Symptom Management

What can I do to manage the symptoms?

The symptoms and progression vary depending on the and the individual. In this section, you can read about ways to manage some of the common physical concerns.

I want to learn about:

89 Gene Muscle Disorders Panel
Leg and Foot Swelling
Muscle Cramping
Joint and Muscle Pain
Gripping and Holding
Falls and Injuries



89 Gene Muscle Disorders Panel

For those of you that are wondering about your neuromuscular symptoms there is a new Canadian Muscular Genetic Disease Panel available through Sherbrooke Genomic Medicine in Sherbrooke Quebec. This 89 gene muscle disorders panel tests for muscular dystrophies, myopathies and myasthenia syndromes which present with various muscle weakness patterns.

Since it covers a large number of genes, it can also be performed to accurately confirm or rule out clinical diagnosis. If you do not have a genetic diagnosis it can be used to confirm it.

Symptoms to recognize:

Symptoms of neuromuscular disease can include any or some of the following:

  • Poor balance with frequent falls
  • Muscle weakness
    • Difficulty walking or running
    • Difficulty performing sports
    • Difficulty going up stairs
    • Difficulty rising from a chair or getting up from lying position
    • Difficult getting on or off the toilet
    • Difficulty raising or keeping your arms up
    • Resulting in loss of function
  • Muscle loss, soreness, cramps or pain
  • Fatigue, daytime sleepiness or morning headaches
  • Difficulty breathing including or especially when lying down
  • Drooping eyelids

How can you access the 89 gene muscle disorders panel?

Currently this panel is accessible through most Canadian general neurologists or neurologists that specialize in neuromuscular disease. It must me requested by a physician. Depending on your symptoms patients may qualify to access this panel free of charge through a Patient Diagnostic Assistance Program. Patients that have a confirmed genetic diagnosis for their condition do not qualify unless there is a suspicion of a secondary cause of disease.

Where do I get Additional Information?

Please contact Josee Bray at 1 800 567 2873 x1201 or




Leg and Foot Swelling

Some people who have reduced mobility in their lower limbs may notice swelling (edema) in their legs and feet. Swelling can range from a minor discomfort to a more severe burning sensation. Left untreated, swelling can cause permanent damage to the veins, valves, and skin.

What causes swelling?

Swelling occurs when fluid accumulates in the tissues of the body. When a person sits or lies down for long periods, the body has to work harder to bring the blood back up to the heart from the legs and feet. As a result, blood pools in the lower extremities. This pressure causes the veins to expand and seep out water into the surrounding tissues. Swelling can worsen over time.

What can I do?

Movement reduces swelling Walking, changing positions frequently, stretching and doing light exercise are some of the best ways to keep the blood circulating. Range of motion exercises may help prevent and treat swelling.
Learn more about exercise and recreation

Massage Having a caregiver gently massage your legs and feet can improve circulation and reduce swelling.

Wear compression stockings Stockings and medical devices that inflate or deflate to squeeze the legs and feet can also help with swelling.

Let gravity do the work of circulating blood through the body When sitting or lying in bed, try raising your feet to the same level or higher than your heart. Be aware that ordinary reclining chairs may actually worsen the effects of swelling by putting pressure on the calves and hips. In this situation, it helps to lower the backrest when raising the footrest.




Muscle Cramping

People with neuromuscular disorders may find that their muscles cramp, twitch, or spasm. This can be uncomfortable and sometimes painful.

What causes muscle cramps?

A muscle cramp is an involuntarily and forcibly contracted muscle that does not relax. When we use the muscles that can be controlled voluntarily, such as those in our arms and legs, they contract and relax as we move our limbs. Similarly, muscles that support our head, neck, and trunk contract in a synchronized fashion to maintain our posture. When muscles — or even a few fibers of a muscle — contract involuntarily, it is called a spasm. If the spasm is forceful and sustained, it becomes a cramp.

What can I do?

Try stretching In many cases, you can ease cramping by keeping the affected muscle warm, gently stretching it, or having your caregiver stretch it.

Apply heat or cold Use a warm towel or heating pad on tense or tight muscles. Also, taking a warm bath or directing the steam of a hot shower onto the cramped muscle can help.

