There is often not a lot of research into rare illnesses and so there may not be a lot of reliable information on them either. Treatment options may be foreign or experimental and physicians may not have the expertise needed to treat your illness accurately. The rarity of myositis and its many crossover syndromes is one of the main factors which make having this rare autoimmune disease such a very difficult illness to deal with.
I am someone diagnosed with Antisynthetase syndrome with Jo1 antibodies as the marker for this illness, I as well showed to also have both the Ro52 and PR3 antibodies. My illness is chronic and it is now over 40 years since I was first diagnosed. I am a fighter and a survivor. I am proof that we can survive this illness.
Become familiar with your illness, its symptoms, and its treatment. Myositis is a complex illness with so very many issues involved. If this disease simply concentrated on one specific area of the body then perhaps it would be easier to understand and to treat, but this disease takes many forms and often comes with an overlap of any number of inflammatory illnesses. This overlap makes each case of this rare illness individual to the person who has it. Skin, lung, muscle, cognitive ability, circulation, intestinal system, and joint issues are all issues of concern with myositis as antisynthetase syndrome leaves no part of the body untouched.
This means that you may not be able to predict your disease activity by what another person with Myositis has undergone because your illness will most likely be completely unique to you. Your doctor may not understand your illness. A CPK test may not show abnormal levels yet you may still be very ill. There are many factors to this illness which are as of yet misunderstood.
The symptoms of the disease may change and this change may be a constant aspect. With the passing of time you learn to be comfortable within the unpredictability of your illness. You learn the symptoms and you fight these as they come and go. I often joke that I am the ever changing woman. One month I am fighting stiffness, pain, and severe muscle fatigue then a couple months later these symptoms go away and I am instead having trouble swallowing and breathing. At any given time my hands may be covered in bandages to hide and protect from infection the painful cuts appearing from the phenomenon known as mechanic's hands. When that goes away I may then find myself having to use a cane to walk the few simple steps to my car.
My joints can become badly inflamed by rheumatoid like flare ups that seem to last forever. I suffer painful muscle spasms brought on from the muscle weakness. Intestinal issues are also there. At any time the flares can reduce and the disease go into a rest period. It is then that I can become more active, live in a minimum amount of pain, and grow stronger. Then with a bang the inflammation will be back again. Each day with JO1 antibodies is new and different but I have grown used to my enemy and I generally know to fight this illness on the terms that it sets out for me.
Antisynthetase Syndrome - Dr. Lisa Christopher Stine
(2016 Annual Patient Conference)
Lifestyle change will be necessary. You are different and your lifestyle will probably be much slower than before. Becoming ill with a chronic disease is much like being a child again. You may have to relearn what you are capable of accomplishing and adjust to any new limitations. This can be frustrating but it is simply a process of time and patience to adapt to the new you. Health aides, splints, cane, walker, or a scooter can help to increase mobility and keep you safe from falls. Adapting the home to your changing needs will help to prevent frustration and increase your ability to adapt.
Raising the height of furniture can help alleviate the joint pain. Raising the height of your furniture can also help to relieve the stress on your weakened muscles and joints, There is a lot of pressure placed on them as you rise from a seated or lying position.
You can help to relieve acid reflux by taking an antacid ie: TUMS and by raising the top part of your bed to give your upper body a more elevated sleep position.
Swim therapy, walking, dancing, stretching, laughing, yoga, and singing are exercise therapies which can help to keep you strong until you are able to accomplish more. Simple things like laughing or singing to a favourite song can help to clear the mucous from your throat and lungs.
Learn to adjust your activity level to what you are able to accomplish each day. Don't allow yourself to be too lazy. This is something that can easily happen when you feel as tired as we do. At the same time it is also important to acknowledge that there is a very fine line between exercise and abuse and we must find ours each and every day that we live with this illness. Having myositis means that a slow and steady course of exercise may not help you grow stronger with the passing days, yet at other times it will. You may be fine one day and barely moving the next. You will have to adjust what you can accomplish each day by your current health levels. We must set our own pace in everything that we attempt to do.
Budget your energy, budget your commitments, budget your time. Push yourself but don't abuse your inflamed joints and tissue either. Fatigue, pain, and muscle weakness are major aspects of this illness and it is vital to hold onto as much muscle as you are able to. During severe muscle involvement do not damage your muscle by working it too hard but also do not allow it to waste away because you do not use it. Do as much as you are able to without causing damage.
