What is Myositis?
Myositis often begins with muscle weakness, particularly in the upper arms, hips, and shoulders, making everyday tasks more challenging. Along with weakness, people with myositis may experience muscle pain or tenderness, leading to discomfort even at rest. Fatigue is another common sign, as myositis can cause exhaustion after simple activities like walking or standing for short periods. Some patients with myositis struggle with basic tasks like climbing stairs or lifting objects because of muscle deterioration. In severe cases, myositis can affect the muscles involved in swallowing or breathing, posing serious health risks. Last, skin issues like rashes may appear, especially in those with dermatomyositis, further showing myositis.
1. Muscle Weakness with myositis
Muscle weakness is one of the hallmark symptoms of myositis. This weakness typically affects the proximal muscles, particularly in the upper arms, thighs, hips, and shoulders. As the inflammation in the muscles progresses, patients may find it increasingly difficult to perform tasks that involve these areas, such as lifting objects, raising their arms, or walking up stairs. The weakness may start subtly but can worsen over time if not treated. In severe cases, it can significantly limit mobility, making even simple activities, such as standing up from a seated position, a challenge. The progressive nature of muscle weakness in myositis underscores the importance of early diagnosis and intervention.
2. Muscle Pain or Tenderness
Muscle pain, also known as myalgia, is another common symptom of myositis. Unlike typical muscle soreness from exercise, the pain associated with myositis is often persistent and not relieved by rest. This pain may feel like a dull ache or tenderness, making the muscles sensitive to touch. It is noticeable in areas of muscle inflammation and can cause discomfort even when the muscles are not actively being used. Sometimes, the pain can spread to surrounding tissues and joints, further complicating movement. Pain management is an important aspect of treatment for individuals dealing with myositis.
3. Fatigue After Walking or Standing with myositis
People with myositis frequently experience extreme fatigue, especially after physical exertion, like walking or standing. This exhaustion occurs because inflamed muscles cannot function properly, requiring more energy to perform basic tasks. Over time, the combination of muscle weakness and inflammation wears down the body’s endurance, causing patients to feel tired even after minimal physical activity. Rest doesn’t always relieve this fatigue, which can frustrate and debilitate. This symptom significantly affects the quality of life, making routine activities like shopping or even walking short distances feel overwhelming. Managing fatigue often requires a careful balance of rest, physical therapy, and medical treatment.
4. Difficulty Climbing Stairs, Standing Up, or Lifting Objects
As muscle weakness progresses, patients with myositis often find it difficult to perform movements that require strength in the legs, arms, and core. Climbing stairs becomes a major challenge as the thigh and hip muscles, which are key for such activities, lose strength. Standing up from a seated position without help may also become difficult, as the muscles in the lower body are weakened. Lifting objects, even those that are light, can feel impossible because of the loss of strength in the arms and shoulders. This decline in physical ability can limit a person’s independence, making them reliant on others for help with daily activities.
5. Trouble Swallowing (Dysphagia)
In some forms of myositis, especially in polymyositis and dermatomyositis, inflammation can extend to the muscles involved in swallowing. This can lead to a condition known as dysphagia, making it difficult to swallow food or liquids. People with dysphagia may experience choking, coughing, or the sensation that food is stuck in their throat. This can lead to nutritional deficiencies, weight loss, and even aspiration pneumonia if food or liquids are accidentally inhaled into the lungs. Dysphagia requires careful management, often through dietary adjustments, speech therapy, or medical interventions, to prevent serious complications.
6. Difficulty Breathing and myositis
When myositis affects the muscles that control breathing, it can cause respiratory complications. This is most common in advanced or severe cases where the muscles responsible for expanding and contracting the lungs become weakened. Patients may experience shortness of breath, especially during exertion or even at rest in serious cases. Over time, breathing difficulties can worsen and may require respiratory support or oxygen therapy. The involvement of respiratory muscles in myositis highlights the seriousness of the condition, as it can lead to life-threatening situations if not properly managed.
