As anyone had problems with their sex... - Fibromyalgia Acti...
As anyone had problems with their sex life?
WHAT sex life?
Exactly!!! but it isn't that I don't want to, it's that I'm to exhausted or that my 2 year old is in the way, but i can't just make her disappear, or forget about the pain and tiredness... I just feel that i'm not understood and am blamed for all of it!
Rofl M , but yes I do know what you mean Carla, medication can make you too tired and affect your sex drive and then when you do actually have some fun in the bedroom you can wake up feeling like you have gone 6 rounds with Mike Tyson ....
Fortunately I have a wonderful OH, but I can imagine for some people it could become quite a problem
VG x
Hello everyone,
Thought I would post this passage from ;
The Ripple Effects of Fibromyalgia: Who is impacted and how?
By Rosalie Devonshire MSW, LCSW, Author Taking Charge of Fibromyalgia 2008
'Intimate relations may become a thing of the past. Many fibromyalgia patients are too tired or in too much pain to enjoy sexual relations. Side effects of the medications may also lead to a reduced sexual desire or problems with achieving orgasm. Partners may be afraid to initiate intimate relations for fear of causing you more pain. This can lead to frustration, anger or a feeling of loneliness within relationships. Talking about this problem can be very helpful; it can alleviate fears, worries or frustration.
You may have to make more of an effort to include physical intimacy in your lives; making those times special by planning an evening out together at a romantic restaurant, lighting candles in your bedroom, or simply by setting aside time to be together can improve your intimate life considerably. If your partner is willing, they might perform a massage with some fragrant oils to help set the mood. Be creative. Just because you have fibromyalgia does not mean that you can not have a satisfying sexual life with someone you love.
Couples counseling can be helpful if you are having difficulties addressing these issues by yourselves '
This article talks about everything in honest way and is very helpful for people living with Fibromyalgia & their families to understand the impact it has on all members of the family.
I would say consider trying to plan an evening for just you two and see if this helps.
If not, maybe it is worth mentioning to the GP to see if a change in medication is needed or even couples counselling as sometimes you need to talk about all the life changes and work out a way to adapt to living with Fibromyalgia.
I hope this helps
Emma
I do understand all this, and it makes sense! but how do you get your partner to understand all that is going on with you without making him feel bad or without making it look like an excuse? cause i have tried and failed so many time that it feels like he doesn't believe i'm in pain just because i look ok, or because I make an effort to keep going and not to let my mood swings affect him and my little one. I mean that sometimes I do feel the sex drive but something gets in the way, for example my little one that still doesn't sleep on her bed and I don't have the strength to force her to... I just feel that I can't win no matter what I do, someone is always going to be unhappy or unsatisfied. We had an argument last night, or better he had an argument, i.e. after our plans were ruined by my sick little one, wich I was still trying to sort and keep on with the plans he just got into bed, so I did the same and 15min after he asks if she's asleep, no she wasn't, 2min. later he asks again and she wasn't and she wouldn't be if he keept asking, but instead of shushing he dicides to have a go at me... I mean but that time any drive that I had had died and all that i wanted was to go to sleep and forget about it, next thing he leaves the bedroom and sleeps in other room. I understand he gets frustrated but so do i, doesn't he see that? or am I selfish or doing everything wrong?
Carla it is difficult I know and please do not feel you are doing something wrong or feel you are you being selfish. I personally think it is a reaction to the situation, that is happening as you both adjust to living with Fibromyalgia. Something that you could possibly aim to work through, but maybe will a little help.
You say you feel your partner does not understand but this may or may not be the case as men react differently, sometimes they think if they act like nothing is wrong it will just all go away. Men are from Venus , Women are from Mars type situation I suppose you'd say.
People sometimes experience different reactions to illness. This article also touches on the fact that you go through stages on a journey to get to acceptance of the illness and you may be further on in the process than he is maybe?
Can you try sitting him down again maybe use information on Fibro maybe explain about the article. Would he go to couples counselling do you think?
Or could you ask a friend to have your little one and maybe spend the day purely with each other? To maybe be able to save energy for each other.
Perhaps look into going away for a night somewhere reasonable?.
Do you think you could maybe try any of these ideas? As I would imagine the rest will all fall into place quite naturally and you may be surprised.
I hope this has helped
Emma
thank you Emma!
I will sit down with him again, hopefully will make a difference this time!
