How does Chronic Fatigue Syndrome/M.E affect your sex drive?

I've just left a message in another thread (titled "constantly tired") discussing M.E/Chronic Fatigue Syndrome and found that there are other members in the forums that suffer from M.E/CFS like myself!

I've always wanted to ask other sufferers how it affects their sex drive? But as the clinics and support groups I've attended have always been with much older individuals, it has never seemed an appropriate subject to bring up, but I've always been curious!

I have a very high sex drive-now I suspect this runs in my family and there are many factors than can affect sex drive of course, so it's possible that it's entirely unrelated, but I have always wondered if my insatiable horniness is anything to do with the illness. I have had M.E/CFS since about 14/15 years of age (before the development of any sexual feelings), so as I matured sexually while being ill, I have no "before and after" period to compare it to and observe any effects. So, as a sufferer, how do you find it affects your sex drive if at all?

If contributions could be from fellow sufferers/former sufferers/those who have close connections with suffers only, that would be very much appreciated

Thanks! X

Greetings Yummybunny :)

I myself was diagnosed with M.E. a year ago after having symptoms for a further year before that, so about two years total. I was sexually active before that so I can give you some information (at least personal to me) relevant to the area.

Firstly with regards to sex drive, I don't find that it has changed much, but there are caveats. For example, the rate at which I might find myself 'horny' or thinking about sex has not really changed since I got ill. If there has been any change it may have been finding myself more frequently thinking about sex, but I think that is more due to the fact that I am not working so I spend a lot of time sitting around the house with my own thoughts and this would lead me to thinking about sex more often.

Now for the caveats: having chronic fatigue means that I don't have a lot of energy to spare, and as I'm sure you know, the more energy I spend the more I pay for it later. It depends on whether you're talking about being single or in a relationship, when I was single I was not going out frequently or meeting people because of my illness which affected the amount of sex on the one hand, or if I was going out I wouldn't have the extra energy for going after girls and so on. That's not to say it never happened, but it was very rare. Being now in a relationship that isn't so much of a concern but there are effects there too, in that sex is no longer as athletic as it used to be before I got ill, and I have to take breaks and sometimes I'm simply in too much pain or too tired to attempt sex at all. Thankfully my partner is very understanding and we only see each other once every week or two so it's not as much of an issue as it might be with a less understanding or more 'live-in' type relationship. Plus with a reduction in athletic sex comes a more slow and intimate way which is not inferior.

So for me, no it doesn't really affect my sex drive very much, but it does affect my sex life, but with an understanding partner and some effort to budget energy for sex and so on, it isn't as horrendous as it could be.

(Also I wouldn't be so quick to think the elderly M.E. sufferers aren't having sex, as far as I understand the elderly are quite capable of banging each other as silly as we young folk are)

Take care

A x

I don't have CFS or ME but I do have a condition which has considerable overlap of symptoms.

My symptoms are chronic pain, chronic fatigue and I also get dislocations and injuries as well as quite bad nerve damage and other things. So an extra layer of symptoms (although I know pain can be associated with ME/CFS) but I'll try and talk about those that are related to the fatigue (I can't have penetrative sex right now due to nerve damage but that's almost certainly related to the pain part of my condition).

In terms of my libido - my sex drive is low. Partly due to taking the pill, partly due to being too exhausted for sex a lot of the time, partly due to sex requiring more effort than my body is always capable of, partly due to feeling inadequate for all of the reasons above.

In terms of physically having sex - I'm quite capable (apart from penetration) but my partner does have to put up with me falling asleep mid blowjob from time to time. It upsets (and hurts - my teeth clamp when I'm tired/sleeping) him but he's learnt to deal with it so that I don't feel completely inadequate.

All in all, I have sex every day at most, every other day at least (and once or twice a week during a flare up or very stressful time) so I still have a great sex life but there are ammendments that have to be made. Like you, I have had symptoms since I was young. Probably since I was starting secondary school and worsening at around 14 so I can't compare before and after but I do know my sex life isn't "normal".


Thank you both for your responses Alex and Alicia!

I agree Alex, I think part of the reason I find myself so "horny" is because I'm at home all day (as I am also unable to work), so of course your mind goes off to fantasizing about more pleasant escapisms. I think in that regard, sex is kind of like a drug for me. Where I don't have a lot going on in life, sex is often the most exciting activity I can take part in (when I can get it!). IIt makes me feel like I'm actually living for a change and not stuck in the circumstances that I am. I get really excited about it and look forward to it. My former partner actually complained that I was harassing him for sex too much during our relationship lol! (Though we did have very different sex drives to begin with I think).

