RA and Relationships. Are you affected?: Why is it... - NRAS

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RA and Relationships. Are you affected?

20 Replies

Why is it that sex and relationships is such a sensitive subject? Yet where would we be without it?

I know in my experience that the loss of libido etc can have a great effect on your marriage/relationship. Although my husband never complained as he could see it was the last thing on my mind, just getting some sleep was difficult enough.

We all know what the pain,fatigue etc is like the sex part of our marriage was never given a second thought by me.

It's only over the past few years things have got back to something like "normal" whatever that is! and that I have understood how much my hubby must have put up with. Very occasionally did I cook a meal,wash,iron, and do housework, it was done but mainly by my hubby and my sister and they also had full time jobs to hold down, and a young child to look after.

However, it is important to talk to each other and to say exactly how we feel and that even though you don't feel like being intimate doesn't mean that you don't love your partner but they just need to be a little patient. Just a cuddle sometimes can make all the difference, my temper and patience was terrible too and this was something I had to try and control however hard it may have been at times. The last thing I wanted was to drive away the people I love the most, It may have been hard for me but it was just as hard for them.

I know this is a very sensitive subject and affects everyone in a different way, some more than others. But when your diagnosed at a young age it can put more of a strain on your relationship.

So in the meantime if this affects you don't despair your life will get back to some sort of normality, eventually .

mand xx

20 Replies

Hi Mandy. You're right. It's always a dodgy subject and yet sex is a part of any relationship, but it does seem to vary by how much of a part it is and just the like the disease itself, it varies in it's importance from couple to couple. It is hard for relatives to understand what you, the sufferer is going through, and I recognise when you say about the short temperedness and moodiness, I was all of that, but mostly whilst I didn't know it was RA?! As for our sex life, we met late in life, ahhhh, I was 44 and David was 40, and it was like I had never had proper sex before I met him!!! So it's almost been like from new for the last 10 years. I know it's a bit personal but we should be able to talk about it if we want to, it's such a natural thing to do. So for our part like you said, because we have always been very open about what we expect in that department, it was never a problem to talk about how it affected us with me in my state! To be honest, after my steroid injections, I can't keep me hands off him, and we have had many a laugh and giggle, when painful knees, hands, or whatevers, have coitus interruptedus. So I am lucky to have not suffered too much regarding libido, the biggest problem has been staying awake. But then you see when David is lambing, he is often late coming to bed, sleeps on the sofa bit if he is waiting to go back to a sheep who has just started and gets up early in the morning, so we have bouts of sexlessness.

Communication, communication, communication.... talking, and not expecting people to read our minds... easy to say I know but it is the answer.

Thanks for bringing the subject up Mand and look after yourself. x

in reply to

Thanks Julie, wasn't really sure how people would react to this blog but as you say it is part of our lives.

Different for everyone too, I did recognize what you said about laughing with our aches/pains while trying to be intimate!! I did eventually get to that point thought it did take a long time.

thank you

mand xx

Hi Mand

I am really pleased you brought this up. I am new to Health unlocked and have been diagnosed withRA for the past 18 months. I also have Srogrens syndrome and a long history of auto immune issues.

I am second time around married ) since 2007 and like the lady above felt that I had never had sex before until I met my husband.

However since getting RA I have been soooooooo tired like nothing imaginable. Well Im sure lots of you guys could imagine.

This has definately effected my libido and I feel really sad about that because I so love my husband but to be frank I just feel ill achey and tired. And wait for it....I cant open my legs properly because my hips hurt and I have developed bugger it.....ostoearthritis in my pelvic area.

I feel sometimes like I am on a down hill decline and I am only 46 ( Only !???)

and it took till I was 41 till I met the love of my life. Will I get it back I do hope so. I may be going onto biologics shortly and wonder if that will help some of my symptoms.

Any way luckily ( or not) my lovely man is really tired now from worrying about me and having to do all the house work and cooking on top of a 60 hr week. So has gone from having a strong libido to less than.

Its nice to have some frank and open discussions sometimes isnt it.

Best Wishes to All xxxxxxx

Tricia-P profile image
Tricia-P in reply to

Hi Ali,

Welcome, to health unblocked blog and us little bloggers.

I'm hosting a virtual tea party on Friday pm have a look at the thread, please join us.

And you asked about biologics well after my first 18 months of RA and nothing worked, i was given humira and within a few days I could feel it start working, it was fabulous. previously the Rheumy had said he would hae put me down if I'd been a dog. then 6 weeks later when i saw him I made him write That this was the start of my life again. so push to get the biologic, your man may not recognise you.

So, hope to see you Friday.

gentle hugs take care

Triciax

in reply to

yes your right it is nice to talk openly about these things as they have a big impact on our lives. Not being able to get close to the one you love is also painful!

Thanks

mand xx

in reply to

Hi Sparkle, welcome to HealthUnlocked. Look forward to getting to know you :)

You should notice a big difference once you're prescribed a biologic; I felt as though I'd got my life back when I first went on Infliximab. Do you know yet which one it might be?

Lyn x

Tricia-P profile image
Tricia-P

Mand and Julie,

You both are so right, we've been married for 38 years and it don't seem a day too long. I was talking to a young girl at the blood suckers, she had just had a baby and she asked if it would be ok to ask me a question. Which was were you put off sex when you had children, and the answer was yes as our hormones are all over the place. I went on to tell her that now since I've had RA sex has been difficult what with him on his colesteral (spelling) and high blood pressure pills and me with the don't do that it hurts my whatever, and we have had some damp squid moments but you cuddle have a kiss and know that the person you chose to live your life with understands.

