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Living With Myositis - JO1 Antibodies - Antisynthetase Syndrome

Updated on July 23, 2017
Article copyright 07/19/2011.
Article copyright 07/19/2011. | Source

Living with a rare illness can be challenging.

When you are diagnosed with a rare illness like Myositis - Jo-1 antibodies - Antisynthetase syndrome, your diagnosis can be confusing as well as more than just a little frustrating. Myositis is a rare illness, Jo-1 antibodies are a rare illness classified within it, and Antisynthetase a syndrome found within some individuals who have the JO-1 antibodies.

There is not a lot of research into rare illnesses and so also generally not 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 is one of the main factors which make having this rare muscle disease such a very difficult illness to deal with.

I am someone who has Jo1 antibodies, my illness is chronic, and it is now about 30 years since I was first diagnosed with myositis. I am a fighter and a survivor. I am proof that we can survive this illness.

Human muscular system.
Human muscular system.

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 thus making each case of this rare illness individual.

Skin, lung, muscle, circulatory, intestinal, and joint issues are all issues of concern with myositis as antisynthetase syndrome leaves no part of the body untouched.

Individuals with anti-synthetase syndrome may suffer from Dermatomyositis or Polymyositis, polyarthritis, interstitial lung disease, Raynaud's Phenomenon, and mechanics hands. People with Jo-1 antibodies may have overlapping symptoms of Rheumatoid arthritis, Systemic Lupus, Scleroderma, Raynaud's phenomenon, Sjogrens syndrome as well as other inflammatory based illnesses.

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 your illness may change and this change may be a constant aspect of your illness. With the passing of time you learn to be comfortable within the unpredictability of your illness. You learn the symptoms of your illness 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 I am having trouble swallowing and breathing, and when that goes away, I 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. 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.

The flares can reduce and the disease go into a rest period. It is then that I can exercise, live in a minimum amount of pain, and grow stronger. Then with a bang it will be back again. Each day with JO1 antibodies is new and different, but I have grown used to my enemy, and I now know to fight this illness on the terms that it sets out for me.

Antisyntheatase Syndrome - Dr. Lisa Christopher Stine

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.

The annual TMA Myositis patient conference provides information and support for those who suffer from this rare illness.

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.
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.
Serene and quiet country scene.
Serene and quiet country scene.

Lifestyle change is very important for those with myositis.

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 have to relearn what you are capable of accomplishing and also to adjust to your new limitations. This can be frustrating but it just takes time and patience to adapt to the new you.

Use health aides, splints, cane, walker, or scooter to help increase your mobility and keep you safe from falls. Adapt your home to your changing needs to help to prevent frustration and increase your ability to adapt to your illness.

Your activity levels will be reduced but don't just stop everything, keep your body moving. Throughout the day alternate periods of rest with periods of activity. Never attempt to do too much of any one activity at any given time or you will tire out and possibly put your body at risk of receiving permanent damage. Budget out your energy, remove restrictive obligations from your timetable, and learn to live comfortably within your illness.

Did you know that a twenty minute total rest period during the day can usually give you enough energy to get you through the remainder of your day? At some point during the day you just have to lie down and do absolutely nothing for twenty minutes. This will help to rejuvenate and recharge your body.

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 favorite 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. That is something that can easily happen when you feel as tired as we do.

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 make you grow stronger with each passing day. 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 are not like other people and 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.

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 have learned. Fight each individual flare as it arrives.

Fatigue, pain, and muscle weakness are major aspects of this illness but it is important 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 on you because you do not use it. Do as much as you are able to without causing damage.

Individuals With Myositis may Have Difficulty Rising From Low Areas and Require Aides

The most dangerous room of the house is generally the bathroom so it is important to protect yourself from falls near the bathtub or toilet. A raised toilet seat and safety handles for toilet and tub can help decrease your risk of an accident in the washroom.

Every home has dust mites but people with myositis 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 so this is a key area of indoor allergy caused by these microscopic creatures.

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 purchased the cotton set about 5 years ago and they are still in excellent condition.

Know what your antibodies mean to you.

Dr. Robert Cooper on understanding your antibodies.

Disability changes how you will achieve your goals but it never stops you from having goals to achieve.

The Myositis Association can help in understanding your illness.

The Myositis 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. http://myositis.org/learn-about-myositis/helpful-videos

Meeting for lunch at Myositis conference Las Vegas, Nevada.

Myositis conference held at Flamingo resort Las Vegas Nevada.
Myositis conference held at Flamingo resort Las Vegas Nevada.
Illustration of the throat muscles.
Illustration of the throat muscles.

Swallowing and choking are a serious issue of myositis.

With muscle weakness also come many issues. Swallowing and choking are one of many very serious symptoms of myositis.

With myositis it can be difficult to consume liquid or food without having choking issues. There is also a danger of choking on saliva as well, and this can occur both at night during sleep, or during the day.

There are therapies which can help with swallowing difficulties and things which you yourself can do at home to help alleviate the problem swallowing. The wisest advice I was given was to treat swallowing as exercise and to stop when I began to get tired so I did not stress the fatigued muscle. Consuming tiny amounts of food and liquids throughout the day helped tremendously to increase the strength of my throat muscles.

A few tips to make swallowing safer:

1. When swallowing food, pills, or liquids, tip your chin down to make swallowing easier. This position creates the easiest route for swallowing.

