The short answer is this: Exercising / Moving within your limits is absolutely recommended. Don’t exercise if you’re weak. Short sessions with breaks are better tolerated than longer sessions.
Start slow with walking or using an elliptical machine and build gradually as you become stronger. Stop and rest as soon as you feel tired. Have another person with you or bring a mobile phone, in case you run into trouble. It’s important to stop short of muscle fatigue. This point will vary from person to person depending on age, overall fitness level, MG symptoms and other factors. Be careful not to drain reserves of energy as this will delay your recovery time.
Because your symptoms can vary so much from day to day, it is important to talk with your doctor about how and when to exercise and what daily activities should be attempted. Gardening may be your preferred form of activity. Together you can set up guidelines on how much exercise/activity is healthy for you and under what circumstances you should attempt it.
Working with a trained physiotherapist who can look into the efficiency of your movements and adjust activities according to daily energy levels should be considered. Focusing on muscle groups which bring stability, good posture and flexibility to the body can be just a useful as gaining additional strength.
The MGAQ have useful resources on exercise. These are available to members. Please refer to the Resources section of this website or call 1800 802 568 for further guidance.
Myasthenia gravis does not affect the normal growth and development of the foetus. Many women with MG have successful pregnancies. Additional Specialist support should be expected.
This partially depends on the nature of your job and the extent of your MG, but many MG patients continue working successfully in some capacity.
The following factors can make your MG symptoms temporarily worse.
Infection is a very common cause and includes acute or chronic infections. Good oral health is essential.
Other known factors include stress, lack of sleep, other illnesses, overexertion and pain.
Extremes of temperature, hot or cold, are not recommended. Be aware of outdoor temperatures, avoid hot showers or baths, saunas, hot tubs and hot foods or beverage.
Some medications (see questions about medications), anaesthetics both local and generalised, and some chemicals such as insecticides, lawn treatments and others are all to be approached with caution.
Most significantly, the overuse of Mestinon can bring on the symptoms and can be dangerous. See the "About MG" FAQ question covering Myasthenia Crisis.
Treatment for MG includes self-care: getting plenty of sleep, resting your body and eyes during the day, and pacing your activities. It involves good nutrition, stress management, and daily exercise/activity/movement.
You are the one who knows your body best so take the time to keep a diary and be aware of how your body responds to the varying influences occurring in your daily living. Find ways to relax and avoid stress. Know what constitutes the 'best rest'. For example, lying down can be much more effective than just sitting and results achieved more quickly.
Plan your activity volumes giving consideration to your treatment regimes and best response periods. Make the most of your energies and do the things that help you enjoying life more. Taking the time to reprioritise will help you to cope with the ongoing symptoms of having myasthenia and this will improve your quality of life.
Asking for help, taking safety precautions in the home and when out and about, all improve your outcomes. Health professionals can help you work out which areas will be most helpful to you.
Myasthenia patients, like everyone, should eat a healthy diet and maintain a healthy weight. Extra kilos make it harder to get around and can aggravate other conditions. Even when medications like prednisone increase your appetite, it is essential to focus on a healthy diet with lots of fruit, vegetables, protein, whole grains and reasonable portions. Be conscious of any intolerances which may be inflaming the body and adding load to the immune system.
Generally, people find that the medications make them more sensitive to the effects of alcohol.
Avoid magnesium supplements unless prescribed and monitored by your doctor, since magnesium can worsen MG symptoms. Check with your neurologist before taking any supplements or alternative medications, including over-the-counter drugs, because they may affect your MG or interact in a negative way with other medications. This could include simply reducing the absorption of your other treatments so it is important to be careful.
You and your family and friends can very much benefit from talking with others and participating in a support group. Here you will find an environment of understanding. See Question 17 for options made available to you.
The Association produces a book of stories which is insightful and helpful. It can be ordered online, through the post and is available to members for borrowing. See the Association Resources page.
The MGAQ have useful information regarding exercise which is available to members. See the Resources section of this website.
Whether travelling domestically or internationally it is very important to be prepared for any eventuality. You will be away from your regular doctors. Ask your Specialist and GP for their advice. Having some form of medical alert warning on or close to you is recommended.
Also, ask your GP for a letter outlining and verifying your diagnosis, current treatments, medications and supplements plus suitability to travel including any support that may need to be requested. Carry a few copies distributed in your wallet and through your luggage. Include details for contacting the Doctors who care for you.
