Mixed connective tissue disease (MCTD) is a rare autoimmune disease with symptoms that overlap with several other connective tissue diseases, including lupus, scleroderma, polymyositis, and sometimes rheumatoid arthritis. Since you can experience symptoms from any one of these diseases at different times, MCTD is often difficult to diagnose.
When you are first diagnosed with MCTD, you might feel some relief to finally know what is going on with your body, but you might also feel scared about your future and worry about how to cope. Even when you’ve been living with MCTD for some time you may have questions and need support.
While there is no cure for MCTD there are things you can do or pay attention to that can improve your quality of life. Focusing on the emotional, physical, social and practical aspects of your day-to-day can help you manage the unpredictability of the disease.
Feeling sad, discouraged, maybe even mad after your MCTD diagnosis is normal and to be expected. Getting a diagnosis is a major life event. Experiencing symptoms like pain or swelling of your joints or fatigue that limit your daily activities can be extremely upsetting.
Adjusting to life with the disease can take time. While you’re adjusting to your new normal, you will experience ups and downs. There might be some relief to know what’s wrong and to finally have a treatment plan, but you might also be disappointed to find that some of your symptoms prevent you from enjoying the things you used to enjoy.
You may also find that you feel anxious about your treatment plans and wonder if they’re going to work or cause side effects. You might also fret about possible future symptoms. All of these feelings are normal and to be expected. Talking to friends, family, and healthcare professionals can help you work through these feelings.
While feeling scared, sad, and upset are all normal feelings when living with a chronic illness, if they persist it is important to seek the help of your doctor. If your feelings last for a long period of time and you start to feel hopeless, irritable, or begin to purposely withdraw from friends, family, or activities you love, you may be dealing with depression.
Depression is more common in people who live with chronic illness. Depression is treatable and treatment can even help improve some symptoms of your MCTD.
In a study of lupus patients, it was noted that those who had depression and anxiety had worse outcomes with the disease. Those whose depression was treated had better outcomes. Taking care of your mental health along with your physical health can help tremendously when living with MCTD.
The goal of any treatment plan for MCTD is to minimize symptoms and their effect on your daily life. You may be prescribed medications such as hydroxychloroquine for lupus-like symptoms and arthritis-type pain, or NSAIDs like Advil for general pain.
Some of the other common manifestations of MCTD include Raynaud’s phenomenon, fevers, muscle weakness, rashes, and lung involvement (which causes shortness of breath). It is important to follow your doctor’s treatment plan and asks questions if you don’t understand.
To help you live well with MCTD, your doctor may also make self-care suggestions that can help you manage the disease on your own at home. Lifestyle modifications, paying attention to your diet, and getting enough exercise are all things you can do to help.
Avoid the cold. One of the most common symptoms of MCTD is Raynaud’s syndrome, a condition that causes the small blood vessels in the fingers and sometimes toes to constrict thus decreasing blood flow. If you experience this phenomenon, your fingers can turn white or blue, or you may have a pins and needles sensation.
Avoiding the cold, caffeine, smoking, and injury can help reduce your symptoms. Keep your core warm by dressing in layers. Consider wearing gloves if you will be exposed to cold temperatures, or use hand warmers when outside in the winter.
Limit your exposure to the sun. In lupus patients, the sun can cause increased fatigue, pain in your joints, and rashes on your skin. If you notice that your symptoms from MCTD become worse when in the sun, it is best to take precautions.
Try to avoid the outdoors or seek shade when the sun’s rays are their strongest from 10 a.m. to 4 p.m. Wear sunscreen with an SPF of 30 or higher and consider wearing a wide-brimmed hat, and tight woven or protective UPF clothing.
While there is no overarching diet that has been established for MCTD, a diet that lowers inflammation in the body can be beneficial. In a study of lupus patients, it was found that a diet high in fruits and vegetables, foods that contain omega-3 fatty acids, with moderate protein intake, and high fiber can lower inflammation and the severity of symptoms.
There is also evidence that supplementation of vitamin D can be helpful as well. However, before taking any supplements it is best to consult with your doctor.
Try your best to avoid foods that cause inflammation such as those high in sugar, refined starches, saturated and trans fats. Eating a lot of processed meats, red meat, dessert, and refined grains can raise inflammation levels. A diet high in fruits, vegetables, legumes, fish, poultry and whole grains can help lower inflammation.
