You’re dating someone with fibromyalgia (FMS) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)? First of all, you must be an awesome person to be willing to take that on. Allow me to thank you on behalf of everyone with these illnesses.
Next, you’ll want to learn a few things that can help this go a lot better for both of you. Because it can go well, and you both deserve it, too.
Understanding the Illness
You probably don’t know a lot about these conditions. Don’t feel bad—most people don’t. The biggest thing is understanding this next statement completely and never forgetting it.
Fibromyalgia and chronic fatigue syndrome are unpredictable. None of us knows how we’re going to feel the next week, the next day, the next minute. We can be up and active one day, only to be bedridden then next. We don’t do this intentionally, and believe me, we wish it didn’t happen. To be with us, you need to be patient and understanding.
Now that you know the most important part, it’s time to learn a little something about our symptoms. Both of these conditions can include:
- Body-wide pain (always in FMS, often in ME/CFS)
- Fatigue (always in ME/CFS, usually in FMS)
- Unrefreshing sleep
- Cognitive dysfunction, a.k.a. “brain fog”
- Exercise intolerance (especially in ME/CFS)
You might think you understand pain, but these illnesses involve some rare pain types. Our bodies take pain signals and boost them, like cranking up the volume. We’re not “making a big deal” out of it or “too sensitive,” it’s just how our nerves and brain respond to pain signals.
We can also have pain from things that shouldn’t hurt. A hand resting on an arm. The weight of clothing. Something cold against the skin. They can cause searing pain in us, and it’s absolutely real. (That’s confirmed by brain scans in which the pain centers light up like crazy.)
The pain is coming from amped-up nerves and a nervous system that’s in overdrive at all times. Because nerves travel all through the body, so can our pain. In fact, for a diagnosis of FMS, you have to have pain in all four quadrants of the body.
So it’s not like someone who has a bad back or pain from an old knee injury. We may have stabbing pain in our abdomen one moment and burning sensations in our legs the next.
Fatigue and Unrefreshing Sleep
Now for fatigue. You might think you understand this one, as well. Everyone’s been really tired before, right? Maybe you’ve pulled an all-nighter in college or stayed out so late once that you went to work without sleeping. Or maybe you’ve had mono or a nasty flu.
Think about those times when you’ve been flat-out exhausted. Have you ever felt too tired to even lift your head off the bed? That’s what people with ME/CFS can feel like. FMS typically involves less fatigue than ME/CFS, but it can still be profound and persistent. And it doesn’t go away with rest.
That’s a big one to wrap your head around: rest doesn’t help. We might sleep for twelve hours and wake up exhausted. Sleep is rarely refreshing for us.
It doesn’t matter how smart the person is, if they have this symptom, you can expect any of a wide array of symptoms, including:
- Short-term memory loss
- Frequently lost train of thought
- Trouble remembering common words
- Frequently using the wrong word, especially when it comes to nouns
- Difficulty with math
- Spatial orientation problems
- A tendency to become disoriented
A lot of things play into our cognitive dysfunction, which is also called fibro fog or brain fog. Among these are dysfunction of multiple neurotransmitters, irregular blood flow to some areas of the brain, and abnormal activity or connectivity in certain areas of the brain.
Brain fog can be mild or severe and tends to come and go. It’s not a sign of low intelligence or learning disorders. It’s also not tied to dementia, even though sometimes it might seem similar.
The best way to handle this is with patience. Give the person time to find the right words or gently suggest one if it seems obvious. When (not if) they forget something, calmly remind them. You may want to encourage them to write things down on a calendar, make lists, or set reminders on their phone or computer.
For us, it can be extremely frustrating to have our brains glitch on us, so keep in mind that any frustration or anger that comes with it are directed at the symptom, not at you.
Chronic fatigue syndrome involves a symptom called post-exertional malaise (PEM), which means that exercise or other physical activity can cause a spike in symptoms, especially fatigue and a flu-like feeling, that can last for days. In fibromyalgia, exercise has a similar but generally less intense impact. Aerobic exercise has been shown to reduce pain and other symptoms, and therefore is recommended for both conditions. However, in some people, it can take very little exertion to trigger PEM.
For this reason, it’s important for you to follow your partner’s lead when it comes to physical activity. And yes, this does include sex. With care, someone with these conditions may still be able to have a fulfilling sex life.
The Relationship Prognosis
Will you face some challenges because of entering into a relationship with someone with these conditions? Yes. But every relationship has challenges, and you have the benefit of going in with your eyes open.
Many people with chronic illness have healthy, happy relationships. Patience, understanding, and compassion will help things get off to a good start. Best of luck to you!