surgery 2 1/2 years ago. Other painful problems. Difficult to find a way to support and wish we could talkl about something else (fortunately we do sometimes but her pain mostly)

Wow, I just stumbled upon this page, as I am looking for support. My husband suffers from AS (arthristis). It wasn't too bad (or at least I didn't think so) when we first started dating, it's been 5 years now, and it is worse now, and it isn't going to get better. I think maybe we are still in the begginning stages? He does not talk about his pain much, unless I pry, then he seems to get frustrated with me when I feel like I am only trying to understand... It is really hard to watch someone you love go through chronic pain. I think with my husband, he is struggling because he is still so young, and he WANTS to do things that his body is not allowing. I don't know what that does to his ego and pride... I understand it is a struggle. On the other hand, I have been feeling like I am crazy, or like I am a horrible mean and selfish person, that he is the one going through daily pain, and I'm feeling hurt, unappreciated and rejected.... sometimes I sleep in the other room because I don't want to distrub him, and honeslty, it hurts wanting to be intimate with him, and getting rejected. He says it is not personal, and that he thinks I am beautiful, but after awhile, it is hard to believe when you just don't feel it. I give credit to all these people on here who are sticking with the people they care about, even though it hurts us as well, emotionally. Someone mentioned balance, and that is what I am working on right now. Trying to make time for myself, and not feel guilty. I guess I am struggling with outside realtionships.... I don't want to become isolated, and I am trying to find friends that I can spend time with while NOT feeling guilty about going out. Iwork full time, and we have two young children. He is staying home with them and is an amazing Dad. Right now, it is more of a issue between him and I on a personal level as spouses... I just don't know what the right thing is. I feel bad when I work all week then come home and feel like I need a break! Very stressful and overwhelming. I am just trying to deal with all the guilt issues, and now the feelings of resentment. Sometimes I feel like, I didn't sign up for this! Then I remind myself, I did, through sickness and in health.... I try and remember that if roles were reversed, i'd want him to be with me, but on the other hand, I wouldn't want HIM to feel isolated and trapped. So, I guess my mantra for now is balance balance balance. Just trying to find a way to love and support him, but love and support myself as well! Good luck everybody.

i read ur post and it moved me to tears. im in the same situation. his pain is bad at times, we havent had a strong sex life. although, like u, i understand, but after a while, it wears u down. my husband still works full time. i feel unwanted. its about ruined our marriage. we didnt have sex on my wedding nite. all i could think was wow this is the memory ill remember forever. i love him and i feel so bad for having these feelings. i accused him of an affair. he never told me he was hurting that bad, we just stop having sex. by the time he told me the damage was done. i hope ur situation has improved and all is going good for you. thank you.

Wow, I'm so glad I found this story, it's nice just to be able to hear from others in this situation too. My husband (who is only 22) has such constant and severe back and neck pain that at times he can barely move, and he walks with crutches now. It's been heartbreaking to see him go from an extremely athletic, active, fun loving airmen to this miserable shell in only ten months. He's lost 40 pounds from the pain and nausea and weighs less than I do now (160 pounds, and he's 6'6"). To top it off, on top of taking care of him and the house entirely by myself almost 24/7 I've just found out that I'm pregnant. I'm excited but it's also pretty terrifying for an 18 year old, especially one who's living on the opposite coast of all her friends and family (aka support network)! I will be hoping and praying for everyone else who's commented here and I hope we all find some way of coping.

Hi guys I am on same boat as all of you. My husbnd works but is in great deal of pain, from his back to this lower body is all in pain. He has been to many Doctors but unfortunately they all fail to conclude his treatment. He was grumpy but now he is more. We have a 10 year old son I am just worried about him. I have applied for a job to that I can spend some hours outside the house, but I failed to get one.
I cant cope any more with his temper and frustration. I have tried in many ways to comfort him.I just dont know how to deal with this situtation. I feel all my happiness has been sucked out of our lives, no family time, no husband wife romance.
Just praying God to answer our prayers.

I know the feeling trust me,it sucks bad,and women need romance

I understand and feel the same way...men too...

