Re: How did your spouse react?

[Guest guest]

,

I'm really feeling for ya here. I have bipolar disorder and fibro

as well, along with a few other odds and ends. I also have the

touchy feely, wants to love all over you type of husband.

It was very hard at first. It's very frustrating for spouses to

watch us suffer, and to know they can't make it go away, no matter

how much they want to! In a way, you're literally going to have

to " reprogram " your husband. Explain to him that he can still hug

you, but just not so intensely. And if he wants to touch, a massage

would be a nice, soothing way. My husband will use muscle rub

as " massage oil " on the really bad days. Another way to do it is to

lead by example. A light stroke down the arm, back, wherever you

want, a kiss, a gentle hug. Let him know that affection doesn't

have to be shown by a crushing bear hug! Love notes are fun too!

My hubby didn't take it too hard when I was diagnosed....I was

already in pain for quite a while from the adverse drug reaction

that caused the Fibro in the first place, and from shoulder surgery,

so pain had become the " norm " . He felt bad for me though, that it

was going to end up being a permanent part of my life. Since yours

sounds like a really loving and caring guy, I'm sure he'll learn to

adapt to the changes, with a little time. Good luck to you!

Jen

[Guest guest]

One thing my hubby does to show his affection and to help me sleep is stroke me.

He just lays beside me and gently strokes me. Gentle touching is also a sign of

affection and I have found that it helps with relaxation which helps with pain

and all. I agree that initiating touching will help him get the idea of what is

too much for you. It just takes some adaptation. You are lucky in that he is

willing to adapt.

<><><><><>

How did your spouse react?

...

But my husband is a very supportive, loving and " touchy-feely " kind of

person. He is also a Mr. Fix-It. So he is having double trouble with this

diagnosis. #1 - He can't fix it. He can't make it go away, he can't stop

the pain, he can't cure it. He is worse with this than he was with my

bi-polar diagnosis. #2 He is ver affectionate and want to hug and sqeeze

and cuddle all the time. I try not to let on that it hurts sometime, but to

does. And when he notices he feels so bad. And now that he knows it hurts,

he is afraid to touch me. He is very down because he says this disease has

taken me away from him. It hasn't, of course. We just have to modify the

intensity of our affection (he is a very big, strong man).

...

[Guest guest]

Hi ,

I like the idea of gentle stroking. It does sound relaxing. I am sure we

both would enjoy that.

Thank you so much.

> Re: How did your spouse react?

>

>

> One thing my hubby does to show his affection and to help me

> sleep is stroke me. He just lays beside me and gently strokes

> me. Gentle touching is also a sign of affection and I have found

> that it helps with relaxation which helps with pain and all. I

> agree that initiating touching will help him get the idea of what

> is too much for you. It just takes some adaptation. You are

> lucky in that he is willing to adapt.

>

>

> <><><><><>

> How did your spouse react?

> ...

>

> But my husband is a very supportive, loving and " touchy-feely " kind of

> person. He is also a Mr. Fix-It. So he is having double

> trouble with this

> diagnosis. #1 - He can't fix it. He can't make it go away, he

> can't stop

> the pain, he can't cure it. He is worse with this than he was with my

> bi-polar diagnosis. #2 He is ver affectionate and want to hug

> and sqeeze

> and cuddle all the time. I try not to let on that it hurts

> sometime, but to

> does. And when he notices he feels so bad. And now that he

> knows it hurts,

> he is afraid to touch me. He is very down because he says this

> disease has

> taken me away from him. It hasn't, of course. We just have to

> modify the

> intensity of our affection (he is a very big, strong man).

>

> ...

>

>

[Guest guest]

Hi ,

I like the idea of gentle stroking. It does sound relaxing. I am sure we

both would enjoy that.

Thank you so much.

> Re: How did your spouse react?

>

>

> One thing my hubby does to show his affection and to help me

> sleep is stroke me. He just lays beside me and gently strokes

> me. Gentle touching is also a sign of affection and I have found

> that it helps with relaxation which helps with pain and all. I

> agree that initiating touching will help him get the idea of what

> is too much for you. It just takes some adaptation. You are

> lucky in that he is willing to adapt.