Research your symptoms, research your treatments, research your options. Each case of Myositis is individual to the person who has it so don't ever be afraid to question your treatments or to refuse one based on what you learn. Fight each individual flare as it arrives. Myositis is a challenging illness both physically and emotionally. You should not attempt to fight it on your own. Listen to your doctor but also be aware that due the rarity of this illness that many doctors may not be knowledgeable on the many forms which myositis takes. Research all treatments, see a specialist, and ask questions from others who suffer from this illness.
Every home has dust mites but people with autoimmune illness may be more sensitive to them. I went through a very bad bout of breathing difficulties and it was a nurse at the hospital who suggested that I try using dust mite covers on my pillows and mattress. She explained how the protein in dust mite droppings can affect those with protein issues. Although dust mites can be found throughout the home they are generally at their highest concentration where people spend the majority of their time. People happen to spend a large amount of time in bed sleeping or on their living room furniture so these are key areas for indoor allergy caused by these microscopic creatures.
Vacumm these furniture pieces often. Purchase dust mite pillow and mattress covers. The first set I purchased were the plastic variety and I learning quite quickly that the cotton covers are much more durable. There is a definite difference in quality between the two styles. I found that the cotton sets will generally last 2 to 5 years whereas the plastic variety ripped relatively quickly.
1. When swallowing food, pills, or liquids, tip your chin down to make swallowing easier. This position creates the easiest route for swallowing.
Having muscle weakness makes it easy for food, liquid, or saliva to be swallowed into the lung area. Once in the bottom of the lungs this foreign matter can cause an infection or pneumonia to develop. The weaker muscles makes it more difficult to cough out the foreign objects. Always check with your doctor if you believe you are having problems with fluid in the lung area.
*It is always safest to visit your doctor to insure that your swallowing difficulties are not cause for more serious concern. If your swallowing difficulties concern you or are severe, discuss treatment with a therapist, throat specialist, or surgeon.
Did you know that cocoa butter and Shea butter are natural moisturizers which contain high levels of antioxidants. When you use these products you absorb the antioxidants through your skin. Olive oil can also be used as a natural moisturizer for your skin but be careful when you use it as it can make your fingers slippery.
I keep a jar of shea butter lotion in every room of the house and am constantly applying it to my skin. It definitely seems to have reduced the number of skin flares that I am experiencing. Update: I have not had an outbreak of mechanics hands now for a number of years. A combination of Shea butter lotion and Dove Shea butter soap has definitely worked for me.
I include a whey protein supplement into my diet and make myself a drink blended from whey, yogurt, and fruit juice. It is actually very yummy and nutritious. Whey protein seems to work well for those with suffer from myositis and can be a life saver when you are suffering from swallowing issues.
1) Wear a hat, long sleeve clothing, sunscreen, and darkened glasses to minimize your exposure to UV rays.
Information I had read on my illness indicated that people with Jo1 antibodies or those who suffer from serious lung issues should not take methotrexate except under extreme health circumstances. For myself and a few others alike me that I have met, that proved to be a very accurate assumption.
2. Keep a glass of fluid beside you when you eat. Take a sip of milk or juice after each bite to help push the food down. A thicker liquid such as milk can be easier to swallow than water.
3. Cut your food into very tiny pieces. Avoid stringy foods or those that you have experienced difficulty in swallowing previously. Add sauces to your foods to make them easier to swallow.
4. Juice or mash your fruits and vegetables for easier swallowing. Consuming them with a sauce or dressing can make these foods easier to swallow.
5. Drinking from a straw is safer than drinking from a glass. If drinking from a glass take tiny sips rather than large ones.
6. Avoid larger sized pills. Crush or chop them into smaller pieces for easier swallowing. Many pills can be substituted with a liquid or chewable tablet version so discuss these options with your doctor or pharmacist. You can grind some pills into a powder so you can swallow them in liquids but check first to insure that these pills are not coated for your safety. Vitamin D can usually be crushed to add in to yogurt or soup.
7. Take a couple sips of water into your mouth, put the pill in your mouth, then tell yourself to swallow. I find this process of commanding the body to do as it is told.
Much to my surprise I recovered from a severe inflammatory throat flare that left me virtually unable to swallow any foods. I am not quite sure why it occurred but it seemed to take only a few days to almost completely lose my ability to swallow. Even the tiniest sips of water were difficult to accomplish and I was terrified.
