I've noticed that this is an issue that ME/CFS people seem reluctant to talk about. I can certainly understand why, this is definitely something that relates to our feelings of self-worth and personal pride.

I haven't seen much on this in articles or books. Of course it does seem inevitable that an illness that causes such severe imbalance in the endocrine system would be bound to cause libido problems at times. I've found in my own experience that libido is something that comes to visit, but never moves in and stays permanently.

That's caused havoc for me in relationships, my partners assumed that I had lost interest in them, or never cared about them in the first place when my endocrine system went haywire suddenly.

I can't say much that's positive. I've had a long series of failed relationships that have left me really depressed about the whole subject of relationships.

I have seen one chapter in a book by Peggy Munson called Stricken that addressed another issue regarding sexuality. It's about the unfortunate reality that sexual activity causes flareups. That's a related issue that can also make a successful relationship difficult or impossible.

Sexuality and having a relationship is a very important part of being human, and having all that taken away from us really hurts when it happens. And it certainly doesn't help when people taunt you about it, which some of my supposed friends did to me at times.

Didn't have success before, therefore am separated! (He was verbally abusive).

Try googling adrenal fatigue and libido or CFS and libido. If you are having trouble with daily tasks then why wouldn't anyone have trouble with libido? Maybe different times of the day are better for you. Good luck and hope you feel better. : )

Dana! Hi!

You say you want to make HIM comfortable and secure. I get that. But he should be trying to do that for YOU!

The fact that you are too weak to do basic activities of daily living because of your illnesses would indicate to me that phsycial activity of any sort would be difficult for you!

You should not, and I hope you don't feel guilty that you are not always up to physical intimacy!! Your boyfriend may be a wonderful companion, but I don't think a scientific article is going to help him understand this problem, if he doesn't get it by just watching you struggle through your life.

I think that this is a sensitive topic for all of us, but I would hope that your boyfriend would love you enough to find out all he can about your illnesses on his own. And then shower you with understanding.

Let him know that at any given time, when you have the strength, any and all of it will be lovingly sent in his direction. Otherwise, you are just not physically well enough to engage.

Thanks everyone. I have a lot of residual fear from an abusive ex who drilled it into my head (daily) that "no man would EVER love or want me" if I couldn't be physical. Even worse, he repeatedly accused me of cheating on him when I was bedridden and vomiting from pain! I couldn't even MOVE no less think of men, and on top of it I was accused, berated and rendered worthless by the one I loved!

Although my current partner is understanding, he makes occasional jokes about me just not being attracted to him anymore (the furthest thing from the truth!). In the past, I found that seemingly harmless jokes like this can be a sign that the partner's ego is starting to suffer and there are bad times ahead despite my explanations of what's happening to me physically.

Darla, I wish people could understand just by observing my everyday challenges. I think it's harder for healthy people to grasp because CFS/FMS are still essentially "invisible" illnesses. Plus, I've been sick for so long that I've learned to be rather stoic about extreme pain and fatigue. Maybe I should keep a full body cast on hand that I can climb into, to drive the point home. ;-)

that happend to me too, i told the doctor that its not my husband even if u put the cuttest man on earth i would want to do anything, my husband hurt his knee so he its gonna have surgery and that helps, he got injure when this started bad, like two months ago, but what i did the other day he came home like at 1 p,m, and we did it cause usually at night im so tired, that work for me and im gonna do it while i can, he is gonna have surgery and be resting for at least two months and i hope i can get better by that time, if it wasnt for that i dont know how everything would be, i dont think he understand anything that its happening to me

Monina, from what I've seen and heard, it seems very hard for anyone to understand what we go through without directly experiencing it. When healthy people have an illness or surgery, their compromised physical state is finite...it has a period of recovery and it's over. Back to normal. That's what most people are used to!

It's very sad that some of us tend to be relieved if our partner is :out of commission" for a while, because the pressure is off for a bit!

yeah u are right , last night he tought i didnt want to sleep with him cause i went to the other room, but my legs were tired and i was moving a lot so i didnt want to bother him and he got mad

Just a question, are you mad at him for anything? Resentment can be the biggest killer of desire, especially in women. Although CFS can also do the same!

every time I got the energy to have sex with my ex, I would get sick afterward. sometimes it was worth it....! but he also tald me that noone would want someone like me. when he started verbally abusing the kids, I had to go.
now I am man-free for 3 years by choice. I do not think anyone can understand what we go through and I do not trust healthy people enough to hang in there. I simply do not have the energy to explain myself again and again to anyone.
do what you need to do to feel as well as you can. you cannot control how your boyfriend feels and you cannot control your illness, only your own reactions. if i find any scholarly articles i will send them your way.

I wanted to add to what sslaird said...I've also chosen to live alone now. When a relationship is reduced to constantly defending yourself to someone who does not understand, is it worth it? Is a friendship worth it if you have to constantly explain and justify your disabilities?

I don't really want to live alone with no friends, but for me it's by far the easier of the two bad scenarios. I just want to live my life in peace now, and try to cope with my illness as best I can on my own.

