Couldn't find what you looking for?

TRY OUR SEARCH!

we are in the same boat so to speak
Reply

Loading...

sharpanne wrote:

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: http://tinyurl.com/5us53p -- (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: http://www.sover.net/~devstar/. There are also many online articles about the use of opiates (narcotics) for chronic non-malignant pain.


3+ years & have been through 4 pain dr's. no 1 wants to listen, so I'm sent home to suffer,I had surgery feb 2009 4 cervical stenosis, 2 fusions later I still was in severe pain, then I was diagnosed with fibromyalgia.Unfortunatly I'm in alabama with medicare with little choice of care, reading your blog helped more than you know.the dr's belittle you,and really don't care.My pain is so bad I'm bed bound and I 'm getting weaker and my body is reacting to the pain.no help in site
Reply

Loading...

olimpia wrote:


Hi, my wife suffers from chronic pain, which lasts over a year. She uses some medicines, but they never relieve the pain completely. I don’t know how to help her. Does anyone else have a spouse with a chromic pain?


Just be there 4 her, and keep fighting to get her proper help 4 her pain. after reading sharppane's discussion My husband & I are going to try to learn all we can,maybe we can get a doctor to listen, I've been thru 4 doctors& they still send me home to suffer. which to me is the most cruel thing and they don't seem to care, I don't get it
Reply

Loading...

I have desperatly tried to get help, I'm feeling beyond alone, and frustrated doesn't even begin to describe how I feel.I responded to your informative blog and e-mailed for more information, I haven't recieved anything back.I was hoping for advice, on how to try to find a doctor in Alabama, who is even willing or informed about intractable pain, instead they keep using me like an experment, & send me home in severe pain with very small amounts of pain meds,help sharppane
Reply

Loading...

johnjay, I can relate to your brief note. I'm in a very similar situation. My wife has the same issues as you describe except with CVID (common variable immune deficiency) and arthritis and who knows what else. I have 2 young children (4 and 6) and juggle many different responsibilities. It sucks. I also wish for relief and have the same desires you have. It's hard. Maybe we can chat later, but I just wanted you to know that you're not alone. Funny thing that I say that, because this morning (which is why I was searching online) I am feeling SO alone. It's different though and I know that. Knowing that someone else shares similar sitations doesn't fill the alone feeling that we have. We married with ideals and assumptions and dreams, which have come crashing down. We have to be loyal and want to be strong, but we feel so weak and want normalcy. Anyway, take care. All my best to you.
Reply

Loading...


hI John. I understand fully what you are going through. I jad just about rreached the end of my tether when I found this website today, and I'm hoping wlll find the answers I'm looking for. I'm 68 yrs old and feel like I'm stuck in purgatory. It's nice to know that what I'm going through is not unique and that I'm not the evil person my wifes pain made me feel that I was because of my frustration. To top it all off, I'm hard of hearng which tends to make communcaton hard on ones' spouse, and ths tends to aggravate the problem even more.
Reply

Loading...


I'm glad I'm not the only one who feels like they want their old life back. I thought I was being selfish. My husband had a failed back surgery 6 1/2 years ago. We have been married 26 years. When this started, I never once thought I wouldn't be able to handle it anymore. Well, I'm there now. I don't know what to do and don't feel like I can fix my feelings on my own, as he refuses counseling. I'm seriously considering asking for a divorce.
Reply

Loading...

Wow...you brought tears to my eyes. Im dealing with the whole back thing with my husband. Hes got herniated discs, bulging disks, slipped disks, degenerated discs. Majority of the time i cry myself to sleep, take a shower just cry so the kids cant see me. I dont know what to do anymore. If i ask a question he snaps, constantly taking meds norco, morphine, cymbalta, blood pressure meds, nerve pain meds and who knows what else. The drs tell him surgery is an if'ie thing because it might not even work. And he finally got approved for disability but they r giving him his retro pay...and one day he tells me hes moving out bought a place (we were renting a place already)and before i knew it hes moving out.
Reply

Loading...