>

>

> <><><><><>

> How did your spouse react?

> ...

>

> But my husband is a very supportive, loving and " touchy-feely " kind of

> person. He is also a Mr. Fix-It. So he is having double

> trouble with this

> diagnosis. #1 - He can't fix it. He can't make it go away, he

> can't stop

> the pain, he can't cure it. He is worse with this than he was with my

> bi-polar diagnosis. #2 He is ver affectionate and want to hug

> and sqeeze

> and cuddle all the time. I try not to let on that it hurts

> sometime, but to

> does. And when he notices he feels so bad. And now that he

> knows it hurts,

> he is afraid to touch me. He is very down because he says this

> disease has

> taken me away from him. It hasn't, of course. We just have to

> modify the

> intensity of our affection (he is a very big, strong man).

>

> ...

>

>

[Guest guest]

Thanks, Jen.

I have a few of those other odds and ends, too. I understand.

I also had severe pain from other things before the Fibro came along, so

hubby was used to seeing me suffer. I think that is one reason why he took

this so hard. He is tired of me suffering.

Thanks for all of the suggestions. I will put them to work. :-)

Love,

> Re: How did your spouse react?

>

>

> ,

>

> I'm really feeling for ya here. I have bipolar disorder and fibro

> as well, along with a few other odds and ends. I also have the

> touchy feely, wants to love all over you type of husband.

>

> It was very hard at first. It's very frustrating for spouses to

> watch us suffer, and to know they can't make it go away, no matter

> how much they want to! In a way, you're literally going to have

> to " reprogram " your husband. Explain to him that he can still hug

> you, but just not so intensely. And if he wants to touch, a massage

> would be a nice, soothing way. My husband will use muscle rub

> as " massage oil " on the really bad days. Another way to do it is to

> lead by example. A light stroke down the arm, back, wherever you

> want, a kiss, a gentle hug. Let him know that affection doesn't

> have to be shown by a crushing bear hug! Love notes are fun too!

>

> My hubby didn't take it too hard when I was diagnosed....I was

> already in pain for quite a while from the adverse drug reaction

> that caused the Fibro in the first place, and from shoulder surgery,

> so pain had become the " norm " . He felt bad for me though, that it

> was going to end up being a permanent part of my life. Since yours

> sounds like a really loving and caring guy, I'm sure he'll learn to

> adapt to the changes, with a little time. Good luck to you!

>

> Jen

>

>

>

>

>

>

>

> Attitude is everything—so pick a good one!

>

>

[Guest guest]

Thanks, Jen.

I have a few of those other odds and ends, too. I understand.

I also had severe pain from other things before the Fibro came along, so

hubby was used to seeing me suffer. I think that is one reason why he took

this so hard. He is tired of me suffering.

Thanks for all of the suggestions. I will put them to work. :-)

Love,

> Re: How did your spouse react?

>

>

> ,

>

> I'm really feeling for ya here. I have bipolar disorder and fibro

> as well, along with a few other odds and ends. I also have the

> touchy feely, wants to love all over you type of husband.

>

> It was very hard at first. It's very frustrating for spouses to

> watch us suffer, and to know they can't make it go away, no matter

> how much they want to! In a way, you're literally going to have

> to " reprogram " your husband. Explain to him that he can still hug

> you, but just not so intensely. And if he wants to touch, a massage

> would be a nice, soothing way. My husband will use muscle rub

> as " massage oil " on the really bad days. Another way to do it is to

> lead by example. A light stroke down the arm, back, wherever you

> want, a kiss, a gentle hug. Let him know that affection doesn't

> have to be shown by a crushing bear hug! Love notes are fun too!

