Living with Someone with Fibro

Discussion in 'Fibromyalgia Main Forum' started by Scamp479, Jun 3, 2010.

  1. Scamp479

    Scamp479 New Member

    My wife has been diagnosed with Fibro 3 years ago. Its hard.We thankfully were approved for disability for her. Covers her meds, but every Dr just wanted to throw more scrips at us. Now I have been laid off. $ is tight as I'm sure it is with everyone. So we are trying to cut back. She was feeling great and then we got into a head on collision, now were back to square one. Not just with the pain, but with the arguing as well. Nothing I ever say is right. We have a couple of great (no arguing) days a month. Weather, her period, my own stupidity add them all up and its a messy stew. Shes 30 and I'm a healty 38. I never get sick and its starting to piss me off. Why did this happen to her? Guys as a rule are'nt great communicators, but I try. We were so thankfull to have been approved for Disability, but now with layoffs shes stressing $ and wishes she could work. Feels guilty she doesnt help more. I try to tell her its ok. We'll be ok. She feels sorry for herself, starts the day out beating herself up about why her. i try to tell her instead of putting yourself into depression first thing in the am feel happy for the good things. You cant start out beating yourself up. your fibros gonna o that soon enough. Yeah your hurting, be happy we got disability, and unemployment, that we lived throught the accident. She tells me I dont understand. i will never understand her pain. i know after the crash I was a bear with a sprained back, so I know that being in pain makes people goruchy, and I cant imagine4 living with it every day. But damn, try to stop Fing yelling at me all the time. Or if i dont ask her constantly if shes ok or where she hurts them i am ignoring her. She says you never sak me if i'm ok or how I'm doing. I reply it's because you tell me all the time your hurting, your back hurts, or how bacd your hips are. I dont have to ask because you keep me up to date. then she says well i'll just stop complaning then. Forget sex. I dont ask enough, or I dont love her because I dont ask, so I say I dont ask if your telling me all day about how bad you hurt, and how your hps or ribs are killing you. then thats my fault because i dont ask either. So I ask, every day and night near bedtime, no,no ,no no , im hurtiing to bad, not tonight, no, too much pain, so after a copuple of weeks I stop asking and figure she will say something when she feels ok. Vicious circle. Husbans any Ideas, comments greatly appreciated. Ladies please feel free to help me out, give suggestions.
  2. TigerLilea

    TigerLilea Active Member

    Does your wife belong to any FM groups where she is meeting with people living with FM? Sometimes it helps to talk to other people who truly understand what it is like to live with the same illness. Perhaps if she could vent with them, then she wouldn't take out her frustration on you. If she doesn't want to physically go out to meet people, there are several good internet groups such as this one,,, etc.

    Or another possibility is counselling where she can learn coping techniques for people living with chronic pain.

    One thing I have learned having to live with CFS is that feeling sorry for myself is very self-defeating and isn't worth it. Not only do I make everyone else around me miserable, but I also make myself miserable. It just wasn't worth it.

    Good luck.
  3. kat211

    kat211 New Member

    did your wife have a thorough exam? Did her behavior/mood change after the crash? If so she may have a concusion or a closed head injury which will make her moods, along with other things, worse. It is worth getting checked out.

    Don't ask yourself why this had to happen to her, and you too. That will do nothing but make things worse.

    Your wife sounds depressed, which is understandable given her situation. Please Please make sure she sees a specialist to get her depression under control. She may have to try different meds or treatments, but it will be worth it in the long run.

    I wish you all the best trying to get through this. My heart goes out to both of you. I know it can't be easy to deal with.
  4. Janalynn

    Janalynn New Member

    You're the often "forgotten" one in this illness - the spouse, caregiver, significant other.
    I definitely want to write you a meaningful reply but I don't have the words in my head right now to do so - so I promise to do so tomorrow.
    I just wanted to know that I've read your post and your role in your wife's life is SO incredibly valuable and important even though you probably don't feel like it sometimes. You probably feel like you just can't win. But do NOT take it personally and do NOT let it effect your self esteem or self worth. Believe me, your wife hates what this is doing to her and to you.