My husband, too has debilitating back pain after 3 failed surgeries. He's only had a handful of "good days" since Christmas. We have 4 kids and I am just so worn out! This has been our life for so long. We've lost all of our friends, have no social life whatsoever. I am very sad and lonely and would love someone to talk to that understands.

I would love to talk to someone as well,and I do understand

We are also on the way towards losing our social life...i would be open to speaking.

Hi, if you get this response, contact me and we can exchange email addresses. I live with the same scenario as you and it has been the hardest thing to live with. Take care.

wow this is a very depressing thread,i'm trying to think of something encouraging to say but i'm so down and need help myself.all 4 years of our marriage were about his pain,doctors 3 manor operations.i love my husband dearly but also have my own emotional pain to deal with as it seems all of you do to.since he's been on the narcotics the pain seems worse and we have no sex life,i lost my job and am wondering whats gonna happen to us .i think about suicide daily.he at least has ssdi coming in if he found a roommate he could survive without me ,this life is just too hard for me i feel like a total looser in life with nothing to ever look forward to except to work till i drop.i'm severely depressed.does anyone have any hope to offer?i feel so guilty for having these feelings it hurts to see my hubby in pain all the time.he was allot more fun to be with before the drugs,his pain seemed less too.but i doubt i'll ever see that man again.

I just stumbled upon your site and am so delighted to have found it. I have been thinking that I am an extraordinarily selfish woman. My husband is recovering from a 4th level fusion and is now 12 weeks post surgery. His pain seems to be getting worse and he is spending more time lying down. His mood is getting darker and it sees that all conversations no matter what the topic eventually include back pain. I am continually trying to encourage him and support him offering him positive ways of looking at things. I do not think he can understand how it feels to be in my shoes and how it feels to come home each day from work to the same gloom and doom. I feel so angry and frustrated and alone. On most days no matter what I do it's not the right thing. He needs me but on his terms. He has been suffering with back issues for 20 years but this most recent bout started last July. I am so frightened and scared about the future. I am hoping I can cope and stay emotionally stable. Spousal back pain is overwhelming. I am so happy to find that my feelings seem to be common amongst those of us caring for loved ones in chronic back pain

You sound like me. My husband "needs me" but I don't know what that means. We have two young children. I do all the caring for them (except for his good days, which are down to about 15% of the time now), and just don't have time to spend with him while he lies flat. That is his only relief when the pain is bad. He is upstairs in bed, alone, feeling resentful and I am downstairs, running the entire household feeling resentful. He mentions suicide and how I would be better off without him. I do not want him to leave, nor do I want to leave him. He is my best friend - well, the old him anyway. I just need helping coping and I don't have anyone who understands in my life.

I understand exactly how u feel...I am in the same spot...

In my opinion, it’s a hard decision and you are still there because you want to be near. So far there are 78 responses on this page and I just read all. I feel like I read about my life 78times; definitely a piece of the puzzle in each response. I too appreciate all who have shared their experience here because it is such a lonely life and unusual to find anyone who can relate to the passive-aggressive, dependent adult whose parents send Band-Aids and turn the other way. Makes me have to shield my resentment of this situation to all. My own family has always loved him but sees what it’s done to me and so they tell me to move on (I have to do everything by myself). We are reaching 20 years of chronic lower back pain marriage and have three teenagers, so I am all in starting from my wedding vow to this moment. (All the time feeling loneliness, terrified, overworked, depressed, confused, tirelessly engaging the kids to make up for the lack of the 2nd parent participation.) We’ve learned a lot about pain killer side effects which seemed to be worse than the pain sometimes leading to suicide desire, extreme depression, nausea, insomnia, etc. To remove the side effects, he’s tried supplementing with acupuncture and heat suction, med marij, different pain meds, antidepressants and sleep aides, yoga/walk/swim/bike, massage, stretching machine, all the various experts reviewing his MRIs. Mostly, he screams in pain whenever moving into different positions (sit/stand). Huge spinal clinics in So.Cal and other doctors in different states have told him that he is a poor candidate for surgical success. He has had twilight exploratories and it was concluded that his pain moves around and the precise nerve not found. I recently checked into oxygen therapy and came across ozone therapy. Hang in there everyone and, although difficult, put pride aside, don’t take it personally and keep trying to initiate the close relationship you want. (I agree with getting angry from him using so much time on the internet and not using it to be productive! But on the other hand, the pain is so overwhelming; sometimes he just needs to catch that break) I do miss him when he is the stranger in our house. I tell him that he is a “time traveler” because he misses so much…responsibility, kids daily deeds. I don’t think he gets it.