But indeed now I have been single for a while, it is unfortunately a rarity. As you say, it's not like we have the energy to go out on the prowl every night! But then, that's never been my style anyway. But even though I'm not into one night stands myself, being stuck in all the time doesn't exactly create the best circumstances for meeting someone!

Oh and I have no doubt that older people have sex (I certainly plan to when I'm older!), it's just because the age gap between them and myself was so big, it automatically set the social roles between us as being like "parent/grand-parent and child/grandchild", so I was a little too embarassed to ask lol! Every single one of them was married as well and had all been with their partners long before they ever got M.E/CFS, so I didn't have anyone to identify with my experience of being a young, horny, single sufferer. I couldn't discuss the difficulties of dating with CFS for example, or long bouts of sexual frustration and loneliness.

Oh Alicia, I am so sorry to hear about your additional difficulties, that sounds tough. CFS is enough for anyone to deal with as it is without anything else on top! You must be a very strong person indeed! I understand how it can knock your confidence. I must admit I usually let the other party do most of the physical effort, and although I would quite happily have sex 3 times a day if I could get it, I'm sure in reality I would be too exhausted at times (not to mention that would get kinda sore haha). I think the only reason it's one of the exertions I can nearly always manage is because the excitment gives me such an adrenaline boost. I must say orgasming is the only thing that raises my energy levels, so I feel much more awake afterwards (I know it has the opposite effect for men Alex). Also one of those things that I was too embarassed to mention at the hospital group when the subject of "what therapies work for you" came up ("um...masterbation?"...I'm sure I would have recieved funny looks haha!). At least you're getting a lot more sex than I Alicia! ;)-good on you!

It's great that you've both found understanding partners :). Something I am still on the hunt for!...Oh the joys of internet dating...Still that wasn't around 20 years ago, and then where would we be!

Thanks for taking the time to reply X

i have the same fatigue rates as ME/CFS but have dyspraxia instead. ( both ilnesses are quite often linked in sufferers. personall i get the foggyness, tiredness and aches of MS with adittional balance and coordination difficulties)

sex wise when im tired/ fatigued i just cannot be bothered with anything other than sleep. im lucky in that i dont have a partner atm so its not too bad, im not needed to do things when im tired i dont particuarly want to

the disabilities i have affect muscles so i cramp easily and can tighten up unexpedtedly during sex, so it takes someone very understanding if i need to take a break on penetration. it also affects what positions i can do

positions like girl on top are often not that sucessful at i tire easily and if im suffering a fatigue flare im just totally fuzzy and dizzy mentally. i've never been able to get my hips at the right kinds of angles.

fatigue flares affect my memory too so when i was on the pill i'd need reminders to take it ( swapped to the implant for that reason) and it'd be almost like i was drunk - slurring words, forgetting where i am ect

i also have sensation problems so need to have joint and circulation checked more reguarly if im doing bondage or something where movement is restricted

planning is key to things and i need routine to figure out how much energy daily activites will take, this takes the spontieity out of sex unfortunaley. when i get into full time work sex would probably be more likley in the weekends. conserving energy sucks especially the need to sleep imediatley after.

blood sugars are an additional thing for me - low blood sugar means im more likley to crash, so after something like energetic sex i find eating fruit or something similar to help. getting up to go make a cup of coffee and eat kind of kills the afterglow really.

hey yummy i am brand new to these forums but had to comment here despite my shyness at the moment lol. I was diagnosed with fibro/CFS 18 months ago and have had symptoms for 4 years (which shows how long it takes to get to a diagnosis but thats another story :S) but to try answer your question, is there s difference before and after,....yeh there is but for me it was only in the physical sense. So, I still have the same sex drive, still want it just as much as I did and still want to do all the naughty things I can think up, but when it comes down to it often my body doesnt want to play. Obviously the tiredness is a big factor and it isnt usually just a sleepy tired, its a whole body knackered numb feeling where just holding up your arm or leg for a minute and its burning and aching and shaking. but that isnt the worst part for me. The worst part is the pain. The muscle pain is the worst and joint pain. I have quite a few times esp recently, had to stop halfway thru as my hips just...i cant even describe it...but i cant move them without using my arms to lift my leg and im almost in tears with the pain, this occurs about 5/10 mins into having my legs open and ive had to adapt, using different positions for oral and sexual intercourse because, well it isnt fun when your screaming halfway thru for the wrong reasons lol. then of course there is the shoulder and back pain but that usually is either copeable or bad enough to put me off starting sex in the first place.

