Flare-ups are an unavoidable part of life for a lot of people with fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS). Both illnesses can include flares (I use that term interchangeably with flare-ups), when symptoms get significantly worse; and remissions, when symptoms recede to lower levels.
Not all cases flare and remit. For those that do, it's sometimes possible to predict flare-ups. Symptom-triggers such as the holiday season, the menstrual period, busy times at work and seasonal temperature changes may be easy to predict and prepare for. On the other hand, things like the flu, a car accident, bad news or a sudden stressful event can take you off your feet without notice, at a time when you'd expect to be feeling okay. Sometimes, a flare-up may strike out of the blue for no apparent reason.
During a flare, symptoms can be seriously limiting or fully incapacitating. Severe pain or fatigue may leave you unable to leave the house, prepare food for yourself or even take a shower. That means things like grocery shopping and running to the pharmacy are out of the question.
So you're not left without necessities when you need them the most, it's important to be prepared for a flare-up to hit at any time.
Keeping the Right Things on Hand
What things do you need to get through the day? Make a list, starting with the most obvious things and then moving onto those that are particular to your needs when you're really in bad shape. The first item? Food.
Foods to Stock Up On
- Extra canned goods and frozen foods
I need to make sure there's enough food to get my family and me through several days. I try to keep several simple meals on hand that my husband can quickly throw together after work, as well as things my children can prepare by themselves. (It's gotten much easier since they've gotten old enough for that!) Non-perishable items are great for this because you can put them in an out-of-the-way place and just leave them for when they're needed.
- Lots of Specialty Foods
I'm gluten- and lactose-intolerant, so I can't just grab anything or I'll make myself worse. It's hard for my husband to shop for me because label-reading can get complicated, so I have to be especially diligent about this.
- Healthy Snacks
Potato chips and candy are unlikely to give your body what it needs to come out of a flare! However, when you can't get to the grocery store, it's hard to keep yourself in fresh fruits and vegetables to nibble on. I like to keep things like nuts and dried fruit on hand so I can get some nutritional value from snacks.
Medications & Supplements
It can be hard to stock up on an emergency supply of prescription drugs, especially since many of the ones we commonly take (such as antidepressants, sleep meds and narcotic pain relievers) tend to be carefully doled out. However, you may be able to find ways to make sure you're not without the drugs you need when a flare strikes.
Some pharmacies operate purely through the mail, utilizing the phone or Internet for ordering. Many traditional pharmacies are now offering these options as well. You do have to get your drugs ordered several days before you're out, so this requires some planning. I've seen some pharmacies offer automatic refills. It can pay to explore your options. You may also want to look into ordering supplements.
- Larger Quantities
For drugs that aren't tightly controlled, ask your doctor if it's possible to prescribe larger quantities, which means fewer refills. (It's sometimes cheaper as well.) If you're facing a predictable flare, you may be able to talk to your doctor ahead of time about early refills; just keep in mind that early refills may not be possible for a variety of reasons. You should check to see if your insurance will cover them, too.
- Plan Ahead
An easy way to see ahead of time what you're getting low on is to use a weekly pill sorter. When you fill up, pay attention to how much is left in the bottle. I try to get things purchased or ordered when I get down to a two-week supply.
Passing the Time
Days can drag when you can barely move and have to lie there alone for hours on end. You may not be able to do much, but you should have something available to do. The form of entertainment will likely be limited by your specific symptoms, but some ideas include:
- Movies & TV
Action-packed, adrenaline pumping shows and movies probably aren't your friend during a flare, and brain fog may eliminate anything thought-provoking or deep. Look through your movie collection and identify the ones that you think would work on bad days. Consider whether they'll be too visually stimulating, depressing or cerebral. A digital video recorder (DVR) or a movie service like Netflix can provide appropriate entertainment to help pass the time. (Read more on the impact movies can have on us.)
- Reading Material
Think about the typical severity of your flare-related brain fog and what you can reasonably read. It may be that light subject matter is okay in a novel, or you may have better luck with short stories or magazine articles.
- Craft & Hobby Supplies
You may not be able to do all the things you like. But if you have a craft or hobby that can help occupy your time, it helps to have extra supplies set aside for those down times.
- Games & Puzzle Books
Research actually shows that immersive video games can distract your brain from pain. So, if the lights, noise and action of these diversions aren't too much for you, electronic games may be a good option. If that's not the case, puzzle books (crosswords, word-finds, Sudoku, etc.) may be better.
- Computers & Internet
Of course, there's an endless array of games, activities and things to do online. You might also benefit from finding an online forum where you can talk to other people who are experiencing the same issue.
Whatever you choose to pass the time, try to remember that being in the same position or performing a repetitive motion may cause pain or muscle fatigue and make you feel worse.
More on Being Organized & Prepared with FMS & ME/CFS: