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trying to get my gf with fibro. to join this community
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rj1600 posted:
my girlfriend is 34. she has been battling through the life of having fibro for many years, and only 2 weeks ago was formally diagnosed to it. (previously she thought she was crazy, or had lupus or just thought something was wrong with her)

i read a lot of the posts in this community and think it'd be great for her to be a part of it, cause i think only you people would be able to understand what she goes through. i even read a number of posts from here to her, and she appreciated them. but for some reason she still doesnt join. she says she doesnt have anything to say.

i just think it's important for her to have the support of such a community and have you guys in her life even in a little way, so she can vent out or ask questions to people who know what she's going through.
i am wrong to push her to join? is she not joining because she's afraid?

i just think having support groups like this are important.
Reply
 
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SimoneSilvestrin responded:
Dear RJ,

congratulations for your iniciative and comprehension on this matter. Having FM is exactly like that: sometime we want to believe the diagnosis was wrong and it will go away some day. Other times we wish it was a killer, so the pain would stop sometime.
if she was just diagnosed, it?s very bumming to think this will go on forever. It?s a terrible truth.
I?ve been battling for 12 years now and still not used to it. How can you get used to it?
My advice: print some posts of good days and bad days and leave them around, so she can look at them when nobody is looking.
Try to find a support group near you.
Good luck and good days for you
 
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Randm2220 responded:
Rj,

I agree with Simone. What a wonderful idea she has!

Having fibro is no fun and I am glad she has such a wonderful and caring bf. That will help her a lot. I was officially dx'd over 3 years ago but the battle has been going for a lot longer than that. I have a wonderful DH who understands and helps tremendously, but having this support group is needed. We can share good and bad days and talk about anything. There's no way I could cope without it!

Kim
 
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annette030 responded:
Let her just read for now if that is what she wishes. Since she has had FMS for a really long time and has gone through misdiagnosis she may find that she does have something to offer others.

Don't push her, just offer to read posts to her as she wishes. This may be for her and it may not be.

She is lucky to have a partner like you.

Take care, Annette
 
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rj1600 responded:
thank you guys for replying with such useful guidance. i'll make sure to follow as advised.

im glad this community exists and like i said reading through the posts helps me, cause it allows me to know how i can play a role in her life. though at the moment it seems like i have to do a lot of apologizing, and sometimes i feel like a puppet and i have to display a whole lot of patience and cover any frustrations. i am trying to understand her perspective. sometimes i dont feel the love from her that i can get elsewhere, and that eats me up sometimes, but i'm trying to have faith.

she'll tell me every now and then how she feels like she should be alone so she's not a burden, and that she wants me to be happy and to have a 'normal' life with someone. i wonder how that affects her day to day thinking and wish i could have a better glimpse into that.

at least now, because of this community, i know not to try to push her to do things like clean up her apartment, cause i thought that clearing things out and open space would help her attitude, and to allow her to do that on her own time and when she's ready...but i struggle to understand as to whether it is helpful to sometimes give someone with fibro a nudge here and there for their benefit.

her libido has decreased and i'm trying to keep my frustrations in control with that, but sometimes i'm rude to her because of those frustrations. nothing too drastic i think, because i always try to be mindful not to say anything to cause her more stress. but i can still be rude sometimes.

i'm probably not supposed to be using this site like i am, but i'm learning how to live when someone dear to me has fibro and i dont know where else to go, so i guess i have to bother you guys. i dont want to give up on a relationship with her just because of some stupid health issue, but i feel like i need to figure out how i can be a positive part of her life while at the same time being content and happy within myself
 
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xperky replied to rj1600's response:
rj1600 - I see you are really thinking about you, your girlfriend, and how to best cope with your situation. I think this could be a great place for FM caregivers to come and interact.

You are probably right to let your girlfriend keep her apartment how it is. I bet she loves it when you do pick up after yourself when visiting though!

Her decreased libido might be a hard thing for her to discuss with you. There are so many expectations in blossoming relationships, and I imagine she doesn't want to disappoint you. I have seen a few discussions here regarding FM and painful intercourse. I have no clue if she has trouble there, but would say she should see her doctor about that and ask for medical advice, if so. She may also be depressed after her diagnosis, and that can affect libido.

I'm sorry you feel like she is pushing you away and wants for you to have a 'normal' life. We FMers can feel very guilty about what we put our loved ones through. A big hug and reassuring words at those times may help her feel more confident and secure. I know I suffer from lack of self esteem, so whenever my husband says how much he loves me, I feel better.

Try to find positive activities you can do together, even if it's just playing a game of cards together. I hope you can find some comfort on this site. We'd love to have your girlfriend join us if she'd like.
With Compassion,
Margaret
 
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rj1600 replied to xperky's response:
thank you margaret. youre so helpful
 
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katmandulou responded:
Hi rj1600!

My husband found some good websites that helped me in the early days. I found this community be accident, and I'm glad I stuck around.

I agree with annette030 that she might want to just 'lurk' for awhile and see who's here and what we talk about. It's not all about FM - sometimes we gripe about the weather, our kids, grandkids, parents, siblings, work... And sometimes it's just something fun.

I'm sure she's scared because she doesn't know what her version of FM will become. Some of us have constant pain, others get small respits, and other have little pain.

Gentle offers of help, like "can I do anything tonight - wash the dishes, maybe?" might get her to open up a little more, and lead the way to a major cleaning. Stick around and take it one step at a time.