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 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.

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.

Much to my surprise I have come back very well from a severe term of swallowing. It took 3 years but I am pretty much back to what I now define as my new normal in food consumption. I actually ate a half a pork chop the other day without issue. I have heard this also from many others who come back from severe muscle or lung issues. This truly is one very strange illness and unique to each of us.

Overlap Syndrome with Dr. Christina Charles Schoeman

Human muscular system side view.
Human muscular system side view.

Overlap syndrome and antisynthetase syndrome.

People with Myositis, Jo1 antibodies, or Antisynthetase can suffer from an overlap of inflammatory illnesses.

Polymyositis/Dermatomyositis, or multiple muscle inflammation, is only one aspect of this illness. Inflammation of the skin and within the joints, blood vessels, internal organs, and lungs can also be other major factors of this illness.

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 anti-synthetase 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.

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, Jo1 antibodies, or anti-synthetase syndrome, a proper diet is vital to maintaining your optimum health.

The Myositis conference has a number of knowledgeable speakers who present information on a variety of illness related topics.

Listening to a presentation at the Las Vegas Myositis patient conference.
Listening to a presentation at the Las Vegas Myositis patient conference.

Annual Myositis Patient Conference

The 2017 Myositis Conference is at San Diego, California. September 7th to 10th

For details on the annual conference visit: http://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)

An antioxidant rich diet is very important for those who suffer from chronic illness.
An antioxidant rich diet is very important for those who suffer from chronic illness.

So is there a Myositis, Jo1 antibody, antisynthetase 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 a high quantity and good quality protein diet. 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.

I also use whey protein supplement 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.

Eggs are a complete protein so it is a protein which is immediately available to your body for use. I will make myself an egg salad 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.

Avoid red meat as this can create an imbalance of good and bad fat within the body which may lead to additional inflammation.

3) Eat a high antioxidant 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 amount and harshness of the medicines 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. Try to avoid dairy products, soy products, gluten products, and nightshade plants if you find that you now have a sensitivity to these.

7) If you are on steroids then you will need additional calcium.

Raising Furniture can Help Alleviate Joint Pain

Raising the height of your furniture can also help to relieve the stress on your joints as you rise from a seated or lying position. A great aide to help bring comfort and safety back to your rest periods.

You can help to prevent acid reflux by raising the top part of the bed to give your upper body a more elevated position.

Have you been diagnosed with an auto-immune illness?

Do you suffer from myositis or another form of chronic inflammation.

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Drug Therapy

Drug therapy programs for Myositis may include steroids, NSADS and other anti-inflammatory drugs, immune suppressants, or drugs such as IVIG (Intravenous Immunoglobulin) therapy.

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.

Muscles of the human back.
Muscles of the human back.

Interstitial lung disease and heart issues for those with Jo1 antibodies.

Individuals with Jo1 antibodies run a higher risk of suffering from lung issues than others with Myositis. It is believed that individuals with Jo1 antibodies may have 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 which makes it difficult for us to breathe deeply.

Early diagnosis and treatment is 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 weakened or fatigued muscle in Myositis patients can cause many lung issues. This weakness can cause the Myositis patient to have difficulty breathing deeply or working mucous from the lungs. Liquid can pool in the lung leaving the individual vulnerable to pneumonia and other lung infections.

A cold or flu can be extremely dangerous for those who suffer from a chronic illness like myositis, so it is important to receive the annual flu shot each year, and to use other methods to prevent these illnesses from occurring.

Patients with Jo1 antibodies are prone to right heart failure so it is important to decrease disease related stress on the lungs as much as possible. Breathing difficulties will put additional stress on the heart.

Breathing or allergy issues in the home can be aggravated in the bedroom from exposure to dust mite droppings. It is important to use dust mite covers on your pillows and mattress to reduce this exposure. Wash blankets and sheets often. Keep a window open about an inch all year long to provide fresh air in the home. It is a surprising fact to many that there are generally more pollutants inside your home than outdoors.

People with Jo1 antibodies, or others who suffer from serious lung issues, should not take methotrexate except under extreme health circumstances.

You can read more on Myositis and interstitial lung disease at this website:

Myositis.org: Interstitual Lung Disease

Patients receiving information at a conference display.
Patients receiving information at a conference display.

Falls can be very dangerous for people with Myositis.

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.

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 actually remove 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.

People with myositis may have a sensitivity to light.

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 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.

1) Wear a hat, long sleeve clothing, sunscreen, and darkened glasses to minimize your exposure to UV rays.

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.

Massage your feet - Soak your feet in Epsom salts.

There are a number of health areas of issue for us. I Have found that soaking my feet in a massaging foot bath helps many of these. As I no longer able to access a bath tub this foot soak is highly relaxing.

A combination of the salts and massage is pure heaven on tired achy feet. Massaging the feet can help to improve poor circulation. A foot bath in Epsom salts can also help to prevent foot infections.

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.

Myositis Support Groups

www.myositis.org

Facebook The Myositis "Ramblers" Keep In Touch Group.

You do not have to be alone in your illness. Talking and sharing with others who know what you are going through helps. Support groups share helpful tips and unlimited support.

There are many skin problems associated with myositis.

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.

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.

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.

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 couple years. Shea butter has definitely worked.

