Spouse with a chronic pain

Hi, my husband has the same condition as your wife. He has a chronic pain caused by back injury. It was a long time ago, but it still hurts a lot. He can’t walk and sit properly, and it doesn’t hurt him only when he lays in bed. It’s not easy when you watch your spouse suffering from a chronic pain, and no being able to help him. He takes some drugs, but has no relief. He often has constipation due to all the narcotics that he takes, and sometimes he gets even heavier side effects. It’s very hard to cope with chronic pain, and sometimes I don’t go to work because I can’t leave him like that. It hurts me when I watch him suffering and I hope I’ll find a way to help him.

My husband has been taking ultram for hip pain under the supervision of a pain mgmt. doctor for 3-4 years. A few months ago, he had surgery on his shoulder and the surgeon prescribed vicodin to take during the recovery. He went back to pain mgmt. doctor who had been informed of the vicodin and dropped him. He went to his GP doctor who said he couldn't do anything for him since in Texas the state is really hard on prescribing pain meds.

My husband has become moody and withdrawn. He won't talk to me and ignores our sons. We are about to take a 7 day cruise to celebrate our 20th anniversary and I don't know how I'll survive it?

Has anyone gone through this that can give me advice???

JoAnne

Well ive been in this crazy circle for 8 months.Ive got so many things wrong with my back.AND diagnosis for them.BUT cannot get meds to help me.FIRST i had to find my happy place.Get onto something that made me not think about it.beacause pain can destroy your nerves.cause depression.It tears so many good marriages apart.And he is lucky to have you mine couldnt accept me being disable.Get him to a doctor.To me pain mngment is a joke.Ive been through it.Here we have Pathways.A place that is for depression and nerves along w/chronic pain.TRUSt me it all goes together.The pain wears and tears until you hate not being able to be happy, live,go,be with family and friens.I learnt all my problems had 90% to do with pain and 10% was depression.He needs to find him another DR,and see a therapist.

I've been taking MS Contin and Norco for seven years, since my spinal fusion. I do not believe anyone should expect anything over 70% pain relief from meds/narcs. If you aren't getting anywhere close to that level of relief you need to be more pro-active with your medical provider. They can be sued by patients for undermedicating them, you know. Wouldn't it be nice to have an average pain relief level of around 50%? My pain doctor in San Diego said their practice's goal was to relieve 50 - 75% of your pain. Anything higher increases strongly the chance for psychological addiction. You're already physically dependent on the meds so atleast live your life and be gracious that there is something out there to help ease your suffering! Atleast you weren't born before the advent of morphine!!! Most of us would have jumped off a cliff, I think I would have, if that were the case. I'm sure many did, in fact.
DONT GIVE UP ASKING FOR PAIN MEDICATION THAT WORKS. BE ASSERTIVE AND STAND UP FOR YOUR RIGHTS. THE DOCTOR MUST KNOW JUST HOW MUCH YOU ARE SUFFERING AND WHAT YOU ARE WILLING TO DO TO ENSURE PAIN ASSUAGEMENT. Good luck to all. I think I have a really good doctor and got really lucky. I take 100mg morphine (MS Contin) three times a day and take Norco for breakthrough pain. Thanks to them good boys, I can work a full-time job again and have been employed F/T for the last 4 years. God Bless Narcotics.

It is extremely difficult to be a spouse of someone who has chronic pain, whether malignant or non-malignant. I have very severe Fibromyalgia (about the top 1%), as well as Chronic Myofascial Pain. First of all, read this: ***edited by moderator*** web addresses not allowed -- (Note: Copy this TinyURL and Paste it into the web browser you are using; it's a short version of the long URL that redirects to an article written by my pain doctor.

In this article, my doc describes in-depth how intractable pain (severe, incurable pain ) is a disease in itself. Severe pain can cause all kinds of physical problems if left untreated. In this day and age, nobody should have to suffer intolerable pain. Many states have intractable pain patient laws, that protect the patient from suffering. I am thankful I live in California, which is one of the best states in the USA in that respect.