Hi,
My boyfriend has been suffering with chronic pain for over a year now. The worst part is that a doctor hasn't even been able to diagnose it yet, much less offer some advice on how to relieve it in any way. He's in pain every day, all day long, and it's worse at night. He doesn't know exactly what is causing it, and has been to so many doctors that he's lost hope in finding any sort of cure. So, he just gets drunk enough on cheap whiskey every night so he can kill the pain enough to go to sleep, then he gets up the next morning and the cycle repeats itself. It's horrible, I really, really love him, but I don't know how much more I can take! And don't tell me to talk to him about the drinking either, I just tried, it just pisses him off, he says it's the only way he can make the pain go away! I don't know what to do!
It has really effected my life, and I feel selfish because of that. Sometimes I'm really angry he can't just hold me, even though it hurts him to hold me. It hurts him when I hug him to tight, so I'm always trying to be carefull about how I touch him. Needless to say our sex life has really suffered, lately it's been a little better, but I think he's just making a huge effort for me, and I feel guilty about wanting him to have sex with me, and I get angry sometimes because we haven't cuddled or touched for so long because he's in constant a pain, then I feel guilty for being angry, and I feel guilty for feeling lonely. Ugh, this just sucks so much. It causes so much stress, so much distance, so much frustration between us, and nobody understands. He tells me I'm not being compassionate when I mention that I have needs too, and I try every day to be as compassionate as I can with all of this, but it's been over a year now! And nobody understands!
Well, I really needed to vent. If anybody who is standing in my shoes has any advice I'd love to hear it, I'm at my wits end, and I really love this man, and I do not want to leave him.
Reply

Loading...

I'm a 53 yr old permanently disabled man who worked for 27 yrs before becoming fully favorable for Social Security in 2003. I'm from Staten Island, NY, now been living in NE PA with my wife of 20 yrs, and 17 yr old son (who has Aspergers)..I was seeing a Pain mgmt doctor (female) on Staten Island from Nov 1997 to July 2011, and was always compliant with my meds (Methadone tablets, after 13 yrs on them, was at 150mg/day. In 1997, began on 30mg, by 2002 was on around 90mg, by 2007, at the highest dose of 150mg…Then in May 2011, I was lowered to 120mg, then June to 90mg..Then the exit letter was sent to them. Which as it turned out, was a huge mistake, because now I have Pennsylvannia doctors telling me things like, "I went to a medical convention, and the new max dose for Methadone is 60mg/day." I know this isn't true,but didn't want to put his back against the wall, cause nobody else in the Northeast PA, will continue me on the dosage my body needs now after 13 years on it.  I’m on 60 mg now, way too low for my body’s tolerance.  But nobody seems to care, and I don’t know what to do.) I lost her due to miscommunication and inaccurate information that I found out she received and had put into my permanent record AFTER I felt forced to leave her with an exit letter and received my 13 years records neatly on a CD.Plus a hospital alcohol detox which I went to only to save my marraige, and give myself a few days to really think about things. I brought my medication of 150/mg Methadone tabs a day, and the nurses called my NY doctor without my written consent, and told her everything I told them, which I beefed up (about the alcohol), so they'd keep me there (for the greater good)...Whether I can or will pursue that, I'm not sure yet, but I'm in a terrible situation here. I'm feeling pains again I haven't felt in 10 yrs...I gave more than adequte proof of my conditions, and the pharmacy printouts for the past year (at that time -Apr 2011, so apr 2010-apr2011) which clearly shows 150/mg day. Didn't seem to matter one bit to them..What do I do now?. I can't go back tot he old doc in NY, if I stay with this PA doc, I'm in pain, if I try to get an increase, I may lose him, and theres nobody else to go to. Help...

Reply

Loading...