>

> My hubby didn't take it too hard when I was diagnosed....I was

> already in pain for quite a while from the adverse drug reaction

> that caused the Fibro in the first place, and from shoulder surgery,

> so pain had become the " norm " . He felt bad for me though, that it

> was going to end up being a permanent part of my life. Since yours

> sounds like a really loving and caring guy, I'm sure he'll learn to

> adapt to the changes, with a little time. Good luck to you!

>

> Jen

>

>

>

>

>

>

>

> Attitude is everything—so pick a good one!

>

>

[Guest guest]

My hubby had this problem too - I started taking him along to the dr visits with

me. Now he hears what I hear and has been able to ask his own questions. He

can not believe how they treat me sometimes. It has helped both of us

tremendously! As for the touchy part. We just talk about it. I didn't want to

tell him yesterday that it hurt (Very bad pain flare yesterday) when he held me

and rubbed ever so gently on my back - but the tears started. He felt so bad

and told me I had to tell him so that he could be even more gentle. He knows now

that sometimes I need the touching no matter how much it hurts. I think as long

as you two can communicate and as long as he know it is the pain and not the

person - you will get to a place where it works for both of you.

Gentle hugs -

But my husband is a very supportive, loving and " touchy-feely " kind of

person. He is also a Mr. Fix-It. So he is having double trouble with this

diagnosis. #1 - He can't fix it. He can't make it go away, he can't stop

the pain, he can't cure it. He is worse with this than he was with my

bi-polar diagnosis. #2 He is ver affectionate and want to hug and sqeeze

and cuddle all the time. I try not to let on that it hurts sometime, but to

does. And when he notices he feels so bad. And now that he knows it hurts,

he is afraid to touch me. He is very down because he says this disease has

taken me away from him. It hasn't, of course. We just have to modify the

intensity of our affection (he is a very big, strong man).

[Guest guest]

My hubby had this problem too - I started taking him along to the dr visits with

me. Now he hears what I hear and has been able to ask his own questions. He

can not believe how they treat me sometimes. It has helped both of us

tremendously! As for the touchy part. We just talk about it. I didn't want to

tell him yesterday that it hurt (Very bad pain flare yesterday) when he held me

and rubbed ever so gently on my back - but the tears started. He felt so bad

and told me I had to tell him so that he could be even more gentle. He knows now

that sometimes I need the touching no matter how much it hurts. I think as long

as you two can communicate and as long as he know it is the pain and not the

person - you will get to a place where it works for both of you.

Gentle hugs -

But my husband is a very supportive, loving and " touchy-feely " kind of

person. He is also a Mr. Fix-It. So he is having double trouble with this

diagnosis. #1 - He can't fix it. He can't make it go away, he can't stop

the pain, he can't cure it. He is worse with this than he was with my

bi-polar diagnosis. #2 He is ver affectionate and want to hug and sqeeze

and cuddle all the time. I try not to let on that it hurts sometime, but to

does. And when he notices he feels so bad. And now that he knows it hurts,

he is afraid to touch me. He is very down because he says this disease has

taken me away from him. It hasn't, of course. We just have to modify the

intensity of our affection (he is a very big, strong man).

[Guest guest]

Dear ,

My DH took the news of my diagnosis pretty good. He was just relieved

that I finally knew what was wrong with me, and that it wasn't anything

that could prove fatal, such as cancer. Elwyn has never been one to

show a lot of emotion, such as hugging, so this has not really proven to

be a problem for us. The last time he hugged me was a couple of weeks

ago when our Persian cat died and I was crying my eyes out. He put his

arms around me, and told me it was not my fault that the cat had died,

since she was 188 years old at the time of her death. It felt soooo

good to be held in his arms that pain was the LAST thing I could think

about. But our sex life has dwindled to almost nothing. Elwyn has an

rx for Viagra, which he has taken in the past with OUTSTANDING resuslts,

so am going to get those filled on the 1st so th at hopefully it will

revive our sex life. My problem is not so much that I miss the sex,

which really is not that important to me, but rather the feeling that

Elwyn no longer finds me attractive due to my weight gain and the fibro.

hugs and prayers,

Sharon - Memphis, TN

Faith...with it, miracles *CAN* and *DO* happen!

