I suggest you and your hubby read a book titled, "Fibromyalgia for Dummies". It's full of useful info and advice about how to deal with fibro. There is even a chapter for loved ones to read so they can better understand what sufferers are dealing with.

sent you a message, hon...
hugs

I think it mainly comes down to effective communication and love.
Encourage your husband to do what he can. It's still important for him to be pro active as he can with this condition. And talk with him, ask him questions. You are his wife. You ought to be able to communicate. If he doesn't talk as often men aren't the best at revealing feelings and wants. Then that is a communication issue.

If your husband wants your help he ought to be able to ask for it or agree to it if you offer.
And even ask him if he wants to be left alone.
And if they say yes then don't take it personally. Don't push or judge and be patient and just love and accept.

I actually agree with the creating a support group for caregivers.
It's a conflict of interest being in a group with people who suffer with the disease or whatever it is but don't have the disease or health issue themselves. It's like you are adding salt to our wounds. This is just my opinion.

If you have a loved one suffering with an illness then you have to figure out communication between you and that person. Why ask someone else what to do or how to be with the person you are with?

What works for one person may not work for another.
It's like the "Five Love languages" . Anyone read that book?
Some people like to receive gifts, some don't.
Some like hugs and being touched and some don't.
Some people like chores and jobs done for them, some don't.

Ask your husband, wife, daughter, son.
Sit down and really talk with them and listen.

You guys who are caregivers have got to figure it out with your loved one and join other caregivers to exchange tips and ideas and share your "burden"

Your "burden" as a caregiver for some one with the disease is different to our "burden" as a sufferer with the disease.

Thank you so much for the supportive messages. I really appreciate it. Very few people I know actually understand our situation. And yes, I was just trying to vent about this one part of our lives. I wasn't complaining about him or saying my suffering is worse than anyone else's.

I guess I will use the caregivers board in the future (although it doesn't seem to be as active of a board, and a lot if people there are taking care of elderly parents so we can't relate as directly to each other). And maybe I will just participate on this board when I have questions about fibro or want to offer my support to you. I can see what you're saying about adding salt to wounds.

HE doesn't know how to deal with the loneliness either. It's not going to change, so you have to learn to adapt, find new ways to spend time together.

Great advice fibrolady.

Be grateful you have love in your life. Some of us with fibro have nobody.....it is a very lonely place to be.

I was so impressed Ashley had some empathy for her husband! My husband acts like there isnt anything really wrong with me I'm just lazy... Even though when I was younger I always worked two sometimes three or four jobs at a time all the sudden now I'm lazy! So I say kudos that Ash recognizes he has a real problem, I wish my husband did.

Oh, Ashley, my heart goes out to you, just as it goes out to my husband. I have had even more pain recently with what I'm told is nerve damage. I've seen how it's affecting my husband. I see the hurt in his eyes, as he tells me he wants his wife back, and knowing that he would do anything to make it better.

What helps me the most is just to know that I have his unconditional love. I've even told him on several occasions he's free to leave if he just can't handle this kind of life. He told me that isn't even an option.
His kindness and asking me if I need anything mean so much to me. Most of all just knowing he loves me and he's here for me and will stick by me is what I seem to need the most.

Maybe have a heart to heart talk with him and tell him how much you love him and that you want to help in any way you can. I know this is very hard on you. We've lost the person we used to be, which obviously means our spouses have lost that person as well. It's hard for both. Your husband is very blessed that you care so much for him.

I hope you'll come here as often as you want to for advice and to vent.

I'm not sure how to respond to this topic. I can hardly do my job these days. I've been to so many doctors and told so many different things. I also have other chronic health issues. I live alone so I have nobody to cook for me or take care of me. It's horrible.

I've also been a caregiver to two terminally ill people and two others. Now I could no longer do this and have a hard time just managing my own life.

If you have your health, you should rejoice and do whatever it takes to make life easier for your husband. My husband had no sympathy for any of my conditions, including a heart condition, fibro, and clinical depression. He thought I could "will" myself better.

I would give anything to have even 50% of my health back.

My only suggestion is find a support group for caregivers.

Ashley, I am so sorry for you and your family. I have suffered from fibromyalgia for several years now. For the first few years I was a working mother of three and a wife. My husband was a work-a-holic and I did everything for my children. Seven years ago I became very ill and had to quit my job and couldn't get out of bed because of the fibro. After A few years and a very upset and angry husband I went to the Mayo Clinic at Scottsdale AZ. After my husband heard the specialist and all the things he said that I was going through my husband became so understanding it just made the whole difference in the world. The more knowledge you gain the better you will understand. The difficulty with Fibro is we look fine but deep down we are struggling. I am constantly tired and when I do happen to have energy I over do it then I come down with something and become extremely fatigued. I feel for my husband and daughter as we can't always follow thru with family plans together. My husband will still take my daughter while I stay home and sleep. I honestly understand how frustrating it is from both sides. I feel extremely guilty that I cannot do for my daughter as I did for my sons. Due to fertility issues my daughter is 10/11 years younger than her brothers. Her brothers have been out of the home for four years. We had always been very adventuras prior to my illness and the increased fibro symptoms in 07, we hiked, camped, biked, water skiied, snowmobiled, dirt biked, etc. Now I am barely able to keep up with my daughter's daily schedule if not at all. I don't go to many of her volleyball or basketball games as I am to fatigued or afraid I will get sick. My husband cut his work hours and has to do all the running around when it comes to her. He also prepares meals on weekends and freezes them so days I am to fatigued to cook he can pull it out of the freezer and warm it up. Believe me I feel so guilty that there are days I can't get out of bed. The days I feel good I save all my energy for my family. The best thing you can do is support your husband and the best he can do is communicate like others have suggested and do the best he can to be there for your family when he has a good day. Good luck and God Bless!!

Thank you so much everyone for the kind messages.
I know my husbands suffering is beyond what I will probably ever understand, but I am trying. And even through I don't feel the symptoms, my life has changed completely too, and this has been the hardest thing I have ever been through. Most of the time I can be strong for him and my children, but I have my moments. I'm glad to know I can find support and understanding in some of you, and again I am very sorry to anyone I may have offended.

Who says I have love in my life? Just because I'm married doesn't mean that I do ...IG that comment was meant for me, I begin :(

rio82 I'm not sure why, over a month later, you've returned to this thread to assume a post made before yours was somehow meant for you.

It was clearly meant for the IP.

I am so confused.

rio,

What are you talking about? Can you explain your post?