My husband is extraordinarily understanding, and married me knowing I take large quantities of Morphine, Methadone and Soma to control my pain. (I get more than 70% pain relief most of the time, btw, but I have the best pain doc in the country.) Sometimes I have bad days or bad weeks even-- my worst fear is vomiting uncontrollably due to illness because I absolutely must keep my meds down. So I keep Compazine suppositories or sublingual Zofran around (which are anti-emetic meds, which means anti-nausea meds). I usually function relatively well, but of course I cannot do what I used to do (work full-time at a six figure VP level job), or what I wish I could do. I work part-time from home, which offers me as much flexibility I need (I can get up, walk around, stretch, lie down, nap, stay in bed if necessary, take a break, etc....)

First and foremost, you and your spouse (both of you) should learn as much as possible about your type of chronic pain-- do the research-- whatever your pain is due to, you can learn about the cause. Knowledge is power. Of course you will have to rule out any illnesses that can be cured. But only tests, research, time, trying different medications, etc., will help you find this out.

Second, it's imperative to find a good pain doctor-- if your pain is intractable (severe and incurable), the "pain management centers" are basically useless in my opinion, as many simply just try to get you to "manage" living with your pain forever. That's not only cruel, it's damaging to your organs, as the above article explains. Do the research and find a compassionate doctor that truly understands you are in pain, and that you will need pain medication for the rest of your life. Yes, the rest of your life. It's called "palliative care." They need to understand that possibly being dependent on opiates (narcotics) is far better than being in excruiciating pain. [Did you know that the word "excruciating" comes from the Latin root word crucifix, the worst known kind of torture of the time during the Roman Empire? If you have intractable pain, you understand why!] Both spouses should go to all doctors together to validate your pain, diagnosis, daily habits, etc.

Then, once you're on a regular schedule, and your medications have been titrated up to the lowest possible amound that relieves your pain (it's different for everyone), you must start working on your marriage-- counseling may be the way to go. I wish I could say you should start asap, but from my own experience, I know that back when my horrific pain was still unrelieved, I barely cared about my own life let alone anyone else. (Speaking of which, chronic pain patients may consider asking their docs about anti-depressants or getting counseling themselves, as it's very mentally draining to be in pain.) If you cannot afford counseling, note that many community centers or churches, temples, etc., offer free counseling.

I asked my husband if he personally had any tips for those dealing with a spouse who has chronic pain, and his number one point was that everyone is different. Everyone has different personalities and make-ups, and he just happens to have the disposition of being able to deal with my "off" days. Sadly, many people simply cannot deal with their spouse's chronic pain, no matter what research, pain relief, or counseling they get. Unless they are highly motivated, or motivated by God, people don't usually change, and sadly, many pain patients lose their spouses. When something other than my pain (for which I do have medication, thankfully, unlike others), and I have to go to the ER, for instance, he is able to calmly act as my advocate. I appreciate this ability in him so much, because ER staff are often not very compassionate and I often cannot do it for myself when I'm in a bad place. So having my spouse act as my advocate is very important to me and extremely helpful.

My husband also says he knows the keep his antennae up to keep in tune with moods. When my pain is very very bad, I confess that I can get very irritable, even with him, my greatest advocate. He says he pays attention so that when I hurt badly, he makes sure not to ask me to feed the dog or fold his socks, etc. We do not have children, so we can't answer to that situation-- that would surely add another stressor. But as far as between just us two, he is very attentive to where I am, pain-wise and emotionally.

My husband has also learned to find alternative outlets for the things he likes to do that I just can't do as often as he'd like. We both love movies, and I can almost always watch them at home with him. I can go to about every other movie at the theaters with him. But we've made a good compromise-- I am easily startled by horror movies (which he loves), so he goes to those with his best female friend that he's known since 7th grade (we're both 42), who also likes them. He also knows I won't be able to go to every single family event of his (he has a large family that lives close by who gets together constantly), and he understands that, and they know I'm in chronic pain. He also loves to eat out, and would like to do so every day, a schedule which is simply impossible for me to keep up with. So he just goes out with his buddies when I cannot. The thing that makes this easier is that I don't have a problem with him going out without me. I trust him implicitly, and he doesn't put himself in compromising situations. Also, I know all his friends (male and female) well. As far as physical relations go, I cannot participate as frequently as he would like (or as I would like), but he knows that I never decline unless I really must, due to pain.