[Guest guest]

Dear ,

My DH took the news of my diagnosis pretty good. He was just relieved

that I finally knew what was wrong with me, and that it wasn't anything

that could prove fatal, such as cancer. Elwyn has never been one to

show a lot of emotion, such as hugging, so this has not really proven to

be a problem for us. The last time he hugged me was a couple of weeks

ago when our Persian cat died and I was crying my eyes out. He put his

arms around me, and told me it was not my fault that the cat had died,

since she was 188 years old at the time of her death. It felt soooo

good to be held in his arms that pain was the LAST thing I could think

about. But our sex life has dwindled to almost nothing. Elwyn has an

rx for Viagra, which he has taken in the past with OUTSTANDING resuslts,

so am going to get those filled on the 1st so th at hopefully it will

revive our sex life. My problem is not so much that I miss the sex,

which really is not that important to me, but rather the feeling that

Elwyn no longer finds me attractive due to my weight gain and the fibro.

hugs and prayers,

Sharon - Memphis, TN

Faith...with it, miracles *CAN* and *DO* happen!

[Guest guest]

This is such a tough time for you and to deal with this must make it

worse. My fiance is wonderful; he has done a lot of research and

self education about FM. However, he too is a very touchy

affectionate person and struggles when I am in pain and cannot

tolerate being touched. This illness is very difficult for us and I

think it is also as difficult, although in a different way, for our

SO's. Men, by nature, have a " fix it " attitude and when they can't

fix something, it drives them crazy.

Is there a group for family members/SO's of fibromites???

[Guest guest]

Dear Janelle,

To my knowledge, there is NOT a support group for husbands/SO's, but

perhaps there should be. If you think that your spouses would be

interested in such a list, and one of them would be willing to act as

list moderator, please let me know and I would be happy to set one up

for them. I would not feel comfortable as list moderator on a list

designed for spouses/SO's... otherwise I would volunteer for the job

myself. I know Elwyn is not really interested, as he is not into e-mail

and computers, except to play games on ours. On the lung cancer lists

that I belong to, the spouses/so " s join the same list as the patients,

but they also have a Caregivers List as well as a Patients Only list, so

I can definitely see where our spouses might need one.

So ya'll talk to your spouses/friends/s'o's... anyone who is dealing

with your dx of fibro, and if there is enough interest, I will set the

list up (or try to, at any rate).

hugs and prayers,

Sharon - Memphis, TN

Faith...with it, miracles *CAN* and *DO* happen!

[Guest guest]

Dear Sharon,

Gordon was relieved to finally know what was wrong as well, to finally have

a real reason for the pain instead of imagining the worst (as in Elwyn's

case).

I am sorry to hear about your cat. My condolences. I am a major cat lover

with one that is almost 18.

I know how you feel about feeling unattrative due to weight gain. My pdoc

put me on risperdal for my emotional disorders last year and I gained 70

pounds in 10 months. I am off of it now and have only lost 20 pounds of the

weight. I feel very unattractive. Gordon tries to reassure me otherwise,

but I can't help the way I feel when I see myself in the mirror.

Anyway, I hope the viagra works for you guys. ;-)

Have fun,

> Re: How did your spouse react?

>

>

> Dear ,

>

> My DH took the news of my diagnosis pretty good. He was just relieved

> that I finally knew what was wrong with me, and that it wasn't anything

> that could prove fatal, such as cancer. Elwyn has never been one to

> show a lot of emotion, such as hugging, so this has not really proven to

> be a problem for us. The last time he hugged me was a couple of weeks

> ago when our Persian cat died and I was crying my eyes out. He put his

> arms around me, and told me it was not my fault that the cat had died,

> since she was 188 years old at the time of her death. It felt soooo

> good to be held in his arms that pain was the LAST thing I could think

> about. But our sex life has dwindled to almost nothing. Elwyn has an

> rx for Viagra, which he has taken in the past with OUTSTANDING resuslts,

> so am going to get those filled on the 1st so th at hopefully it will

> revive our sex life. My problem is not so much that I miss the sex,

> which really is not that important to me, but rather the feeling that

> Elwyn no longer finds me attractive due to my weight gain and the fibro.

