|Posted on May 2, 2018 at 8:25 AM|
Photo by Kinga Cichewicz on Unsplash
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Caution: this blog post should not be taken as medical advice. Please, ask your medical provider before making any exercise, dietary, or treatment changes.
“Hello! My name is_________________.” Would you fill in the blank with lupus, fibromyalgia, or MCTD (Mixed Connective Tissue Disease)? Of course not. It is easy to feel like a chronic disease that totally changes your life defines who you are. Some of the diseases I will highlight for May Awareness Month. They can be debilitating for those who are affected, but life goes on anyway. When properly managed, people affected are less likely to feel defined by their illness. They are shining stars with God’s infinite love and joy to share with others.
What Are These Diseases?
I would like to highlight Lupus, Arthritis, Fibromyalgia, Mixed Connective Tissue Disease (MCTD), and Osteoporosis for the Month of May. I didn’t highlight March Autoimmune Disease Month because I am not exactly at the top of my game right now since I fight my own battle with illness. The reason I chose these is because several family members, friends, and I have (or had) one or more of these diseases. All of these can be extremely limiting in everyday life. Lupus and MCTD are autoimmune in nature, meaning the immune system attacks the person’s body instead of invaders like bacteria or viruses. Arthritis (Osteo), Fibromyalgia, and Osteoporosis are not autoimmune diseases, therefore, are not deadly, but debilitating nonetheless. They cause their own unique challenges and often accompany autoimmune diseases. Having one or more of these illnesses makes walking a tight rope seem like a walk in the park. Individuals with these diseases must try to balance health, family, work, and daily living. It isn’t easy.
Lupus (Systemic Lupus Erythematosus) is the debilitating form that affects joints of the hands and feet, skin, hair, organs, nervous system, and brain. People affected with lupus often have a butterfly shaped rash across the cheeks and bridge of nose, lose hair, have joint damage of the hands and feet symmetrically (arthritis), fatigue, fever, pain, sensitivity to light, and pain the chest, joints, and muscles (Kaleidoscope). Because it can cause damage to the vascular system and kidneys, it is potentially fatal without early proper treatment. The prognosis for people living with lupus is 80-90% live more than 10 years after diagnosis (Lupus Foundation of America). Managing lupus with proper medical treatment, diet, and exercise is imperative for a long, productive life.
Mixed Connective Tissue Disease
Mixed Connective Tissue Disease is an overlapping autoimmune condition with symptoms of lupus, myositis, scleroderma, rheumatoid arthritis, and sjogren’s. Most people with MCTD will also have Raynauds. Each person will be affected differently, but have symptoms of more than one of these diseases. This disease can progress to one of the autoimmune connective tissue diseases. People living with MDTD have fatigue, pain, fever, swelling of hands muscle weakness, shortness of breath, and digestive issues. Some will have the butterfly rash, lung problems, and/or vascular problems. This overlap disease is broken down into three types: collagen vascular disease (my type), diffuse connective tissue disease, and undifferentiated connective tissue disease. Proper diagnosis and treatment can help 80% of people with MCTD live longer than 12 years after diagnosis. Diet and exercise are a very important part of treatment. (Kaleidoscope) (Merk)
Arthritis is a general term referring to joint damage either through general wear and tear, injury, or other disease processes. It is the leading cause of disability in the United States (Arthritis Foundation). Damage to joints can be simply be minor damage to joints that causes some pain and stiffness. It can also be severe with no cartilage left, joint deformity, inability to do daily tasks, inability to walk, and more. Many people with arthritis undergo joint replacement surgery to regain a reasonable quality of life. Diet, exercise, and medical treatment are used together to help people with arthritis live well (American Arthritis Society).
Fibromyalgia is a syndrome, meaning there is a group of symptoms, but no tests like blood or urine tests are able to be used for diagnosis. Some people believe it is autoimmune in nature while others believe it is due to an underactive immune system. No one knows for sure, but active research is being conducted to find the cause and a cure. Fibromyalgia ranges from moderate to severe in how people with this condition are affected: widespread pain in all four quadrants of the body, overall fatigue, muscle weakness, dizziness, confusion, difficulty thinking clearly, coordination problems, and visual problems. This condition is not life threatening, but can be very debilitating. Proper medical treatment, diet, and exercise are important for people with fibro to regain quality of life (fmcpaware.org).
All of these diseases affect every aspect of an affected person’s life. Limitations in movement, daily activities, ability to make decisions and think clearly, as well as work make our daily living a challenge. They affect our ability to work, in many cases. One of my greatest complaints with fibro and MCTD is being stuck in bed on a bad day. I can sleep 5-8 hours on good days, but sleep 10-13 hours on a bad day. Due to fatigue and pain, I may not be able to get my blog posts and newsletters to you on time. I have to extend grace to myself when MCTD and fibro highjack my day (in some cases, days). You can understand why some people affected by these illnesses feel defined by their health problems, but it is all the more reason to focus on who you really are.