    Until I write again..........
    hang in there!

  5. rickj44

    rickj44 Member

    You are in a difficult position, I am a male with Fibromyalgia , and it changed my life completely.
    I agree with others a good support group may help you wife, to atleast understand she is not alone in this fight. It would be good for you to attend also for support.
    The reason your wife is being the way she is, is because this illness is in her face, 24/7.. and she is in the stage of blaming herself an asking why me, and so on and so on.
    I went through this also, but there come's a time when you need to accept who you are ( very difficult ) because what is going through her mind now, there is no answers.. just a vicious cycle, over and over again.

    She needs to stop this cycle and work on getting proper sleep. I use a heating pad at night too help me with the rib pain.
    Keep dates and records of everything you try and make sure you give it a exceptable time period.
    I have had good results with cymbalta.. mood and sleeping.

    I have had this for 15 yrs and i don't know where i would be with support from my wife.

    [This Message was Edited on 06/16/2010]
  6. gapsych

    gapsych New Member

  7. Scamp479

    Scamp479 New Member

    I have been trying to work counselling or a group into our discussions. Its hard. She absolutly refuses to take and anti D and I see her logic, but... I thank you for taking the time to respond.
  8. Scamp479

    Scamp479 New Member

    Yes we went to th ER (twice) after the crash. Dumbass Arkansas DRs called me the next morning and said my wife may have a fractured pelvis, " can you bring her in or do you want us to send a ambulance". YEah right asshols why dont you just send the chopper and put that on my bill as well. UHHG sorrry frustrated, Thank you for taking the time to respond.
  9. Scamp479

    Scamp479 New Member

    The list of tried and taking is soooo long. some Drs just wann drup her up. One gave us Morphine and Oxy, and fentanyl patches! WTF/ like 2 weeks later I'm up watching the news and i see the recall add/ lawyer 'has someone died we can profit' add. i rolled her over and pullled it off nearly before waking her. If $ was no object we would be on Lyrica still (i think) we had to stopp because it was nearly half of her scrip costs. I'm still unemployed and she gets some for disability, but $600 a month is way too much for us. I'll have to review and see if we have taken it. One prob is she absolutly refuses to take Anti D's.I follwo her logic there, but... One Dr had her so doped up she was incontinate for a week, falling asleep in her dinner etc... That was a fun time... I have actually sent "Fibro for dummys" to her past drs. Oh and now shes been labled as DR Shopping, by a nurse. We are in the process of complaining to the nurses board. I guess if you go to a Dr and hes not helping you and you want someone that will listen , well thats Dr shopping. Uuhhgg Sooo frustrated. Thank you for taking the time to reply to my mesg...
  10. Scamp479

    Scamp479 New Member

    Thank you so much Rick, I wasnt aware of the way another male would see my plight. Esp you being the sick one. I have heard good things about Cym and cant remember if we have tried that route yet. If its a andt D then its nearly hoplees b/c she refuses to take them. I get her logic a little bit there, but not 100%. I want us to go to a support group and am trying to get her onboard. Slow going. On prob is Im still Unemployed and she is on disability (thank god for that) so we had to really cut back on the most expensive drugs. Some of which wont be covered by her ins. She is on state supplimented, b/c i'm out of work and even thats a joke. After she pays her ins and meds and Dr visit we just have the unemp. Forget any other DR visits that may pop up. Thank you for taking the time to reply to me. Greatly appreciated. Get well..
  11. rickj44

    rickj44 Member

    I was on Lyric, and it caused me more pain.., so i tried it again, a year later and got up to 150mgs but had too stop.. man was i hurting..Getting no sleep at all.

    I can see her concern about taking an Anti-Depressant, but they have found that they actually help with nerve pain.I am not taking Cymbalta because i am depressed... I was never depressed, just very very frustrated as hell, with Drs and the health care..

    Your wife needs too be open to try different things including anti-depressants, becuase there may be just that one thing that may help her..