He also says he looks for ways to serve me, to be kind to me-- and that he doesn't "keep score." This gets back to the fact that everyone's personality or make-up is different. He happens to be a very compassionate, kind, and understanding person. For example, we were both married before for a short time in our early twenties, and neither one of our previous spouses would be able to tolerate a spouse with chronic pain. For instance, I had a bad day yesterday (nausea and pain), and my husband went to the grocery store for me. But that's the tip of the iceberg. He has gone out of his way for me so many times I can't begin to list the ways. But, at the same time, he also says that he doesn't feel that it's just him giving to me. He knows that I give to him and do things for him whenever I can. If he were the kind of man or even person, who thought, "OK, I did this, now you must do something for me," we'd probably have some trouble. It's often him giving for a while, and then me giving for a while, etc. Sometimes it's mutual, but not necessarily.

That's about all I can think of... hope this helps. Oh, if you do have Fibromyalgia and Chronic Myofascial Pain, or even just FMS, I strongly suggest getting Devin Starlanyl, MD's books at: ***edited by moderator*** web addresses not allowed. There are also many online articles about the use of opiates (narcotics) for chronic non-malignant pain.

thank you so much for that. My partner and I are in a relatively new relationship and he suffers from severe chronic pain due to sarcoma in his leg witch he has had his whole life. He takes methadone for pain management as well works long hard days as a chef. Depression begets him and I am just learning his cycles. It is not easy for me. But I love this man and want nothing more than to be there for him. He has had several failed relationships due to his pain. He tends to withdraw witch I find difficult I want to be apart of what he has to go through so that I can support him. Your response was very informative and made me feel hopeful that maybe with time he can accept me as his advocate and supporter.

My wife has chronic pain all the time. We have been married for 12 years and I feel like I am becoming less and less caring towards her. I feel aweful for her, I just feel like I say and do the same things for her and that it doesn't help her out. I don't want to sound like I'm being fake. I am genuinely concerned, but I fear that she thinks that our relationship is going down hill. She thinks that I will leave her for another woman that is more attractive and active. I know in myself that I will not do that and I assure her of that everytime she brings it up. Intimacy has gone almost completely away because of the pain. I am uncomfortable with intimacy as much as she is. But I have a strong desire for it. What can I do to make myself want to help her more? I really want to help, but I feel like I'm failing her because of my incensitiveness.

What responsibility does the chronically ill spouse have? Perhaps to make the most of each day, to not dwell on their own problems or pains, to make themselves emotionally available to their spouses (at least once a week), and to try and live “outside” the pain as much as possible. I think it is the chronically ill spouse who gives up the fight, who loses hope, who brings misery into each day, that is the cause for the divorce. When people give up, you can’t live their lives for them. Self-pity is one of the most destructive forces around - I don’t blame spouses who leave after hearing, day-after-day, self-pitying remarks from their signifcant other. Life is too short to spend with people who have given up on it - that’s the truth. We’re not saints, we’re human beings

My husband of 15 years developed chronic pelvic pain about 2 years ago. He now can not work and is in constant pain. He can not sleep through the night and is constantly irritable and angry with me. I am doing all of the work outside the home, housework, childcare, cooking, cleaning, etc and he still thinks that I am not doing enougth to take care of him. I try to be upbeat and offer constant encouragement, but he is withdrawn and angry all of the time. We have four small children. This is such a difficult situation, it is like being a single parent, but being married. I have never felt so alone in all of my life.

I am terrified of the pain my partner endures. Absolutely terrified.

The man I love is in chronic pain and it has worsened acutely recently, to debilitating levels.

I have no prior experience of this - I mean I've not been with someone who faces this. I'm finding it hard to cope and the worst thing is that there is 'nothing' I can do.

I've come looking for forums at which the spouses / partners of people enduring CP go. Because I really need to talk through it. There is no-one else I know to talk to. And it makes him sad / stressed to think that I am affected by it, which adds to his suffering.

