Top Tips for CFS Troubles
The CFIDS Association regularly receives tips from CFS patients and authorities on various ways to manage challenges common to the illness. In 2006, the CFIDS Chronicle ran a series of “Solutions for Daily Living” that shared 8 to 10 tips on a given topic that many people with CFS face. This sampling of tips is culled from the topics that got the most positive feedback from readers.
Making the most of medical interactions
With CFS, good health care can be like the Holy Grail. Yet in today’s fast-paced world and overloaded health care system, the process can be daunting. Here are three tips to help you make the most of your medical interactions.
Medical Visits Tip 1:
Fatigue is one of the most frequent medical complaints that health care workers hear—yet the fatigue of CFS is distinct in its severity. Instead of just saying you feel fatigued, be specific in your description. Illustrate the severity of the fatigue using concrete examples and contrasting them with your pre-illness state. Use similar methods for describing pain and cognitive problems.
Medical Visits Tip 2:
When trying a new supplement or medication, keep a record of your scope of symptoms before and throughout the treatment so you can accurately track any changes. Improvement may be subtle over time. In other cases, a treatment may alleviate one symptom but bring on other side effects. Tracking your progress can help you and your doctor more effectively decide if the treatment is worth continuing.
Medical Visits Tip 3:
Treatment for CFS often means that you will have more than one doctor. Between the variety of health specialists and the quantity of information available on the Internet, you may end up getting facts from many sources. If you’re feeling overwhelmed with information, it may be a good idea to choose one doctor to be your main source of information—one you can turn to for clarification. Choose the one you most easily communicate with, and agree upon your information strategy.
Battling brain fog
People with CFS often experience cognitive difficulties such as memory lapses and trouble processing information. Here are some tips to help clear the fog.
Cognitive Tip 1:
Distractions are the enemy of concentration. Background noise, conversation and attempts to multitask can get in the way of focus. Try to keep the TV off when working on something that requires attention. Avoid doing two things at once or having a conversation while working on a cognitive task. And don’t feel guilty about having to pare things down. Productivity gurus are now advising businesses that multitasking actually impairs work quality. If the corporate world can recognize the value of pacing tasks, so can you.
Cognitive Tip 2:
Memory aids abound, from PDAs and elaborate planners to sticky notes and calendars of all sizes. But not all of these items work equally well for everyone. Find what works for you and use it. Generally speaking, the simpler the better.
For example, many people report that color-coding their calendars for medical, household and social activities helps them keep better track of tasks and engagements. The key is to keep the same tool close at hand and write things down immediately—even if you later transfer your “spur of the moment” notes to another device.
One CFIDS Association member reports coping with her worst days of brain fog by writing important tasks for the day on individual, loose-fitting rubber bands that she wears on her wrist. As she completes a task, she removes the corresponding band.
Cognitive Tip 3:
Many people experience better cognitive performance during certain times of the day. For instance, some people with CFS have concentration problems in the early morning. Others experience higher capacity first thing in the morning and wear down mentally as the day progresses. Try to determine the times you experience mental peaks (and valleys) and plan your activities around them.
CFS can be very isolating. Lack of energy, lack of understanding, physical pain and limited mobility can significantly limit the chance to connect with others. Here is some practical advice that could help.
Isolation Tip 1:
Make it as easy as possible for you to reach out to others by streamlining the social outlets that remain open to you.
For example, keep a list of friends’ and family members’ phone numbers right by the phone so you don’t have to look them up when you have the energy to call. One Association member describes feeling less inhibited about reaching out when she’s easily able to choose different people to call rather than leaning heavily on one or two contacts.
It also pays to learn what community centers, support groups and activities exist in your area. Knowing what’s available and how to get there can make it that much easier to take advantage of those resources when you’re able. Then, when you’ve got the energy or the need to venture out, you’re not wasting any of it wondering where to go or what to do.
Isolation Tip 2:
With modern technology, you can commune with people across the globe without ever leaving your home. It’s no wonder that people with CFS and Internet access are using it to connect with each other.
CFS weblogs (or blogs) are sprouting up in abundance. The “bloggers” use their sites to talk about CFS and exchange messages with visitors. CFS bloggers often describe how much more connected they feel from having the outlet to use.
Abide and CFSsquared are just a few of the CFS-related blogs out there. For more on CFS blogging, see Jennie Spotila’s CFIDS Chronicle article “Welcome to the CFS Blogosphere!”
Isolation Tip 3:
Certain medications can contribute to feelings of depression. If you’re feeling isolated or anxious, ask your doctor about the medications you’re taking and whether they could be part of the problem. For example, some tranquilizers, narcotic painkillers and even steroid treatments can affect your mood or intensify depression. Your doctor may be able to adjust your medications or advise you on ways to counter or mitigate the effects.
On the flip side, there are also medications that help with feelings of isolation associated with disorders such as social phobia and depression. If you suspect your sense of isolation may be a sign of a more urgent problem, ask your doctor about treatment options. Together you can determine if medication may be appropriate.
Here you have a sampling of the tips CFS patients and literature have to share on a few of the subjects many people with CFS find challenging. Keep your eyes open for additional practical tips in upcoming issues of the CFIDS Chronicle.
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