    I am a perfect example. i have had Fibro 15 yrs and i can't even begin too count the drugs i have tried over the years.
    I was on Oxycontin, and also percocetts,, they help a bit but not as much as they should.., and u have to watch you don't get addicted and keep having to increase the dosage.

    There is only so much you can do, there will come a time where your wife will need too help herself.. very frustrating illness too have.. no easy at all.. so much baggage comes with Fibro.. At the beginning , i ended up in the hospital, feeling so hopeless.. and so much pain..and flue like weakness.

    I am much different now, and i think positive..not negative.. negative feeling's make the pain worse for me.
    I have been on Cymbalta now for 8 weeks and my wife told me today " welcome back. She says i am like my old self now.
    I am still in pain and have weakness, but my pain at times is better i feel better mentally

    Hang in there.
  12. lvjesus

    lvjesus Member

    Sleep is a must. The better I sleep the better I feel. But I didn't really reply to give advice just to applaud you for your support. It is very difficult to deal with fibro at all and if you read here you will see over and over partners who leave because of the illness. To me that is not love. Someone who loves you would not desert you because of illness. I would never leave my husband because he was ill and he would not leave me, I know, even if I do become disabled.

    Having said that, it is very difficult to deal with losing your ability to function and is probably contributing to her mood and frustration. Even on days when I am completely exhausted I only feel worse if I do not get up and move around some and do something productive. So periodically, even if only once or twice during the day, I get up and DO something, fold clothes, unload the dishwasher, or just straighten up something. Don't misunderstand me, I do a little bit and then I am back down, but it helps my frame of mind.

    From what I know about this DD many, if not most of us, were in our "normal life" go-getters, contantly doing something and going, going, going. To someone who is used to going full speed ahead, it is hard to go from 60 to zero in 60 seconds! Maybe trying to find something your wife can do to feel productive and not like a burden will help.
  13. rickj44

    rickj44 Member

    Thats a good point, "lvjesus" because when i first got this, i was still working, and very busy, and as each year went by it got harder and harder, I lasted 5 years. after i left, i felt useless, and a failure, and that i let the company down, i worked 26 years for.
    It took me a few years, but was able too do a few things around the house too make me feel like i accomplished something..It does help you mentally..People need too be needed.
  14. gapsych

    gapsych New Member

  15. RENA0909

    RENA0909 New Member

    My heart goes out to you trying your best to live with a wife who suffers from this horrendous illness.

    I was exactly the same with my hubby for a long time and would not take A/Ds or any kind of drugs.I had an op got fibro and was bedbound for nearly 2 years and my hubby went through hell!
    I was like your wife...always on at him and he could do no right in my eyes.

    I only went on the A/Ds when a fibro friend explained that they are not for depression (I used to scream...I AM NOT DEPRESSED I AM ILL) but they help to keep the pain LEVEL instead of at the top end of pain.
    Was I glad I took her advice.I have been sooooo much better and am just on a low dose to keep me sane lol.
    Not many painkillers work for fibromites and so I prefer those wheat filled bags that go in the micowave for pain.Comfotable warm clothes that dont scratch/itch.Rest a what you can when you can.I was quite OCD before and it killed me having to let my home get dusty /untidy/not 100%spotless but I have to accept it.

    I feel sorry for you also having to struggle financially.I live in the UK and over here all doctors appointments are can visit evry day if you wanted!If you are unemployed all your health care needs are free!You get dentist free also and any hospital appointments and visits cost nothing.I pay cos my hubby works but I also pay yearly so I get a big discount on meds cost.DO YOU HAVE TO PAY FOR AN AMBULANCE??????????I hope not!

    I think she would benifit from this site where she can chat to people who have the same illness and everyday problems and maybe get some tips on how to cope with this.
    My hubby has accepted me now I still drive him nuts but we cope.My help comes from this site cos in UK no-one had heard of fibro....even now people still say.... what is it? And friends and family think If I look ok I must be ok so I gave up trying to explain it.

    Please stay strong and tell your wife how much you love her and will always be there for her.