If not ill try to get him to couples therapy.
thank you again,
soft hugs
You are very welcome, Take Care
Hi Carla I can relate to all you feel as my only child ....well he is nearly 16 now didn't sleep through the night ever until he was 10... And until he was four I worked full time, as you can imagine time for us as a couple was limited in the extreme and add into the mix my OH worked late shift and got in a 9.30 some evenings Although planning in advance isn't the most romantic approach.... And my son refused to stay overnight at either grandparents house.. We used to plan an afternoon together just me and my oh. And my mum would have our son for that time, sometimes all we would do is just relax and chill doing nothing but enjoying some time together, sometimes we went out, nothing special and some times we stayed in 
it's not the perfect solution cos I am sure my mum guessed why she was having him sometimes. But it got us through the worst times.... You didn't mention if your OH is comfortable looking after a sick little one, maybe that was part of the trouble last night he felt a little helpless as most sick little ones want mummy... I can appreciate when children are sick they want to be with you but could you and your partner together get her into the routine of getting her into her own bed when she is well, include your partner in this If he is willing that way he will feel reassured that you want to be with him for time for you both in bed together alone and he will feel wanted... It's amazing how men can feel pushed out but of course never actually say so.... No matter how many times my son got up in the night or woke up one of us would go to him comfort him but we put him back in his own bed each time.. It was hard but eventually he settled down quicker and quicker each night, so although we never had an unbroken night we had time together in bed alone.. Hope you don't feel like this is a parenting post, just having been in a similar situation to you I am hopefully reassuring you if you can explain to your partner you aren't 100% and would love him to help you get your little one into her own bed every night so you can spend time together...
My OH and son bonded so well through this that sometimes I got the extra rest needed cos they would spend time together when my OH wasnt working lates and then we had the time together once he was in bed
Hugs VG x
Hi Carla,
I do sympathise with your situation. To be honest, just having a two-year old is enough to finish most people's sex lives - without having fibro on top of it all!
I like Emma's suggestion that you try to get a baby sitter on a fairly regular basis, so that you can enjoy some private time together with your OH.
When you sit down to talk with him, I think you should be very open with him about what you might expect him to do in practical ways.
Men are not very good at emotional things or feelings, but if you tell them exactly what you want them to do - they can cope with that!
Tell him also that you're not interested in who's fault it is - just solutions to the problems, and that might avoid a row.
It's worth pointing out that in a relationship, you have to help each other - and sometimes one partner needs more help than usual. At the moment it's you - but what if he fell ill? I presume that he would expect your help and care, and of course you would give it!
Do stop feeling guilty, because you are not to blame - learn to be a bit more selfish, and try to develop feelings of entitlement to what you need - as the lady says: You're worth it!
Love Moffyx
Not much chance of that here right now. If I am in low pain and try to get frisky I end up having a coughing fit with the lung disease instead. A right passion killer I can tell you. So I may have to resign myself to the fact the honeymoon is finally over after 26 years and keep taking the Amitriptyline. But sometimes it is hard for a partner to understand the effects fibro has on the things they expect to carry on as normal. A FMS sufferer can be left feeling that they are useless on the romance front and this just makes things worse. If you can talk it through again then great. If you can print of some FMS info, even better. Good luck xxxxx
Hi yes I've had problems , some times I just feel so tired I have no interest at all. When I'm interested my partner isn't, seems I can't find a happy medium most of the time. I don't don't get stressed about it tho because if I do it jousts adds to the condition. X
What sex life. What doesn't hurt doesn't work as they say. Celebate and have been for years. What with the weak bladder as well really not able to get interested. Add the fatigue and would rather have a book and a cup of cocoa x
It really can be both difficult to have sex while afflicted by the condition, and difficult to make a partner understand the difficulties you face (or worse, for them to "care" about your limitations).
I can't help much, but my partner and I still enjoy an active sex life by:
Perhaps most importantly, lay back and do nothing that is uncomfortable while your partner performs significant foreplay on you. This activates the arousal brain chemicals and gets them flowing, which I find can help block out the impact the medical condition has on supressing the sexual appetite. After a period of receiving foreplay, I am often able to perform at a much higher standard than I could of had I received no fore play.
We also structure our schedules so we are free and availible at the time when the balance between medication anti-erection and pain-sex-suppression is at the most conducive point to have sex.
And sometimes,I take small dose of pain killed (but only small, medium or larger doses can supress sexual urges) just before having sex to ease the pain a little.
Although embarrassing for some, definetly talk to your doctor about this as it serves two purposes:
1. He may be able to offer you solutions to help resolve this issue (I do know of males whom struggle to perform due to using amiltryptaline being prescribed viagra which has improved their performance significantly and icreased both his and his partners sexual satisfaction.
2. It will help the GP understand just how pervasive this condition is, and the severity of the effect on your life, which he (unfortunately) may not yet fully understand.
Best of luck,
John
I have problems too, at the age of 20 its rather gutting. Luckily my boyfriend understands which is great and if am in alot of pain one day he will give me a massage instead which is nice. This is usually after ive been to the gym. But I understand what you mean by what sex life , its only just getting on track again after 18months, of been on medication after medication and doctors not listening, but this is definately a problem i wouldnt want to discuss with my GP.
Hi everyone, just as a follow-up on this, I found an article that can help us to explain our situation to our friends and family. It is called the spoon theory, and in this case is about lupus but it can be related to us too!! Have a read
The Spoon Theory
by Christine Miserandino butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
I hope this helps those in pain who have a hard time finding the right words to explain why they don’t feel good.
Thanks for reading.
Hope this helps everyone as it has helped me!
soft hugs xx
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