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Adrienne Dellwo

Your Sex Drive With Fibromyalgia & Chronic Fatigue Syndrome

By May 16, 2011

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You're tired. You hurt all over. Exertion can wipe you out for days. When you have fibromyalgia and chronic fatigue syndrome, is it any wonder your sex life isn't great?

On top of symptoms, many of us are on medications (such as antidepressants) that can lower sex drive, and these illnesses can put a big strain on our relationships. It all leads many to assume that sex is just one more thing illness has taken away.

One reader, however, wrote to me recently about how her sex drive came back rather suddenly. She said:

"It† has been quite a while since I have even been interested in sex, due to medications they give me for all my conditions.† However, recently I had a pap smear and the spectrum being inserted, and staying in a while, along with smears, seemed to have stimulated my sexual drive. Have woman found that if they have sex, they are more responsive the more frequently they have it?† Thinking about the problem -- the radio tuner up high with fibro, perhaps that doctor's visit turned up the radio in an area that had not been tuned recently, if you know what I mean.

I would love to see a segment about sex, sexual desire (increase or decrease and why), and forms of stimulation that your partner can help with (and do not irritate you to death) to get the mojo started."

My experience was nowhere near as dramatic, but I can say that early in my illness the drive was essentially gone during flares and definitely took a dip in between flares as well. But once my husband and I figured out how to deal with some of my issues, especially tactile allodynia (pain from gentle touch), and we were able to increase frequency, my drive did return.

I think one of the biggest problems we faced was fear. I feared putting myself into a flare by over exerting myself, and he was afraid he'd hurt me. It took time and patience for us both to be comfortable again.

Some ideas for bringing sex back into your relationship include:

  • Clear communication: Your partner needs to understand the symptoms that are limiting you in order to accommodate them.
  • Experimentation: Would certain positions mean less pain for you? Would certain activities be less likely to trigger post-exertional malaise? Read a book or two if you need ideas.
  • Patience: You may need time to re-build your libido, your comfort, and your trust in each other.

My About.com colleague Cory Silverberg, Guide to Sexuality, has a lot of great information that can help you. He's got an entire section devoted to Sex & Disability, one on Talking About Sex, and another on Sex Positions. I hope you'll explore these areas and find the information you need.

Have you said good-bye to sex? Would you like to see it come back into your life? Have you found ways to make it work for you? Leave your comments below!

Learn more or join the conversation!


Photo © Comstock/Getty Images

May 16, 2011 at 11:41 am
(1) skS says:

I have another possible interpretation of the story; could it be because the speculum was inserted and then left there a bit.

There is always some pain for me with intercourse. I find that afterwards, lying with my husband, still aware of our bodies together, but without motion (which is what causes pain for me) – I can experience intense pleasure. I assume for me that when there are no longer pain signals I am able to experience the feel good signals.

May 17, 2011 at 3:34 am
(2) Loops says:

I find that to begin with I can’t get in the mood, but with a little extra “help” (ie. Lubrication!) I can, then once I actually achieve climax it is better than any pain killer due to the endorphins released :)

May 20, 2011 at 3:36 am
(3) Timber says:

My biggest problem is the allodynia. Hard to have sex when touch hurts. I also tend to be a bit small inside. That was always a bit of a problem before I got sick; I had to remind my partners not to go too deep, or they’d hurt me when they hit my cervix. But with the fibro, it’s ten times worse.

I’ve pretty much given up on sex as a physical activity; and mostly have moved it to a brain activity. Which, considering the brain IS the biggest sexual organ we have….I fantasize, I read and write erotica. Now and then, depending on what my current fibro situation is, I can masturbate. But that’s about it. Of course, I notice that it’s easier to get into the mood before my period.

It’s such a personal topic, but it’s one I think we need to be able to discuss. Sex is a part of being human. And plenty of studies have shown how it’s part of being a HEALTHY human.

May 20, 2011 at 3:53 pm
(4) aidan walsh says:

i guess i am fortunate to have always kept my sex drive and is always ready to go…there is not a morning i do not wake up without it staring in my face lol lol but at times with this illness you just could not care if you ever had sex again and when the headaches are there or blood pressure is falling you just say i do not care for sex now but just want a dark peaceful room to lie down in…i am glad i do not take any antidepressant drugs or tranquilizers and sleeping pills…i do not believe in wacho drugs at all for cfids…i still make sure i drink tons of water daily and celtic sea salt with chlorophyl and vitamins/minerals…now off completely prednisolone since april 30th and hopefully never again any meds…

May 20, 2011 at 7:05 pm
(5) Lynn R says:

I did experience an almost total loss of sexual desire at first, but with time, patience and a few hot and steamy romance novels, I find it increasing. For me there is initial pain and my husband and I have learned that if we simply lay still for a few minutes this initial pain goes away. I do have to use a lubricant now, which I never did before, but that’s simply to “prime the pump” so to speak. I’ve found that once my husband talked openly about this problem, we were able to solve it. Initially, because I was in so much pain all the time, he was so afraid of hurting me that it killed his desire as well. But fortunately there are several great resources out there for us which weren’t available even 5 years ago.