To be honest the worst part for me is the mental upset. I mean you dont feel like you are giving your partner the time of his life when you are wincing or crying out halfway through, or asking to stop halfway thru any long roleplaying or drawn out sessions because the pain is starting to outweigh the pleasure. I do feel like I am letting him down sometimes. the times where i do try to push thru it and go for it, i regret it the next day when I cant walk :S

Just a cautionary note as well to any ladies with the same problems....a lot of the medication prescribed for CFS/Fibro like anti depressants and painkillers can (and did for me) effect sensitivity, really badly! I was prescribed anti depressants to help with the pain and I lost my orgasm. For months and months I really struggled to be able to orgasm. I thought it was a phychological issue and it really got to me, then while doing research I came across information about these tablets and how one of the biggest side effects was this numbness, loss of sensitivty loss of drive and loss of orgasm. well considering these pills did little for my pain I stopped taking them and luckily over time my senstivity came back but I am still on painkillers that do a similar thing and sometimes I can still struggle, I had to find a balance between taking pills to help the pain but cutting down so that my body wasnt so numb and now I have an ok balance, not perfect but hey what can you do!

but to sum up, before and after = desire and drive still the same, bodies ability to handle the physical side drastically reduced, mentally i have taken a beating (between thinking im not going to be enough for my partner to beating myself up, to frustrations the lot) and if you take medication and are struggling with issues like loss of drive, sensitivity or orgasm check your medication side effects as they may be a cause! but overall I can and do still enjoy sex, just gotta get back on the horse right ladies? lol xxx

yummybunny or anyone else feel free to add me as a friend if you want to chat or rant about this as I feel your pain x

Thank you for sharing your experiences ladies x. I can identify with them a lot!

I would say for me, the fatigue is defintely more cognitive. At my worst, I very much suffer from the mental fogginess, dizziness, poor memory, painful headaches, confusion, word slurring, and overall feeling of sheer exhaustion. While the exhaustion is constant, if I limit my activity and minimise stress as much as possible, (and sleep in to about 12/1pm-I think I need about 10 hours of sleep) the other symptoms tend to subside for the most part. Which is how I have adapted to cope with it-but of course that means pretty much a slow-paced life of isolation and boredom!

The anxiety and stress is a key part of intensifying the symptoms. As M.E/CFS is effectively the result of a highly sensitive nervous system that has become overloaded and conditioned to interpret most stimuli as a threat (triggering fight or flight response and all the accompanying physiological reactions over and over again), I have been working on trying to recondition my body with relaxation techniques, and recondition my mind to interpret and react to things differently (studying meditation and alternative cultures than our very materialistic, fast-paced consumer Western one). It's early days yet and it's VERY slow going. But I do think it is helping. I know that I used to have very painful headaches almost permanantly, whereas now they are quite rare and only flare up at a time of acute stress and lack of sleep.

The physical side of things (in terms of how it affects the muscles) isn't so bad for me. I can be clumsy and wobbly the more exhausted that I am (kind of wondering around like a drunk person lol!). And I do get tingling and aches and pains now and then (had a really strong pain in my shoulder muscle the last few days!), I have low blood pressure and my circulation isn't great, but overall my body is more or less ok, just a little unfit/weak from being too fatigued to exercise. However if I exert myself physically (or rather overexert beyond what I know my current limit to be) then it makes the cognitive exhaustion worse and I can fatigue very quickly. When it comes to sex, I'm pretty much capable of normal physical interaction most of the time, apart from when I'm at my worst, in which case I'd be too exhausted to attempt it anyway! But as I said I usually default to letting my lover be on top!-Or otherwise taking the position of least exertion.

