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Marriage and Fibro, welcome to the roller coaster from hell!

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Posted 11/10/2008 2:18 AM (GMT 0)
How many here are married? For those of you that are, you probably understand that when you have fibro, it is not only a strain on you, but on your spouse as well, and on your relationship.

For those of you who know what I am talking about, and have dealt with it for a while, what do you do? Do any of you feel like the spark has gone from your marriage and left you with routine and mediocrity (sp?)?

This is kind of a personal question, but does it hurt any of you when you are intimate?

I was going to write more, but I am going through really bad fibro fog right now.

Posted 11/10/2008 6:25 AM (GMT 0)
Tiki check out the what about sex? thread on the front page its all about this exact stuff =)
Posted 11/10/2008 5:22 PM (GMT 0)
Tiki I am 58 and my DH is 65 and I was dxd five years ago although it all started about 10 yrs ago. So I'm sure fibro puts a lot more pressure on younger married couples.

 

Communication and education I think is the key to making a marriage work when one half of a couple has a disorder like fibro. MY DH about drove me nuts at first thinking he had to find a way to fix me cause he couldn't accept the fact that I had something that couldn't be fixed. I must say he got on my last nerve many times over it. I was devastated and depressed and I needed comfort and understanding not his off the wall ideas on how to get it fixed.

 

I'm happy to say that he is educated on fibro as much as someone that doesn't have it can be. I think we have both accepted fibro, doesn't mean we either one like it. I'm sure he does miss the old me as much as I do. It has meant a lot more work for him that he never did before but he was pretty spoiled before with all I did. If he does recent anything that I can no longer do he doesn't say anything to me about it.

 

I hope you can talk to each other about what is bothering you and not let it come to a boil before it is discussed.

 

The thread on sex is very good.

 

Good Luck

luv and hugs

Marlee

 

 

Posted 11/10/2008 5:35 PM (GMT 0)
I'm 20 and I live with my boyfriend of 4 years. We've been renting our place together for over a year now. Its been hard.. my boyfriend tries to understand, but this disorder - my sensitivities to the outside world doesn't always make sense to him - he often feels bad for going out without me when I'm not feeling well - but I encourage his independance because it's not his fault that I'm sick and he should be able to go out with our friends... even If I can't make it. He feels bad because people are constantly asking where I am... and he's not comfortable discussing my health issues with them. He also knows that I've been predisposed to being unwell since he knew me.. and so my diagnosis is as much as a relief to him as it is to me.

So I try my best to make this easy on him.. and he inturn tries to do things to make my life better. I think being young has some benifits - we have the ability to continue growing together. I try to keep him as much informed with what is going on with me as possible - to avoid misunderstandings or the development of bitterness between us as a couple. I know I'm young to give advice to somebody who has been married for years... but I'd have to agree with Marlee I find that open communication helps us move forward with our lives together even though things aren't easy... having my bf understand what is going on makes life a lot easier.
Posted 11/10/2008 7:29 PM (GMT 0)
My husband has gotten use to me being in my pj's all day at times. He is very understanding. When I first got diagnosed, he kept saying that he thought I had chronic fatigue. So he was close, though the fatigue is what bothers me the most. He feels that if I could of gotten the medications that I needed at the time, I probably wouldn't have lost my business. So he is really supportive and understanding. I consider myself lucky.

Hugs, Karen
Posted 11/10/2008 7:39 PM (GMT 0)
My husband is understanding to my fibro so that helps put alot.
Posted 11/25/2008 4:41 PM (GMT 0)
My hubbie is understanding. I really lucked out. He knew me before diag.before symptoms, so you can imagine how MUCH our relationship has gone through. he never fails to amaze me though. The nights I cannot sleep and am in horrific pain, he stays up with me and then goes to work the next day. He drives me to the dr when my legs hurt too bad, when I am too tired, or when I am just having a low day. He goes in the dr office with me and demands answers, and action. He spends time reading about this disease and talking to me about it. I guess the only thing that is negative about fibro and our marriage is he will never know what it actually FEELS like. he can read all day about it, but he doesn't understand fully. Of course I wonder at times, "will he ever just get fed up with this and leave me?". That thought is ALWAYS in the back of my mind.
Posted 11/25/2008 4:49 PM (GMT 0)
I understand how you feel. I wrote a post a few days ago talking about how my husband picks up on my flares & chooses that time to fight with me. He does not understand-at all- what I am going through.

I would take him to the dr with me, but he always finds an excuse not to go. He is taking classes to become a surgical tech & he thinks, when he starts clinicals next fall, that I am going to work full time & support our family....I don't think so. I have not worked in almost 9 years (I stopped working when I had my daughter), and I can not even imagine being on my feet for 8 hours shakehead .

Oh my gosh...just shut me up. I am hijacking your post nono

I do understand what you are saying, but unfortunatly I do not have an answer for you.

