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Recently diagnosed and decreased libido
9 Replies
ColeyB - October 6

Hi, my name is Nicole and I am 27 years old, and a mother of a 5 yr old and a 3 yr old. I was diagnosed with FMS 2 weeks ago, though I have had persistent symptoms for 2 years and none of my docs knew what was wrong. The last few months I have noticed a lack of interest in sex, and I have no idea how to make my boyfriend understand that it truly isn't him that I am not interested in. Also, he really hasn't bothered to research FMS and its effects at all. I am becoming more and more depressed as every day goes by and nothing seems to help. None of the meds are working for the depression, my boyfriend doesn't understand how I can be so tired all the time, yada yada. I guess I don't know what to say to him about FMS and its affects on libido. If you have any advice on how I can talk to him, please feel free to lay it on me. I am at my wits end with all this. Thank you all so much. Nicole.


Fantod - October 6

Hi Nicole - I am so sorry to hear about your situation. All of us go through problems with family members, significant others and even doctors when it comes to learning about and/or dealing with Fibromyalgia (FMS).

I'm going to start with the basics so you have a better understanding about what is going on with your body.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is recognised by the National Arthitis Foundation and the Center for Disease Control. There is no cure but it can be managed using prescribed medication. Only certain classes of prescribed medication work for FMS. OTC remedies do not.

The primary doctor to treat FMS is a rheumotologist. You can also use a pain management specialist (I have both). If you need a fibro-friendly rheumy there are a couple of options. Call your local hospital physician referral service and ask them for a rheumotologist and/or a pain specialist with an interest in FMS. You can also go to the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly health care professionals in your area. There are still a lot of doctors out there that think FMS is a figment of our collective imaginations. You will probably have the misfortune to run into one or more of them as we all have over time. Take some time to read all of the information in the blue boxes on the lefthand side of this page. Knowledge is power. You need to be your own best advocate when it comes to managing and understanding FMs and the "perks" that come with it.

There are now three main prescribed medications used to treat FMS. Cymbalata is a popular choice as it addresses both the chronic pain and depression that usually accompanies FMS. Lyrica is advertised on TV all of the time. The most common complaint seems to be rapid weight gain. The newest medication in the FMS arsenal is Savella. It has been used in Europe for decades and was approved for use in the US this year. I am not aware of any major side effects associated with Savella. Most rheumotologists seem to have two week trial packs of Savella for patients to try.

It does take time and a lot of tinkering to find the right combination of medication and dose to be effective. All of us are affected by different symptoms so there is not a single drug regimen that will work for everyone across the board. It sounds like you are really struggling but you need to allow at least two weeks and possibly a month to see if your current medication is going to be effective. If you are really struggling with depression than I would like to gently suggest you consider seeing a professional for help. Many of us see a counselor to help us cope and for support. They can also be helpful when it comes to coaching you on how to effectively deal with family members etc.

I know that you are exhausted. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Amitriptyline is usually prescribed for the sleep issues associated with FMS. Rest is very important when managing FMS. You must respect your limits or the payback is hell.

You will need to watch your diet as some foods and additives will increase your pain levels. Deep fried foods and lunchmeat (nitrates) will probably make you feel worse. No articial sweetners (including Splenda) either. If you need a sweetner, use something like Truvia which is made from the Stevia plant. You can find it in the grocery store right next to Sweet and Low etc. Try to eat smaller, high protein meals throughout the day to keep your blood sugar from tanking.

Last, but certainly not least, is the communication problem with your boyfriend. If you want to keep this site for your own use, you could show him the National Arthitis information on FMS (use the "search" function to find the information). You could take him to a doctors appointment with you. One way or the other, you are going to have to sit him down and make him understand how and why you are ill. I expect that you would make the effort on his behalf. It is the least he can do for you if the relationshio is important to him. There is a "Fibromyalgia for Dummies" book which you could order. You are exhausted and hurt all over. I doubt he would want to have sex if the tables were turned. And, you have just been diagnosed with a chronic health problem which is overwhelming under the best circumstances. Shame on him for not being more supportive when you really need him. I think once you have a medication regimen that works, things will get better. Until then, you are going to have to hang tough. We are all here for you. If you have other questions, concerns or just need to vent - have at it. I hope that my comments are helpful to you in some way. Take care and God Bless.


ColeyB - October 7

Thank you so much for the reply. I am so happy, and a little sad, that there are others out there that understand what I am going through. The process of trying to learn about FMS is exhausting too. I will take your advice and bring him to my next doc appointment. Thank you so much!


elba - October 15

I too after may years of not knowing what was wrong have just been diagnosed. It is a mixed emotions and a big challenge now that I know. Your words Fantod are very helpful, thsnk you.


Diagnosed2late - October 17

As a male with Fibromyalgia, I will try and give you some advice. You complain about your boyfriend not being understanding, but that is a little hypocritical, as you seem to have a complete lack of understanding of his needs.

You are not alone, because most women have a complete lack of understanding of a males sexual needs, and how those needs are essential to a mans biological and emotional well-being. I will explain this more later...

