Living with a Complex Chronic Disease
Although some people with ME/CFS recover completely from their illness, most do not. But early diagnosis and good medical care can reduce the impact of this disease on a person’s physical, social and emotional well-being. Although there is no known cure for the disease, it is known that the most helpful approach is to provide treatment that will improve your symptoms and help you learn about and use ways to improve your quality of life. It is important to seek medical opinions about your symptoms, and advice about the level of activity that would be best for you. Your health care provider will also be able to refer you for some treatments (such as physiotherapy) that are covered by the Medical Services Plan of BC or other sources of help. If you have been diagnosed with ME/CFS, the following strategies may be helpful to you:
If you have had ME/CFS for some time you may have noticed that some activities and situations can make your symptoms worse. These situations are known as triggers and might include noisy or crowded gatherings, prolonged physical activity, emotional upsets, or pressure of work. If you name your triggers and use an activity diary, or daily log to track your activities and fatigue levels
during the day, you will be able to plan your activities when they will be easier for you to manage, and at a time that allows you to have a rest period if needed. This is called “pacing”. For example, if mornings appear to be a higher energy time for you, plan to do the more demanding activities such as exercise, studying, or shopping during that time, taking care not to overdo it. Set modest goals for your daily activities and pay attention to the way your body responds to various levels of activity. Feeling fatigued means it is time to rest. You may find it helpful to create a list to help plan your activities. This will help you to include activities you enjoy in your daily plan. You can divide your plan into three categories:
- Activities you must do: (shopping, work, school work)
- Activities you enjoy (being with friends, hobbies, cultural events)
- Activities you could drop or delegate to others (resign from a demanding committee, ask other family members to do some shopping, etc.)
For most normal people, moderate exercise is energizing and makes them feel better. People who have ME/CFS often find that even a small amount of exercise may make them feel exhausted because they have pushed themselves too far and crashed afterwards. People with ME/CFS who participate in an exercise program need it to be tailored to their specific needs. As a result they will usually have the positive benefits from the movement. If they are able to attend classes outside their homes they also have the benefit of being with other people who have similar ME/CFS problems.
The key is to listen to your body and do what you can that day. You will have good and bad days. On the bad days you will not be able to do as much as you can on the good days; so don’t push yourself on your bad days. Also don’t try to make up for it on your good days. Pace yourself and your exercising each time you participate. Avoid crashing by pushing yourself to do too much. Don’t try to “keep up with the class”.
The key is to do enough without overdoing it. Doing a bit every day is better than pushing yourself one day and crashing for the next 3 days afterwards. If you can’t do it every day, then try every other day. The days you grocery shop count as walking exercise; so you don’t do more walking on the days that you grocery shop. The key to success is to start with a very gentle program, pay attention to messages from your body and do some gentle form of exercise every day or every other day if possible. Start low with 3 repetitions and of the movement compared to the normal 10 to 15 repetitions. Go slow, and increase at your own rate so that you can do a few repetitions most days and not crash afterwards. No resistance or weights to start. When you are ready for this you need to get the help of a professional.
Exercise programs may include:
- Range of motion exercises while you are bedridden
- Mobilizing slowly if you are bedridden, slowly walking back and forth to your bed throughout the day to improve your strength
- Stretching Exercises that improve flexibility and help with relaxation. These should not be done when muscles are “cold”, and are best done after other exercise or after a warm bath or shower. If you are bedridden, they can be done while you are in bed.
- Walking outside the house for a few minutes at a time to strengthen your muscles
- Strengthening Exercises that help build body strength, a few at a time under supervision to prevent overdoing it
that is restorative in nature and teaches relaxation
A physiotherapist, or personal trainer (or fitness expert at a community centre) that understands the specific needs of patients with ME/FM and understands the concept of pacing can help you get started with exercise suggestions and at the level that is best for you.
The aim of relaxation is to block out feelings of stress, anxiety and/or pain. These techniques also help people who have trouble with falling asleep.
There are many relaxation techniques, including:
- Deep breathing exercises
- Progressive relaxation
Here is an example of a simple relaxation technique that you can do anytime and anywhere:
Many people with ME/CFS are not able to enjoy good, energy-restoring sleep. This adds to the feelings of fatigue and exhaustion that are already part of the disease and can include:
- Problems with falling asleep
- Waking up frequently
- Restless Leg Syndrome (numbness and tingling in the lower limbs, and muscle twitching)
- Sleep apnea (loud snoring, with pauses in breathing, followed by a loud snort or gasp when the person starts breathing again)
- Referral to a sleep specialist or sleep clinic can help with a diagnosis and ways to improve the quality of your sleep. Some of these may include:
- Raise your activity level during the day, to the level you can tolerate
- At bedtime, include a quiet, relaxing activity such as a warm bath
- Play a recording of relaxing sounds
- Have a regular bed time and plan for 8 to 10 hours of sleep per night
- Make sure your bed and pillows are comfortable, with good support for your neck, such as a cervical pillow.Medications (“sleeping pills”). Most sleeping pills will help you go to sleep, but do not help you to have a deep, energy-restoring sleep. Consult your doctor if you think sleeping pills might help you, and be sure to learn about side effects and safe use of these medications.
Good nutrition is a known factor in good health. For people with a chronic condition such as ME/CFS, nutrition plays an even more important role in healing and becoming as healthy as possible.
