Fibromyalgia: How does it affect sex and relationships?

How can fibromyalgia affect relationships?

The challenges associated with fibromyalgia can create significant strains in relationships, leading to shifts in communication, emotional tolls on partners, and changes in the relationship dynamic itself.

Communication issues

Open communication is the cornerstone of any healthy relationship, but it becomes even more necessary when one partner has fibromyalgia. The physical pain and emotional distress caused by the condition can make it difficult for individuals to express their needs, fears, and limitations. When communication falters, misunderstandings can arise, leading to frustration and resentment on both sides.

“My partner doesn’t understand... I feel misunderstood, alone in all this... since I had the endo surgery, for him, I’m much better, etc. He doesn’t understand fibromyalgia; he acts as if I’m not affected by this illness.“

Without open dialogue, the partner without fibromyalgia might struggle to comprehend the invisible and fluctuating nature of the illness, which can worsen feelings of isolation and frustration for the partner with fibromyalgia. Effective communication involves discussing not only the physical limitations but also the emotional challenges posed by the illness. It’s essential for couples to regularly check in with each other, discuss boundaries, and share their feelings openly to avoid further strain on the relationship.

“It’s not always simple... Explaining without getting frustrated, using kind words, and naming the pain can help the other person understand what we’re going through without unloading our anger on them because they don’t get it.“

“My ex-partner didn’t believe me, thought I was exaggerating the symptoms... I ended up hiding during crises, sleeping on the couch so as not to disturb him.“

Emotional impact on partners

There is a heavy emotional toll on partners of those with. Partners often experience feelings of helplessness as they watch their loved one struggle with chronic pain and fatigue. This helplessness can lead to caregiver strain, where the healthy partner feels overwhelmed by the responsibility of caring for their partner while also managing their own emotional needs. It is compounded by the additional responsibilities that partners often take on, such as household chores, managing medical appointments, and providing emotional support. The healthy partner may experience burnout, depression, or even resentment.

“We have a significant age difference, which makes it painful for my husband to see me with my cane because I’m young. He feels I shouldn't have to go through this. I’m fortunate to have a caring husband, so I’m well supported.”

Moreover, the quality of life for fibromyalgia patients is also closely linked to the level of support they receive from their partners. When partners are emotionally supportive, patients tend to have better health outcomes. However, when partners feel overwhelmed or unsupported themselves, it can lead to emotional withdrawal, further straining the relationship.

“I have a wife who’s rarely ill, so she can’t imagine the constant pain and fatigue I endure. Her lack of compassion makes my life even more difficult...”

Changes in relationship dynamics

One of the most significant ways fibromyalgia often affects relationships is through shifting the relationship from an equal partnership to a caregiver-patient dynamic. This change can be particularly challenging for both partners. For the individual with fibromyalgia, there may be feelings of loss of autonomy and independence, leading to frustration and low self-esteem. For the partner, the shift to a caregiving role can be overwhelming and may lead to feelings of being trapped or overburdened.

“It was exhausting... I did things in stages, but the pace... was intense and caused me immense pain... My partner had to take over more and more.”

“My partner became more of a caregiver... But, it’s hard to maintain intimacy when one person is always taking care of the other.”

As one partner takes on more of a caregiving role, the emotional and physical intimacy that once defined the relationship can diminish, leading to feelings of detachment and loneliness for both parties. This change can be particularly hard to navigate, as it often requires redefining the roles within the relationship and finding new ways to connect emotionally and physically despite the challenges posed by fibromyalgia.

How does fibromyalgia physically influence sexual intimacy?

Pain and discomfort during sex

One of the most significant physical impacts of fibromyalgia on sexual intimacy is the widespread pain that many individuals experience. Allodynia, a common symptom of fibromyalgia, causes pain from stimuli that are not usually painful, such as a gentle touch or light pressure. This hypersensitivity can make sexual activity particularly uncomfortable or even unbearable. Many people with fibromyalgia report that the pain during intercourse, especially in areas like the pelvis and lower back, overrides any potential pleasure, leading to a decrease in sexual activity.

“I have not had an intimate life for a long time... I wouldn’t tolerate being touched because the pain is present at the slightest touch.“

Additionally, the muscle stiffness and tender points associated with fibromyalgia further complicate physical intimacy. These tender points, located in areas such as the neck, back, hips, and shoulders, can make certain sexual positions painful, limiting the ways in which couples can comfortably engage in sex. This often requires couples to experiment with different positions or activities to find what works best for them.

Fatigue and low energy levels

Chronic fatigue is another significant barrier to sexual activity for individuals with fibromyalgia. The constant, pervasive fatigue that accompanies fibromyalgia can make the mere thought of engaging in sexual activity exhausting. It can sap the energy needed for sex, leading many to avoid it altogether. For many with fibromyalgia, conserving energy becomes a priority, and sexual activity might not be feasible after a long day or during a flare-up of symptoms.

“The fatigue means that often nothing happens, and he gets frustrated and lets me know when we discuss it. I try to address it, but it’s complicated when you’re learning to live with the illness...”