    My hubby used to say that I went on about my pain so much that when he had to have a pace-maker fitted he didnt want to tell me in case I said(IS THAT ALL)LOL.

    best wishes

    [This Message was Edited on 06/20/2010]
  16. Jgavi

    Jgavi New Member

    i am a guy with FMS and for 10 years i know this board is the place to go to for the best

    It is great your trying to hang in there but you both need to go the support groups as
    advised above,,,plus you BOTH should go to a professional to talk about the FMS.

    A shrink or a physiologist - many are FREE or low cost that work with the FMS people!
    It is important your wife accepts what she has, it sounds like she doesnt accept
    what she has and that is NUMBER one to get done!
    Depression and feeling worhtless is a sign of her not accepting this pain syndrowm.

    It wont go away and medications help only so much, medications are needed but many
    cause mood swings, you need to switch medications until she finds something that
    works for her.
    Count your blessings she got disabailty pay, many people dont and with that out of the way its time to work on other issues.
    Instead of asking her over and over if she wants to do this and that just make a deal with
    her, "your welcome to come with me anytime, i wont ask you over and over so you wont feel bad saying no". "i wil ltell you what i am doing and you can decide if you want to go or not"
    After you make some agreements WRITE THEM DOWN and place them on
    a board or refrigerator so everyone can read them, she might forget the agreements and this way
    they are posted- and an argument wont start "well you didnt tell me that!"
    Plus you can add to the list.
    Let the whole family in on the list. Sounds odd but it WORKS!
    People hate the word NO and when you hear it to much you get turned off, since she
    says NO all the time she to gets deeper in her dark world.
    I had the problem also from being 100% healthy and very active and doing great in life and than knocked down by this awful FMS>
    After she ACCEPTS what she has and not question why she has it (same with you) things will shake out- you both need to stop questing why this has happened, GOD has nothing to do with it..being a good person has nothing to do with doesnt matter why she is in this
    WORLD OF PAIN, she is and after it is accepted without questions you will see how it will get so much better-
    STAY AWAY FROM PEOPLE WHO ARE NEGATIVE.....and goo dluck! come back and talk to us again, J Gavi
  17. scarletpoppy

    scarletpoppy New Member

    I can understand your frustration and pain and the relationship difficulties.... I have had Chronic Fatigue Syndrome since changed my life, and was the darkest place I have been. I felt very alone in this experience. Often my husband would say "Just take anti-depressants." But I didn't and wouldn't. I don't doubt that depression can become a big part of the problem, even though this may not be the original cause of ME/CFS.

    But drugs do not help, but compound problems, whatever physical or mental problems we may have. Our bodies depend on the right chemistry to function properly and no drug manufacturers, nor any human for that matter, can know exactly what proportions of what chemical the human body needs. Not only do our needs vary from day to day, but even during the day. Not only this, but chemicals interact with each other, and just to take one thing, will more than likely throw other things out of balance.

    The body and the mind cannot be separated. When our body is ailing, the mind sympathizes, and suffers too and vis versa. The brain is an organ, just as any other part of us, and is affected by the same blood/chemistry that flows through the rest of the body. We cannot just "treat" the mind, to numb the pain of the body. The body and mind function as a unit, interactively. So treatment must look at and cater for both aspects. But I wish to add that we actually have a spiritual aspect as well. And to be completely whole this third part of us should be addressed too, though most people either doubt its existence, or choose to ignore it.

    In my extensive search for health, I have found that there are some very simple, but extremely important changes that can be made to improve our health. They work very gradually, but definitely, to change the chemistry of the body. We must work at them the best we can, to the degree we can manage, preferably every day.

    Firstly, we should try to get out into the sunshine every day (taking care of course not to go at the hottest part of the day and get sunburn, but please don't use chemical sunscreens either.) If we may not be able to do any light exercise at the same time (which is our ideal aim), even lying on a towel in the sun would do to begin. (I did this for over a year.) I used to undress, in a private corner, so the sun could bath my entire body. Around half an hour, depends on how long you feel perfectly comfortable. Some days I could only stand 10 minutes (summertime and my body would overheat very quickly and could not tolerate extremes in temperature.) The sun is very soothing and has properties that heal, body and mind.