It is a case of energy budgeting. When I had a lover earlier in the year, we would arrange to meet up now and again for a session. I found it actually needed to be fairly spontaneous, as if I knew a day or few days in advance, I'd be so excited and anxious that I wouldn't be able to sleep at night. Which of course lead to me being more exhausted and the symptoms became more intense. Which somewhat spoiled my enjoyment of the experience! It was still enjoyable and exciting by my standards relative to my situation, but I imagine quite a different experience to a non-ill individual's! Also, after the event I'd get that adrenaline buzz from the excitement and relive the event over and over in my mind and then find myself unable to sleep that night either! Which then meant that I would need a full week or so to recover from that session (in terms of pretty much being restricted to staying in bed and perhaps watching a bit of tele). It's frustrating that it feels like we have to "pay" for our fun and be "punished" (I try not to look at it that way of course, but it can feel like that sometimes!) with an energy-debt or "hangover". But we've got to have SOME fun in life, so it's worth it!!!

Blood sugar is definetly a factor for me as well. I always crave chocolate after sex or masturbation. I'm very strict with my diet these days. No caffiene, avoiding sugar and salt, no wheat (I have become intolerant to it since having CFS), no alcohol and I try to only eat wholefoods rather than processed packeged products. And get as much fruit and veg in as possible! (I'm also a strict vegan, but that's more for ethical reasons). In otherwords trying to put as little stress on the adrenal glands as possible and not eating anything that gives you peaks, crashes or digestive problems. I think that has helped too, I'm certainly healthier for it anyway!

I too cannot orgasm during sex. But I put that down to having had my first orgasm with a vibrator and continuing like that for years before ever having sex. So I think I'm just quite de-sensitised. (I'm not on any medication-but thanks for mentioning that, as it would make me think twice about taking any!). I think as well I'm quite self-concious and anxious and concerned about performing for and pleasing my partner, so I'm often not relaxed enough to feel physically aroused (even if I'm very mentally "horny"). I need to feel very secure with someone and fully accepted by them to be relaxed enough for that to happen (and for them to be very generous with foreplay!). Which is why, even though I was lucky enough to have some very exciting sex with a casual lover earlier in the year, I was really waiting for us to become a couple before I felt I could "let go" with him. Which never happened unfortunately-and sadly I think that is down to the fact that I have CFS!

I do worry that it does put people off. At least, new people who have only just met you and don't really understand what the illness is. Unfortunately I can't party all night, go to festivals or go backpacking, participate in high-exertion sports etc, so I can't keep up with someone who likes to do all those things. I would never stop them from doing it just because I can't manage it, but obviously if they're looking for a partner to share in those kind of experiences, then I can't fulfil that for them. It takes away some of the adventure I suppose. Whereas what I need, is more of a slow-paced lifestyle with someone who's happy just hanging out together for intelletually stimulating conversations, laughter, movies, walks, and lots of cuddling and sex! lol. With fun days out now and again rather than huge excursions. Makes me sound middle-aged I suppose lol. Anyway I shall stop rambling now! X

My doctor told me really the only difference between diagnosing fibromyalgia and CFS was based on which effected you more. If it was the fatigue then you had CFS if it was the muscle pain or pain in general then it was fibro. So it appears they both have a lot of crossover symptoms. I can really sympathise and relate to everything you just said and I have been there too. I had an (ex) partner list "the fact you cant go out very much or do anything too physical" in his reasons for finishing with me. Which hurt a LOT. I got the last laugh when a few weeks later he was begging to get back with me but still, it really hurts when you know yourself how limited you are and it frustrates you so much, but then to have someone you love point it out to you as a reason not to be with you pffft! I am the same as you, I am a giving person and want to please my partner so yeh I feel like a let down. I too also need to feel very close and connected with a partner to let go. Luckily I am with a guy at the moment who seems to think I am amazing despite all of my problems and loves me anyway, very considerate and doesnt make me feel bad when things just cant happen. So there are guys out there.

I have also ran into a few people who, when you tell them about your problem say things like "you just need more exercise" "maybe you need to eat healtheir" hehe. At first this really hurt, back when I didnt understand what was going on inside my body and people were telling me I was just unfit or unhealthy (even tho I used to gym everyday and love to cook up healthy home made meals) I used to doubt myself and they rubbed off on me, made me think I was just lazy unhealthy and was using excuses to avoid work. (A lot of people dont realise it is often get up and go, highly motivated, living on the edge, stressy and highly anxious people who get these illnesses, its almost like a burnout, like you said, retraining your body over time to become so highly responsive to stimulous that thiese illnesses happen) Ive never been lazy and used to push for more more more but yeh, Its hard coming to terms with it, but being the kind of people we are, we find ways to adapt and keep going, often beating ourselves up when we "cant do enough" lol

