She’s suffering. She’s sleep deprived. She’s got stuff going on at work. She’s the only one of my friends with fibromyalgia who actually wants advice from me. This is what I tell her.
You can get through this and you need more sleep!
When I was diagnosed with fibromyalgia back in the Nineties, nobody knew much about it. One of my doctors called it a “wastebasket diagnosis.” Another said I should only join a support group “if you want to have it forever.” (I didn’t join). It was obvious everyone thought it was psychosomatic, which is what they always think before they understand what something is. They used to say that Lyme disease and multiple sclerosis were psychosomatic, too. Then someone started marketing a pharmaceutical to treat it, and suddenly, fibromyalgia was “real.”
I never got any prescriptions - I had figured out how to manage it on my own long before I found out there was finally a treatment. Other than a couple of brief flare-ups, I haven’t had symptoms in many years.
The golden key to my recovery was to improve the quality and quantity of my sleep.
My friend is caught in the cycle of sleeplessness, then finally taking a nap in the middle of the day when she feels like she can. Her eating schedule is completely thrown off.
I tell her that if she can make herself eat on a normal schedule, her sleep hormones will start to adjust.
Nobody wants to hear advice just fired at them - who needs it? What haven’t we heard already? - so I keep reminding her of how I was in the same position that she’s in, that I remember how awful it feels, that this was the only thing that finally worked for me.
Eat on a schedule and quit taking naps, cold turkey.
One of the worst feelings is to be badly sleep deprived, finally feel like you can take a nap, and then have to fight that feeling for six hours or more until you can go to bed at a normal time. It’s entirely contrary to nature.
Unfortunately, it’s part of the cure.
What we’re trying to do is to align the hormones that make us sleepy and the hormones that cause us to wake up, so that we can feel tired and go to sleep at bedtime, and then wake up naturally when it’s time to get up.
When we eat and nap at inconsistent times, our sleep hormones get spun up. This is why we can fight exhaustion all day, only to snap awake as soon as we get in bed.
It feels extremely unfair, but the brain wants what it wants. It just doesn’t know how to ask for it politely.
What I do when I need a “reset” is to force myself to stay awake until 9:00 pm. Whether that means splashing cold water on my face, walking miles out in strong sunlight, standing up and sitting down a lot, or any other method I can imagine, I’ll do it. I keep reminding myself that I can make a trade. I can have either this one day of sleep hell, or at least three weeks of sleep disaster day after day.
My hubby and I use this technique when we travel, and we’ve found that we can now adjust to a new time zone in a single day. Just try to get on the new time zone’s meal schedule as soon as possible. Sometimes this means eating a small meal when you’re not very hungry at all. Other times it means waiting and being famished for a few hours, depending on the airport and arrival times. Step one, get on the local meal schedule. Step two, stay awake until an appropriate bedtime on the first night.
It can be done. It can be done if you have full faith and trust that one day’s suffering will pay off quickly.
The alternative is to give in to the day’s overwhelming physical signals, still feel cruddy and low-energy, and essentially punch Future You in the face over and over again.
I don’t tell my friend this part, because she isn’t ready to hear it, but my food intake is squeaky clean. I don’t drink alcohol or coffee and I don’t eat junk food or fast food. I avoid desserts because I have about a 1/4 chance of launching out of bed with screaming night terrors a few hours later. I eat more vegetables than the typical family of four.
It’s another category of information that feels cruel and judgy, but in practice is one of the few things that actually helps.
What happened when I quadrupled my vegetable consumption? My night terrors went away, and so did my migraines.
There’s something else I need to tell my friend about my experience with fibromyalgia. It basically overlaps with my first marriage. My first husband snored quite badly, and he would snort me out of a sound sleep several times a night. When he divorced me, my life was shattered - but my fibromyalgia symptoms went away. Without him by my side, I could actually sleep through the night.
I tell her that her job is starting to sound a lot like my ex-husband.
She shouldn’t be on work calls at midnight. She should be able to use her vacation time. She should be able to take weekends off without getting dragged in to handle some crisis or other. It’s a golden-handcuffs job, but the price she is paying is too high at this point.
She comes back and tells me that she emailed her boss, then went to bed at 9 PM and slept for 14 hours. She feels guilty.
Why? I say. Let’s reframe this. You can only be a peak performer when you’re healthy. Working until you are burned out is not optimal. Burning out is lose-lose. High performance means being well rested, and that’s win-win.
Chronic pain often overlaps with feelings of being trapped in an unhappy situation. The common perspective on this seems to be that emotions cause physical pain. I actually think it’s the exact opposite! Chronic pain makes it hard to think clearly, to make strong and bold decisions, to set boundaries, to feel anything other than sad and hopeless.
This is our motive to keep careful records, to take note of our own patterns. As we make changes to our surroundings and our behavior, we can notice gradual, incremental improvements. We can document those improvements and show them to our doctors. Sometimes, like I did, we can move forward and put our days of fatigue and illness behind us completely.
I've been working with chronic disorganization, squalor, and hoarding for over 20 years. I'm also a marathon runner who was diagnosed with fibromyalgia and thyroid disease 17 years ago.
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