What you need to do is sit down with him, and explain to him that you have been inconsiderate of his sexual needs. Once you admit to that, you can discuss how he has been inconsiderate. Tell him that you understand his needs, and you are going to do much better to meet those needs.

Then you tell him that if you guys are going to make your relationship work, it is going to take effort from both sides to be understanding. Tell him that if he is willing to do his part, and try to understand this disease, and how it affects your life, then you will do your part to save your relationship. It is going to be hard on both of you, and it is going to take a lot of effort from both parties.

A males sexual needs are very complex, and very different from a women. Men get "horny" in a very different way. It is not easy to explain, or understand unless you have felt it for yourself. A mans sexual desire is driven by two things... Emotional need, and biological need.

First I will try and explain the biological need, which is much different from a women. The biological need is driven by hormones. These hormones cause intense urges, that will not go away.

The closest thing to compare it to, is hunger. When you are hungry the brain is getting signals to tell your body to eat. These signals will not stop until you eat. It is a survival mechanism that is built into your DNA.

Now imagine if your brain was receiving signals 100 times as strong as hunger, and food was sitting right next to you and you couldn't have it. These signals for sex are caused by hormones, and they can be so powerful that a man can not sleep, or function until these signals are stopped.

For a women these signals pass, but for a man they just grow stronger and stronger until his biological need for survival is met. A man has very little to no control over this, and it will continue until he has had sex or masturbated.

Masturbation is not a solution, because a mans needs are far more complex than just the biological drive. Now you have to consider the emotional aspects.

Men are very insecure. They constantly have to feel needed, WANTED, and loved. You can communicate this with words, but men are physical, and visual beings. Sex is actually a form of communication for a man. when you open yourself up to him, you are telling him "I want you, I accept you, I love you, you are a part of me." Refusing to make love to a man causes intense feelings of rejection. By doing that you are subconsciously telling him "I do not accept you, you are not important to me, you are not a part of me, you are not wanted, I don't love you". Of course that isn't true, but those are the feelings that your act of rejection cause.

That is the best I can describe a mans sexual and emotional needs, even though they are much more complicated than that. You need to meet those needs, if you want your relationship to work. If you don't meet his needs sexually, your relationship will fail. Take initiative, take the first step, if you want to save your relationship. Sitting around blaming each other will never solve your problems. You have to solve these problems together, it doesn't matter whose fault they are.

Sex is an enjoyable thing, it usually doesn't hurt:-) You may need to have sex with him when you don't feel like it. Once you get into it, I am sure you will enjoy it. Since you don't have that strong biological drive that all men have, you may need to find things that help get you in the mood, have "quickies", or try positions where you don't have to do a lot of work. It won't take much to satisfy him. It doesn't have to be great every time, just as long as he feels wanted and accepted.

Now back to your needs. Once you are meeting his needs, you need to communicate exactly what your needs are. Spell it out for him. Don't assume anything. If something is very important to you, make it very clear how important it is to you. Lack of communication is the number one cause of failed relationships. Nine times out of ten a man will do anything for his women, as long as he knows what to do, but too many times people don't talk about what their needs are, and the relationship fails.

If he does not meet your needs after you are meeting his, and you have made your needs clear, then you should probably move on. There are a lot of nice guys out there! But they are all going to have sexual needs, so you are going to have to do something to address this problem.


Diagnosed2late - October 17

Also the medication for depression can sometimes take several weeks to fully work, and they may have sexual side effects which sometimes lessen after your body adjust to them. Make sure to discuss this all with your doctor. Counseling for both you and your boyfriend may help as well.


Aiken - October 17

Hysterical! Thank you for the comic relief. I'll take pain relief in any form. I laughed so hard I cried!


Aiken - October 17

My post above was meant for Diagnosed2late.
Nothing funny about your situation Nicole - I understand your predicament only too well.


Diagnosed2late - October 22

LOL. I am glad I could help. Although I was being completely serious. Fibromyalgia ruined my relationship, I was diagnosed after the fact. I just don't want someone to let this disease ruin their relationship.

She should do whatever it takes to make her loved one happy. It is a lot easier to get support from someone if they are content with most aspects of their relationship.

Sex really is a basic need for a man. He is telling her exactly what he needs to be happy. The problem is something that she can fix with a little effort, and understanding(the same thing she wants from him) If she is meeting his needs and he is still being a jerk, then she needs to move on, and don't look back. But as long as she is doing the same thing as he is(not being understanding,and not putting in effort) then she has no room to complain, IMO.

I wish my wife had told me what it would have taken to make her happy. I would have done it in a second, Fibromyalgia or not.

ColeyB, how long have you two been together?


Diagnosed2late - October 22

Also i know i don't sound very sympathetic to her, but I really am. I know how she feels. If her boyfriend was on here I would tell him a few things too. If he really loves her he needs to man up, learn something about this disease, and be supportive of her. He needs to stop being a loser and be there for her.

I am sure his behavior is out of resentment due to the fact that she is not meeting his sexual needs, and that is childish behavior, but he probably doesn't know how to handle it any other way. He has already sat her down and talked about it.

They both need to go to counseling, talk this out, and stop blaming each other. Then they can put some effort toward making each other happy, and solving these problems together.



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