Protect your skin by wearing gloves when preparing food.

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 it heals.

Skin, lung, joint, muscle, internal organs, and even your brain can be affected by the inflammation. Your circulatory system can be affected too. I define each of these as a separate flare and fight them as such.

Wear the blue myositis awareness support ribbon.

Please 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 it's 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.

Keep Your Sense of Humor Strong - Laughter Truly is Good Medicine

A Smile and a Giggle Can be Good for Your Health

Somedays it can feel like you need one big prescription to help ease the aches and pains. This cute prescription coffee mug can help by providing a smile first thing in the morning. I can't help but feel a little better every time I use mine.

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.

Find ways to bring additional laughter and a smile to your days. These elements will help improve how you. 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.

Do you, or someone that you love, suffer from myositis, jo1 antibodies, or antisynthetase syndrome?

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    • SusanDeppner profile image

      Susan Deppner 6 months ago from Arkansas USA

      I hope you're doing well, Lorelei.

    • Peter Geekie profile image

      Peter Geekie 12 months ago from Sittingbourne

      An excellent article on a little known subject.

      kind regards Peter

    • profile image

      Maria 20 months ago

      I was diagnosed with Myositis last year also have lung fibrosis and Raynaud's syndrome, never heard of Myositis before, thankfully I have an amazing Doctor and specialists. My rheumatologist told me I have Antisynthetase Syndrome, I thought what? good to know there are articles like this out there. The only thing that bugs me is when you go to ER or another Dr cos you can't get an appointment with your own GP and they look at you as if you have ten heads and think you are making it up and the nurse at ER has to google it! so from now on I think I will print something off and bring it with me, though I do try to avoid going to ER and other Drs. I am still learning to live with it and trying not to do too much at once, which can be frustrating some times not being able to do the things you use to do with no problem.

      Thank you for sharing this article.

    • PNWtravels profile image

      Vicki Green 21 months ago from Wandering the Pacific Northwest USA

      This is a disease I've never heard of before. I hope there is some progress made on an effective treatment.

    • Lady Lorelei profile image
      Author

      Lorelei Cohen 22 months ago from Canada

      NyteFrye there really is a great deal of misunderstanding because of the rarity of our illness. Fortunately it is now being researched which means more understanding and better treatment for us in the future. I hope you will find a Support group on Facebook to join. Also just type in the search their myositis or jo1 antibodies to find groups. There really are quite a few.

    • profile image

      NyteFyre 22 months ago

      2 months later and my GP has not even bothered to look into this. Your site is the only site I can find that gives me some kind of idea on how to cope with it. Thankyou so much.

    • profile image

      NyteFyre 24 months ago

      In early September I was diagnosed with this, on top of back problems, agoraphobia, a r/b knee amputation, Crohn's Disease and yesterday was told I also have Pulmonary Fibrosis. I am still trying to wrap my head around it all. But, look at it this way - There is always someone worst off than yourself, that philosophy is the only way I manage to stay sane.

    • profile image

      PamHillier 2 years ago

      This disease is a daily challenge.Was diagnosed 4 years ago. This is such good info. Thank you!

    • gottaloveit2 profile image

      gottaloveit2 2 years ago

      What an in depth, well written article. I had no idea of this disease and am very sorry you have it. Great tips for those who have myositis, especially calling out the good foods to eat.

    • SusanDeppner profile image

      Susan Deppner 2 years ago from Arkansas USA

      It's wonderful that you've shared so much excellent information here for other sufferers. Your positive attitude shines through, always.

    • profile image

      GrammieOlivia 2 years ago

      Great article, I learned a lot and it's something that I did not know about before. You have done us all a great service.....thank you.

    • Lady Lorelei profile image
      Author

      Lorelei Cohen 2 years ago from Canada

      Thank you so much for stopping by. Today is rare disease day and a time when we try to promote awareness for rare illnesses. Thank you for the understanding. I believe this webpage has helped many who suffer from myositis in helping to direct them to support networks. Being able to talk and discuss with others who have this makes it so much better. It is nice just to not have to be alone in this fight.

    • DreyaB profile image

      DreyaB 2 years ago from France

      I had no idea - that's an awful lot to cope with. I've not had to deal with anything like that in my life so far - just the usual kinds of thing like eczema, allergies and a bad back etc. so I don't fully appreciate what you've had to contend with. It sounds like you're doing an amazing job both for yourself and others by promoting this rare condition. Talking about and sharing information on personal experiences makes life better both for the reader/listener and the writer/speaker in my opinion. I will share, pin and tweet this accordingly... My best wishes are with you.

    • RaintreeAnnie profile image

      RaintreeAnnie 2 years ago from UK

      I am sorry that you are dealing with this difficult and challenging illness. I do think you are doing a wonderful job of raising awareness of this little known condition. Your research and links here must be helpful. I don't have this condition but I know with my own health needs that the more I know and understand, the better.

    • smine27 profile image

      Shinichi Mine 2 years ago from Tokyo, Japan

      Lorelei, I'm so sorry to hear that you have to suffer through this illness. Although I don't have myositis and I could never know how it feels to have it, I have had to deal with panic disorder, recurring bell's palsy and a weak heart since birth so I understand how it is to deal with a lifelong illness.