I feel like a 'bad person' when I can't make it better or when taking certain actions to be with me comes at such a high cost for him. And when I'm sad or have needs and he's in CP and can't be there, and then he is anyway....guilt, shame. My problems can't even compare to what it must be like to be tortured.

Also I've always feared something happening to those I love, in the past. Now I'm with someone to whom something has and is happening, that is very, very bad. Awful, and frightening and sad. He seems to cope better that I do. I just don't "accept" that he has to suffer this.

Sorry to go on like this....

When we talk, and he's in pain, I don't know what is okay to say or not. I don't know where to Be.

I want my eyes opened as much as possible.

How do you cope, or how did you come to? Is it normal to feel this way, not deal with it better?!

I'm new to this.

Thanks in advance for any thoughts.

My husband has been disabled due to a back injury for three years now. He is in constant pain and the meds help some but not very much. He avoids taking them unless the pain is intollerable as he worries about their addictive nature. Yes. he is moody a lot of the time and it is difficult to live with however he has been a wonderful husband to me for many, many years and I just pray for patience when he is in a mood. The hardest thing for me is watching him suffer. It is hard to watch someone you love suffer. if you pray God will help you.

Today I decided to search on-line for support in assisting a spouse with chronic pain (and keeping my sanity). This appears to be a good site, so I'll see...

I, too, am learning how to best help my husband, of 35 years, who is now in chronic pain from diabetic neuropathy. It came upon him suddenly and was missed by the doctors for months. Finally we have a diagnosis, but his pain and disability are extreme. Our life has changed, forever it appears. I have good support from friends in the area, but we have no family locally - other than our grown sons. Next week I go back to work and I'm concerned about how I will be able to keep up his care, diet, house, doctor appointments, and my job. But, after this summer - and thank God I did have the summer off to do what needed to be done - I do know that I will do what's needed. I continue to pray for strength and my good health. We are waiting to hear if he will be seen by the Mayo Clinic in MN: we hear they are the best in neurological matter.

The very best thing I did when our nightmare began was to keep records of everything (pain meds, dr. appointments, health diary, copies of dr. reports, etc.). This has been invaluable (4 doctors --g.p./diabetes counciling center/orthopedic/neurologist) especially when they do not agree. And, it is proving valuable when now we are trying to get into the Mayo Clinic and beginning disability paperwork with Social Security.
Montana

Hi Mistral,
I saw your post from last year. It's been months since you posted, but I still felt that I wanted to respond when I read it.

Believe it or not, but even though your loved one has chronic pain, the things you feel are still real and valid. His feelings and your feelings both exist. Yes, his pain is great, but it does not mean that everything is "ok" for you. It is possible for him to ask for emotional support because he is discomfort at the same time that it is possible for you to ask for emotional support because you have strong feelings too. One does not cancel the other out. They are both there. They are both real. By talking about these things, you can support each other. Not talking about your feelings because they are "less important" is not a good choice. Communication is one of the most fundamental parts of a relationship. It's ok for him to ask for a hug when he's hurting, and it's ok for you to ask for a hug when you're worried. Keep talking and keep loving.

I have been living with my wife for 18 years and she has been in pain for the majority of our marriage. She has been diagnosed with fibromyalgia and chronic myofacial pain. In addition she is being treated for severe depression. She has had every form of treatment imaginable but nothing has helped. She sees a pain management specialist whom she has been going to for 7 years. He treats her using very strong narcotics buy she has developed a tolerance for them. She has bad EXTRA treatment for depression but the price you pay results in memory loss. As a spouse I have willingly accepted additional responsibilities, cooking, cleaning, grocery shopping etc and I don't mind this. My most difficult task is having to listen to her be so negative every day. We have 3 children ages 16 , 13 a d 11 and I know it is difficult for them also. I try my best to remain positive but the pain Sears on me as much as her. After 18 years and I find myself wanting to throw in the Rosella and give up. Her family says they are wanting to help but I believe they don't know what to do and they have difficulty listening to her constant complaining. Sometimes I have just want to have a n adult conversation with a woman that doesn't focus on how bad their day was and how bad they feel. I wish I could just have the woman back that I had before this all happened.