Posted 11/25/2008 5:05 PM (GMT 0)
Most of the time my husband is very supportive but there are also times when I can see his frustration. He goes online and reads as much as he can. He has read my books,He does understand to a point. I usually am the one that feels guilty because I am not the same person that he married We (cuddled) almost everyday. sometimes 2 times a day. now we are lucky if we cuddle 1 a month.
I have always been a high energy person never able to sit still now Im lucky if I can stand. I keep telling myself to go through the motions but I am a person that needs to give a 100% and it doesnt always work out when you cant. I have read the thread and suggest that you read it more than once.
Lee Ann
Posted 11/25/2008 7:38 PM (GMT 0)
My husband doesn't understand what I'm going through and he doesn't really want to know what I'm going through. He pretends that there is nothing going on with me and wants me to do the same thing. I can't understand how he can see me in pain every day of my life and struggling just to get out of bed, but not GET that I am sick. Instead, he tells me to get out and be active! Get dressed everyday, it will make you feel better! He just wants me to get better, not be sick. I would love to be able to do that. I also would love to be able to have him be more attentive and nurturing. While communication works with many couples, it doesn't work in my case. I try to inform my husband about the disease and the symptoms I have, but he doesn't really want to hear it. He turns OFF his listening devices and doesn't hear a thing I say, even though this is what makes up my present life.
Sorry for the whine... having a really bad day. :0(
Posted 11/25/2008 8:27 PM (GMT 0)
ok can i give you this from a partner's perspective!!!

My Hubby suffers from Fibro and Cluster Headaches, it is one of the hardest things to watch the person you love being in so much pain and know that you can't do anything to help!!

But, you can, you just have to be there for them and know when to help and when to take a step back and leave them to it

I find that with Andy's Fibro, he likes to take care of the house, it's his way of contributing as i am out working all day, and believe me i do offer to help and do try, but he feels that it is his place to do that and the cooking ( i work till 8 most evenings)


As for his Cluster Headaches, there isn't really anything i can do to help him through them, just be there for him get him an ice pack or coffee for after the attack has gone!!

i suppose what i am really trying to say, if you have a good strong relationship and you keep communicating with each other, then there is nothing you can't get through together!!! It's all about being there for each other and working at keeping your relationship on track, it's hard at times, but these hard times can only make you stronger!!!

am not sure if all that came out properly, was trying to put into words how i feel!!!

anyway hope that helps

Sandra xx
Posted 11/26/2008 2:02 AM (GMT 0)
Are we married to the same man? Your story is so much like mine. They just don't care & we have to suffer alone. It's not fair. shakehead

Terrie B said...
My husband doesn't understand what I'm going through and he doesn't really want to know what I'm going through. He pretends that there is nothing going on with me and wants me to do the same thing. I can't understand how he can see me in pain every day of my life and struggling just to get out of bed, but not GET that I am sick. Instead, he tells me to get out and be active! Get dressed everyday, it will make you feel better! He just wants me to get better, not be sick. I would love to be able to do that. I also would love to be able to have him be more attentive and nurturing. While communication works with many couples, it doesn't work in my case. I try to inform my husband about the disease and the symptoms I have, but he doesn't really want to hear it. He turns OFF his listening devices and doesn't hear a thing I say, even though this is what makes up my present life.
Sorry for the whine... having a really bad day. :0(

Posted 11/26/2008 2:16 PM (GMT 0)
I am not married, but have lived with my fiancee' for almost 3 years now, and for the first 2 1/2 yrs I was able to hide my pain, until I had a horrible flare up.  He knew that in my past I have had leg pain and a few other issues, but I learned to cope with these things because the dr's kept telling me that they didn't know what was wrong with me and that I was probably just depressed.  After coping with my sypmtoms for 8 years I had a HORRIBLE flare up again, so bad that I could not cope any longer.  I then found ANOTHER dr that now beleives I have fibromyalgia, and is doing further tests to verify it.  He told me that he will not dx me until after I see the specialist but has started treating me now.  I believe that my family has just given up on the fact that there is something TRUELY wrong with me, I mean after 8 years of no one finding answers they find it hard to believe that now there is an answer.  They make me feel like it is all in my head and that I am just a hypocondriact (sp) That is one of the hardest things to deal with... I am in severe pain and nothing takes that away yet the people closest to me believe that I am making it all up!?!?!  I am fortunate enough to have a man in my life that is trying his best to understand what I am going through, but he too, at times, has a problem understanding it!!!!  I hurt his feeling when I ask him not to touc me, when he is only trying to help... but his touch HURTS!!!!   I feel horrible complaining everyday that I hurt, yet I DO HURT!!!!!  I know your frustrations and I hope that you are able to control your pain!!!!  (((hugs))) yeah
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