I cant go out anymore either, well I can but it kills me :S I much prefer staying in with a movie, a book, chatting to friends, just relaxing. Tell you what even the effort of putting on the makeup and getting ready and I am worn out before I start lol. nah I do quite often think "look what I am missing out there, and I am sat here" but you just make the best of it really. I still have a lot of fun but adapted, So now I sit behind my PC and chat to online friends rather than sat round a table in a crowded pub in so much pain I cant follow the enjoyment of the night. Still fill my mind with books, TV, friendships etc. and I am lucky I met my guy online. been together 3 years now and he is understanding of it all. thanks for the add btw xx

Aww Fluffbags I can identify with that experience so much!! Yes I think this illness if anything ONLY happens to driven, hardworking people. It is such a kick in the teeth when people assume you are just being lazy! I was always an A* student in school and achievement was very important to me. I was very ambitious and had dreams of a grander life than I had been brought up with (coming from quite a poor background). But unfortunately an illness like this changes all that and forces you to come to a stand still! (Literally!).

The good news is that I have improved for the first time in 12 years after beginning meditation techniques and practicing mindfulness daily, as well as changing my outlook and attitudes to life and re-assessing things. And of course following a healthy diet. Improvement has been very slow, but steady. I get frustrated that it's not enough yet to change my life in any major way. I still have to be very limited in my activities, cannot work and very rarely socialise-but I can do a little bit more than I used to be able to and not suffer for it quite so much, which put in perspective I suppose is quite an achievement! So there is a light at the end of the tunnel :). But it doesn't happen by itself. There's not a lot of information (or rather not a lot of accurate information) about CFS/M.E in the mainstream, so I was operating on the basis of not really knowing what on earth was happening to me. Which as you know is a frightening thing that makes you feel very helpless! The CFS/M.E clinic (which I had to be on a long waiting list for), was the first step in getting real answers and informaiton. There I found out how the illness functioned and that it was actually possible to recover! So if you (or anyone else) hasn't yet been to one, I would very much recommend it!

I'm so glad you have found an understanding and caring partner :). That's wonderful!

Thanks for mentioning about the medication side effects too. I was considering taking Citalopram, which is supposed to help with depresson and anxiety. It has helped my mother who suffers from severe anxiety problems and it had helped a friend who suffered from severe anxiety and post-viral fatigue (which again is just CFS really, it's just they know one of the trigger factors in that case was a virus). I thought perhaps it would help curb my anxiety enough to recondition my mind and body into a different state and allow recovery. However, after your warning I looked up the side-effects which are numerous, including causing most of the symptoms that you get with chronic fatigue anyway! But the scary one was sexual/genital numbess which can be permanant! Now, to be frank, when you're stuck in bed for most of your life, what pleasure do you have besides masturbation?! There is absolutely NO WAY I am going to risk losing my orgasms!!!! lol. Looks like I'm sticking with the slow and steady route of meditation/mindfulness therapy!

Thanks for the accept! :) xx

hehe yes well I do have to say that the medication seemed to balance my moods, when I stopped taking them I had a week or two of being up down up down and it made me realise while I was on them I hadnt had that. However after being off them a few weeks my moods balanced again and to be honest I do not feel any different now to when I was taking them. I am also guessing the side effects dont effect every single person so I guess its up the the individual to weigh up which would be better, the moods or potentially no orgasm. I know which I chose haha.

By the way yummy I am actually waiting to see a CFS specialist at the moment! Been on the waiting list about 8 weeks now and they did say it will take about 18 weeks so I guess I am halfway through. I am really looking forward to seeing them. After hearing good things about them and hearing your experiences, I hope I experience some of the changes that you have, no matter how minor, it all counts! xx

Yeah, my mother said Citalopram really helped her for the first couple of months (in terms of reducing her anxiety), but then she seemed to go back to the way she was (so either her body asjusted to it or the temporary relief was just psychosomatic in her case). Indeed I expect it's one of those side-effects that is rare (I would hope!), but the thought of the risk of permanant loss of orgasm is just not worth it!

Oh good luck! It's worth the wait, I hope it brings you some relief too :). Yes it's a long battle, but even improving to the degree that I have has made it worth it and the only way is up from here, so I am hoping improvement will continue to be steady! Just gotta be really commited to changing your lifestyle and thinking patterns. It's certainly a challenging process. Took me a while to really get into the flow of things (in terms of commiting to daily meditiation/relaxation sessions-I still struggle to stick with them!). But it's better than the alternative! xx