There have not been many studies published given the magnitude of this problem and the results have been somewhat conflicting. Part of the problem is that the studies have not had many patients and, as every person with FMS knows, everyone is a little bit different. In some people there may be more pain than fatigue, and some people may be more anxious than depressed, or not depressed or anxious at all. Consequently, it has been difficult to take the results from the studies and apply them to the majority of people with FMS. Here’s what has been found so far.

Although pain is one of the defining characteristics of FMS, its relationship to sexual dysfunction is not clear-cut. In some patients, pain has surprisingly been found to not be associated with sexual dysfunction or to play only a minor role. Remember, the studies did not have many patients enrolled and the individuals in the study may have other problems that surpassed the problems they were having with pain. Those people who reported widespread pain had the most difficulties with sexual issues.

One pain disorder that did garner enough attention to warrant its own study was that of vulvodynia. This is formed from the Latin words that literally mean “pain in the vulva,” or the soft tissues that surround the opening to the vagina, including the labia, clitoris, and the vaginal opening. Women will feel different types of discomfort ranging from a stinging pain, to burning, stabbing or itching. It can be so severe that intercourse is not possible. One study that looked at FMS patients at a U.S. university hospital setting found they were four times more likely than normal women to suffer from this condition.

This is an actual pain condition and there are medications that can be used to treat these symptoms, which is one of the reasons a pain physician is important in the management of FMS. This specific discomfort may be a type of pain syndrome called neuropathic pain. Neuropathic pain literally translates to “pain within the nerves.” If it is due to pain nerves that have become more sensitized, it is termed peripheral neuropathic pain. It can also result from a misinterpretation of information from nerves that carry sensory information. This occurs in the central nervous system where normal sensations are instead interpreted as being painful. This is known as central neuropathic pain. The most common medications used to treat this condition are actually drugs originally intended to treat epilepsy, referred to as the anticonvulsants. If you think about epilepsy it is actually a medical condition where normal nerves are over-excited or over-stimulated and this is roughly the situation in neuropathic pain.

Two other conditions that seem to be more prevalent in patients with FMS are pelvic pain and coccydynia. Coccydynia is pain in your tailbone, the bone you can feel just at base of your spine. In one study pelvic pain was reported in 66% of 499 females and 68% of 55 males with FMS. The same study found coccyx pain in 38.8% and 10.5% of females and males, respectively. Pelvic pain itself may also increase the pain you feel from other parts of your body by acting as an “amplifier” to your nervous system. In patients with FMS, pelvic pain is strongly associated with primary dysmenorrhea, or pain that women feel around the time of menstruation. In a study of physical and psychological variables that influenced pain in patients with FMS, pelvic pain itself explained 23% of emotional as well as physical pain.

Pain physicians have particular treatments that can provide relief of these symptoms. Pelvic pain may be relieved by a specific injection to a group of nerves that are a type of way-station to the sensory nerves coming from this region. This way-station is called the superior hypogastric plexus. These nerves live in bundle in front of the last lumbar vertebrae just where it attaches to the sacrum, or hip bone. A needle is placed exactly next to this bundle by a pain physician using a fluoroscope. After a small amount of dye is injected to verify the location a mixture of a numbing anesthetic and steroid compound is injected. This mixture is designed to “settle-down” the nerves so they are less active. Remember, neuropathic pain is partially due to “over-active” nerves.

Another approach is called an ilioinguinal nerve block, which can be very beneficial in treating pain in the lower pelvic region and the groin. This nerve passes under the tight ligamentous band (the inguinal ligament) you can feel between your groin and the front bony part of your hip, called the anterior superior iliac spine. The nerve is located using these landmarks and a similar anesthetic-steroid solution is injected. Coccyx pain is medically termed coccydynia. To treat this, a tiny needle is inserted into the space between the coccyx and the bottom of the spine and a small amount of an anesthetic and steroid solution is injection. In all three examples, if the pain is indeed due to the respective condition, the anesthetic provides relief in minutes and the steroid will begin to take effect within days and provide relief that may extend for weeks or months. Some individuals find relief from one injection while others may require two or three injections spaced over the course of six months to a year – it all depends on the severity of their condition.

If you suffer from these symptoms there is help provided you explain the symptoms to your physician at your next office visit.
One of the major reasons sexual dysfunction has received so little attention is that women are reluctant to bring up these issues because they feel embarrassed or ashamed. Pain is nothing to be ashamed about and just as if you would not hesitate to tell your physician about chest pain you should not hold back about pain symptoms simply because they occur in a different part of the body.
One study looking at pain and depression found that sexual dysfunction was present in patients with FMS regardless of whether they suffered from depression – pain was the more important factor. Another study with a different group of patients showed that when anxiety was also present with depression pain became less important, it was the depression and anxiety that greatly affected sexual functioning. Again, the small numbers of patients in the study make it difficult to generalize these conclusions to all patients with FMS.

Fatigue is always an issue in FMS. One study has shown that fatigue is related to sexual function while another study did not. Interestingly, patients with chronic fatigue syndrome seem to report less sexual dysfunction than patients with FMS, at least according to the patients in one study. There has been only one study that came to the conclusion that there is no effect on the sex life from the poor sleep that plagues FMS patients. You may disagree but evidently you were not part of that study. Many patients with FMS have a history of sexual abuse, up to 57% and 65% of patients in two separate studies. However, there was no correlation to sexual dysfunction as a result of having these experiences.

One study that looked at married relationships has found that if your spouse is caring and supportive your sexual experiences are more rewarding. This makes sense as women have always placed more emphasis on the emotional and bonding aspects of sexual experiences. However, the researchers found that this is true only to a certain point – and it can backfire. Women who had spouses that were too supportive and too caring actually had less enjoyable and less rewarding sex. Evidently, their spouses were assuming too much of a caregiver role and somehow this adversely affected their partner’s sexuality.

Overall, women with FMS say they have less arousal, more pain with sex, fewer orgasms, and less sexual activity. Sometimes, this may be due to the side effects of the medications which can reduce the ability of a woman to achieve an orgasm. This is less likely with the newer medications that have been approved specifically for FMS and is more common with the older antidepressants. However, if the problem involves pain, especially pain in the genital or pelvic region that you have not discussed with your doctor then this is something that you need to address. Think about the characteristics of the pain, whether it is burning, stabbing, or sharp; what brings it on; what makes it better or worse; and exactly when it occurs. Discuss these with your pain physician and see what options are available. Sexual dysfunction is not a problem that should be ignored in FMS.