      I am sure this article on this rare illness will help many out there to understand and cope. For myself, the most help I got was through online groups and forums as doctors were never able to help me with my chronic pains ( bell's palsy or panic disorder related, I would never know ).

      I hope you are feeling well today my friend.

    • Lady Lorelei profile image
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      Lorelei Cohen 3 years ago from Canada

      @mysunshine18: My illness also started with a severe rheumatoid like flare and for the first two years they believed that I had arthritis then an internist discovered my Jo1 antibodies.

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      mysunshine18 3 years ago

      For almost three years now I was treated with RA on many different meds. Around Jan. I started to have flares and symptoms that were beyond the RA. I ended up in emergency completely disabled. After numerous tests and muscle biopsy. I have jO-1 antibodies and was diagnosed with polymyocitis. Starting over with steroids and other meds seems to be such a long road. Each day is different with pains weakness, short of breath swelling and so on. I never know what part of my body will or will not function each day. What a challenge with work, family and just lifting my head off the pillow. It is hard but I am researching everything I can to know as much as I can. Changing my diet with juicing natural everyday does help with energy levels. This is a work in progress and a lot of prayers helps to cope and have peace. So engines the depression hits with such limitations I have and often cry of my inabilities of the simple things and movements I once was able to do.

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      Lorelei Cohen 3 years ago from Canada

      @webbatzel: Visit www.myositis.org for help and information on Myositis and on the patient conference for this illness which is held yearly. There are also 2 wonderful Facebook support groups where you can talk to others with this illness and they are The Myositis Ramblers https://www.facebook.com/groups/109789991650/ and Myositis support and Understanding https://www.facebook.com/groups/myositissupport/ Good luck and the very best of wishes.

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      webbatzel 3 years ago

      I became ill about 16 years ago. I was in college at the time but still went to many doctors. No one knew what I had. For about 5 years I went to different doctors, some who said it was all in my head others who could not figure it out. I gave up finding out what was going on. Then 4 years later I saw a new "doctor" since I had new insurrance. She was a nurse practitionar who didn't want to treat just the ear infection. She ran a bunch of test to try to figure out what I had. She called me back and wanted more test. Finally she diagnosed me with Auto Immune Myositis; anti Jo1. The problem was that then she wanted me to see reumatoligist. I tried three of them. One I made a comment to that I thought a food item made things worse. He said it was all in my head and I never went back to him. I had to many doctors tell me that and I know its not. Then I had one who told me without looking at any of my test result, that there was no way I had myositis. I never went back to them. I currently am having major health problems. The many doctors that I am currently seeing want me to see a specialist who deals with myositis but I can not find anyone who is a specialist in my area. How do you find a doctor who not only knows what myositis is but who listens and does not tell you it is all in your head. I am so furstrated and tired of fighting this but if I had a doctor who would help I think it would make all the difference.

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      webbatzel 3 years ago

      I live in Seattle Wa. I am trying to find info on the myositis website.

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      Lorelei Cohen 3 years ago from Canada

      @webbatzel: That is the very unfortunate part of having a rare illness. There are not many who understand it. You did not mention if you are in the USA or another country. In the USA the mayo clinic has a special unit set up for myositis patients. There is also a patient conference once a year. This year it is in Reno Nevada in September. You can find more information at: the TMA website and also can seek advice there as to physicians in your area. There is a link above please click through and seek further information. So far you are handling this very well. Many of us with this illness have experienced exactly what you have. Believe in yourself and keep seeking help. It is very important to get a good treatment program in place as soon as possible to help avoid damage.

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      norma-holt 3 years ago

      I don't know if my comment went or was wiped out so I will repeat it. I am very sorry that you have this dreadful challenge to live with, This is the first time I am hearing of this disease and to think that little kids also have it is even more devastating. As a spiritual person I have seen many people healed of things like this and would be happy to discuss with you. Hugs.

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      Lorelei Cohen 3 years ago from Canada

      @jpaige02: Thank you Jerry for posting here. Your positive outlook is wonderful. We all certainly have a very common bond with one another in our fight. Best of wishes.

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      Lorelei Cohen 3 years ago from Canada

      @TanoCalvenoa: It is classed under rare illnesses so you are not alone. What surprises me sometimes is when the physicians have a lack of knowledge on this disease. So many tend to lump them into a single diagnosis rather than realizing that each case is individual. It can be very frustrating.

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      Lorelei Cohen 3 years ago from Canada

      @lhagen: You will really have to discuss these concerns with your health professionals. Jo1 antibodies are very rare and if you have them it would show on blood tests.

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      lhagen 3 years ago

      My mother who will be 70 this summer was just diagnosed with Anti-Jo-1, Lungs have been affected and Raynauds. My girls and I will be getting blood work done by GP to see if have this marker, or any others. My question, my oldest girl was diagnosed with Hasmimotos 5 years ago, she is 18 now, so I'm very nervous for her as autoimmune diseases usually come in a pack. I've been on a facebook page for Hashi. people and you know what, A lot of them talk about very similar symptoms that are outlined on your page.......I do wonder then if having Thyroid disease(Hashi.) that is not the thyroid disease speaking but having the Anti-Jo-1 marker, or other??

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      TanoCalvenoa 3 years ago

      I'd never heard of this before. Thanks for sharing this information.