Manage Your Pain
- Eat within half an hour of getting out of bed so you have some energy to start the day.
- Ideally eat 3 meals and 1 to 2 snacks every day.
- Try to eat a total of 5 to 7 vegetables and fruits a day and eat the brightly coloured ones for best nutritional value.
- Keep your calories low by getting rid of the cookies and goodies and replacing with whole grains and rice. If you are not as active because of your illness, you need less calories. Most women need to keep their starch intake to one serving per meal since they are less active.
- Consult the Canada Food Guide.
- Avoid caffeine and alcohol.
- Eat organic foods free of pesticides if eating highly pesticided foods - avoid the dirty dozen.
- Include foods rich in omega-3 (an essential fatty acid) such as salmon, mackerel, herring, sardines, halibut, flaxseed, pumpkin seeds, and canola oil. Avoid fish high in mercury and PCBs - check Canada's fish guide (need to review this site: http://www.toronto.ca/health/fishandmercury/pdf/guide_eat_fish.pdf).
- Drink 6 to 8 glasses of filtered or spring water every day.
- Ask your pharmacist to recommend a daily multivitamin (no iron if you are past menopause); Take calcium and Vitamin D to reduce the risk of osteoporosis.
- If you have food allergies or intolerance, ask your doctor to refer you to an allergy specialist to help with your dietary planning.
Each person experiences pain in a unique way, related to his or her history, culture, and attitudes toward health and illness. Also, the experience of a person with long-term, chronic pain is different than that of a person who has post- surgical pain or pain from an acute injury. Any approach to pain relief must take these differences, and the needs of the individual, into account. People with ME/CFS have found the following strategies helpful in controlling their pain:
- Relaxation exercises and gentle stretching
- Massage therapy, physiotherapy, and/or osteopathic treatment
- Warm baths with Epsom Salts
- Acupuncture and acupressure
- Botox injections
- Lidocaine (local anaesthetic) injections
- Nerve blocks
Various medications can be used to help improve the quality of life of a person with ME/CFS by helping to control painful symptoms. The range of possible drug treatments includes the following types of medications:
- Analgesics (pain medications) such as Acetaminophen and Non-steroidal Anti-inflammatory Drugs (NSAIDS).
- Antidepressants that have pain modulating effects (a change in the way the pain is felt), are useful even in the absence of symptoms of depression. They are used at the lowest effective dose.
- Anticonvulsants that have pain modulating effects. They are used at the lowest effective dose.
- Other medications with pain moderating and other beneficial effects. These include a variety of pharmacological agents that at this time require further randomized controlled trials.
- Opioid drugs (for patients with severe pain that does not respond to other treatment approaches.
Some drugs (including those available over the counter or through health food stores) can interact with other drugs (they may have a stronger effect, or cause another drug to be more potent). It is very important to make sure any health care provider is aware of all of the medications you are using when new medications are being considered for your treatment.
People with ME/CFS may notice that their symptoms become worse when they are in certain locations or situations. This is because people with ME/CFS often have increased sensitivity to certain toxic or irritating substances. These can include toxic substances such as cigarette smoke, petroleum products and pesticides. They can also include perfumes, dust, and moulds that may not bother most people, but can have a strong effect on someone with ME/CFS. The only way to avoid problems with these substances is to avoid being exposed to them (which can be difficult). You may not be able to control everything in your environment, but there are some steps you can take within your own living space, such as:
- Remove all sources of dust and mould (all those “dust-collectors”, houseplants, etc.).
- Raise your awareness about harmful cosmetics and discontinue use of toxic personal care products. (need a reference here to acknowledge David Suzuki's website/info)
- Use cleaning products that are labelled “non-toxic”, “eco-friendly” or “safe”, or make your own using baking soda and vinegar.
- Know which toxic substances are commonly found in cleaning and other products
- Avoid the use of pesticides and herbicides. (need to acknowledge source)
- Keep the humidity in your house between 30 and 50 percent to reduce mould growth.
- Remove carpets if possible. If not, use a HEPA filter vacuum for cleaning.
Any long-term illness or condition can have a major impact on a person’s emotional health due to many reasons. For people with ME/CFS these can include:
- Having to deal with the physical symptoms on an ongoing basis.
- The challenge of finding a diagnosis and effective treatment in a medical system that cannot always respond.
- Dealing with loss, which can include the ability to work and be employed at a regular job, the ability to enjoy strenuous physical activities, and/or the ability to function as a fully active member of a family.
- Having a disease that “doesn’t show” and dealing with people who do not understand ME/CFS.
- Being aware that there is no known cure for ME/FCS.
- Many people with ME/CFS have felt helpless and unable to do anything to improve their condition. When a person changes the way they think and feel about their illness, they begin to feel more in control. They are able to develop more effective coping skills and find good sources for emotional support.
A change in perspective can happen when a person accepts that he or she has a complex, chronic disease but believes that there are many ways to lessen its impact on his or her quality of life. If you can develop coping skills that allow you to pace your activities so that you get enough rest, you may also be able to lower the amount of stress you feel. You can set reasonable and “doable” goals for yourself and start to work on those that you think are most important. You can re-set your goals as you go along. You can learn more about helpful resources in the community, about safe and effective treatments, exercise programs, and healthy eating.
The goal is for you to find your way back to healthy living and make sure that although you have ME/CFS, it does not “have you”. You are more than your illness.