    Secondly, it is important to try to physically move. Movement aids circulation, which in turn aids the removal of toxins from the body. The lymphatic system works to remove waste from our bodies, but it is dependant upon us exercising to be able to work effectively since it doesn't have it's own pump. Inactivity is one great contributor to disease. No doubt pain restricts, but begin with as little as one can manage...walking on the verandah in the sun and fresh air for a few moments. Just tiny goals to begin with. But the more you do, in time the more you will find you will be able to do. But always take care not to over do things, even if they are good in themselves. Ultimately, walking is the very best exercise all round.

    Learn and practise to breath deeply of outdoor air. Apparently toxins are higher indoors. We need lots of oxygen for many reasons. Among them though it sooths and calms the mind.

    Good sleep is essential. I have found that my ME/CFS is directly related to how I am sleeping. Symptoms are definitely exaserbated when my sleep is disturbed. I could suggest a few things here that I have found helpful if you are interested, but noticed how long this is getting.

    We must do our best to do something productive each day...ideally helping someone else, gets our mind off ourselves and this is very, very healing.

    Learn to eat foods that nourish your body. Don't eat foods that actually deplete your body of nutrients, just so that the body can process and probably eliminate them. There is a lot of information about healthy eating around...but the key is to stick to whole foods prepared in as natural a way as possible. Avoid processed foods. Making your own fresh vege or fruit juices is excellent, especially if your digestive system is suffering as well. If you want to know more about this let me know.

    You must drink plenty of pure water. This bathes the inside of the body, just as it does the outside.

    Finally, I strongly suggest that you contact Dr Neil Nedley, MD. He is in the US. He has written a book "Depression, the Way Out". He understands so much and I believe can help your wife.

    I wish you all the best and hope that things will turn around, even though it usually is a slow road. God be with you, only a being with greater wisdom than we have, can help us.
    [This Message was Edited on 06/21/2010]
    [This Message was Edited on 06/21/2010]
  18. ilovepink4

    ilovepink4 Member

    i wish my husband would chase me around the bedroom. Give your wife a message from me, " you are a lucky woman to have a husband that actually knows something about FM. You are especially lucky that he still is attracted to you and wants to be intimate with you. Be careful or you will end up alone. What is better? To have to adjust to an illness with a loving partner OR to have to adjust to an illness ALL ALONE?"

    good luck scamp....i think your dedication to your marriage is charming. My husband has never read anything on fibromyalgia.....has done zero research....and has zero interest in me sexually.......He does the cooking and shopping, and takes our kids to all their sporting events.....I guess we just can't have it ALL.

  19. gapsych

    gapsych New Member

    If you can't get your wife to go to therapy, have you thought about that option for yourself?

    Your frustration level must be sky high. It takes a lot of energy be able to take care of your wife. You can only do that by taking care of yourself.

    It's amazing how talking to someone one on one or a support group can be so helpful. I find that someone on the board might have an idea, say something and I will think, wow, now why didn't I think of that or I know just how that person is feeling. We pool our resources.

    By coming to this board you are being proactive not only for your wife, for you but also in the long run your marriage.

    No guarantees but certainly a step in a positive direction.

    Hang in there and keep us posted.


    [This Message was Edited on 06/22/2010]
  20. gapsych

    gapsych New Member

    You have some wonderful suggestions for people experiencing the" blues". Unfortunately, if you are clinically depressed it is much more serious and is classified as a very real physical, neurological disorder.

    When you are clinically depressed you find that you are almost paralyzed. Simple things like eating right, drinking plenty of water, might seem easy solutions to us but to the depressed person may seem insurmountable.

    I've been there and I know at that time if I had had the ability to just get out, take a walk, that it would be an indication I was not depressed. In fact,I think the inability to do these things is part of the definition of clinical depression.

    That being said, once I was feeling better through therapy,antidepressants and a lot of hard work, I found the suggestions you mention above very helpful.

    I just posted an article about this very same thing called, "The Ghosts of Pain".

    BTW, I love your name. :>)

    Take care.