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Old 05-07-2012, 10:44 PM   #1
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Fibromyalgia and Sex

Believe me, I know this is a rough topic to talk about, but I need help. Making love is absolutely the last thing i want to do anymore. And, when we do, it hurts me so badly, and I am completely wiped out for at least 3 days - by then he's ready to go again. I feel like this +*^*+ Fibromyalgia is taking this away from me, too. AND!! My poor husband of almost 40 years......deserves much better. I am so tired of being a disappointment, after feeling like I was a really good wife/friend/lover for over 25 years.

Any suggestions, comments, and/or helpful experiences will be greatly appreciated. This was so very hard to write about, but I have no one I can talk to. I am really hoping you all will respond.

I have had Fibro for well over 10 years, but this year I have not had any, what we call, "good days." The ever changing weather - with high after low after high and so on. I hurt all the time, and am so tired, much more than the usual hurt and exhaustion. This causes me to be even more depressed. It is a never ending cycle.

 
Old 05-08-2012, 06:57 AM   #2
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Re: Fibromyalgia and Sex

hello and welcome,
yes it is a delicate subject. given how long you have been married i will ask first how open minded you both are to love without intercourse. there are other ways to gift each other with a memorable experience.
i remember how much it hurts. i am single now and will stay that way. how blessed your life is to have a mate for over 40 years. oh, and hey it's for better or worse. if he is not pestering you in a bad way for sex you two ought to be able to sit and discuss your options with open loving minds and hearts.
get of the failure train. it goes nowhere and is a pointless ride. you got sick. life happens. that does not make one a failure. it makes one human.
peace,
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Old 05-08-2012, 07:18 AM   #3
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Re: Fibromyalgia and Sex

I am dealing with this with my fiance. I am lucky that he is understanding and has seen me at my worst with fibro. Poor guy gets sex from me maybe once every couple weeks or so. He is fine with that little though. We do other things for each other to show our love (non-sexual).

I agree with Blue. Talk with your husband about it. HAs he voiced that he was unhappy? Or are you feeling guilty?

HUGS!!

 
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Old 05-08-2012, 09:13 AM   #4
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Re: Fibromyalgia and Sex

I've had little interest in this area since everything started in 99. So my hubby has never seen me at my best. But he thinks the years before fibro pain kicked in were my good years... It sux... So he makes comments like pressuring me or making me feel guilty will get me trying more. But I'm the opposite, it's such a turnoff...
Unfortuetly my husband seems to hit my Tendar areas & things like that. The other day I felt like I dislocated my hip, hurt so bad.... Unfortuetly I don't say anything usually. He doesn't notice he hurts me... But I do think we need to learn to speak up when that happens. They gotta learn to be gentle... I wish there was a way to make us more interested.... I know for me it's not the meds because I had these issues before...
Luckly your husband knows you well enough to know the real you. I'm sure he knows you really do hurt. Mine should know me well enought to know I'm exhausted, hurt, sick, ect but he doesn't get it. I wish I was my real self again but I guess she's been gone a long time & nothing I can do about it now.
It is all very frustraiting & easy to feel like a disapointment... But we didnt choose this... So we gotta try not to beat ourselves up over it...
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Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

Last edited by thefarm; 05-08-2012 at 09:17 AM.

 
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Old 05-08-2012, 09:46 AM   #5
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Re: Fibromyalgia and Sex

It is a hard subject no pun intended lol. My husband and I haven't had sex in 3 years now due to the pain, but we do sit on the couch and cuddle or when we are out we hold hands these are small things but are huge in are marriage we have been married 22 years. This is one thing my husband does understand about fibromyalgia as I told him 3 years ago sex to me hurts as bad as if he has been kicked in the nuts and the pain would last for weeks. We are married for better or worse now is the worse bit. I hope you can talk to your husband and find other ways that will bring you both closer . Hugs to you fibro

 
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Old 05-08-2012, 10:06 AM   #6
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Re: Fibromyalgia and Sex

