Do you also feel like your arm and leg strength is gradually decreasing after turning 50? Maybe it's harder to hold a cup properly, button a shirt, or are you tripping more and more when walking? Although we often think of these things as normal aging, sometimes there may be a condition called Inclusion Body Myositis (IBM) behind this. Today, we will talk about this very simply, in a way that you can understand.
Simply put, what is Inclusion Body Myositis (IBM)?
Inclusion Body Myositis (IBM) is a condition that gradually weakens your muscles . The most important thing is that it is not painful. Most of the time, symptoms start after the age of 50. Think of it like the battery in a cell phone slowly draining, slowly losing strength.
This disease progresses slowly over many years. It is not a life-threatening condition, meaning it will not kill you. However, over time, it can make it difficult to perform daily activities. Sometimes, one side of the body may be affected more than the other. About half of people with this disease may also have difficulty swallowing over time .
Although there is no specific cure for this yet, physical therapy can help you maintain your muscle strength for as long as possible.
What are the main symptoms of this condition?
Muscle weakness in IBM doesn't happen all at once. It happens very gradually, over time. Some people may first feel it in their legs. Others may feel it in their hands, wrists, or fingers. Some people start to find it difficult to do delicate tasks like buttoning a shirt or writing with a pen. Others start to fall frequently while walking.
As the disease progresses, you may experience things like this. Let's look at this in a table to understand it clearly.
| Symptom | A simple explanation |
|---|---|
| Weakness in the arms, legs, shoulders, and hips | It becomes difficult to get up from a chair, climb stairs, or lift heavy objects. Items you pick up fall to the floor. |
| Difficulty swallowing and neck weakness | It feels like food is stuck when swallowing. It's hard to keep your head straight, as if your head is tilted forward. |
| Muscle Atrophy | Weakened muscles become smaller in size. This means that the muscles in the arms and legs appear to be wasting away. |
| Mild pain (Myalgia) | Although there is no severe pain, some people may experience a slight ache in the muscles that they feel all the time. |
Why does this kind of disease occur? What is the cause?
In fact, doctors have not yet found a specific cause for IBM. We call such diseases ``idiopathic``.
But research on this has found several things:
- Inflammation: Like other types of myositis, this one also involves long-term inflammation, or inflammation, of the muscles. This is what causes the muscles to weaken. But it is not yet known why this inflammation occurs. It is suspected that it may be an autoimmune disease, in which our own immune system attacks our own body.
- Inclusion Bodies: This is where the disease gets its name. Abnormal protein clumps called "inclusion bodies" form inside muscle cells. It's like unnecessary garbage piling up inside our cells. It's believed that these protein clumps disrupt the normal functioning of the cells.
How does a doctor diagnose this?
When you talk about symptoms like these, the first thing your doctor will do is ask you a good question and examine your muscles, because there are other diseases that have similar symptoms to IBM, such as polymyositis and myasthenia gravis.
Therefore, the doctor pays special attention to things like:
- Which muscles are weak?
- Is one side of the body more affected?
- Do you see that your muscles have worn out?
- At what age did the symptoms begin?
After that, several tests like these may be done to rule out other conditions and confirm the diagnosis.
| Test | What do you see in this? |
|---|---|
| Creatine kinase (CK) test | This is a blood test that measures the level of an enzyme that accumulates in the blood when muscles are damaged. |
| Other blood tests | Check for viral infections or other autoimmune diseases. |
| Electromyogram (EMG) | The electrical activity in the muscles is measured. |
| Nerve conduction study (NCS) | It measures the speed at which electrical signals travel through the nerves that control muscles. |
| The most definitive test: Muscle Biopsy | |
| This is the best and most definitive way to confirm IBM. What you do here is take a very small piece of the affected muscle under anesthesia and examine it under a microscope. Then you can see exactly whether those abnormal protein clumps (inclusion bodies) mentioned earlier are present inside those cells. | |
What are the treatments for this?
This is where we need to be honest. There is no cure for IBM yet. Corticosteroids or immunosuppressant drugs used for other inflammatory conditions do not work well for this disease.
But that doesn't mean there's nothing we can do. There are many things we can do to manage the disease and make life as easy as possible.
- Physical Therapy: This is essential. The right exercises and techniques will help you maintain your muscle strength for as long as possible.
- Occupational Therapy: When your illness makes it difficult to perform daily tasks, such as getting dressed or eating, you will be taught alternative methods and devices that can make those tasks easier.
- Speech-Language Pathology: If you have difficulty swallowing, a speech therapist can advise you on ways to eat safely.
Over time, some people may need an assistive device, such as a wheelchair.
What can I do to live well with this condition?
IBM is a progressive disease. So, you have plenty of time to adjust to the changes that lie ahead. It's best to make a long-term plan to stay physically and mentally healthy.
Here are some things you can do:
- Continue your exercise program: Whether it's with a physical therapist or at-home exercises, continuing to do it as a habit can help maintain the strength of your muscles.
- Adopt a healthy lifestyle: Eat a well-balanced diet, get enough sleep, reduce stress, and maintain good relationships with your loved ones. All of these will give you strength.
- Join Support Groups: Talking to people who have had similar experiences as you can provide great psychological relief and practical advice.
- Make changes at home and at work: There are plenty of gadgets and methods in the world that can make your daily tasks easier. Explore them.
- See your doctor regularly: Stay in regular contact with your doctor. If you develop any new symptoms, such as difficulty swallowing, let them know immediately.
- Be aware of clinical trials: Researchers are constantly testing new treatments for IBM. You may have the opportunity to participate in one of these trials.
Inclusion Body Myositis is a disease that can suddenly appear in the second half of life, without any apparent cause. It is not something that anyone expects. But since it is a very long journey, you have plenty of time to plan for the changes that lie ahead. By thinking positively and trying to maintain your overall health, you can live happily for many years to come.
Take-Home Message
- Inclusion Body Myositis (IBM) is a disease that gradually weakens muscles as we age. It is not life-threatening.
- Although there is no specific cure for this, it is very important to maintain muscle strength through physical therapy and exercise.
- When living with the disease, you can improve your quality of life by learning new ways to do daily tasks and using assistive devices to make them easier.
- If you develop any new symptoms, such as difficulty swallowing, notify your doctor immediately.
- With a positive attitude and proper management, you can live well with this condition.
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