"I am also having this problem with a man who says he understands what I go throught, but then gets upset when I turn him down for sex. The guilt makes me stressed and the stress is not good either. To me it is a losing battle and I can understand why we would prefer to live alone without guilt. I still love him, but wonder how he really feels. If I do agree, then I also hurt for 5-6 days afterward. The guilt is really hard for me, I just don't know how to handle it anymore. We have been together 12 years, never married, but living together. Hugs to you all...thanks for your input on this subject. CFS definitely affects our sex lives, among other things.
Mary Kathryn

http://www.co-cure.org/aacfs04.htm

AACFS 7th INTERNATIONAL RESEARCH CONFERENCE
This conference was held in Madison, Wisconsin from 8 10th October, 2004. A day of research presentations was followed by two clinical days with a patient conference running alongside. I felt privileged to attend the research and clinical segments.

( scroll two thirds of the way down to the heading;)

PSYCHOSEXUAL ISSUES

It is suggested by Dr. H Wynants (Antwerp, Belgium) that decreased libido in CFS maybe due to the effects of stress. Sexual dysfunction is common in both sexes in this illness, and possibly medication may compound the problem.

Dr. M. Arasanz (Barcelona,Spain) found that 27 females studied with CFS and compared to controls had experienced exhaustion and negativity in relation to their sex life, and the level of dissatisfaction correlated with the Fatigue Impact Scale (FIS).

NEXT

http://www.co-cure.org/Lapp.htm

In about the 87th paragraph of ;
THE TREATMENT OF CHRONIC FATIGUE SYNDROME (CFS)
THE PERSPECTIVE OF A PRIVATE SPECIALTY PRACTICE IN CHARLOTTE, NC
Dr. Charles W. Lapp lecture given in Nashville, TN, April,1997 (Dr. Charles W. Lapp is famous for his step wise approach - http://www.drlapp.net/ )

the 87th paragraph of the document reads;

Hormonal issues are real important, too. Because the gonadal axis is affected by the hypothalamus, the gonads, the ovaries in women and the testes in men, tend to be suppressed. Hormones are low, libido is low. These should be tested. I recommend that women get a DHEA level and the men get a testosterone level. If these levels are low, by golly, treat it. Youll feel better.

NEXT

http://www.co-cure.org/infocon1.htm

In the section of the document from the Second World Congress on Chronic Fatigue Syndrome and Related Disorders Brussels, 9-12 September, 1999
Reviewed by: Rosamund Vallings MB BS Auckland, New Zealand

The paragraph titled Epidemiology reads;

"Epidemiology
P. de Becker (Brussels) looked at mode of disease onset in CFS. 74% patients had acute onset with progressive disease in 26%. Infectious agents seem to play an important role in the onset of CFS with other factors such as immune dysregulation involved in the perpetuation of the illness. He also did a 6 month follow up in CFS patients. He found that health stayed unchanged or deteriorated measured by several parameters. Especially, physical capacity seemed to get worse over time. Only a small number of patients were followed over this relatively short period of time. 1248 patients were studied in a further poster by de Becker, and in almost all patients all symptoms of the Holmes criteria occurred. Other symptoms noted were: dyspnoea, lightheadedness, gastro-intestinal complaints, cold extremities, decreased libido and disequalibrium. They found the Fukuda definition less stringent and therefore less suitable for scientific homogeneity."

Lastly

http://www.co-cure.org/drt3.htm

Cant find anything on Pheonix Rising

Pg 6 The Fibromyalgia and Chronic Fatigue and Life Planner Workbook: Healing .. By Dawn Hughes

http://books.google.com.au/books?hl=en&lr=&id=ha58_6yvHMcC&oi=fnd&pg=PA1&dq=ME/CFS+libido&ots=xflw5Wflol&sig=8hH5Ok6cR2RY8oei7M-S-GEwuns#v=onepage&q&f=false

In summary 'loss of libido' is a very common symptom of CFS amongst Women and Men who suffer ME/CFS (Neuro Endocrine Immune Disfunction)

Concerning decreased libido, sexual dysfunction and
frequently thyroid and stress responses are all part of the endocrine related issues.

Al, I'm still new on this site and you are rapidly becoming my CFS/Fibro hero! I knew you'd have great info to share. Thanks so much!

Saraswati, I completely agree that resentment can kill sex drive! In my case, it's extreme resentment toward my OWN body and physical state, rather than any negativity toward my partner. My pattern has always been to turn bad feelings inward. I have a lot of guilt and shame about my illness (I'm starting therapy to address this).

Sslaird, I'm sorry you've been through similar abuse in the past. I wouldn't wish that "adding insult to injury" scenario on my worst enemy!

I truly understand why chronically ill people would simply choose to be alone. I've lost so many friends and loved ones because they could not understand this illness, and defending myself on a daily basis only made me mentally and physically worse.

Thanks again for all of your comments and support!

Dana, I think Al is everybody's hero in this support group. Despite all his own issues, he goes to great lengths to educate and inform us. That certainly fits my definition of a hero.

I did some grief therapy at one time, and they taught us to challenge self-defeating, irrational thoughts. I'm sure you are hearing the same thing in your therapy. Let's keep fighting those urges to punish ourselves for our illness, getting sick with ME/CFS is certainly not our fault. I catch myself getting angry at myself for not coping well enough when I get sick...there's no sense whatsoever in doing that.

Be kind to yourself, you deserve some kindness.