But mind i have told him I don't think I could do it in the shower any more. Those were the days when he was in the army and away for 6 weeks or even 6 months,,,,,,,,,,I'm blushing thinking about it. i might have to remind him later

Candles on the table lights down low music a glass of wine ooooooooooooh!!

Oh my goodness Tricia you will have us all feeling soooo jealous!!!!

Me, nowadays, I just prefer a nice cuppa and a choccie biccie! Sad or what?!! Hee hee!!

lovely, and I know what you mean about the shower, just the other day we were talkin about when we shared a bath together! we had a laugh though, can hardly get in one now!!

mand

Mand what a fab blog!

Me and my partner have been together for 16 years and even though I have all the pain and limitations we still have an amazing sex life! Like Julie the key to it is comunication! We have always been open about sex, and now because of RA we have had to change things round a little so I am not in anymore pain, although I dont mind because its worth it, but he dose because he ends up feeling guilty if I overdo it and hurt more.

I must admit my libido has dropped a little, but he always has his ways of bringing me round to the idea.

Its great that we can all be so open on a subject that is often hush hush, but we should all feel free to talk or type as we please xxx

Hi Tricia

me and my hubbie have just read your hilarious comments and its made us really smile as it could be us! Its comforting to know others go through similar.

Hello back to Lynw- the biologic is something like Mabthira ( sorry spelling may be wrong as Im guessing from memory ) I think my consultant thinks it may work on my antibody profile. Still not quite sure how that one works yet.

Also- I read your profile lynne, which was interesting +++ and somewhere read that you have had to stop methotrexate. I think....? Due to neutrophiles dropping. Can you tell me if you have found methotrexate monitoring straightforward. For example has it been easy to access your blood count over the phone? Im injecting but have had to stop recently due to low WCC ( not neutrophiles) Am back on it again but am having to wait ages up to 8 days to get blood test results. Its a bit annoying because if my WCC has dropped and my GP doesnt check until after my next weekly Jab- I could end up taking methotrexate when I shouldnt. If you see what I mean.

Am I being a control freak by wanting to be able to ring up the next day or so for a blood test count from the receptionist. My GP seems to think that the admin staff are not able to read out the numbers. Just makes me wonder who owns this information anyway- its my blood !!!!!! Has anyone read the immortal cells of Henrietta lacks by the way? Now thats an interesting read........

Tricia-P profile image
Tricia-P in reply to

Hi Sparkle

Thanks for your comments on this great blog that Mand started, it's a funny thing RA and it effects you in so many ways.

I'm trying to find a copy of the book you reccomended. I'm going to have a look at our recycle centre to see if they have it.

re your blood count I have to fight to get my results sometimes but we have had a new system put in our Rheumy Nurse specialists have got 2 ladies that help them and they give the bloods, my GP who's fantastic can never get the results, I email the rheumy's and ask for the latest results to be put in the post. Maybe have a go at that then you can take them with you when you have an appointment.

Triciax

Gina_K profile image
Gina_K

Hi, Great discussion re intimacy, must say I know that loss of libido only too well, very hard when being hugged not to say be 'careful' or when he holds my wrists kidding around to say 'careful'. Will have to get those candles out and put on soft music!!!

fantastic blogsand comments ladies inspirational everyone who has contributed here xxxx

Ailsa-NRAS profile image
Ailsa-NRASPartnerNRAS

Hi everyone,

I can totally relate with all of this and thank you for all being so open about what is a very difficult subject especially for some health professionals to help with. NRAS is planning to start work on a booklet about sex, relationships, emotions etc. later this year and we will want lots of input from our members and volunteers so I hope some of you will be prepared to contribute to this. I think it's much needed as evidenced by all your blogs.

Ailsa

Hi everyone, when I wrote this blog I really wasn't sure how people would react as it's a very sensitive subject. I'm so glad I did now as most of the things you have said are very encouraging for relationships.

It's nice to be able to talk about these things as they do affect us and we don't then feel so alone. RA is a part of our lives and we have to learn ways to deal with it, and if that means finding ways to be intimate that doesn't cause us anymore discomfort or pain then that's great. Like Julie said it's about trying different positions too!!

Thanks everyone for making me feel better.xxx

mand xx

Hi Mand

Just catching up on reading the blog posts and thought your post was great. It's good to be able to talk about these things openly and be reassured that we're not the only ones.

I think my libido has got well and truly lost and has possibly emigrated but I'm hoping to track it down again one day in the future :-) For now I think I'd rather cuddle up with a hot water bottle or heat pad!

Another great blog post - well done.

Ann x

Thanks Ann, I'm sure your libido will come back, wherever it may have gone!! lol

I'm glad you liked the blog I think because I've had RA for quite a few years I have had different experiences and have found it helps when I write about them and by the looks of it helps others too which is great.

mand xx

Tricia-P profile image
Tricia-P in reply to

Hi Mand

Thought I will tell you a story, as said my man was in the army and when he had been down to the Falklands for a tour of duty for 6 months as a laugh and an ice breaker I bought the now very old joy of sex, but it didn't arrive in time, I was going to leave it on his pillow.

Instead after he had been home for I can't really remember but say 3 days it came and he opened it, I didn't get quite the effect I'd hoped for he thought I'd bought it cos he had lost the knack

I had to show him he hadn't aaaah. xxx

triciax

Oh the "joy of sex" if I remember right they were videos!

mand xx

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