Sex and FM and ME/CFS

Cort

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This article was recently posted on Bruce Campbell's CFID's Self-Help site. Most of it is about managing sex and pain. Unfortunately there's very little about sexual dysfunction. He does note that hormonal treatments (estrogen, testosterone) can help.

I think I would add that meditation can increase libido by directing oxygen and energy to the pelvic area and that movement therapies such as the Anat Baniel Technique can do the same thing. Certainly many CFS patients and FM patients have a kind of constricted musculature that doesn't allow them to breathe properly.

Anyway an important and not very well understood subject.

http://www.cfidsselfhelp.org/library/illness-sex-six-strategies-improving-intimacy-0

Recasting Relationships and Building Support
Illness & Sex: Six Strategies for Improving Intimacy By Bruce Campbell


When CFS or fibromyalgia enters a marriage, one casualty can be intimacy between the partners. Pain, reduced energy, reduced interest, health problems of the partner, and increased responsibilities for the healthy spouse can all affect a couple's sex life, but, like other aspects of long-term illness, intimacy problems can be reduced as well.

When we asked people in our program to describe the effects of their illness on their sexuality, all those who responded said that illness had reduced their sexual activity. Many people mentioned having a much lower level of sexual desire than before, due to factors like ongoing fatigue and pain, and the side effects of medications. Other causes of sexual problems included the effects of menopause, relationship strains, and the medical problems and/or impotence of their partner.


Even though people said that they had either reduced their sexual expression or given up sex, most also reported using a variety of strategies that have either enabled them to adapt their sexual life to their illness or to connect with their partner in other ways. Here are six of the most common adaptations.

1) Talking
Several people reported that their relationship with their partner improved after they talked openly about their reduced interest in sex. As one said, "I explained that I still loved him and felt the same (or more strongly) about him, but I just couldn't show that through initiating sex...I have no desire for self-pleasure either. Explaining that sure made a difference to his acceptance of my state!" Others reported that they benefited from open communication in bed. One said, "I let him know if a certain position hurts and we change positions."

2) Alternative Activities, In Bed and Out
Another very common theme was adapting to illness by focusing on alternatives to conventional sex, both in bed and out. One person wrote, "The times I am not up to having intercourse, he knows I am usually up for some cuddling and happy to satisfy him another way." Others wrote of alternatives to intercourse, for those who think that appropriate. "You don't have to have intercourse to be sexually connected...You can be satisfied by manual stimulation and also oral sex."

Others have found other ways to express their affection, through hugging, kissing, and holding hands, through words of appreciation and thoughtful acts, and through shared activities like going out for dinner together, watching a favorite TV program or giving one another a massage. One said, "We still hug, kiss and say I love you' lots. I feel we have a very strong and healthy relationship."

3) Planning
Another common adaptation is planning for sex. Several people mentioned taking extra rest or reducing their activity level on days they anticipated having sex. Also, a number said they and their partners plan "dates." One said, "What my husband and I have learned is that we need to schedule a date'. I actually put it on my calendar." Another said, "The date' planning has worked for me because I tend to do less of the things that I know will cause me residual pain."

Others mentioned being mindful of time of day. Pain and other symptoms may be lower during certain hours of the day. By timing intimacy for those times, couples minimize discomfort and increase pleasure and enjoyment.

Another couple is increasing the frequency of sex through making a commitment to having sex once a week. The wife reported that sex is becoming less painful and her husband "is much more cheerful and doing more around the house."

4) Flexibility and Experimentation
Given the often unpredictable course of CFS and FM, it helps to be flexible about when sex occurs and what positions and activities are involved. One person said, "We've experimented with timing (morning is best), position (I seem to do best on my side) and lubricants." Others use observation as a basis for experimentation. One person wrote, "I noticed that in the summer I had more desire and realized it had to do with the heat, so we started to shower together."

5) Addressing Pain and Hormone Problems
Several people reported that their sex lives improved after treatment of pain and hormone problems. People reported treating pain by the use of pain pills, topical ointments, massage, and heat and by adapting how intimacy occurs.

There are several factors involved in the use of medication. One solution is for the person who is ill to time the taking of pain medication so that it will be at peak effectiveness when you plan to have sex. The type of pain medication is also important. The person with pain may want to avoid narcotic pain medications and tranquilizers, which dull the senses as well as reducing pain. Other means of pain reduction include taking a bath before sex, stretching and massage.

Pain can be reduced by using positions that are comfortable, by changing positions periodically during intimacy and by alternating activity and rest.