May 20, 2011 at 7:08 pm
(6) Carol says:

Lyrica will make you a sexual vegetable. Nothing will stimulate you. I quit taking it & OBGYN suggested taking Wellbutrin 150SR & got my life back. Also lost about 20lbs that Lyrica put on me. Recently started taking Neuronton & got relief from night-time pain.

May 20, 2011 at 8:51 pm
(7) Robyn says:

I think it is an important topic for discussion as sexuality is a part of being human and it is there for our life time. I have vulvadynia as well as CFS(ME) and fibromyalgia. Initially this was so very challenging. My husband and I communicate very well and he is very gentle and caring and he did not want to exacerbate my pain.
It has taken a few years to adapt a routine that works for us and that is preparation. We make a time on my good day and we set the mood with candles and music. I stretch the vagina with three test tubes lubricated with vitamin E. Each test tube is incremented in size. I do this stretching regardless of sex every two to three days. I find the day after stretching is best as then I do a brief stretch prior to sex and I have also taken a mersyndal forte an hour and half plus one 25mg voltaren and then the most important aspect is to make your vaginal muscle relax. It can be done and then I experience no pain or sometimes very slight pain which does not impact on the experience. It has been well worth the effort of following this regime as being close, intermate with each other is a loving experience. We have been married 43 years. Hope this helps anyone out there experiencing difficulties.

May 20, 2011 at 9:31 pm
(8) edwards29 says:

I’ve always had a low sex drive, even before I became symptomatic with CFS/FM in 1974. My mother told me my dad’s sex drive was fairly low, and my mother’s side has neurological problems. Maybe I was predisposed to a low sex drive through either or both of them. My disease is progressive, and as I’ve grown older and more ill, my sex drive has dropped to near nothing. A total hysterectomy 14 years ago, ovaries et. al., really put a damper on things, too. I don’t even care to go out to try to meet men anymore. Of course, I’m 65, so maybe some of this is age, but I rather doubt it. Think the tendency was inherited – along with the CFS/FM tendency.

May 21, 2011 at 6:25 pm
(9) donnak says:

I’ve struggled this issue, especially since I went through menopause a year and a half ago. While my sex drive had already dropped with fibro, I had never before had pain with intercourse, and now I sometimes do. I’ve found that using a precription hormone cream in my vagina 2x a week (not before sex!) does help–I have more lubrication and in the long run it keeps my vaginal walls from thinning, a long term problem for menopausal women. I’m very grateful for the suggestion about stretching out the vagina before sex–i think that makes perfect sense!

I’m also a big proponent of masturbation. Not only does it release endorphins (!), but I think it does keep me interested in sex and my body more ready for it. As Ann Landers always said, “use it or lose it.” Reading naughty books (and sometimes writing erotica) as well as looking at Japanese erotic woodblock prints (I’ve never liked dirty photos) has always turned me on, and it still does, and I think this is a good thing. I’m not ready to give up sex yet, although I understand and respect others’ decision to do so.

May 22, 2011 at 12:48 pm
(10) Justin says:

I’ve been waiting for this subject to come up for a long time. Before I developed CFS over 4 years ago you could say I was a red blooded 30 something enjoying life to the full. Since then I have suffered low sex drive, erectile dysfunction. My girl friend at the time was not very understanding and we soon split up. Recently I have been prescribed anti depressants to help with sleep which has made the situation worse.
I can honestly say that this has had a major effect on my confidence as a man.
I donít know if this is caused by lower Testosterone levels or some interaction between Immune, Nervous and Endocrine systems?
Hopefully one day this will sort its self out?

June 25, 2011 at 8:08 am
(11) Autumn says:

Just about every antidepressant messes with your sex drive. You men have much greater levels of testoterone. . You could have low T. The CFS or Fibromyalgia …you are tired all the time. There is an old antidepressant called Deeryl or Ttazadone…side effest is sleep..can cause priaprism in men. I take Prozac and Sex ..more foreplay …takes a little longer. Antidepressants affect the same part of our brains that deal with sex. I have been married 30 years . My husband and I have worked to figure things out. I have or had endometriosis and sex was very Painful. We used our imaginations, because I knew it would help us both and our relationship. I know a lot of men will not take the antidepressants due to the sex thing. It is a catch 22.
Research and learn as much as possible.

May 22, 2011 at 1:52 pm
(12) Kristine says:

I’ve had FM since I was 16 y.o. and am on many libido killing medications. A few years ago my low sex drive almost destroyed my marriage. What I have learned: don’t stop having sex! You can not have a good relationship between husband and wife without being intimate. Also, I find that if my husband gives me a massage first it is a big help. Lubricant helps, and I often find that even though I really wasn’t interested before, I can actually enjoy sex if I jump in and am honest with my husband about my pain. I also like my husband to be very clear about his intentions as far as sex is concerned. This way I can take pain medication to prepare myself.