Take ALL medications in sufficient quantities to cover an unexpected extension of your travel plans.
Carry ALL medications and supplements in their original packaging. Prescription medication should be labelled with the prescription labels supplied by the chemist.
Carry Doctor approved supporting medications such as antibiotics, inhalers, nausea or diarrhoea treatments, creams etc that you may need should unusual circumstances arise along with detailed instructions regarding when to use them.
Investigate your suitability to receive any recommended vaccinations and have these well in advance of departure.
Investigate Travel Insurance options even for travel within Australia. It is important to carefully consider the risks involved if you plan to travel without cover.
Something to keep in mind is Australia’s Reciprocal Health Care Agreements with a number of other countries. More information, including a list of these countries can be found on the Department of Human Services Website. Countries Australia has an agreement with include Belgium, Finland, Italy, Malta, the Netherlands, New Zealand, Norway, the Republic of Ireland, Slovenia, Sweden and the United Kingdom. If you live in Australia you can get help with costs for medically necessary care when you visit any of those countries. This includes: Emergency Care and Care for an illness or injury that can’t wait till you get home.
For more information, visit the Service Australia - About reciprocal healthcare agreements page
(Response provided by Dr. Angelo Contarino – Clinical Psychologist)
Sleep disturbances have been estimated to occur in 25-30% of the population, although this prevalence tends to be higher for the MG community. Comorbid (4) sleep disorders often experienced by individuals with MG include sleep disordered breathing (SDB) (i.e., sleep apnoea - possibly requiring treatment with a CPAP (5) machine), insomnia, and/or restless legs. Individuals with MG might experience shorter Rapid Eye Movement (REM) sleep periods, increased waking during sleep, reduced quality of sleep and fatigue on waking, increased frequency of dream recall, and shallower sleep EEG (6). The majority of individuals with MG experience sleep-related disturbances even if well controlled on medical treatment. However, sleep disturbances in individuals with MG are not generally well understood. It is not clear if sleep disturbances are related to the MG, medications used to treat MG, or due to treatable sleep issues (such as excessive use of caffeine, energy drinks, herbal supplements or alcohol) that are unrelated to MG. While these sleep disorders could be partially caused by the central cholinergic deficit in MG, other factors contributing to such a disturbance could include alternate nocturnal respiratory problems, nonspecific immunological processes, increased mental fatigue, and even depression. If concerned about sleep-related problems consult your GP for investigation and possible referral to a Medical or MH specialist.
(4) Comorbid definition: a medical condition that occurs with another medical condition.
(5) CPAP definition: Continuous positive airway pressure.
(6) EEG definition: electroencephalogram (EEG) is a test that detects electrical activity in your brain.
(Response provided by Dr. Angelo Contarino – Clinical Psychologist)
An often-overlooked subject for many rare, chronic conditions is the impact that these long-term disorders can have on an individual’s sex life. The reality is that many rare diseases can alter your sex life. MG and the treatments available for it can change the way your body looks and feels. The symptoms of MG themselves can have a direct impact upon sexual activity including muscle weakness that worsens after activity and gets better after resting. This weakness may affect the face (i.e. facial gestures), eyes, neck, breathing and limbs. It may cause speech and swallowing difficulties, eyelid drooping, shortness of breath, and blurred vision. Obviously, these symptoms will vary from one individual to another and depend upon their physical and mental health. While MG can change your body, common treatments for the disorder can also have a negative impact. For example, steroids, which suppress the immune system (e.g., Prednisone), have side effects including weight gain. Gaining weight can definitely have a negative impact on your sex life, particularly if you want to look a certain way. It is important to remember that you do not have to allow the unrealistic standards set by society define your sex appeal (attempt to maintain appropriate self-compassion and acceptance). Also MG and the associated treatments can lead to feelings of depression and anxiety, which in turn can have a negative impact upon sexual functioning. If concerned about how MG is making you feel and the impact upon your sex life, certain strategies such as attempting to plan ahead might prove useful (e.g., resting earlier in the day). It is also important to talk to someone, be it with your partner, a medical practitioner, or a MH professional for counselling. Some prescribed medications can also reduce your sex drive, so if you have a reduced desire for sex, this may be another factor that comes with treatment. If you really struggle with these effects that the treatment is having, do not be afraid to consult your medical/health team about alternatives that could better suit your needs.
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