Another pain control approach is the combination of distraction and meditation. Distraction means reducing pain by placing attention elsewhere, focusing on sensations, both those given and those received. Also, concentrating on mental images of making love keeps the mind focused on pleasure, distracting attention from pain.

Several people in our groups also commented on how their interest in sex had improved with hormone treatment, either estrogen, testosterone or both. One said that testing showed that both her estrogen and testosterone levels were low. Treatment of the latter "not only helped libido, but my energy level as well." Hormone problems can also affect men.

6) Emphasis on Caring
A number of people distinguished between intimacy and sex, and said they and their partners focused on closeness and mutual caring. One wrote, "Sex is important in a relationship, but I don't feel that it is the most important. I think all of the little everyday things that we do for each other and being supportive of each other is what really makes a marriage."

Another said, "My husband and I have found we don't NEED to express our affection sexually...For us, sex does not compare to the kind of fulfillment which is a beautiful thing when shared between two people who are filled with warm, tender, loving feelings toward each other." She wrote of expressing affection through sharing time together, touching, caressing, and cuddling.

In Conclusion
CFS or fibromyalgia do not have to mean the end of sex. Using flexibility, experimentation and good communication, couples can continue to enjoy sex and may be able to strengthen their relationship. For those who decide that sex will no longer be a part of their relationship, a focus on other aspects of the relationship can foster closeness and caring.
 
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Sex is the last thing on my mind when I'm really ill. The return of my libido is usually the first sign for me that I'm coming out of a "bad patch". I'm male by the way.

Regarding intercourse, I have on more than one occasion pushed myself too hard when not feeling well, and the result was always an unnatural orgasm, post-coital dizzyness and nausea, which can be quite scary.

It is different from the usual fatigue after exertion, and I suspect the orgasm itself is the culprit! Maybe we have depleted reserves of happy-juice in our brains when we are ill.

For that reason, and the possibility of dismal, unsatisfying sex, (and the shameful aftermath) I only have sex when I'm really "in the mood". It sounds like obvious advice, but I think a lot of men feel pressure to be machine-like, insatiable lovers, and forcing the issue can be fairly disastrous. There are other ways to satisfy your lover after all.
 

Marylib

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This part cracked me up....

"Another couple is increasing the frequency of sex through making a commitment to having sex once a week. The wife reported that sex is becoming less painful and her husband "is much more cheerful and doing more around the house."


Well, ain't that the truth! Right, girls?
 

spit

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athene -- I've been thinking a lot about that, too. My rambly thoughts:

I think the problem is that nobody has any idea right now. XMRV would be likely to be sexually transmissible, but absent any specific studies on that yet, it's impossible to say yes or no. There's just not enough information yet.

Also, even if it is transmissible through various bodily fluids, and even if it does cause CFS, I'd also say that if the percentage found in the healthy control group holds up, it's also quite possible that there's another factor -- genetic susceptibility, particular triggers, other infections -- that actually causes the symptoms of CFS. So the picture is a bit more complicated by that.

It should be a concern, though, IMO, and it's one of the first things I started really worrying about when I found out about the XMRV study. I will be massively sad if I find that I've given this disease to the people I've loved the most. In hindsight, it was kind of stupid of me to just assume that whatever mystery illness I have wasn't likely to be contagious.

One of the first questions they need to answer, IMO, is how this thing spreads, and I'm sure there are researchers thinking about that quite a bit as I type. There are just too many questions right now to assume that (1) you've got XMRV, (2) it's transmissible through sexual contact, and (3) it causes CFS. Those may all be true, but working ourselves up over it too much is probably premature, also.

At the same time, with no solid information to go on, it's probably wise to err a bit on the side of caution, IMO. I couldn't give blood anyway, but certainly wouldn't now, and at least talking clearly about these concerns with sexual partners -- and maybe considering safer sex methods even in monogamous relationships until more is known -- seem like good ideas to me.

I've talked about it quite a bit with my current sexual partner, though we haven't come to any conclusions yet about what to do about it, and I think she's choosing not to worry about it too much until there's more information (which is totally valid, too). If nothing else, at least we're both aware that it's a potential concern and that it's something to think about as more information comes out.
 
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It seems to me, given the Incline Village and Lynbrook NY outbreaks, that at some stage it is highly contagious and that would be through saliva and blood. Perhaps sex also but not only.

It also seems to me that it must've become somewhat less highly contagious over time and related to genetic vulnerability since family members can live together for years and not get it (Dr. Donnica's family--father has it, son really has it, mother and daughter are fine).