May 24, 2011 at 10:51 am
(13) lazy may says:

Im so glad to hear Im not the only one who can live with out sex! I have a very understanding partner.I have found that any thing to help relax before intercourse helps alot.

May 25, 2011 at 11:35 am
(14) Mal says:

I lost my sexual desire several years before I was finally diagnosed with fibromyalgia (even before it was a recognized disease [1988])causing me to lose my first husband. I got married again and am again divorced because husband #2 never made an effort to understand FMS. I certainly don’t miss having self-centered men in my life.

May 27, 2011 at 9:13 pm
(15) lara says:

My sex drive goes up off the charts when i get sick..the sicker i am the higher my libido..when I was really sick all i thought about was sex,literally..it was crazy how much i thought about sex..coincidentally the only thing that helped the pain was sexual stimulation..effexor which affects seretonin and the seretonin dopamine balance control my fm now, it also reduces and sometimes kills my sex drive and ability to get aroused

July 20, 2012 at 7:37 am
(16) Lady007 says:

In 2009 I suffered a severe case of the mumps and was hospitalised. While there I went to the bathroom and an old tampon fell out. I was terrified. I had left it in a whole month. I took it out and didn’t tell anyone. I was so embarrassed. I slowly recovered from the ‘mumps’ and fell pregnant 3 months later. I had a pregnancy from hell and suffered with SPD and general feeling of being unwell and achy most of the time. I ended up having a c section which got seriously infected and was bed ridden for 3 months. 5 lots of anti biotics later abbot cleared. I suffered with ‘post natal depression’ but came in zoloft after one year as I felt really odd on them. Anyway, now! I’m sick every month with one infection or another and always suffering with the ‘flu’. I’ve been to the dra every month nearly for the past 2-3 years with something. I’ve not had sex with my husband in a year as u find it painful and to be honest can’t be bothered as in exhausted ALL the time. I have my own business and a 2 year old and blamed that. I recently read an article idle CFS/ME an TSS and felt like I was reading about myself. I finally took myself to the dr yesterday and broke down with my list of problems I’ve kept to myself for years. Blood tests were taken and maybe get to the bottom of this. I’m so worried and down about my health. I dont know where to turn. I just want to feel like I did 3 yrs ago. Healthy fit active and happy.

July 21, 2012 at 10:16 am
(17) Maria says:

This is such an important topic but there are so few responses! I think that even though we are anonymous here, we still have our culture’s embarrassment and shame in talking about sex.
I had a great sex drive until all sorts of physical problems came crashing down on me at once. I developed frequent horrendous migraines and was treated with “preventive” drugs that made me fat and sexless. I then developed CFIDS and the exhaustion was so severe I only fantasized about laying in bed! Then I went through menopause 11 years ago which has been a nightmare. I developed depression so severe I wondered how I would make it every day. Again lots of drugs which have been helpful for the depression but certainly not for sex drive.
My husband now says he is too old (70) for sex, he learned to stop caring about it during all these years of my illness, and I am just “too tense” for relaxing sex. I feel like a born again virgin. It’s very depressing. He hates to even talk about it and gets very upset if I try to. Perhaps with time and if I persist, but I really don’t know if we’re ever going to work this out……

August 27, 2012 at 3:56 am
(18) Jenna says:

I always had a very high sex drive. My husband went on Coumadin for blood clots in his legs & not only lost a bunch of his hair quickly, but his sex drive too. It frustrated me so much. Then I had a mega flare of an inflammatory arthritis disease that has seriously affected my back & hips & I developed Fibromyalgia too. Then I was even more frustrated. My husband was afraid of hurting me, & sex was very painful due to my back & hips. We did discover positions that worked better, but there’s very few. Sex became much more routine & less spontaneous.

The pain, the change in lifestyle from Supermom of 4 kids, to being practically housebound, was too much & I became very depressed. I went on a SSNRI & it totally robbed me of my sex drive. In some ways it’s a good thing. I’m not so frustrated. On better days I try to initiate things with my husband, & he usually responds well, but we certainly don’t have near the sex life we had 5 years ago, before I was diagnosed. I miss the intimacy. Even cuddling is problematic on my normal to bad days. My arthritis disease has affected nearly every joint in my body & I also have a lot of bursitis & tendinitis issues. It’s difficult to find a spot that doesn’t hurt on my bad days. I also have the problem of skin pain with the FMS. I often feel like I have a bad sunburn over most of my body.

I remain hopeful that better treatment will come along that will help me, & others with crazy autoimmune problems.

July 5, 2013 at 5:56 am
(19) Will says:

Hi This is a very interesting Forum, currently my wife suffers from CFS and Fibro. When we got married sex was great, as time went on though her sex drive diminished some what which is challenging for me as i have such a high one.

we had a baby 6months ago which doesn’t help her sex drive and has proven challenging to be close at all….., what can i do to possibly get her going it feels like i cant do anything to get her interested at the moment, i know taking care of our baby takes allot out of her, i just wondered if you guys have any advice?

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