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      Anna 3 years ago from chichester

      When you have such a rare illness or condition, positive thinking listening to your body and connecting with others who understand is vital. I had never heard of this condition before, and I am so sorry to hear of your struggle, but it sounds like you manage it brilliantly. Great lens - very inspirational

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      jpaige02 3 years ago

      Hello everyone my name is Jerry and i am a 48 years old male living with Polymyositis since 1998. I did not become systematic until 2007 the same year I lost my transplanted kidney. I am currently a dialysis patient w/ Polymyositis. I am not taking any steroids just Minocycline and vitamins. I am trying to include a permanent diet of great veggies and protein. reading your stories are truly inspiring to say the least! My goal here is to connect with all of you and share what works, stories, and continue to fight this disease. Ladymermaid, you are a wonderful woman and I look forward to communicating with you soon. Bless you all!

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      Elsie Hagley 3 years ago from New Zealand

      Sorry to hear that you have to go through life with this illness. I have never heard of it but you have made me aware of it. Hope you stay safe and well, looking at your photo I would never have guess it, you are an amazing person.

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      Lorelei Cohen 3 years ago from Canada

      @ChristyZ: I have had to completely redesign my life, and my lifestyle, to be able to exist with this illness. I am thankful that I do not have cancer or another illness that I would be less able to control. I am very really very lucky. I have grown to understand my enemy and that makes fighting this disease much better. There are still very scary periods but there are also good periods as well. I also now have a good support network in place and a good husband. I have escaped the poverty that far too often comes along with a disability. I am very blessed.

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      Lorelei Cohen 3 years ago from Canada

      @AndreaNoruega: Please visit the myositis.org website. They have a number of consulting doctors who work alongside of them and there you may be able to have information sent to your doctor. As well they will be able to send you information. There is also a patient forum there which is very supportive and another patient support group at Facebook.com under the heading of "Myositis Ramblers". Please check these out. Early treatment for this illness is very important, and although JO1 antibodies often very misunderstood, the illness itself caused by them is very real. My prayers are with you. Be strong.

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      AndreaNoruega 3 years ago

      Hi. My name is Andrea. I'm 34 years old. I'm from Oslo, Norway. In February I got sick and I was at the hospital for 2 weeks. After some months the doctors found that I have Jo1 antibody. I have all the symptoms, but my lunges are doing ok, so the doctors decided to not treat me at all. I'm not taking any medicine and I'm in pain and I walk With the help of a Walker. I need a second opinion and some doctors who will treat me. I could travel to the UK or another country if I could get some help. Do you know some contacts in Europe? I mean doctors specialist in this illness.

      I going to print this article to my doctor maybe this will help.

      Thanks

    • Lady Lorelei profile image
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      Lorelei Cohen 3 years ago from Canada

      @anonymous: Having Jo1 antibodies really is a journey. It is an illness that so very many do not understand and that makes living with it all the more difficult.

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      Lorelei Cohen 3 years ago from Canada

      @Nancy Hardin: It is very rewarding when I can help people with this rare illness find their way to support sites and also inform them of the yearly patient conference created to help us understand this strange illness. Thank you for stopping by. I do so appreciate the visit.

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      Nancy Carol Brown Hardin 4 years ago from Las Vegas, NV

      Dear LadyMermaid, although we are online friends, I had no idea you had such a serious, debilitating ailment. I'm sorry to hear this, but I love hearing your attitude about it, that you find things you can do to help yourself and stay positive. It takes a lot of courage to live with a chronic disease and still make the most of your life. Bless you my friend, for this lens which will be of immeasurable help to others who suffer from this condition.

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      Lorelei Cohen 4 years ago from Canada

      @JoanBl: Yes I attended the conference in Los Vegas and it was so empowering. Not only do they provide you with all the latest information, and offer lectures on subjects relevant to us, but you also get to meet and discuss with others like yourself. The support at the conference is amazing and you will walk away from it a new person. When it is close to us again I will definitely attend. They move the conference around each year to give as many people as possible a chance to attend. My husband and I attended in 2011.

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      JoanBl 4 years ago

      @Lady Lorelei: Thank you, I just joined!

      I also found: a group on facebook - IhaveAntisynthetaseSyndrome

      and also a conference being held in Kentucky in October. Has anyone ever gone to one of the conferences? I'm thinking about going... www.myositis.org/your-myositis-community/annual-patient-conference

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      Lorelei Cohen 4 years ago from Canada

      @JoanBl: Joan if you have not joined the myositis ramblers Facebook support group yet I suggest that you go there as well. It is so wonderful to talk to people who are going through the same issues as we face. Each of our illnesses is singular but there is a strong common thread of shared symptoms.

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      JoanBl 4 years ago

      Hi I'm Joan, (I'm 53 and live in NY on LI)

      I was diagnosed with polymyositis/ antisynthetase syndrome last year. About 6 months before that I started noticing symptoms. (pain when I took a deep breath, skin rashes, hips and shoulder pain mainly at night, Raynaud's syndrome, etc.) The one thing that I read below that really hit home was "So many people just look at us and presume we are normal - how very far from the truth that is". My family is great, but they are just starting to realize certain things (at least I hope they are) things like I don't have the stamina to babysit the grandchildren even though I'd love too. I tell my husband that my hips hurt all night and he replies, "yeah, my knees hurt too". They really don't understand. I work full time, many times over a 40 hour work week and I'm so tired at times I can't even find the words to explain it. So I'll just say, "I'm so tired" and the response I get is "me too". All in all, I am doing well with prednisone and cellcept right now but the lack of understanding is beginning to get me down. On a good note, I'm starting yoga again tomorrow - resuming after the summer. I hope that makes me feel better.