Thank you, ladies, for both of your responses. And, in answer to your last questions, both - he has voiced his unhappiness about this situation and I am feeling guilty. Even after all of these years of me being diagnosed, he goes from supporting me in going to my Drs. Appts. to being completely frustrated and wanting me to find new Drs. because they are not making me well. Husband was especially upset with my first PCP, and was actually excited when my Doc left his practice to go into research, because I was going to have to see a new Dr. I was terrified, and spent a couple of months on the Internet looking for who I thought would be a good fit. I found a really good female PCP who is part of a University Women's Health Center that has specialists in all areas. I have been seeing her/specialists for about 2 years - about 6 months in , I was at an appt. & wasn't getting around well/having shortness of breath/very tired-typical Fibro "stuff.". Within 10 min. She did an EKG, and had me being run/wheeled to the ER and was then seen by a cardiologist. It was A-Fib, and she caught it right off - not sure old Doc would have, as he & I always just chalked up everything to Fibromyalgia. Husband was her biggest
cheerleader then, but now is saying she's just like the other one; dragging her feet and not making me well. In reality, he is very aware that there is no known cure. It is just his frustration along with his male genes wanting to fix things and take care of me.
We've really had a very Blessed Love Story. Met in High School and married at 18 years old. As for sex, we've both only been with each other and plan for it to be that way "until death do us part." We've always felt so lucky because, contrary to most of our friends, we still not only love each other, but we
genuinely like each other! Imagine the shock while in the ER with undiagnosed gall stone problems, I had a severe allergic reaction to compazine that caused all my muscles/joints to hyperextend - after 5 days, it was finally under control. But, slowly but surely, I began to ache........and you all know the rest. Drs. think that even though I had IBS since I was 24, the reaction is what triggered my Fibromyalgia.
We have adapted our lifes, but whoever "they" are who say this is not progressive have not had it themselves. (Don't think a blanket statement can ever cover all of us.) I am much worse than I was at the
beginning. At first, I was able to go right on as if nothing was the matter as long as I got plenty of rest - not so, now. I'm not gonna go full out "pity party," I'd just like to have our sex life back. I've been reading on these boards a lot, and think I have a new plan for next time. Gonna get in a warm bath for 10-15 min. before and get back in after. Also, bought a wedge pillow, hoping that it will help me be more comfortable during. (Seems so strange to be planning something that has always been so natural and spontaneous - especially as we are empty nesters now). But, believe me, comfort would trump spontaneity any day/night.)
I know I have written a novel, but felt I should kinda tell a bit of my story, as I was typing about such personal issues. Do you think what I am planning will help? Anything you would add? (Husband will be game for anything. If I
said I would like it better in the middle of our street, he'd be instantly out the front door tearing his clothes off & he is really a modest guy......key word here, though, is guy!!

 
Old 05-08-2012, 10:17 AM   #7
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Re: Fibromyalgia and Sex

I understand completely FG12, I know husband has to miss that fun loving, laughing, girl he married, but I really miss her, too. And, I know he and I need to have another talk about being gentle - seems like during, that thought does not have a place in the forefront of his mind. He's all into it, and all I can think is, "I hurt! I Hurt!! I HURT!!!". Not a good mindset for pleasure!
Sending good thoughts to you. Thanks so much for responding.....

 
Old 05-08-2012, 10:26 AM   #8
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Re: Fibromyalgia and Sex

I understand about the pressure & guilting being a big turn off. It's hard enough (no pun intended to have sex - absolutely can't be cause I "have to!". We have always been real affectionate, but sometimes the patting, squeezing the shoulder, even holding hands hurt sooo bad. When I can, I try to always reach for his hand like we always have when watching TV.
I love this man!! I want him to have all the happiness he deserves!! (I am a Wife, Mom, Grandmother.......I'm used to putting everyone's happiness before mine.

 
Old 05-08-2012, 11:11 AM   #9
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Re: Fibromyalgia and Sex

Taking a bath may help before sex. My fiance always massages me before we have sex and that helps. Sometimes I start hurting during sex but I don't let him know it.

 
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Old 05-08-2012, 11:34 AM   #10
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Re: Fibromyalgia and Sex

Me, too, Mom477. Aren't we a mess......:/. But, at least, on this board we are somewhat together - there are others who understand. I am so glad I found you all!!