What about sex? If he is in too much pain to have sex like every man supposedly wants to, then is THAT perfect??

Hi! I'm not married but I live with my boyfriend and he suffers from chronic pelvic pain. I need support.

I dont know what to say....too busy crying. Went thru a horrible first marriagd have 2 great kids remarried three yrs ago..thot my husband was so much more. Since we married continual bavk pain. He has a hx of seizures. Had some of those..it has been hard. Had great sex life then it stopped...then it really stopped due to his bac. Cant rem last time. I have tried everything yo let him know i need to feel needed and nothing..he never talks about it..i bring it up in despetstion. Je says he will work on it and nothing. I feel hopeless. Should we b married?

Hi! My hub of nearly 10 years was diagnosed with a degenerative disorder and has painful peripheral neuropathy that is debilitating. I work full time and do 90% of the house work and support him the best I can, it is extremely difficult to have to watch him suffer and their is nothing I can do, I try to remain positive but sometimes it's next to impossible. I do not regret marrying him nor would I change it. Is what I am feeling normal? Am I doing enough? Too much?

Once you're doing all the rest of the work there's not much else you can do except take care of yourself. And tell them you're never leaving.

I am also the wife of a wonderful man who is constantly in pain. I'm looking for support from others in this situation. It's awful to watch the one you love in pain all of the time.

Hi I would love the opportunity to connect, I'm living with a spouse who is living with chronic pain, and it has changed our lives in so many ways.

My 23 year relationship is ending due to the effects of my husbands spinal chord injury/failed back surgery 8 years ago. I have been looking for support for years. Many of your stories could be my story, the paing that alters his personality, the dispair, the isolation, the guilt, depression and real medical problems from pain medication that just keeps him comfortable. Does a facebook page really exist? I could not find the one listed here.

I couldnt find the facebook page group?

If anyone is available to chat, I'm in the same situtation. Please contact me!!

well Im new to EP, but Im an pc survivor and we are (me & spouse) are goin thru what every body else are goin thru. diagnosed in 2003 , so we been thru a lot ,so we got other people in to our bedroom , mff & fmm . it really works for us not an everyday thing , once an year is was good ,respectfully bobby rmj1945@y/c

I am here is anybody else?

If you are still here, I am in the same boat! I would love to chat!!

I am new to this and just checking in. I am coming to realize that his is what I may be dealing with and it isn't fun. I have been wondering whey my husband has been so mean lately. He is a really nice guy, but I can tell (and he has told me) that he is in a lot of pain... back pain. I think I need some support here... so I may join your forum.

I am here

Hi there,

I am engaged to a wonderful man who suffers with chronic pain. He had the condition when we started dating 4 and half years ago and it’s always been a part of our relationship. He had a girlfriend when the pain started and their relationship did not cut it because he told her everything and I guess it was too much. When he first told me that he holds back from truly expressing to me how he feels all the time, I was hurt that he didn't think I could take it. But he was right! Our relationship works because I sacrifice as little as possible. It is true that I work to support him financially and I do a great deal for him, but he in turn does everything he can for me. Recently he has become more "house bound" and he has very little interaction with anyone other than me. I have always been a very sociable person but I feel guilty for going out when it means he will be alone (again). Together we have come to terms with the fact that his condition is permanent and that it will most likely get worse over time. This has been hard for us both and some days are worse than others. As much as he tries not to share "too much" his body language is often cold, distant, and sometimes aggressive. It has taken me a long time to lean not to take it personally and to remember that we're on the same team and I do make his life better.