      Thanks for listening :) And this article is very informative - Thank you!

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      Lorelei Cohen 4 years ago from Canada

      @anonymous: Dairy probably does not affect you then. The elimination diet suggest 3 weeks of abstinence to notice a difference. I have found wheat and raw nightshade plants cause me to flare. Also if I do not eat an adequate amount of protein throughout the day. Another thing that I seem very sensitive to are the new coiled CFL light bulbs and the tube lighting. They emit UV rays so be careful around them if you have a sensitivity to the sun. I hope you have some good results soon.

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      anonymous 4 years ago

      Hi, Last year I was diagnosed with polymiositis and recently it has flared up again. I am on 20 mg of prednisone and 200 mg of Imuran. I was wanting to have a good diet and noticed that you recommended yogurt but also recommended avoiding dairy if you are sensitive to it. I have abstained from dairy for the past month but have not noticed a big difference in my condition. Does this mean that I am not sensitive? Since my doctors are adjusting my meds I thought it might be hard to tell. I'd appreciate any advice.

      Thanks,

      Ray

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      ChristyZ 4 years ago

      I have never heard of this illness before, it sounds extremely challenging. There are so many people who have mild health problems that don't want to do anything but complain. You on the other hand have such a positive attitude and are helping others who are struggling, which I find amazing. I'm so glad that you figured out different ways to improve your symptoms. I'm absolutely blown away by your strength.

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      Lorelei Cohen 4 years ago from Canada

      @anonymous: I am happy that you have gotten a diagnosis. Not knowing what is wrong really is very stressful and you cannot begin an accurate treatment program till you know what the disease is. My very best of wishes for you.

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      anonymous 4 years ago

      I have spent the last 10 months knowing something was very wrong with me. Started with hand numbness then unilateral facial numbness, then extreme fatigue especially when outside in the heat and sun. Then I developed muscle pains, jaw pain and weakness. I was found to have a low b12 and low vitamin d and white matter lesions on one side of my brain. In March I noticed a lacy pink undertone to my skin, especially evident on my forearms. Dermatologist did a skin Biopsy which showed a slight increase in mucin but otherwise every lab test and EMG and spinal tap came back normal. 2 weeks ago my hands turned red and sensitive. My dermatologist ordered several tests and today I picked up the results. To say I was excited to see that my Jo1 was way over 120 seems weird but I was so happy to have validation for my always changing energy and pain level! I read your article and it was wonderful to hear you describe how I have been feeling!thank you!!.,

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      anonymous 4 years ago

      @anonymous: Hello, I too was diagnosed with antisynthetase in September. I also live in Denver. Please feel free to get in touch, if you wish.

      Sincerely,

      Brandy

      gatorbait1227@yahoo.com

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      Lorelei Cohen 4 years ago from Canada

      @anonymous: Have you joined the Myositis Ramblers facebook support group? There are a lot of us there and there is probably someone there who has experience with that drug. I am on plaquenil, inhaled steroids, and ASA.

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      anonymous 4 years ago

      Hi, going for my ,third round of IV-ig and will be doing monthly. I am also starting Rituxin...has anyone had good result s with the combination?

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      anonymous 4 years ago

      Has anyone found anything that works on Mechanics Hands besides moisturizing cream and cortisone cream?

    • Lady Lorelei profile image
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      Lorelei Cohen 4 years ago from Canada

      @anonymous: You will find a wealth of information and support from others who also suffer from this rare illness. Good luck and bless you.

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      anonymous 4 years ago

      @Lady Lorelei: Many thanks for that. Been on Facebook see where it goes.

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      Lorelei Cohen 4 years ago from Canada

      @anonymous: Bless you. You will probably find some relief once a proper drug course and lifestyle change are adapted. Some people do get remission but most will be chronically disabled. I still look almost normal after so very many years. My right arm no longer lowers to my side, and I've gained weight, but most people would not notice these things as being related to illness. I now work online because to work even part time outside of the home is impossible. We find our own normal and adjust and live within the guidelines that the illness sets out for us. There is a real variety to the illness and each case is so very unique.

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      Lorelei Cohen 4 years ago from Canada

      @anonymous: I am glad that you found this web page and I thank you so much for your comments. The two amazing online support groups that I use are http://myositis.org/ and the Myositisramblers group on facebook. There are a couple facebook groups there so if you type Myositis in the facebook search field you should be able to find them. Because our illness is so very rare, and each case so unique, you will find that the support on these groups is amazing. You learn so much just talking to others who understand.

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      anonymous 4 years ago

      Im so thrilled to have somewhere to vent to those who understand... Thank you for all the information on this post... !!

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      anonymous 4 years ago

      To Terrance's comments.. no one would know how sick we are... My physicians at National Jewish couldn't believe how "fit" I appeared. Well... I have pushed on.. keep hiking everyday... to find out I could have spontaneous fractures.. I am not happy about all the drugs I am taking.. and had eight IV/IG treatments which worked temporarily... but at this point doesn't seem to be many options simply because of the nature of the disease... What a journey....