Consider medication Your doctor may prescribe medication if your cramps are frequent or severe. For example, anticonvulsants can provide short-term relief by blocking the signals from the spinal column that cause muscle spasms.
Learn more about stiffness, cramps or twitching




Joint and Muscle Pain

Pain and stiffness may result when muscles and joints are not used. For instance:

  • When weak arms hang unsupported from the shoulder, the shoulder joint can become painful.
  • The hip joints can become stiff after sitting for long periods in a soft, saggy seat.
  • If the muscles that maintain your upward posture weaken, you may sense discomfort in your lower back, neck, and shoulder blade region.
What can I do?

Identify appropriate stretches Ask your physiotherapist to suggest exercises to ease discomfort in your muscles and joints. Some exercises can be done by yourself, while others require assistance from a caregiver.
Learn more about exercise and recreation

Consider massage therapy Massage can help relieve the symptoms of joint pain and muscle stiffness.

Talk with your doctor or therapist There are assistive devices and strategies to alleviate pain. For example, special cushions, chair backs, lumbar (lower back) and cervical (neck) rolls are available to help maintain correct sitting posture.

Change positions frequently Arrange for someone to change your position every couple hours throughout the day and night. This will help prevent skin sores and pain. Some people with neuromuscular disorders improve their comfort in bed by using a sheepskin, egg crate foam, satin bottom sheet or vibrating air mattress.





People living with a neuromuscular disorder frequently experience moderate to severe fatigue. This may affect your ability to carry out activities, speak, concentrate or breathe.

There are several factors that influence fatigue:

  • weakening muscles
  • level of activity
  • respiratory status
  • sleep habits
  • certain medications
What can I do?

Pay attention to your breathing Fatigue can be a symptom of insufficient ventilation. If you are waking up feeling tired or light-headed, you may be experiencing warning signs of breathing problems. Talk to your doctor about monitoring the levels of oxygen and carbon dioxide in your blood.
Learn more about ways to manage your respiratory health

Conserve your energy Determine which tasks and daily activities are most important to you, and then pace yourself so that you have the energy to accomplish them. Put low priority items on the back-burner. Be sure to schedule rest periods into your day.

Say yes to help Accept offers of help from friends, caregivers, and neighbours. If it’s right for you, a home-worker can assist with cleaning and cooking.

Talk to your occupational therapist An OT may suggest assistive devices and creative ways to make your daily activities easier to accomplish.

Give yourself a break People with neuromuscular disorders have to work harder to do things that other people take for granted — moving around, personal care, even breathing. It’s okay to admit that you may not be able to keep up with others on some tasks.




Gripping and Holding

Some neuromuscular disorders cause people to lose strength in their hand and wrist muscles. This makes it harder to manage small movements like holding a pen to write or cutlery to eat, turning a key to start a car, or grasping a handle to open a door. Daily activities such as dressing, undressing, and personal grooming may become frustrating.

What can I do?

Consult an occupational or physical therapist The therapist may recommend specific strategies or prescribe assistive devices to help you maintain independence.




Falls and Injuries

For some individuals, the combination of fatigue and weak muscles in the lower limbs may lead to a greater chance of tripping or falling. Frequent falls may result in injuries such as cuts, bruises, or broken bones.

What can I do to prevent injury?

Safety-proof your home Take action to address potential hazards, such as:

  • Sharp corners
  • Uneven floor surfaces or area rugs
  • Wobbly furniture
  • Clutter or loose objects on the floor

Install safety features Items, such as handrails, and other assistive devices can provide additional stability and support.

Learn how to fall Believe it or not, there is a right way to fall. To avoid a head injury, it is better to drop straight down instead of falling forward or backward.

Learn what to do in case of a fall Ask your therapist to teach you and your caregivers the best way to safely get up after a fall. This will depend on the degree of muscle weakness and which muscles are affected. You may be able to pull yourself up by grabbing onto nearby furniture or another stable object, or you may require another person to assist you into a chair or wheelchair. It is important that caregivers learn the appropriate way to lift and transfer you to avoid strain or injury to either of you.

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