I'll have a look on FB and see if I can find you guys :-)

It sounds like your fiancee is a strong person and loves you a lot to try to keep it from you... but HOW did you 'come to terms' with it? Isn't that like giving up? Aren't you angry that he isn't trying one more thing to get better?

Thanks for your reply! My now husband is defiantly a strong person; I think I would be crazy if I were in his place. Since I last posted things are looking a lot more hopeful…he has had a Spinal Cord Stimulator fitted and although he is still recovering from the opp, and the recovery is going to take a while, it is already looking like he will achieve the target of 40-50% pain reduction. I think it could be really life changing for him and for me by extension. In answer to your question I think perhaps it was me who had given up, probably because it’s easier than being hopeful only to be disappointed again. I am learning that there are always new things to try and although probably most will be unsuccessful there is always something else around the corner (sorry that is kinda cheesy).

Hi,

Im about to marry a man with cp. but im already starting to feel like i have the world on my shoulders. I feel just like u all.......except im not married to him yet. If u could do it all again, knowing what u do, would u still have married ur spouse??

No. I thought that he was so strong that nothing could stop him, but chronic pain has leveled him (for my husband it's lung pain-- you can't do anything when you can't breathe). I am not learning anything from this experience. I would get out if I could.

Having a lousy day. It started 3 years ago my husband and I moved in with our in-laws (200 miles away) due to his unexpected illness that resulted in chronic pain. At this time, I was in college and traveled back and forth for the rest of the semester. After that I worked 1 full time job, 1 part time job and cleaned really nasty apartments on the side to save money to go back to school and make sure I had enough to cover insurance on him so that he would have health coverage and not fall into pre existing. In May, I graduated with a 4.0 (yay!), passed my board examinations, am moving back to the town we had to leave, and have a job waiting for me that will support us. I have waited for 3 years to flee my in-laws basement and instead of being happy for the progress, I feel bitter. I am bitter that I am left to pack this basement all by myself and I am bitter that my spouse is in too much pain to even go to Lowes to help pick out paint samples and I am bitter the chronic pain has sucked both of us dry. I was supposed to go to the pain doc appointment with my husband today, but I just did not have it in me to go through the fight (husband spent last weekend in the hospital secondary to complications from a facet injection this doc performed). Thankfully, my father-in-law went with him, but I still feel guilt about not being the "solid rock". To top it off last week my 16 year old kitty was diagnosed with bowl cancer (she is in pain and I am undecided whether or not to put her through the move) and this morning I discovered that a mouse has gotten into the house, specifically the cabinets under the kitchen sink, so all of my small appliances have icky feces on them. Like I said, I am having a lousy day. If any of you pray or believe in sending positive thoughts, I sure could use them right now.

Oh boy, I can totally relate to how you feel. My husband had a spinal cord ependimoma removed 5 years ago. It was like a spinal cord injury. That includes the chronic nerve pain, disability, medications, mood swings and the list goes on and on. He is very difficult as he was bipolar before this even happened. His 87 year old father moved in with us last month and he has dementia. So now, I have to take care of my husband, father in law, dogs, chickens, plants, pool, 2800 square foot house and oh, did I mention we own our own business?? Really? Am I just being weak or do I have a right to feel a bit overwhelmed. I really think that if my husband wasn't so miserable and was somewhat supportive, It might be a bit easier. I know he is in pain but I really don't even feel like he has anything left for me. He is either drugged, sleeping or miserable and in a bipolar episode. He scares all the shrinks away and flat out tells them he believes he is perfect. I find it difficult to remember what it feels like to have a normal relationship and be in love. Those days are long gone. I am stuck here for the rest of my life. I wont leave my father in law and I made a commitment to my husband. That said, does that mean I have to sacrifice my life and happiness for his?

Everything you do and every moment is a choice. Fewer plants? Someone to help with the business (intern for no money?) YOU ARE NOT WEAK but it's not the rest of your life, either. You can change your life (you just can't change your husband's pain).