As the one who suffers from intractable pain, my advice (after successfully dealing with the pain as well as possible) is to get help with the depression/anxiety side of this issue. Having dealt with a father who died from cancer and a mother who died from COPD, I had but a mere experience/taste of being on the other side, of bring a caregiver for someone in pain. It is exhausting and depressing to be in pain...but it is a helpless feeling to watch someone else be in pain—a different kind of pain in and of itself. I have a new level of insight, understanding and compassion for my husband and all he goes through, even though I couldn't possibly put myself in his shoes for real. I go out of my way to do things for him whenever I can, and encourage him whenever I can, because spouses understandably leave a mate who doesn't appreciate them, complains constantly, and is always irritable. They could easily find someone who is healthy, but if they are choosing to be with us, we are truly blessed. If this seems impossible, professional help is needed. See a psychiatrist, try anti-depressants (it may help the pain as well)...do whatever it takes. Your spouse is a saint and needs to be appreciated. Yes, there will be times we cannot think of anything but our pain, but we must get past that. Pain relief is key, but so is attitude and compassion. When I find myself circling the drain of self-pity, I have a cry if needed, pray for strength, and remember how grateful I am for him and how much I love him. No, it's not easy, but it's necessary. It may seem trite, but communication is important. If you feel your spouse isn't compassionate (whether you're the one in pain or your spouse is in pain), that's going to be a problem for anybody. Another hint: ask them how they are doing—it's not always about us. There are two people with needs in the marriage. Things can't be lopsided all the time.
Reply

Loading...

I have had peripheral neuropathy and chronic pelvic pain for four years now. If you are waiting for a doctor to help you this is likely to not happen. In four years I have studied diet, nutrition, supplementation, and herbal medicine. I have eliminated 70 percent of my pain (I will confess however to taking neurontin which offers 20 percent relief). For nerve pain the big guns I have found are a product called Natural Care Nerve Fix, Acetyl L Carnitine 3000 mg/day, Agmatine 2000 mg/day, methylcobalamin 5000 mg, cayenne (internal and external), curcumin, cats claw, skullcap, sam-e, st. Johns wort, rosemary. Most doctors know so little about nutrition. If you really want to get a handle on chronic pain then make lifestyle changes, which to me have been much more crucial than the above items. I eat a plant based, organic, mostly raw food diet. I have organic chicken and organic grass fed beef on occasion. I drink fresh hommade juice that I make with my own juicer with produce that is non-gmo ( google GMO which is genetically modified organisms and learn about how these are poisoning your body). If you drink diet sodas or anything with ASPARTAME in it then STOP immediatley. When you eat in this way weight will pour off. I lost 70 pounds and I never exercise. If you truly want healing in your life then you really do have to make lifestyle changes. Finally I take Kratom during flare ups which acts as an opiate in the body but is a tree that grows in adian countries and is NATURAL and legal in most states. I am not a doctor and this is not medical advice, just my opinions and the things that have helped me. If you need medical advice please consult your physician.
Reply

Loading...


I don't believe it is self pity but guilt! I have fibromyalgia, osteoporosis, DDD, arthritis, etc... I don't feel self pity it's GUILT on a daily basis. At that is because I know it has changed me & I can't do the things I use to. Not saying that some do have self pity but the majority is feeling guilty!!
Reply

Loading...

Hi, u are not alone. I am in the same boat only, he's undiagnosed, miserable, and sleepingost if the day. This has been going on for three years now. He was diagnosed bi-polar last year, after what looked like a manic psychotic episode, but I'm thinking something else was at play. He was chronically smoking pot behind my back for years, then did it daily, all which I think influenced the psychosis. He was smoking pot because if the pain. Now he's depressed and I'm following suit. I'veanaged for three years to stay above water, but the last week has been unbarable. He done little to help himself out . He didn't go tot the doctor for this until haut recently. I feel lonely. I feel helpless and now I feel hopeless. I can't afford to take the kids anywhere for holidays. I work full time. I never used to keep count of things but lately I resent him so much and I'm burnt out. I don't know what to do:?(
Reply

Loading...