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      anonymous 4 years ago

      I was diagnosed with antisynthetase syndrome in September and confirmed last week from National Jewish in Denver. In March I had lung issues and kept stopping when working out.. hard core bootcamp four times a week and hiked in the arizona mtns the other days of the week.. an amazing job within the pharmaceutical industry in leadership.. three children.. been married 29 years and I was brought to my knees... My life has been turned upside down... My care has been unbelievable and my husband----- a rock.. Where do I go from here?

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      anonymous 4 years ago

      I have just been diagnosed a month ago with jo1

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      anonymous 4 years ago

      I just love your article it is so informative. The only thing I didn't like is finding out that I have the rarest myositis antisynthetase. It is nice to know that there are people that know what I' am going trough.

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      Lorelei Cohen 4 years ago from Canada

      @anonymous: I am glad that you stopped by. Myositis can be a very lonely illness. Antisynthetase and Jo1 antibodies are very rare and so this chronic illness is very misunderstood still by many including medical professionals.

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      Lorelei Cohen 4 years ago from Canada

      @anonymous: I am glad that I was able to offer you some insight into Myositis. Myositis is a very rare illness but there is a new form of it brought on by statin drugs if you were on these to help lower high cholesterol. Good luck with a diagnosis of your illness. Sometimes the immune response illnesses can take a lengthy period of time to diagnose.

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      anonymous 4 years ago

      I was healthy as a horse 6 months ago and then boom--joint pain and lung involvement. Thank you for your story--it has given me a lot of good questions to ask my physicians.

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      anonymous 4 years ago

      Have had antisynthetase for over 5 yrs have read the article and thought they were talking about me. Its nice to realise We are not alone with this disease. I am certain that many do not understand because We look ok. A very helpful article from someone who knows exactly what it feels like. I am so grateful.

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      Lorelei Cohen 4 years ago from Canada

      @anonymous: Rare illnesses are very difficult to deal with because there is so very little information, support, and treatment options for them. I hope that you are a part of one of the support groups for myositis. Both the facebook support groups are great as well as the TMA community. The links are listed above.

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      Lorelei Cohen 4 years ago from Canada

      @EpicFarms: I had no idea that you were a member of our elite myositis group. Myositis and especially Jo1 antibodies often comes with an overlap of multiple inflammatory illnesses. It is the one thing that I truly wish doctors understood more about when they first encounter someone with JO1 antibodies. Thank you so much for letting me know.

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      EpicFarms 4 years ago

      I have Myositis, Raynaud's, Fibromyalgia, probably Sjogren's and possibly one more (jury's still out on that one ;o) Excellent lens with some terrific information that (sadly) I cannot remember if I've already read. *laugh*

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      familialmediter 4 years ago

      That's a touching story. Very helpful as well. Having a strong support system is imperative in such health challenges. Thanks for sharing such great info on you lens!

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      Tarra99 4 years ago

      Thank you for sharing your story. The whole lens was very informative.

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      anonymous 4 years ago

      Thanks for your informative and useful texts. Living with Dermatomyositis, jo1 antibodies and ASS (+ILD) in a country with a small population means being virtually alone with the diagnosis, and online Information and support is such an importaint resource for me. I was diagnosed six months ago, still figuring out how to cope with it all. You are a great support :-)

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      Lorelei Cohen 5 years ago from Canada

      @familialmediter: Thank you so much for stopping by to investigate my JO1 antibody article. Myositis is very rare and awareness of this illness is so very important.

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      Lorelei Cohen 5 years ago from Canada

      @poutine: We are so very lucky to have the opportunity to work from home. The Internet really helps being disabled feel a little more normal.

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      poutine 5 years ago

      Very informative.

      I have a few auto immune disorders myself and some days are not easy.

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      familialmediter 5 years ago

      I came across another one of your blogs...this is once again very impressive and your content is awesome! Diet is so important and it's great to see ways people can learn to manage certain illnesses through a proper meal plan. Again, thanks for sharing your knowledge with us.

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      Lorelei Cohen 5 years ago from Canada

      @Anthony Altorenna: It is the reason that I wrote this article. Even so many years later there is still so little understanding of jo1 antibodies and people are dying because of it. Even the stress involved can be so sad for the patient and the family.

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      Lorelei Cohen 5 years ago from Canada

      @kburns421 lm: Myositis is very rare and there are many forms of it which are so rare that they are all lumped under the one heading. Awareness and research can make a big difference but rare illnesses do not get the contributions that more common diseases do. It is sad and hopefully one day will not be a problem for future generations.

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      kburns421 lm 5 years ago

      In response to some of the comments below, doctors do not understand A LOT of illnesses, but the sad thing is that it seems that many are not concerned with becoming more aware. Because of this, many people do suffer for years and years with no diagnosis or treatment and are treated as if they are making up symptoms just because tests are coming back normal. This is great lens though. A great resource for anyone who has this, although I don't know anyone who does. Stay strong.

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      anonymous 5 years ago

      I was just told by my doctor after suffering for three years.No one knew what was going on with me until t was sent to see a specialist four hour awy from where i lived

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      victoriuh 5 years ago

      Thank you for sharing about these illnesses. I have never heard of them. Blessings.

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      anonymous 5 years ago

      Stopping back to see Mielle's video, such a little sweetie....