The father of my new baby is in many types of pain due to serious injury and ehlers-danlos syndrome. He is 21 and my baby is 6 months. We have been on this road for about 3 years now and it's getting harder, and very frusterating. Since the baby was born I have been the one to put baby in and out of the crib, changing, playing, basically everything it takes to be a single parent. Dad gets to interact when he feels up to it. Dad also sleeps in until he feels like waking up. I did not expect him to get worse after the baby came. He is not on disability b/c none of the drs around here understand what he has and what he has done to his body over the last 21 years. So, I cannot recieve childcare assistance. He's ruined his joints and muscles. He's lost 120 lbs. Its' very hard to get him to eat....or even leave his room. I feel so alone, I feel like i'm better off living by myself because at least then I'd have one less to care about. It's hard to keep living.

Will be praying for you. Keep appealing the disability and get a lawyer.

It never really occured to me until I started reading everyones posts here, but WE are all in chronic pain too. No it is not the same physical pain that our spouses and partners suffer. But we are in chronic mental and emotional pain. It is incredibly painful to watch the person we love so much be in pain. It is horribly painful to watch our relationship crumble under the pressure and weight of our burdens. The guilt we suffer for being the "healthy" one. Being unable to "fix it" for them.

We feel so selfish if we think about ourselves, but maybe we need to focus on our own chronic pain, and how to deal with it?

I completely agree.

You are absolutely right. My wife has been in great pain now for 5 years due to a botched back surgery.
I'm a "fixer" and I am extremely frustrated because I can't fix her.

YES YES YES. That's why I wanted to join a support group. How can we keep going as the healthy one without going insane?

I'm really not alone! My husband and I will be married 7 years this year. He was injured at work and had a fusion in 3 places. He officially has been diagnosed with failed back surgery syndrome and has a spinal cord stimulator in his back. Life just sucks sometimes. We have one child (partly because of his injury). And I'm the only one working. At one point I had 2 jobs, working 70}+ hours a week. I feel like I can't balance it all without neglecting something. I always feel like I'm failing somewhere. I don't feel like I'm a good wife. or Mom or friend. I look around my house and all I see is things that need to be done that I HAVEN'T done yet. All the while my best friend and soul mate lives in exscruciating pain. Every few months he goes through instances of dispare to where he wishes he wasn't alive. He has told me multiple times over the past few years that he doesn't know how much more he can take. That he feels like he is 80 years old. But that in the end he wouldn't hurt himself because of our son. He's on a cocktail of RX's that help make life "manageable". He doesn't misuse the meds, which I'm thankful for. But I worry about the long term affects. I would love to be a memeber of an active board, on facebook. I don't know if anyone has created a board for spouses but I could really use the support.

I created a FB group under the name "my loved one suffers from chronic pain" if anyone is interested in joining.

I couldn't find it :

I can totally relate to your story. I have been married for nearly 9 years. My husband has 5 discs fused and has had 4 back surgeries. All have failed. He has recently been diagnosed with CRPS/RSD. We have 2 young children. He has not been able to return to work since he was injured.

It is hard to even think about all of our " responsibilities" to keep our households going. It is single parenting, care taking, financial responsibilties, insurance company fighting, and zero emotional support!

Hee hee-- my husband says he won't actually kill himself because then we wouldn't get his life insurance!

I am not able to find your face book page, however it would be a great out reach.

2 More Responses

This sorta my story. Been married 13+years, have an eight yr old. Husb has chrinic back pain since before we met. Hes seen sev drs pain mngmt folks, goes to a chiro, practices yoga and takes meds when he can....he does nt like the pain meds, the ibupr doesnt cut it....so,he self medicates w alc and adm to being an alcoholic. He too when the pain is real bad suggests we just divorce as hell never be other thana disappointment. I dont want to be a pt mom so that does not seem like an option. I believe the pain is real but also feel the addiction to alc is worsening. He stays out late 2_3 timesper week...self medicating and when is home and ober he can e criticaland harsh..due to pain and not drinking. Part of me wants to say enough BUT then hes alone and I face sharing custody w hich is not a great option. I would love to hear from others for support and ideas