It also seems to me that if they thought it was an ongoing STD ie continual danger of transmission to your partner, the Whittemore family would not have approved their daughter's recent marriage.

So, I wouldn't worry about it, hon. Enjoy your love life.
 

spit

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jenbooks -- really good points. It seems clear, if the link to CFS holds up, that it's going to be transmissible at least at some point through clearly nonsexual contact, given the outbreaks we have seen. And the degree that things are transmissible can and often does change depending on the course of the infection.

Just too many questions right now. I totally agree with going on enjoying our love lives. I certainly haven't backed off over it or anything draconian like that. :D
 

dsdmom

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Painful intercourse

I just wanted to go back to the original post and add something that may be helpful. When I first got sick 3 years ago sex became extremely painful for me. It was awful. My ob/gyn did ultrasounds and other tests and found nothing. Even talked about laparoscopy at one point to see if anything was happening inside. My pcp finally sent me to a physical therapist - yes, these exist just for gyn issues. They aren't well known (my ob/gyn had no clue and it was even @ her hospital). Anyway, it's not fun and it's very - ahem - intimate, but it helped me a TON. If anybody wants more info, feel free to PM me. It's worth it to get back that part of your life. I know my husband is thankful!
 

spit

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dsdmom -- that's really interesting. Thinking about it, I'm sure there are a whole host of medical conditions where people would benefit from physical therapy focused on various sexual dysfunctions, though I suppose the embarrassment factor would be hard for a lot of patients to overcome. Being as specific or vague as you'd like -- is it exercise focused type stuff, or are there other muscle stimulation type treatments?

I've really been very lucky not to have problems with pain in this regard -- of course, I've never been, to be blunt, particularly into penetration, so I don't know whether that would involve more pain these days than it used to. As a lesbian, it's utterly optional for me, and I've personally just never really enjoyed it much regardless. Do some women with CFS tend to also have painful sex apart from penetration?
 
K

_Kim_

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And the degree that things are transmissible can and often does change depending on the course of the infection.
My symptoms became very active at the same time the XMRV news hit. If there is a time when XMRV is more easily transmitted, I would expect that it is when symptoms are most active. For this reason, I have not kissed my boyfriend since October 8th :(

Spit, you might appreciate this ;) - I was in relationships with women exclusively for 15 years before I met my current boyfriend. Those years of good lesbian lovin' taught me a bit about how to have all kinds of great sex that don't put a partner at risk for STDs. I find it interesting that the XMRV scare has actually broadened my heterosexual repertoire.

There have been many who have questioned why some of us would get tested for XMRV right now. For me, it's all about sex and the possibility of transmission. I am treating XAND as seriously as AIDS and taking the same precautions I would if I thought there was a chance that I might be HIV+. Now, if my tests come back negative - lookout boyfriend, we've got some serious catching up to do. I don't care if I crash afterwards :D
 
R

Robin

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A number of people distinguished between intimacy and sex, and said they and their partners focused on closeness and mutual caring. One wrote, "Sex is important in a relationship, but I don't feel that it is the most important. I think all of the little everyday things that we do for each other and being supportive of each other is what really makes a marriage."
Regarding the OP, I think that's the hardest thing for me; when I'm really sick I have no interest in sex at all. It's kind of like food, when I'm relapsed not only do I lose my appetite but eating is an unpleasant, forced chore. Sex becomes equally unpleasant and exhausting.

I think it's hard for my boyfriend, even though he is very accepting of the no-sex times, and extremely supportive about my struggle with CFS in general. Intimacy is about sex, at least somewhat, or we would just be good buddies. Having sex is one of the few activities I can share with him in a meaningful way. (It's not like we can take a European vacation together or go skiing!)

It's just another thing that I hate about this disease.
 

dsdmom

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Being as specific or vague as you'd like -- is it exercise focused type stuff, or are there other muscle stimulation type treatments?
I don't want to get too graphic here in case I offend anyone, but essentially what I went through involved a couple different modalities of treatment. Our pelvic floor is made up of many muscles - so just like any other muscles in our body they can go into spasms, etc. One type of treatment was sort of like (painful) massage where the PT would work on internal knots, etc. I also had some exercises to do and we used biofeedback where a device was placed inside the vaginal wall and would show on the computer screen if my muscles were tensed or not.

It was not a pleasant experience per se but it helped A TON. I'm back at about 90% I'd say. And at one point was probably at about 10% of penetration.