Have the best day you can possible have!
Lou
 
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rj1600 replied to katmandulou's response:
hey lou,
thanks for replying. i'll follow your guidance.
i think the good thing about me is that i'm a mama's boy and in turn a great sous chef of hers, so i dont mind doing anything in the kitchen or cleaning up around the house. its the same thing for my parents, i would rather do the work/errands rather than them. so its lucky i have the patience for that, so it makes my girl's life easier. i'm monitor to see if it leads to her eventually doing a major cleaning.

today she had suicidal thoughts and depression because of just starting cymbalta and i put up another post about it cause she was interested in what you guys had to say...

i'm trying to be better for her, but yesterday i caused her some stress which may have led to her bad day today..it was over something stupid, but sometimes i feel like i have to put my foot down, even when most of the time i wont just because i dont want to burden her. i feel like i still have to treat her like a healthy person, and not fall to her every concern or demand? i dont know. i'm still figuring it out...

i also think i'm trying to figure out how to deal with my sexual frustrations (i'm 29 and i think at my hormonal peak, if there is such a thing for guys) by happenstance (i swear) i came across an article that said semen ingestion was healthy:

Apparently semen contains "mood-altering chemicals" like estrone and oxytocin (which elevate mood), cortisol (which makes people more affectionate), serotonin (which is like an antidepressant), and melatonin (which induces sleep).


i contemplated bringing that up to her in that it helps with her problem and mine, but i dont know if thats just me being a pervert or not. ....i'm probably being a hopeful pervert..haha...like i said i'm trying to learn how to come to terms with things just as she is
 
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katmandulou replied to rj1600's response:
Bad days happen, I'm glad you're loving and supportive. There is hope!

My DH has been awesome, putting up with my mood swings (FM or middle age, I don't know). I try to let go of what I can't control, but I have a little OCD (little? HA!) and can't always do that.


How does she feel about her doc? can she talk to him/her? I know this is new, but I was led to a great doc, and I feel I can talk about anything with him or his PA.

As for your, umm, needs, I get that. I swear the FM took all my libido and tossed it out. We're working on it. You can create a place to talk about it, nice dinner, great dessert and an "I want to talk about something, and I don't want to make you feel bad..." and see where it leads. You're both young, and it's important.

Chocolate is a great mood elevator too. Best to you both,
Lou
 
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rj1600 replied to katmandulou's response:
hey lou.
looks like the cymbalta's kicking in..she's feeling much better in terms of pain and no more suicidal thoughts. she's asking me to go running with her tomorrow morning, so we'll see how that goes.

today i'm doing well in terms of not being sexually frustrating so that'll be good for when we hang out tonight.

i feel guilty taking all this advice from you and not being able to offer anything in return

rishi
 
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jrae922 replied to rj1600's response:
Hi RJ!

So I know that I'm quite late to this conversation but thought that I might be able to add some insight since I am very close to your girlfriend's age. I've had Fibromyalgia for 20 years (diagnosed 15 years ago) but I can tell you that it took me a very long time to accept my illness and to seek out information from the community. I was in denial for one thing, and even though I wanted to feel better I didn't understand what benefits there were to belonging to a community or support group. Some people just take a while to come around and to accept the reality of the illness.

It's great that you are so caring and willing to help around the house. I like the idea of making information available to your gf - she can decide for herself if she wants to read/participate in discussions, but don't push her. Your emotional support is vital to her quality of life and I know she will appreciate it whenever you can help her out with chores.

I'm married (been with my husband for 8 years) and have really deteriorated since I first met my husband. The libido issues have come and gone, but when I feel good (meaning, my symptoms are under control) my libido is normal. Your gf will feel better with the help of anti-depressants as well as more sleep and less pain. My advice is to keep the lines of communication open (listen to her but also tell her how you feel and what you need). Offering a massage is a very nice way to help her feel better and it can sometimes lead to 'romance'. I totally understand the way you feel and you deserve to have your feelings heard. By the way, I have read that women who have unprotected sex with their monogamous male partners do benefit from exposure to semen; that it increases serotonin, endorphins, and oxytocin and therefore decreases depression. I'd go so far to say that women who have healthy, happy sex lives are happier overall even if they don't have Fibromyalgia. The key here is to make her feel well enough to want to have sex (and you can't do that alone).

One important thing to mention is that Fibromyalgia does not have to ruin relationships or make partners unhappy/unfulfilled. It's very important for your gf to keep her depression in check, for the two of you to always communicate, and hopefully she will take as good of care of herself as possible. It's great that she wants to exercise because that can help her feel so much better. Please encourage her to do all those things.

I wish the two of you the very best!
Jessie

PS Don't be afraid to continue to reach out to the Fibromyalgia community. We're all in this together, and that includes those who are ill and those who love us!
 
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rj1600 replied to jrae922's response:
thanks for the reply jessie.

i know its terrible for me to complain given i dont have to go through the pain of fibro,
but i really feel frustration building up because of the lack of sexuality.
i guess what is going through my mind is that she's had an active sex life with others and now here i am, thinking of spending the rest of my life with her, and she cant give me what she gave to others. and that bothers me and i dont know how to overcome it. i dont mind the night of not going out, or just laying around with her cause she's too tired, or anything else that comes along with the fibro, but i dont know if i can get over that one thing...


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