I went to my Antisynthetase support group for help and one of the members gave me the information I needed to recover. His advice was to treat the swallowing issues just as I would for other muscle weakness. I was to exercise and strengthen the muscle by continuing to swallow those tiny sips of water or other liquid on a regular basis throughout the day. I was also told to never put a large amount of stress on my throat and if fatigued was to stop consumption immediately and allow my muscles the needed time to rest and recover.
It took 3 years to get through that flare but I am pretty much back to what I now define as my new normal in food consumption. I can now eat most foods but I listen much more carefully to the warning signs and as needed I reduce the types of food I eat as well as the amount of food I consume at any sitting.
Try to prevent permanent damage. Treat each flare individually and on the terms that it sets out for you. Your symptoms may flow in waves and it is up to you to learn as much as you can about each of these. Your goal is to prevent permanent damage in the affected area so you can be well again when the flare is over. Skin, lung, joint, muscle, internal organs, and even your brain can be affected by the inflammation. Your circulatory system can be affected too. Define each of these as a separate flare and fight them as such.
There can be skin issues. Inflammation of the skin, mechanics hands, and rashes, are but a few of the many damaging skin difficulties which people with Myositis face. The skin can be irritated by simple daily tasks, UV light rays, dryness, disease activity level, and many other factors. The more that you understand your illness then the more you will become aware of the factors which cause skin flare ups to occur. Be aware of the lighting sources that you are exposed to. A simple trip to the doctor's office or local mall can expose you to fluorescent tube lighting, or the new CFL bulbs, which can irritate your skin symptoms.
When outdoors the sun's rays can irritate and inflame your skin. Protect your skin by wearing long sleeve shirts, full pants, a hat, and dark glasses. Your hands will be especially vulnerable as they are in and out of water throughout the day. Protect your hands by wearing gloves when preparing food. Purchase a variety of gloves for your everyday activities. Use food preparation gloves to prepare your food, rubber or latex gloves for washing vegetables or dishes, warm gloves for retrieving food from the freezer. When outdoors wear light gloves in the summer and warm gloves in the winter. Keep in mind that circulation issues can increase skin damage.
Raynaud's syndrome can cause the circulation in your hands to decrease which further increases dryness and irritation of the skin. Avoiding emotional stress, cold, and stimulants such as coffee can help reduce the symptoms of Raynaud's syndrome. The skin is the largest organ of your body and whatever you apply to it will be absorbed into your body. For this reason be very careful of the personal care products which you use throughout the day. Check the ingredient lists on the products you use and try to use more natural personal care products. Choose a shampoo and hair conditioner that will not irritate your scalp or look for a more natural solution for this task.
Overlap syndrome and Antisynthetase Syndrome:
People with an autoimmune disease can suffer from an overlap of inflammatory illnesses. Polymyositis/Dermatomyositis (broken down means multiple muscle/skin inflammation) this is only one aspect of this illness. Inflammation of the muscles and skin can be accompanied with inflammation of the joints, blood vessels, internal organs, and lungs. In addition to inflammation many individuals with myositis suffer from severe fatigue, pain, stiffness, brain fog, muscle fatigue, and muscle wasting.
The enzymes which synthesize protein may in some way be affected, but with so little research having been done into antisynthetase syndrome and the other muscle myopathies, little is yet known about this very rare illness. People with myositis may find that Vitamin D deficiency, Vitamin B12 deficiency, intestinal difficulties, as well as new sensitivities to foods which they previously had no difficulties with will now be an issue for them.
The Myositis Association can help you understand your illness. The myositis.org website is a key group for helping to encourage research into myositis and the antibodies involved with Myositis. This awareness is helping doctors to understand which treatment programs work on us, which ones won't, and why these differences are there. The Myositis website has a number of video presentations that may help you to understand your illness, diagnosis, and treatments. Where illness is concerned knowledge is indeed power. Once a year they hold an annual Patient Conference with numerous knowledable professionals as speakers. Try to attend at least one or two of the annual Myositis Patient Conferences. You won't be disappointed.