This chronic fatigue not only affects the frequency of sexual activity but also its quality. When individuals with fibromyalgia do engage in sex, the overwhelming tiredness can make it difficult to be fully present or enjoy the experience, further contributing to a decrease in sexual satisfaction.

Medication side effects

Medications used to manage fibromyalgia symptoms, particularly antidepressants like SSRIs and SNRIs, can also negatively impact sexual function. These medications, commonly prescribed to help with the depression and anxiety often associated with fibromyalgia, can cause a decrease in libido, difficulties with arousal, and challenges in achieving orgasm.

“After having gone through a long dry spell where I could barely tolerate any contact, I’m also relearning, little by little, at my own pace, to know myself and my body and its limits.“

The role of medications in reducing sexual desire is well-documented. For example, antidepressants like duloxetine (Cymbalta) and milnacipran (Savella), while effective for managing pain and mood, often come with side effects that dampen sexual interest and performance. This can create a frustrating cycle where the treatment for fibromyalgia's psychological symptoms inadvertently exacerbates sexual difficulties.

What are the emotional and psychological repercussions of fibromyalgia on sexual intimacy?

Depression and anxiety

Depression and anxiety are common comorbid conditions with fibromyalgia, both of which can severely reduce sexual desire and satisfaction. Depression, in particular, is linked to a lowered libido and a general disinterest in activities that once brought pleasure, including sex.

The psychological burden of fibromyalgia can create a cycle where the pain and fatigue lead to depression, which in turn decreases sexual desire, further isolating the individual and potentially straining the relationship.

Self-esteem and body image issues

Living with a chronic illness like fibromyalgia can take a significant toll on self-esteem and body image, both of which are crucial for healthy sexual intimacy. The constant pain, fatigue, and the physical limitations imposed by fibromyalgia can lead to feelings of inadequacy or unattractiveness. Individuals may feel that they are "broken" or "flawed," which can diminish their desire for sex and their ability to feel confident during intimate moments.

“It hasn’t always been easy; in the beginning, I used to "argue" with myself a lot and blamed myself for all sorts of things, especially for being sick/lazy/clumsy, etc. But I’ve learned to better accept the situation and that there are things I can’t change, to be less judgmental and more patient and self-encouraging.”

Weight gain, a common side effect of fibromyalgia and its treatments, can further compound these body image issues, making individuals less likely to feel desirable. This lack of self-confidence can inhibit sexual expression and reduce overall intimacy within a relationship.

Fear of pain and rejection

The fear of pain during sex, combined with the fear of rejection from a partner, can also inhibit sexual activity for individuals with fibromyalgia. Many people with fibromyalgia worry that their pain will intensify during sexual activity or that they will not be able to perform sexually in a way that satisfies their partner. This fear can lead to avoidance of sex altogether, creating a barrier to intimacy.

How can couples dealing with fibromyalgia maintain intimacy and a healthy relationship?

Some strategies that can help couples maintain a strong connection despite the physical and emotional hurdles posed by fibromyalgia are:

• Open and honest communication is foundational to maintaining a healthy relationship, especially when one partner has fibromyalgia, whose symptoms can vary from day to day. Discussing limitations, desires, and concerns openly can prevent misunderstandings and resentment from building up. When both partners communicate their needs and listen to each other, it fosters an environment of mutual understanding and support. Studies have shown regular dialogue about the condition fosters better relationship satisfaction and emotional closeness.
• Adapting sexual practices to minimize pain and enhance comfort is key, given the physical pain and discomfort associated with fibromyalgia. This might involve exploring alternative sexual activities, trying different positions, using aids like pillows for support, or even changing the time of day when intimacy occurs to align with periods of lower pain and fatigue.

“Regarding intimacy, we adjust based on my pain (intensity, duration, positions, time of day, etc.). When the pain is too intense, we postpone until tomorrow.”

• Intimacy is not solely about sexual activity. Emotional closeness can be maintained through non-sexual forms of intimacy, which can be just as fulfilling and important for the relationship. This might include activities like holding hands, spending quality time together, cuddling, sharing hobbies, or simply talking about your day. Research suggests that couples who prioritize non-sexual forms of intimacy often report higher levels of satisfaction in their relationships. Moreover, these acts of closeness can help alleviate some of the stress and anxiety that often accompany fibromyalgia.

“We love each other deeply, and fortunately, because I often have zero morale. I hold on for him... Maintaining our emotional connection is what keeps us going.“

• Seeking professional help through therapy and couples counseling can provide tools and strategies to improve communication, manage expectations, and cope with the emotional strain that chronic illness can place on a relationship. It offers a safe space for both partners to express their feelings, work through conflicts, and develop a shared understanding of how the illness affects their relationship. Counseling can also help partners develop the coping mechanisms that are needed for maintaining a strong and supportive relationship over time.
• Managing expectations and practicing patience are crucial when dealing with the ups and downs of fibromyalgia. Both partners need to understand that there will be good days and bad days, and maintaining intimacy may require extra effort and creativity. It's important to approach these challenges with empathy and a willingness to adapt.

“I’ve been in a new relationship for over a year now, supported by a partner who listens and is very understanding. When I’m in a crisis, he takes care of me and finds it normal. I’m no longer ashamed, and the symptoms are easier to handle with support.”

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