7. Muscle Swelling or Stiffness
Besides weakness and pain, some people with myositis may experience muscle swelling or stiffness. The inflammation that characterises myositis can cause the muscles to become swollen and feel rigid or stiff, particularly after periods of inactivity. This stiffness can make it difficult to move, adding to the overall decrease in mobility caused by muscle weakness. Swelling may also lead to visible changes in the affected areas, such as puffiness or a feeling of tightness in the muscles. Stiffness typically worsens in the morning or after long periods of rest, but it may improve with movement or physical therapy.
8. Weight Loss
Unintentional weight loss can occur in people with myositis, especially if the disease affects the muscles involved in chewing or swallowing, making it difficult to consume adequate nutrients. The body may burn more calories trying to compensate for the ongoing muscle inflammation and weakness. Fatigue and pain also contribute to a reduction in physical activity and appetite. In severe cases, malnutrition may become a concern, requiring nutritional supplements or other interventions to maintain body weight. Healthcare professionals should closely monitor weight loss in myositis patients, as it can be a sign of disease progression or complications.
9. Skin Rashes (Dermatomyositis)
In the specific form of myositis known as dermatomyositis, a distinctive skin rash often accompanies muscle symptoms. This rash typically appears on the face, eyelids, knuckles, elbows, knees, or back. It may present as a violet or reddish colour and can be itchy or painful. The rash is often a key indicator of dermatomyositis and may appear before or along with muscle weakness. Sometimes, the skin symptoms may flare up independently of muscle symptoms, making skin care an important aspect of treatment. Topical treatments, medications, and protection from sun exposure can help manage this rash, as UV rays can exacerbate it.
10. Fever
When the inflammation is related to fever can sometimes accompany an infection or autoimmune response. A low-grade fever may develop, showing that the body is actively fighting inflammation or another underlying issue. Sometimes, a fever can signal the onset of a flare-up in myositis symptoms or point to complications such as pneumonia or other infections, especially in those with weakened respiratory muscles. Although fever is not typically a primary symptom of myositis, it is crucial to pay attention to its presence, as it may indicate an acute phase of the disease. Medical attention is required to address the root cause and manage associated symptoms effectively.
Medication can cause myositis, such as statins. Typically, specialists treat patients in this field. What role does hypnotherapy play in this? In 2023, I was contacted by a lady who had reacted to statins and landed herself in hospital. Finding the complete experience extremely stressful, she turned to me for help. This is her story.
Case Study of myositis – Isla and her statins
Isla had been on statins for years, but suddenly her body stopped responding and she experienced intense pain. Rushed to hospital, diagnosed with myositis after tests. Her doctor informed her about the possibility of having to stay in the hospital for a year. The thought put her into a panic and it was her son who recommended me, as I had helped those with strokes to walk again.
Isla kept getting moved between hospitals in the initial months. Luckily, the WhatsApp app on her phone allowed us to have a stable connection, so we could hold weekly sessions without too much difficulty. The funniest moment being when one orderly butted in with a cup of tea!
Gradually, her condition improved with a variety of medical interventions and physiotherapy. I used the exercises given by the physiotherapist to help her visualise the tasks. Isla’s biggest fear was of falling. One of our sessions had the physiotherapist sitting in, and Isla’s progress impressed them.
In total Isla was in hospital with the myositis for nearly 7 months and once at home we worked on building her confidence to leave the house. So successful were the sessions she could go on holiday to Europe with friends nearly a year after the first symptoms appeared.
Here’s Isla’s feedback on our work together.
“Coping with a serious illness
My hypnotherapy sessions (over what’s app) with Penny over the last year during a very frightening and debilitating illness, including 6.5 months in hospital, have been a lifesaver. Her sessions helped me to have the courage to deal with it, maintain a positive attitude and determination to get better, including visualising being able to walk again. I only have to say to myself ‘calm’ and my body relaxes. I have used her recorded sessions to get me to sleep throughout my illness and am still using them now that I’ve come off sleeping tablets. Aside from the fact she’s a lovely person, I have no hesitation in recommending her as a hypnotherapist. She helped me cope in the darkest moments of my life, and I can’t thank her enough!”
You can find out more about Myositis at myositis.org.uk