Ways to Improve Your Daily Life
Struggling with the symptoms of your disease? You aren't alone. You can improve your quality of life and function. There are a number of ways you can improve your health and your daily living with any of these illnesses:
1. Get a proper diagnosis. This can be tricky because many of the common symptoms are the same across all of these illnesses. Blood tests can determine what you have with positive results or a process of elimination. Your family doctor is where you start, but you may need to see a rheumatologist.
2. Take your medications faithfully. Your doctor prescribed your medications to control the disease process, help reduce symptoms, and increase your quality of life. I see too many people with rheumatoid arthritis, lupus, and other autoimmune diseases trying to do a special diet to avoid medications. Ask your medical provider about these diets BEFORE you start them. You can’t reverse autoimmune disease through diet or essential oils, although they may be helpful in conjunction with a proper medical treatment plan.
3. Eat tight. That’s right! Your diet can make a very big difference in the severity of symptoms. Foods that cause inflammation make symptoms worse and can even increase the activity of your immune system. Avoid highly processed foods with lots of preservatives, artificial color and flavoring, salt, and sugar. Opt for fresh or frozen produce (organic if possible with your budget), lean meats, fish, and poultry, and whole grain breads, cereals, and pasta, and low fat dairy. Avoid foods that cause gas, bloating, swelling, mouth sores, and allergies.
4. Move it! Get low to moderate exercise depending on your doctor’s recommendations. Walking, water exercise, swimming, and bicycling/elliptical are all low to no impact ways to keep your vascular system in good working order. Light strength training considering affected joint involvement is very important. Use lower weight with more reps. If you have MCTD with scleroderma and myositis, ask your doctor for proper strength training guidelines because breaking down muscle tissue to build strength could do more harm than good. If at all possible, do modified body weight and water exercise to maintain your current strength while protecting your bones. Be sure to take any pain medications your doctor prescribes at least one hour before your workouts to reduce pain and inflammation.
5. Do your best to get enough rest. Your bedroom should be comfortable for sleep. Make sure your bed is right for your health condition and is in good condition. Mattresses should be replaced every 5-10 years (Prevention). I put a thick memory foam topper on our bed. It reduces pressure on sensitive areas. Also, buy pillows that support your neck by keeping your spine in alignment. One of the best I found is a foam punched pillow (aka spa pillow). These also last longer than the average fiber fill pillow. Keep the temperature in your bedroom a little cooler than the rest of the house, but not so much that it causes you pain. Give your furry friends their own bed if they cause you to wake up often.
6. Balance rest and work throughout your day. Most people overdo because they don’t consider rest breaks when they try to make up for bad days. I do that sometimes, but remind myself in the middle of the overdo. Bad days are rest days. No doubt about it!
7. Keep handy helpers around the house. These nifty devices help you do your work easier. For painful hands rubber grips to open jars and bottles reduce your pain while getting the container open. Padded ergonomic gloves help with painful tasks like gardening or lifting weights. Roller bags reduce pain in your shoulders, back, and legs. Lever handles on doors instead of door knobs help make opening a door a breeze. Shower seats help prevent slips and falls. People with fibromyalgia and autoimmune diseases may find them to be valuable because of dizziness.
8. Wear well-fitted shoes. Footwear can make the difference of an unbearable day and a great day. They should be supportive and cushioned. Shoes should also level your legs by preventing roll out or roll in. Memory foam shoes may or may not be helpful. Some are too cushy by compromising support even though good arch support is built into the shoe. If you are doing water exercise, get a good water shoe to prevent ganglion cysts on the bottom of the foot, provides traction, and prevents wear on your lower joints.
9. Be kind to your body with comfortable clothes. Clothing that does not restrict or bind will help reduce some of your pain and tension. Easy to use fasteners are helpful, otherwise, you have to find someone to help you with the buttons and zippers. My motto is if it isn't comfortable, I don't keep it. I'm no fashionista, but I do look for comfortable classic styles with a few comfortable trendy pieces for my own wardrobe. More exercise clothing is available that is easier to put on and take off. Even some swimsuits have sturdy zippers in the front. For those with skin and muscle sensitivity, soft fabrics are a winner.
(All of these tips can be found in The Arthritis Helpbook by Kate Lorig, and James F. Fries. and the Arthritis Foundation. Some of the content I have also shared my own discoveries within those tips.)
Not only will you feel better physically, but you will feel better about yourself in general. When you are able to get a better grasp on the severity of your symptoms and their affect on your life, the less you will feel like your illness defines who you are. Sometimes, I find I am emotionally down more when I’m not able to get regular exercise than when I do. Flare-ups cause me frustration, but really good days I feel like I can take on the world. The one thing I remind myself is that I am still the same person with or without fibromyalgia and MCTD. How about you? You are a wonderful creation of God's fully loved by Him. He did not create you to be your illness. He created you to be you! "Hi, I'm Charlaine Martin. Nice to meet you!"
I would love to hear what God is doing in you with your health condition or any helpful tips you might have. Feel free to email me at t[email protected]. May God bless you!
Kaleidoscope Fighting Lupus
Merk Manual (Consumer Version)
American Arthritis Society
National Chronic Pain and Fatigue Association
National Fibromyalgia Association