Remaining active with MCTD is important to living well. Regular exercise can help with your pain and fatigue and prevent further complications. Do not be discouraged if your current symptoms are holding you back from participating in activities that you once enjoyed or turned to for exercise.
Follow the advice of your doctor regarding activity level if your disease is active. Your doctor will probably advise you to not exercise on inflamed joints, as this can lead to injury or joint damage.
Although you may hesitate to exercise, especially if you are in pain, it’s important to keep moving. Though you may have days where the pain is excruciating or the fatigue debilitating, leading a sedentary lifestyle can cause more pain. It is important to find something that works for you that keeps you moving.
Your goal is to engage in at least 150 minutes of activity a week. This activity does not have to be intense. Engaging in moderate exercise is enough to keep you mobile and healthy. Aerobic exercise, along with resistance training and stretching can all lead to an improved quality of life.
Try going for a walk, biking, swimming, or hiking. Find simple stretches that can be done from bed. Use light weights or cans of soup to do bicep curls while seated in a chair. Modify workouts to accommodate your symptoms.
If you have difficulty finding an exercise routine that works for you, talk to your doctor. They can prescribe physical therapy and a therapist can work with you to develop a routine that benefits your body and works with your symptoms.
Living with a chronic illness like MCTD can make you feel alone. Finding support is key to adjusting to your new normal.
You might find it hard to talk to friends and family about your experiences. While they may be empathetic, they might not fully understand your experience and how living with MCTD affects your life, especially if your symptoms are invisible.
It is important to be open and honest with friends and family who are close to you. They usually want to help but often don’t know how.
Be specific and ask for the things you need. Perhaps it’s simply a shoulder to cry on or a listening ear, or maybe it’s that you need someone to help prepare healthy meals for you, or someone to motivate you to go on a walk. Whatever it is you need, don’t be afraid to ask.
You may also want to find support groups near your home or online communities of others who share your diagnosis. Non-profits such as the Lupus Foundation of America, the Arthritis Foundation, the Scleroderma Foundation, and The Myositis Foundation are all great places to find resources that can connect you to communities of others who are living with MCTD.
Finding a therapist who specializes in dealing with patients living with chronic illness might also be extremely helpful. Most of the foundations above have lists of doctors and therapists, but a quick search online could help you find a qualified person near you.
Living with a chronic illness can feel overwhelming at times but the more you educate yourself and seek the help you need, the more control you’ll feel over your life and your health. Having a good team in place to help you navigate life with MCTD is imperative, so is learning when and how to ask for certain accommodations at work.
One of the most important aspects of living well with MCTD is to put together a healthcare team that can oversee your well-being.
This team should be comprised of professionals who you trust and feel comfortable around. This should include your rheumatologist who specializes in the disease, but can also include other specialists, physical therapists, and even counselors.
You might not have thought much about your medical team when you only saw your primary doctor once or twice a year for check-ups. You will most likely see your team more often to monitor your condition, so it is important to find a doctor, or doctors, you love.
Never feel afraid to seek a second opinion or find a new doctor if the one you’re with doesn’t seem to be helping. Relationships with doctors should be beneficial.
To make sure you get the most out of your appointments with your rheumatologist and other doctors you might consider keeping a symptom diary. This can include symptoms with notes on when you experienced them and if you noticed that certain things like the sun or stress or specific exercises made them worse or better
It’s easy to forget what you wanted to talk to your doctor about once you’re in their office. Writing things down can help ensure that you address all of your concerns with your doctor.
Disclosing your diagnosis to your workplace is a personal choice and not required. However, if you feel that you need accommodations to perform your job, you may consider revealing your MCTD diagnosis so that you can ask for proper accommodations. Often these are things that could help immensely, but you might not think of:
- If you have sun sensitivity, ask for a desk away from windows.
- A compressed workweek could help you work around fatigue.
- Being able to telecommute can avoid the drain of energy that occurs when you have to wake early, get ready, and commute to an office.
- If you have a physically intense job, you may consider asking for retraining for a less intense one.
These are just a few accommodations to consider. You can also visit the Americans With Disabilities Act Network website to find out more about your rights to workplace accommodations.