There are over 150 different types of neuromuscular disorders. While symptoms and progression vary depending on the diagnosis, there are certain physical challenges that are commonly experienced.
Learn ways to manage:
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 force 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 as the veins become more leaky and the one-way valves that keep the blood from draining back down the body fail.
What can I do?
- Movement reduces swelling. Walking, changing positions frequently, stretching and light exercise are some of the best ways to keep the blood circulating in the body. 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.
- Compression stockings. Stockings and medical devices that inflate or deflate to squeeze the legs and feet can also help with swelling. Learn more about Assistive Devices
- 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.
Did you know? 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.
People with neuromuscular disorders may experience muscle cramping. Often, they are caused by problems with the nerves and not the muscle.
What can I do?
- Try stretching. In many cases, you can ease cramping by keeping the affected muscle warm and by gently stretching it or having your caregiver stretch it.
- Medication. Your doctor may prescribe medication if your cramps are frequent or severe.
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 have discomfort in your lower back, neck and shoulder blade region.
What can I do?
- Identify appropriate stretches. Ask your physiotherapist to suggest exercises to help prevent muscle and joint discomfort. Exercises may be either active (doing it yourself) or passive (with assistance from a caregiver). Learn more about Exercise and Recreation
- Massage therapy. Massage can also help to relieve the symptoms of joint pain and muscle stiffness. Learn more about massage and other alternative therapies
- Talk to your doctor or therapist. There are assistive devices and strategies to alleviate pain. For examples, special cushions, chair backs, lumbar (lower back) and cervical (neck) rolls are available to help maintain correct sitting posture.
- Change positions frequently. Arrange for your caregivers to change your position every couple of hours throughout the day and night. This will help to prevent skin sores and pain. TIP: Some people with neuromuscular disorders improve their comfort in bed by using a sheepskin, egg crate foam, a satin bottom sheet or a vibrating air mattress.
People with a neuromuscular disorder frequently experience moderate to severe fatigue. Due to exhaustion, you may even experience difficultly speaking, concentrating, or breathing.
Weakening muscles, level of activity, respiratory status, sleep habits, and certain medications may cause or worse fatigue.
What can I do?
- 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 backburner. 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. Ask a support worker for shortcuts and other creative ways to accomplish daily activities or look into medical aids that can make your day easier.
- Give yourself a break. People with neuromuscular disorders have to work harder to do the things that everyone else takes 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.
- Special Note: Waking up feeling fatigued or light-headed may be an early sign of breathing problems. You should report this to your physician. You must ensure that oxygen AND carbon dioxide levels in your blood are being monitored, and, if necessary, appropriate interventions are taken to manage your respiratory health. Learn more about caring for your respiratory system
Gripping and Holding Objects
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 can become frustrating.
What can I do?
- Consult an occupational or physical therapist for specific strategies to assist you with weakened grip strength
- The therapist may prescribe equipment or devices to help you maintain independence in your day-to-day activities. Learn more about Assistive Devices
Fall and injury prevention
For some individuals, the combination of fatigue and weak muscles in the lower limbs can lead to a greater chance of tripping or falling. Frequent falls may result in injuries such as cuts, bruises, or broken bones.
Here are some actions you can take to prevent injury:
Safety proof your home
- Look around for potential hazards, including:
- Sharp corners
- Uneven floor surfaces or area rugs
- Wobbly furniture
- Clutter or loose objects on the floor
- Take the appropriate action to eliminate risks,
- Install safety features, such as handrails, and obtain the appropriate medical devices to assist with stability and support. Learn more about Assistive Devices
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. The best way to get back up depends on the muscles you can still use. You may be able to pull yourself up by grabbing onto nearby furniture or another stable object or you may need to ask someone for help. You may only need a little support, or you may need two people to assist you into a chair or wheelchair. It is important that caregivers not strain themselves, but make you comfortable until additional help is available. Ask your therapist to teach you and your caregivers the best method of recovering from falls.