>

> hugs and prayers,

> Sharon - Memphis, TN

>

> Faith...with it, miracles *CAN* and *DO* happen!

>

>

>

>

> Attitude is everythingso pick a good one!

>

>

[Guest guest]

You sure hit the nail on the head and described my hubby perfectly. He

began doing research on FM even before I was diagnosed because my

neurologist suggested that I might be a candidate for the disorder and

needed to see a rheumatologist.

This morning was a very bad pain day and my hubby took a day off of work to

stay with me and drive me around for my errands. I know he can't always do

that, but it certainly was nice today because the pain was very bad in my

legs. Driving would have been nearly impossible.

It would be a nice idea to have a group for SO's for fibromites. They need

support too.

Thanks for your thoughts and encouragement.

> Re: How did your spouse react?

>

>

> This is such a tough time for you and to deal with this must make it

> worse. My fiance is wonderful; he has done a lot of research and

> self education about FM. However, he too is a very touchy

> affectionate person and struggles when I am in pain and cannot

> tolerate being touched. This illness is very difficult for us and I

> think it is also as difficult, although in a different way, for our

> SO's. Men, by nature, have a " fix it " attitude and when they can't

> fix something, it drives them crazy.

>

> Is there a group for family members/SO's of fibromites???

>

>

>

> Attitude is everything—so pick a good one!

>

>

[Guest guest]

Hi :

My Dh is very supportive and helpful. He does help with cooking,

cleaning, dishes, laundry, etc. He goes to every appointment, test

and surgery and takes time off when I'm in the hospital. He is very

good about this because he knows he is all I have. My parents are

local, but they honestly don't care if I live or die.

There is one thing I think it's only fair to mention. My Dh was

this way before I got sick, so I can't honestly say he is this way

because I'm sick.

Take care,

Star

[Guest guest]

Isn't it great how they give you drugs to help your mood then forget to tell you

that they will make you FAT!!!??? Like gaining 60 lbs in 2 months didn't affect

my depression at ALL!!!!

<><><><><>

RE: How did your spouse react?

....

I know how you feel about feeling unattrative due to weight gain. My pdoc

put me on risperdal for my emotional disorders last year and I gained 70

pounds in 10 months. I am off of it now and have only lost 20 pounds of the

weight. I feel very unattractive. Gordon tries to reassure me otherwise,

but I can't help the way I feel when I see myself in the mirror....

Have fun,

[Guest guest]

Dear ,

We know from past experience that the Viagra is a wonder drug, at least

for Elwyn. We just have not had the $50 to turn loose to get his rx

filled. I have told him to take it down to Super D and get just two of

the tablets filled... that would be a 2 week supply, as you are only

supposed to take one in a week's time. Maybe after the 1st we will have

enough money for at least a partial rx. At least I hope so (sigh).

hugs and prayers,

Sharon - Memphis, TN

Faith...with it, miracles *CAN* and *DO* happen!

[Guest guest]

Ask the Dr. for a free sample pack. They have 6 to a pack. Then save up if

it is still needed. That's what I did. (Damn side effects. Mid 30's and in

need of Viagra. Sometimes I think they build in side effects just to sell

drugs to counter-act them)

RE: How did your spouse react?

Dear ,

We know from past experience that the Viagra is a wonder drug, at least

for Elwyn. We just have not had the $50 to turn loose to get his rx

filled. I have told him to take it down to Super D and get just two of

the tablets filled... that would be a 2 week supply, as you are only

supposed to take one in a week's time. Maybe after the 1st we will have

enough money for at least a partial rx. At least I hope so (sigh).

hugs and prayers,

Sharon - Memphis, TN

Faith...with it, miracles *CAN* and *DO* happen!

Attitude is everythingso pick a good one!