The Annual TMA Myositis Patient Conference
Provides Information And Support
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| Myositis conference seminar Las Vegas, Nevada. The conference is held in a different US location each year to allow as many people as possible the opportunity to attend. |
For details on the annual Myositis Patient's Conference visit: myositis.org You can also contact the Myositis association at:
The Myositis Association
1737 King Street, Suite 600
Alexandria, VA 22314
800-821-7356 (Toll-free)
A healthy diet is important for anyone, but for someone who suffers from an inflammatory based illness such as that which occurs when you have Myositis or anti-synthetase syndrome, a proper diet is vital to maintaining your optimum health. Is there a specific diet plan? I wish that I had more information on an appropriate diet plan for those who suffer from antisynthetase syndrome but all that I have to offer is what I have learned over the years. Hopefully these tips will help you.
1) Because our energy level is reduced we do not tend to eat as much as other people so tend to not get the nutrition that we need. The drugs we take may also deplete our body of specific nutrients or require us to take additional supplements to counteract negative affects they may otherwise cause. We generally require additional protein, calcium, vitamin D, Vitamin B12, omega 3 fats, as well as a daily multi-vitamin supplement.
2) I have heard many of the people with Myositis mention the importance of having high quantity and good quality protein. Egg, salmon and other fish, lean meats such as chicken, pork chops, and white turkey meat are good protein sources. Salmon seems to be one of the best meats as it provides the necessary omega 3 fats and high quality protein which so many of us seem to be lacking in our diet. Avoid red meat as this can create an imbalance of good and bad fat within the body and for those who have an autoimmune illness the red meat may increase inflammation.
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| Egg salad sandwich using lettuce to replace the bread |
Eggs are a high quality complete protein as it is energy which is immediately available for your body to use. I make myself an egg salad, pop it in the fridge, and take bites of this throughout the day.
Munching on 6 to 10 walnuts or another omega rich nut is a good snack to consume throughout the day as well.
3) Eat an antioxidant rich diet. Your body's cells are being damaged by the inflammation within your body. Help to slow down or heal this damage by consuming an antioxidant rich diet. Fruits, berries, and dark leafy vegetables are generally good sources of antioxidants. Juice these if necessary but include them into your diet. It may be easier to drink these than to add additional food into your diet plan. Green tea and red wine are other antioxidant rich drinks.
Ginger and turmeric are natural anti-inflammatory spices that can be easily added into many foods.
4) Eat yogurt on a regular basis. The medicines that you take may be killing off the good bacteria in your intestinal tract and you need this bacteria to have optimum health. Eating a good probiotic yogurt replaces this good bacteria and helps to improve your intestinal health. Honey can also help to heal the intestinal tract as it is an antibacterial agent.
5) Drink plenty of water. Because of the large amount (and harshness) of the medications required for treating Myositis, you will most likely need to drink a lot of water to help keep your kidney and liver healthy.
6) Avoid the most common allergy foods. People with myositis are very sensitive to the environment around them and to the foods which they consume. Foods which you could previously tolerate may now be causing you to become ill. If you find you have an increase in your symptoms after consuming specific foods then try to limit your exposure to them. Dairy, soy, gluten, and nightshade plants are common foods people may find they have issues with. If you find that you now have a sensitivity to these then remove them from your diet and see if you feel better after doing so.
7) If you are on steroids then you will require additional calcium.
Disability changes how you will achieve your goals but it never stops you from having goals to achieve
People with autoimmune illness such as Myositis or Lupus may Experience a sensitivity to UV lighting. Sunlight, Fluorescent tube bulbs, and the new (CFL) Compact Fluorescent bulbs may increase disease activity in many of the individuals who suffer from Myositis. This means that a simple trip to the local mall, dentist office, or school where these light bulbs are used may increase the inflammation of Myositis.
People who have myositis may be more sensitive to UV rays, so if you have this illness then exposure to many of the light sources which you encounter each day could be increasing the ill health effects of your Myositis. Those with Dermatomyositis may be particularly sensitive to the effects of exposure to UV rays from the sun or other UV based lighting sources.
2) Use the old Incandescent bulbs in your home and work place. Avoid or minimize your exposure to other lighting sources.
3) Blacken your car windows.
4) When outdoors sit in shady areas rather than in direct sunlight. Keep in mind that UV rays can ricochet off water or other surfaces so when using an umbrella it is still possible to be hit by these rays.
Drug therapy programs for Myositis may include steroids, NSADS and other anti-inflammatory drugs, immune suppressants, newer drug options such as Rituximab and IVIG (Intravenous Immunoglobulin) therapy etc. Most people with Myositis also include several alternative therapy choices into their treatment program as well.
