Sex and Fibromyalgia
Let’s talk about sex and fibromyalgia
Can I ask you something? Do you still…? I mean are you still having…? Do you and your partner still have sex?
What did you just say – sex? Oh my, I don’t even have time to think about that.
Really, you don’t?
No, I am in constant pain, have so many doctor’s appointments and I don’t feel comfortable with my body. I mean…
So, you don’t miss it?
Sighs.. Maybe, maybe I do, but I can’t imagine how and I have almost forgotten…
Does that sound familiar?
How it used to be
I recently watched the film Barefoot in the Park (1967) starring Jane Fonda and Robert Redford with my husband. I loved Jane Fonda in it. However, I remember thinking whilst watching her trying to get her husband’s attention with enviable hip movements and an enticing Baby Doll Negligée: I couldn´t muster up that energy. And if I did I would have to pay for it.
The mere thought
That is not just because I am fifty seven and she was in her twenties at the time. Suffering from fibromyalgia, Lichen sclerosus and Pseudotumor cerebri amongst other illnesses doesn’t bode well for hot sex or even any sex at all. The mere thought of sex hurts.
Later in life
In 2017 Jane and Robert teamed up again in the film Our Souls at Night. (Trailer below) And as the critics said, “It was worth the wait:” This film is not about raunchy sex it is about loneliness, particularly at night, and a very subtle but moving romance. They were playing a couple in their seventies and were actually around eighty. I can relate to a lot of the lines but – no spoilers – watch it!
Where I see myself
I would like to be somewhere on the spectrum between these two films, for I cannot say I have no desires at all. I would like to find an intimate relationship with my husband that is doable despite, pain, discomfort, despite almost being afraid of sex now. And it definitely wasn’t always that way.
Did sex just fizzle out?
A lot of couples without chronic illnesses are happy to have little or no sex after a certain amount of time together. They focus on other things in their relationship like mutual pastimes.
And the same goes probably for those relationships where one does suffer from a chronic illness. Sex as an activity just seems to fizzle out. Some think they are fine without having sex and sometimes realize that that isn’t true, they feel something is missing.
I probably belong to that group. I am so good at adapting to new situations and very often forget to ask myself how I feel about them. Others don’t know because they don’t think about it let alone talk. There is certainly no reason to feel you have an inferior relationship if you are not having sex (because you think the rest of the world is) and you are both fine with that. It is a tricky subject. It is really easy to get cold feet when thinking about having that conversation.
I think the most promising way to go with it is not beating around the bush but being honest, open, and direct. It is best to try and choose a good time for this conversation. Last year my husband and I went away for a weekend to a hotel we know well after the lockdown was eased and that was possible again. No, no, not what you might be thinking. The idea was to have some time to talk about our relationship without being distracted by daily life. It worked much better than we both expected. Sex wasn’t amongst the topics. So, it looks like we will have to be going again. Well, you don’t need to go away to talk, but try and create a situation where both partners are not stressed and distracted. We did the talking in the morning and enjoyed the rest of the day as well as we could rewarding ourselves for the Work.
Feeling close again
Clinical psychologist Sheela Raja, Ph.D., an assistant professor at the University of Illinois at Chicago suggests the following opening line: “I know I’ve been dealing with fibromyalgia pain, and I want to talk about ways we can still feel close to each other,”
Emphasize that “what’s holding you back is fibromyalgia, not your feelings about him or your sex life,” Raja says. If you ask your partner to help you in finding a way to address these setbacks it may break the ice a little.
But first things first!
what about Fibromyalgia kills the desire to have sex?
Well that’s a no brainer isn’t it?
I am sure you can think of many answers why sex and fibromyalgia just don’t seem to go together.
To start with, how can you imagine feeling in the mood, when you are exhausted and in pain?
Secondly: medication. Fibromyalgia is often treated with an antidepressant on a low dose. The side effects of some of these medications can be dampening your libido.
Thirdly, perhaps you feel unhappy with your body that might have changed during your illness. Some medications cause weight gain. When you are in constant pain you don’t walk through life lightfooted. The constant muscle tension may also change the appearance of your body.
I know I am often surprised when I see a picture of myself or catch my image in a shop window. Inside I am the person I have always been. We shouldn’t feel like that though. It is really important to have a good relationship with your body and realize that it is doing everything it can to make us feel better. We focus on a lot of things that don’t function any more, but so many more things still do. The way you talk to yourself changes the way you feel and the way you look, because your brain pays attention to what you are saying and reacts accordingly. If you look at yourself and say “I feel ugly, your brain will take that message and induce matching behaviour.
Randy A. Fink, M.D., medical director of the Miami Center of Excellence for Obstetrics and Gynecology puts it in a nutshell: “Your brain is the biggest, strongest, most sensitive sex organ when it’s focused on pain, it can’t handle the task of igniting desire.”
So what can you do to rekindle the cinders?