Another thing I just want to throw out there because, again, it is not well known at all and a lot of docs either don't know about it or don't look for it are various skin conditions which can cause severe burning/pain with intercourse or throughout the day. I have one called lichen sclerosis. It's treated with topical steroids and/or topical lidocaine. It is thought to be an autoimmune condition although they aren't sure.

One good book to read (by the doc who runs the clinic i go to):
http://www.thevbook.com/
 

klutzo

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Vulvar Vestibulitis

I am very surprised that nobody has yet mentioned the unbelievably painful vulvar vestibulitis, which is very uncommon in the general population but quite common among those with CFS, FMS or Lyme. When I ran my FMS/CFS support group, about one out of four women there had it.

I have had vulvar vestibulitis since 4 years after I got sick (I've had it for20 yrs. now) and it made sex so painful that I could pass out. I always had to take a narcotic an hour ahead of time, use tons of KY and I always cried my eyes out afterwards and limped for days. This eventually came to a stop when my husband's Peyronnies Disease got so bad that we were both "sexually disabled". Luckily, he has a sense of humor about it.

I had a deep tissue scraping by an expert in vulvar vestibulitis and he found mutated yeasts, deep down in my vulvar vestibules. Diflucan did not work. Gentian violet did not work. Nothing we tried worked. Boric acid suppositories helped a little, but not much. Xylocaine cream is sometimes prescribed for this problem, but we felt it would also numb my husband and be self-defeating.

I am amazed that nobody has brought this up. Evey other FMS/CFS or Lyme forum I've ever been to has had at least one thread about Vulvar Vestibulitis and vulvodynia. However, I am very glad none of you has it.

klutzo
 

susan

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Hi Klutzo,
Yes I indeed have it...got it in 1989, one yr after getting FM first. Just awful, awful. Eventually killed off a good sex life. Pain was excrutiating having sex like being chopped up with razor baldes. Was given various creams here in OZ that had cortisone in them which destroyed the fine skin of the vagina for a long time.

Went to live in Vancouver and in 1992, the Womens clinic could only find a little bit of dysplasia. Maybe she did not know about this condition back then. Then she said she would try lasering me. i do not have to tell anyone how painful that was for the next 2 weeks as the skin came away and did not do a thing for improving the situation. I could only get relief from applying Aloe vera gel. I died then for mnay yrs with CFS so sex just became a memory.

It is very hot here now in OZ and it makes it even more painful. This illness strips you of most everything thats makes life happy and sustaining. It has seemed to improve a little in the last few yrs. My Cfs friend also reveals she gets it too. It must be an immune dysfunction thing.
 
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I guess you have tryed all the "azole's" available.

Maybe try Terbinafine tablets and cream(lamisil), as it has been effective when "azoles" have failed in some people. Myself included.
 

Michelle

Decennial ME/CFS patient
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Sex beyond intercourse

I almost posted Bruce's article in the dating thread but got distracted and forgot (story of my life). Though I will be really lame and re-post what I said there:

Managing a sex life when you're ill requires a lot of imagination, thinking of sex in different ways than just intercourse, and much flexibility. My boyfriend and I spend a lot of time talking about our sexual fantasies, even if 80% of it we never act out. We use a lot of groping, toys, and mutual masturbation instead of actual intercourse ("missionary" makes me pass out, & other positions are either too much work or too painful). Indeed letting him grope me when I'm too weak to do much more than just lay there letting him feel me up often helps raise endorphines, as well as my self-esteem as someone who is sexually attractive when I'm feeling the most worthless as a lover.

One of the things missing in Dr. Campbell's article was any discussion of toys or sex that isn't intercourse. I'm just going to be blunt here: get yourself a good vibrator. And that applies to both men and women -- though vibes for men are a bit more expensive. I usually wear out before I'm able to orgasm so I let a vibrator like the Silver Bullet or Miracle Massager (there are phthalate free-versions also) do all the work for me so I can enjoy myself.

True, I can face some pay-back the next day if I haven't been pacing well. And can go for weeks without being pleasured by either boyfriend or me when I'm going through a particularly bad rough patch (I should note my boyfriend lives in the UK so we go for months without seeing each other). But it seems a shame to miss out on one of the fundamental experiences of being human by limiting it to what it has always been traditionally.
 

Marylib

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Nystatin

Sorry gentlemen, but....

Have any of the ladies ever found anything that gets rid of thrush? For more than about 2 days, I mean. I've had it for 25 years. It's not been much fun. :(
Hi Athene,

Are you able to get nystatin? I get nystain tablets and take them both orally and also use them as a vaginal pessary...helps me keep it under control. Nystatin is an old med and pretty safe and non-reactive for most.