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How to Manage an Intimate Life with Chronic Pain and Fatigue

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Sexual health is linked to overall health. In fact, sexual activity improves well-being thanks to hormones like oxytocin, and it can even improve sleep, suggests a 2007 report by Planned Parenthood. Furthermore, hormones released during orgasm can help relieve chronic pain symptoms thanks to a rise in pain threshold due to a rush of endorphins and corticosteroids. 

Unfortunately, many Lyme sufferers struggle with a plethora of symptoms that can make maintaining a sex life difficult. People with Lyme disease experience widespread muscle and joint pain that is often unpredictable. They may also suffer from fatigue, mental fog, and other neurological symptoms. 

To compound the problem, many people who experience sexual dysfunction are reluctant to seek help due to embarrassment, or frustration with the lack of medical response to their condition. A 2008 study in Pain Research and Management found that 73% of women with chronic pain report sexual difficulties. Up to 40% of people reported that Lyme disease symptoms caused them to eliminate sexual activity entirely. 

People with chronic pain associated with Lyme disease differ in how they react to the pain: Women tend to move through the pain throughout the day, which can exacerbate symptoms. Men experience significant reductions in activity level and depressed mood. This means women may push through painful symptoms throughout the day leaving them too drained for sexual activity. Men, on the other hand, may avoid sexual activity because of depression or fear of pain. During Lyme disease treatment, it’s important for healthcare workers to take these differences into account.  

Since maintaining a sex life is improtant for mental health and overall wellbeing, it’s important for people with Lyme disease to find ways to maintain an intimate life despite their symptoms. The potential for pain relief is an added bonus. There are many ways for people struggling with sexual health to get their groove back. 

Intimacy, Chronic Pain, and Lyme Disease

1. Talk to Your Doctor.

Medical practitioners can help patients navigate sexual problems caused by their symptoms — an approach that treats both the physical and psychological implications of sexual dysfunction is most effective. A doctor can help people determine if there are underlying hormonal issues that are making sexual dysfunction worse. They may also be able to provide referrals to a sex therapist. It is important to rule out any underlying hormonal issues that can be caused by Lyme disease and even the use of long term pain medications. 

2. Find a Sex Therapist.

Sex Therapy is a field that is growing rapidly as research indicates the importance of sexual wellness to overall health. Sex therapists aim to reduce the stigma of talking about sexuality, improve patient sexual satisfaction, and learn how to make a sexual activity work for them.  

Women with chronic pelvic pain, fear of pain with intercourse is often what keeps them from enjoying sex. Men with chronic pain may fear their performance is lacking and be afraid to try. Opioids, often prescribed to treat pain symptoms, can alter hormone levels causing sexual dysfunction. In circumstances like these, the therapist’s job is to help with the reduction of fears, encourage relaxation techniques, as well as assist couples with conversations about sexuality. 

The American Association of Sexuality Educators, Counselors, and Therapists (AASECT) provides a referral tool for finding someone in your area. Many therapists offer video or phone call services for those who have trouble leaving their homes. 

3. Communicate with Your Partner.

People with Lyme disease whose sexual functioning has been impacted must learn to communicate with their partner, though it’s not always an easy topic to tackle. When discussing sex with a partner, it’s important to begin with the goal of creating a satisfying sexual life for both people. Keep in mind that the partner of someone with chronic pain may be mourning the loss of a sexual relationship and also afraid of hurting their loved one. Returning to sexual activity may require a frank discussion about changing the definitions of sex within a relationship, at least temporarily. 

People with chronic pain need to learn to self-advocate when something is uncomfortable, or painful. Often, people with chronic pain find that as they practice and learn how to listen to their bodies they are able to enjoy a greater variety of sexual expression. 

4. Use Relaxation Techniques

Since Lyme disease causes neurological symptoms, including anxiety and depression, it’s vital for people approaching sexual activity to do so in a relaxed state. Lyme can also cause joint and muscle pain in the pelvic region that makes sexual activity painful. Conditions such as pelvic floor dysfunction, vaginismus, and interstitial cystitis can be difficult to work around, but that doesn’t mean people need to give up. 

Lyme patients may benefit from a hot bath to soothe sore muscles and joints, followed by a massage before beginning sexual activity. This may require people to plan time to prepare for sex in their lives, but the benefits of a satisfying sex life are worth it. 

5. Redefine sexual activity

For many people, especially heterosexual couples, sex is defined as a penetrative activity. For people with chronic pelvic pain, this presents a challenge. Changing the definition of sexual enjoyment can help people with chronic pain who wish to maintain a sex life. Cornell University Health describes a sensate model, focused on touch rather than penetration as the key to enjoying sexual activity. Focusing on the sensual touch that avoids genitals lessens the pressure people with chronic pain may feel to engage in penetrative sex. 

Engaging in reciprocal sensual touching with a partner can help people reconnect and be open to communicating about other activities. For people who have been celibate due to their symptoms, this is a terrific starting place. Sensual touching is also a wonderful solo activity that can help patients reconnect with their sexual selves and be open to other experiences. The goal of this touching is not orgasm, but physical pleasure without an agenda. 

6. Experiment with Positions.

A sex therapist can assist an individual or a couple with finding positions that don’t exacerbate pain symptoms. In the Pain Research and Management study, participants received significant coaching about positions, and even use of pillows and wedges to relieve pain. Often, positions that don’t rely on joints to support weight are best for those with knee, wrist, and hip pain. 

For those with chronic fatigue, a position that allows them to lay flat or on their sides may allow them to relax enough to enjoy a sexual experience. Also, consider timing when it comes to sex: Some find it easier to muster the energy for sex early in the day before fatigue sets in. 

7. Focus on Lubrication

Lyme disease can cause abnormal fluctuations in hormones, resulting in symptoms that mimic the beginning of menopause. For women with these symptoms, sexual excitement doesn’t correlate with vaginal lubrication. This can make penetrative sex, or even touching, uncomfortable. The use of a lubricant can increase sexual enjoyment for both partners. 

If using condoms, it’s important to use a water-based lubricant so the integrity of the condom isn’t compromised. Otherwise, options containing coconut oil or silicon provide long-lasting results. 

Taking an active role in sexual therapy combined with communication, a focus on pleasure, a willingness to experiment with various positions, and appropriate relaxation techniques can help people with chronic Lyme disease symptoms experience a return of sexual satisfaction despite persistent symptoms

Maria Chapman is a literacy specialist turned freelance writer. Maria specializes in writing about parenting, mental health, education, relationships, and productivity. She uses her 13 years of experience in urban education,  her work as an instructional coach, parenting five children, thriving with chronic illness to write engaging, relatable content. See Maria’s website or her Linktree for more of her work.


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