Have you heard of the Kamasutra? There is probably no other Indian book of classical literature that possesses a kind of magical charm and conjures up images of positions in which noblemen enjoyed sexual pleasure with courtesans and wives. And if you looked at them you may be reminded of acrobatic moves you have seen in a circus, and feel sure: with fibromyalgia no way – not even if I wanted to. Well, you can breathe out now because I am not suggesting that you do. I am not a sex therapist. My point is, although we live in quite a free world our conception of physical relationships are very much formed by what we see in films, on television, or read in books and that’s not it – there are so many ways of finding a good relationship with your body and finding the kind of intimacy that works for you. Just like in every other aspect of chronic illness – you need to find your own way: What form of nutrition works for you? Eating and Fibromyalgia What movement, (I say movement instead of sports) works for you? Movement and Fibromyalgia What kind of daily routine works for you? And how can you feel good with intimacy?
The word Kama means the sense of well-being that comes about when being intimate, which can only arise through empathy, mindfulness, and deep meditation. Only if we care for our state of mind, can we feel the good energy in our bodies. Now, this may be too much for some and not everybody’s cup of tea but bear with me. Having pain means we need to care for our state mind and look after our symptoms. Most chronic pain sufferers have tried some kind of relaxation technique. Do what works for you. If can get in and out of the bath, have a relaxing bath, or have a warm shower for example. I am sure you know many methods of relaxation.
Step by step
Let's talk about sex
It’s best not to start talking about getting intimate again when you are in bed. Doing this can put a lot of pressure on the conversation. Do it on one of those better days, when you haven’t had any doctor’s appointments or difficult situations to manage and have less pain. Of course, it is difficult to plan when that will come together. It can be liberating for both concerned to talk about their fears, their frustration, their emotions. You might find that once you have found the courage to raise the subject, your partner doesn’t want to talk about it. Just starting the conversation with your partner by saying that the symptoms of fibromyalgia make it difficult and you would like their help in finding a way to become intimate that is doable for both, could be an example for a door opener.
It's not an audition
If sex is something you haven’t thought about for a long time, you’re probably hardly going to jump in at the deep end. Although sometimes that works too because your bodies remember more than you do. However, as I touched on before, having intercourse is not the only road to take towards intimacy. You can take baby steps and build a bridge by watching a romantic film together or just talking about sex without doing anything.
When you get to the point where you want to try out being intimate again, then talk about the sensitive and places on your body that hurt. Be careful not to make this worse, use pillows and positions to find more comfort. Remember we are not auditioning for the film 9 ½ Weeks we are taking it slow.
Find your way to relax
If you are completely tensed up and in pain, intimacy is surely not the first thing that comes to mind. A good start is to try and get relaxed. This alone can be a tall order, I know. Apart from having a warm bath or shower, you can try other things like yoga, restorative yoga, meditation, Qi Gong, Tai chi, some very gentle exercising to get un-stiff. Whatever you have found works for you is good.
It starts with a kiss
Once you have crossed that border of fear and your body has remembered, try and stay focused on pleasure. It isn’t like it used to be. You weren’t really expecting it to be, were you. If you are communicating with your partner more intimate situations can become much less intimidating. Make a note of and get to know the times when you feel less encumbered by pain and can relax. Being intimate is a kind of therapy, and that can all start with just a kiss. What kissing does to boost your health
Sex nurtures your relationship and you as it releases endorphins the body’s own painkillers. No side effects!
How about us?
You may be wondering if I take my own advice and may think I make it sound too easy. This advice doesn’t just come from me but also from the sources cited below.
I find talking about sex and intimacy difficult, it used to be easier. I am kind of getting in the ring and feeling a little scared. Here’s the thing: a relationship around chronic illness is hard, for all concerned not just the person that has the illness. Anything that helps you feel more comfortable in your relationship makes it stronger and more supportive. Whether that be including sex or finding other ways of enjoying closeness. Everyone’s journey is as individual as they are.
Quite apart from the chronic pain there can be many other reasons why sex can hurt. It can be very helpful to talk to a gynacologist about these problems. If you suffer with Lichen sclerosus you can find more information here Lichen sclerosus
Don’t just take it from me
Dr. Jordan Rullo, PhD, ABPP, CST is a Board Certified Clinical Health Psychologist, Certified Sex Therapist through the American Association of Sex Educators, Counselors, and Therapists (AASECT), and Certified Gottman Therapist. In this video she talks about Fatigue, Fibromyalgia, ME/CFS and Sexual Health. I think it is well worth watching.
If any medical questions arise through reading this post or watching the video please discuss them with the medical professional caring for you.
The lecture is hosted by the Bateman Horne Center, which is dedicated to research on ME/CFS and Fibromyalgia.
Finding a support group
Depending on the level of trust, you can talk about intimacy in your support group
Zelman, D. Z. (2020, 16. Juni). Fibromyalgia and Sex. Abgerufen am 29. April 2021, von https://www.webmd.com/fibromyalgia/guide/fibromyalgia-and-sex
Roberts-Grey, G. R.-G. (2017, 17. November). Don’t Let Fibromyalgia Ruin Your Sex Life. Abgerufen am 29. April 2021, von https://www.everydayhealth.com/fibromyalgia/dont-let-fibromyalgia-ruin-your-sex-life/