When you have fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS), you hear a lot about the need for lifestyle changes.
That’s a pretty broad term, though, and the very thought can be overwhelming. What do you need to change? How much do you need to change? Where should you start?
The thing to do is break it down into manageable parts. Once you start identifying aspects of your life that may be contributing to your symptoms, you can start making positive changes. Everyone’s life is different and every case of FMS or ME/CFS is different, so there’s no one-size-fits-all approach. However, looking at the different things in this article can help you get started making changes to help improve your quality of life.
Pacing is basically just slowing down until your activity level is a better match for your energy level. It’s a simple concept, but with most of us having hectic lives and very little downtime, it’s a tough goal to achieve.
Chronic illness doesn’t change the fact that we have certain things that just have to get done. What we generally do is push ourselves to do everything on good days. The problem with that is you might end up laid out for the next 3 days because you did more than your body could handle. This is sometimes called the push-crash-push cycle, and it’s important to break out of that.
Several pacing techniques can help you manage your responsibilities in a way that better safeguards your well being. By incorporating them into your daily life, you can learn to get things done while staying within your energy limits.
Holding a Job
One of the greatest fears most of us with chronic illness have is, “Can I keep working?” Our jobs provide us with a lot of things we need—income, health insurance, self-worth, etc.
Each of us has to find our own answer to this question. Many of us keep working, perhaps with reasonable accommodation from our employers; many change jobs or positions, find a way to work fewer or flexible hours or look for ways to work from home. Some find they can’t continue working.
Debilitating illness like FMS and ME/CFS are covered under the Americans With Disabilities Act (ADA), which means you’re entitled to reasonable accommodation from your employer. These kinds of accommodations may help you keep working. Making other lifestyle changes that help manage your symptoms can also make it easier for you to work.
If your symptoms become too severe for you to continue working, you may qualify for Social Security Disability or Supplemental Security Income (for those with a shorter work history). Also, talk to your employer about whether you’re covered by long-term disability insurance and look into other disability benefits programs.
While there’s no single diet proven to relieve symptoms of FMS or ME/CFS, a lot of us find that eating a healthy diet helps, and also that emphasizing or avoiding certain foods or food groups helps us feel better.
It’s also common for us to have food sensitivities that can exacerbate FMS/ME/CFS symptoms and cause symptoms of their own.
Some of us have problems with multitasking and short-term (working) memory, and that can make cooking especially difficult. Add that to pain, fatigue, and low energy, and it can too often lead to less healthy convenience foods. Many of us have found ways to overcome these obstacles and stick to healthier eating habits.
When you have debilitating fatigue and pain that get worse every time you exert yourself, it seems ridiculous to suggest exercise. The important thing to know about exercise, though, is that it doesn’t need to involve hours of sweating it out at the gym—that doesn’t work for us.
Instead, you need to find a comfortable level of exercise for you. If it’s 2 minutes of stretching to start with, or event just 2 stretches, that counts. The key is to be consistent about it and not overexert yourself. Over time, you may be able to increase the amount you’re able to do. And if not, that’s OK.
Especially with ME/CFS, even a few minutes of exercise can make you feel worse for a couple of days. That’s because of a symptom called post-exertional malaise, which makes you unable to recover from exertion like most people do. Be sure to take it slowly and gently, and back off if what you’re doing makes you crash.
Caveat: In severe case of ME/CFS, exercise of any kind may be problematic. Use your best judgment and, if you have good doctors, work with them to determine what is appropriate for you.
Exercise is important for us, even though we have to be careful. Numerous studies show that proper levels of exercise can help alleviate fibromyalgia symptoms and increase energy. When your muscles are limber and toned, they tend to hurt less and be less prone to injury. Beyond that, we know exercise is good for our general health, and the last thing we need is more health problems.
Get Better Sleep
A key feature of both FMS and ME/CFS is unrefreshing sleep. Whether we sleep 16 hours a day or just a few hours at a time, we don’t feel rested. Those of us with FMS are especially prone to multiple sleep disorders on top of that, making quality sleep a rarity.
The cruel irony is that quality sleep is one of the best remedies for these conditions. While we may not be able to solve all of our sleep issues, we can do a lot to improve the amount and quality of our sleep.
Some of your sleep issues may need medical attention. If you have symptoms of sleep disorders, your doctor might suggest a sleep study to help sort out exactly what’s going on. Getting proper treatment can make a big difference in how you sleep and feel.
Anyone who’s living with a chronic, debilitating illness has to come to terms with health-imposed limitations and changes, and that can be hard. Illness can make us feel afraid, insecure, hopeless, depressed, and bad about ourselves.
Just as we need to learn pacing techniques and improve our diets, we need to develop good coping skills. This might mean changing your outlook on things, and a lot of people need help making that adjustment. Professional therapists can help, through traditional talk therapy or cognitive behavioral therapy (CBT).
That’s not to say CBT should be used as a primary treatment for these illnesses. That’s a controversial practice, especially when it comes to ME/CFS.
Part of coping with your illness is reaching acceptance. That doesn’t mean giving in to your condition—it’s more about accepting the reality of your situation and doing what you can to improve it, rather than fighting against it or waiting helplessly for a miracle cure to come along. Studies show acceptance is an important part of living with chronic illness and moving forward with your life.
Little Things, Big Impact
Just as seemingly little things in your daily life can exacerbate your symptoms, little changes to your daily life can help alleviate them. This could mean changing the way you dress or finding ways to keep yourself from getting too hot or cold.
No matter how bizarre or trivial your particular issues may seem, someone else with these conditions has dealt with it as well. That’s why it’s important for us to learn from each other.
Especially busy times like the holiday season can be difficult for us. Shopping, cooking, decorating and other preparations can take so much energy that we have none left for actually enjoying those special days.
However, if we learn to plan and prioritize, we can make it through those busy times with fewer problems.
Stress exacerbates symptoms for many of us with FMS or ME/CFS and having a chronic illness can add a lot of stress to your life. It’s important to learn how to lower your stress levels and deal better with the stress you can’t eliminate.
You may spend most of your time alone at home or feel distanced from other people because of your illness. It’s also hard to find people in our lives who truly understand what we’re going through.
Through support groups in your community or online, you can find people who will understand and support you. That support can help you feel less alone, improve your outlook, and find new treatments or management techniques.