When you have Myositis it is vital to have a physician who you trust and are able to communicate openly with. Discuss your illness and treatment options with your doctor.
Interstitial Lung Disease And Heart Issues: Individuals with Jo1 antibodies run a higher risk of suffering from lung issues than others with Myositis. It is currently believed that there may be about a 70 percent chance of interstitial lung disease being a visible part of their illness. Fibrosis or scarring of the lung is very serious as the lung can be slowly damaged till it is no longer able to function. Our lungs can also die upwards from lack of use due severe muscle fatigue or weakness which makes it difficult for us to breathe deeply.
Early diagnosis and treatment are vital for those who suffer from interstitial lung disease. It is important to have breathing monitored and lung x-rays or cat scans performed on a regular basis to insure that damage is kept to a minimal.
The antibodies associated with autoimmune illness are key markers for the symptoms you may suffer. I have the PR3 antibody which displays in an inflammatory attack on the vascular system. In my case it has also caused kidney damage. Be aware of the antibodies your disease consists of.
Falls are dangerous for the disabled. Muscle weakness, stiffness of the joints, and overall decreased mobility can make falls a very real concern for those who suffer from Myositis. Bathrooms, stairs, hills, ice, snow, or items which can be tripped on, are all potential areas where injury from a fall can occur. Muscle weakness in the hands can cause dishes to fall from the patient's grasp, in the lower extremities it can cause the legs or ankles to give out from under them, or it can display itself in a stumbling gait which makes tripping on small objects or uneven flooring easier.
To increase their safety Myositis patients often find it necessary to adapt their home to their changing needs. A ramp or lifts may need to be installed to make access and mobility within the home easier.
Medical aides to help functioning ability and to prevent falls are often used. Canes, splints, walkers, scooters, and wheelchairs are very real in our world.
We often must change our lifestyle so that we are not exposed to areas where we may overly fatigue our muscle, hurt our inflamed joints, or fall. Often avoidance is the only option of safety for people who suffer from this rare illness.
Massage Your Feet - Bathe In Epsom Salts: There are a number of health areas of issue for us with circulation, foot care, and infection a few key ones. I Have found that soaking my feet in a massaging foot bath is very beneficial with these. As I am no longer able to access a bath tub a foot soak is very much needed and has the added benefit of being highly relaxing as well. A combination of the Epsom salt bath with a foot massage is pure heaven on tired achy feet. Massaging the feet can help to improve poor circulation.
Epsom salts contain magnesium which helps to relieve muscle pain, when we soak our feet they absorb the magnesium and we feel less achy. This is an element which we are often lacking so this is a simple way to increase our dose. Magnesium in the Epsom salts helps to ease muscle aches and pain and it is absorbed through the soles of the feet
during the bath. A foot bath in Epsom salts can also help to prevent foot infections.
A Smile And A Giggle Can Be Good For Your Health
It is important to note that mood truly can influence the amount of pain that you are in. Stress brings with it tense muscles and this can increase the hurt. Surround Yourself With Happy: When you participate in pleasurable activities your brain does an amazing thing and releases a little chemical message known as an endorphin.
Endorphins are feel good messages which have the power to alleviate physical and emotional pain. They travel down the spine, and then throughout your body, sending a feeling of well being as they go. Smile. Laugh. Watch cartoons. Sing. Put on your favorite music and dance around the living room. Get happy. It's good for you.
Find ways to bring a smile and additional laughter to your days. These elements will help improve how you feel and how you handle the events set out for you each day. The brain releases feel good chemicals known as endorphins when you smile, laugh, exercise, or enjoy a good sexual experience. These endorphins are a natural pain killer and can relieve both physical and emotional pain.
Somedays it can feel like you need one big prescription to help ease the aches and pains. A smile first thing in the morning can help. Stay strong and stay positive.
Join a Myositis Support Group
Wear the blue Myositis awareness ribbon. You can help to create awareness and understanding for those who live with myositis. Visit the support networks set up to help those who suffer from this rare illness and please donate to help increase research into myositis and its related illnesses. Email this web page to your family and friends. Discuss the issues presented in this article with your doctor.
Wear the blue myositis ribbon to show your understanding and support for those who suffer from the rare illness known as myositis.