 
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Old 05-08-2012, 12:04 PM   #11
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Re: Fibromyalgia and Sex

You got that right!!! I am so glad I found this board and all of you. Sucks that the reason sucks. Lol

 
Old 05-08-2012, 12:57 PM   #12
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Re: Fibromyalgia and Sex

It's hard to adjusting to living life differently. If planning works then that's great! Me & hubby picked one day a week to be together. It helped him look forward to it & not wonder when will be the next time which only makes him cranky. For me I was able to pace myself & prepare for it. Unfortuetly we have slacked & prob should do that again... He gets sexually frustraited & turns into a real jerk. I'm used to his hurtful comments sometimes but he can be hurtful to the kids when he's "frustraited" which leaves me chewing him out. So it gets nowhere... There has been times when I'm more willing. Whys really interesting is that during those times, he turns me down allot... It's like a game... He wants to get what he wants & when he gets it he doesn't want it... I'll never understand men...

One thing I've learned... We've made it through more than many couples could. If we can make it this far it's bound to get easier...
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~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 05-08-2012, 01:43 PM   #13
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Re: Fibromyalgia and Sex

There is hope for those suffering from Fibromyalgia and limitations that go along with it.

As you know Fibromyalgia is the dumping grounds for what physicians do not know is causing patients misery/pain. There are other things that can cause this same type misery/pain. Vitamin D deficiency, thyroid, inflammatory (arthritis) and others may be contributing to the misery.

Fibromyalgia has been my sidekick for 64 years (long before a name was given to the misery/pain) and has required making adjustments in order to live life to the fullest. I soon learned I was going to hurt whether I stayed home and did nothing or if I went about living life hurting.

We can put misery on the back burner by working on our "ATTITUDE" and "ACCEPTANCE" of the pain and misery.

Once we change our attitude and accept the condition the sooner we will be able to live closer to a normal life.

ATTITUDE and ACCEPTANCE is the key!

The sooner we stop thinking about "poor me", "I hurt so bad", the sooner we can put the misery on back burner and go on with our lives (yes we will still hurt). Do not let your attitude or lack of acceptance drag you down.

Yes, we have to take care of yourselves and not obsess about our condition.

I met a group of ladies with Fibromyalgia and they wanted me to join their group. Well......after talking to them for a while, listening to their moaning and groaning, each trying to out do the other on how bad they hurt, I decided the last thing I needed was to be around negative people pulling me down.

A light touch increases misery, however, a deep firm gentle touch will be relaxing. Deep circular massage of trigger points will relieve pain. Yes, massaging a trigger point will hurt, then you will see long term relief.

Prepare for intimate times by taking a very warm/hot shower and then have husband give you a firm deep gentle back massage.

When people greet you and ask how you are doing, don't give them details of your misery along with a sad face. They really do not want to know. Best to smile and say "I am fine, how are you"?

Having said the above, I do still hurt, only difference it is not on the forefront of my brain, it is simmering on a back burner while I live life.

To go along with Fibromyalgia I also have Nerve Hyper-Sensitivity. Another condition physicians do not know the cause or how to treat.

 
Old 05-08-2012, 07:10 PM   #14
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Re: Fibromyalgia and Sex

I'm having this issue as well! I'm also having random other issues down there that my doctor chalks up to me "changing" and I just have to deal...even though he didn't check anything. *******. Need a new doc. Anyways, right now when we have the time I get my fiance to massage me and make sure to take his time before we go into anything so that I am fully ready. Then I remind him to be really gentle and just make sure to talk to him a lot during so that he knows if something is hurting me and we can both have fun. Sadly this has been happening once or twice a month for awhile now. Gotta love this illness, eh?
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Old 05-08-2012, 07:56 PM   #15
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Re: Fibromyalgia and Sex

Misty800, thanks for replying. I, too, believe that we have to accept ourselves, and learn the best way for each person with Fibromyalgia to live is unique to that individual. The first thing I did, after being diagnosed, was attend a Fibromyalgia Workshop where I was taught the basics of this illness. Along with reading books and Internet articles, I try to keep informed in the ways to help myself. Every message board I have read soon became a pain one-up-man-ship (if that is a phrase), much like you experienced in your support group. That just brings me down. That is why I like this one - people can ask for info., vent, share experiences, and the members are supportive, great listeners, great personal experience sources, and cheerleaders!
Information on Fibromyalgia and sex is hard to find. That is why I broached this subject here. I have no one I can talk to about Fibromyalgia - it makes me much too vulnerable to talk face-to-face about such personal issues.
When asked how I am doing, everyone is met by my smile and assured that all is fine - I agree, it is best this way. I think your suggestion of a warm shower is much like my idea of a bath before sex. I do like your suggestion of a massage. Thanks so much!

 
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