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      Anthony Altorenna 5 years ago from Connecticut

      I've never heard of Myositis, Jo1 antibodies or Antisynthetase Syndrome but I marvel and admire at your strength and courage at battling such a chronic disease. The information you share here will help others who are also fighting this disease, or perhaps trying to diagnosis themselves. Stay strong!!

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      Lorelei Cohen 5 years ago from Canada

      @anonymous: Hi Lisa I removed your above comment to remove your email address so it would not be open to abuse but have quoted your comment here.

      "I am hoping that being a part of this group will help me come to terms with some anger I have towards the GP who thought I was just going through menopause! His lack of listening skills and understanding almost led me to my death in ICU on a number of occasions. I am now very fortunate that the specialist I have have been determined to work their magic. Although I understand and appreciate what Ladymermaid has said about one day you are great and the next something else pops up. I am currently on home oxygen 24/7 and have been trying to fight a nasty skin infection that is supposed to be cured by the drugs but as I have been told I am a special case, the worst seen in our city and I tend to not play by the rules. But I am thankful my son still has a mother and that I have had wonderful friends around me. I one day hope to return to work and do the things I used to do without constantly needing oxygen and being in pain. I have found your site very informative and it was great to read."

      Many thanks

      Lisa

      I am very sad to hear that your lungs are at such an extreme. It is one of the areas of our body most vulnerable with JO1. Were you put on methotrexate? I also went through hell with the specialists, including one I saw not that many years ago, and have relied largely on my family doctor to carry me through. Unfortunately some doctors just presume that they know this illness, and don't take the additional time needed to truly research it, and trust in us. Because there is so little knowledge on this illness, and there is such a huge overlap of symptoms with this illness, each case has to be treated with a whole lot of grey area rather than black and white. I will write more in another thread.

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      anonymous 5 years ago

      Yes I was diagnosed in June 2011 and have been home now for 9 weeks from hospital. I have been diagnosed with all of the above. I can't believe how my life has changed and that my family, especially my mother believes if I just set a goal my illness will disappear. Funny Ha! Ha! or that going to pulminary rehab will cure my ILD. I would love to hear from you about what you have gone through. I am a school teacher (not currently working due to illness) and a single mum of a teenager.

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      UnstablePrimate 5 years ago

      I had no idea about this disease-- you are a fighter! I suffer from something that is in some ways similar. The doctors didn't believe anything was wrong because the tests all came back showing that I was very healthy-- even though they would look at me and see that I was sick. It is very frustrating to barely be able to walk into a doctor's office and then be sent on your way because the doctors have no idea what to do-- or imply that you are faking. I am so happy for you that you have found a doctor who will work and learn with you!

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      Kathryn Grace 5 years ago from San Francisco

      This is the first I have heard of this one, though I have a family member who suffers from another rare syndrome. I pray you receive all the strength and courage and healing you need at any given moment.

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      Lorelei Cohen 5 years ago from Canada

      @kathysart: This illness is why I began to search for a means of earning an income online. It was too dangerous for me to work outside of my home even on a part time basis. I have found so very many friends here and I appreciate you all so very much. You are like family to me.

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      kathysart 5 years ago

      Tears.. lots of them. As I read this about you my lovely friend I send my caring and admiration for your strength. Angel blessed.

    • Lady Lorelei profile image
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      Lorelei Cohen 5 years ago from Canada

      @anonymous: When I first became ill it seemed like no one in the medical community understood this rare illness. Now so very many years later I still had the misfortune of meeting doctors who do not understand myositis. Creating awareness of this rare illness is very important. It can mean better treatment options, a better quality of life, and a greater life expectancy for those who suffer from this illness.

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      anonymous 5 years ago

      You are indeed a fighter and a survivor...and a teacher who knows what she speaks of and you do it with excellence. Those suffering from myositis, jo1 antibodies or antisynthetase syndrome have an example in your courage and adaptive skills to work against each symptom. May many be inspired and gain hope in their journey. Blessed.

    • Lady Lorelei profile image
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      Lorelei Cohen 5 years ago from Canada

      @anonymous: Jo1 antibodies are very rare so there is not much information available on them. When I was first diagnosed the doctors just presumed that they knew the illness and classified me into other disease categories but actually had no idea of what I was experiencing. Finding information online at myositis.org made me feel so much better. I knew that what I was going through was real.

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      anonymous 5 years ago

      I have jo-1 syndrome, and was diagnosed about 3 1/2 years ago. The medication has eased the myositis and regular lung function tests are giving very good results re ILD. I do suffer from raylalds occasionally but otherwise, I feel fine in myself. It was great to come across this article, as there is so little published regarding this disease. Thankyou.

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      TheHealthGuy LM 5 years ago from U.S.A.

      I am sorry you have this chronic illness. I too know what it is like to combat chronic illness and would hope you find great comfort in the knowledge that this lens of yours may help others who suffer as you do find potential relief and possibilities. I hope you have a good year and remission of symptoms.

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      Lorelei Cohen 5 years ago from Canada

      @LouisaDembul: Having Jo1 antibodies is certainly something that could use much more research and understanding. Myositis is a very unique illness to suffer from.

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      LouisaDembul 5 years ago

      I don't know anybody who suffers from this. Very well written information, you made it so clear. Must be tough with all the changes (apart from everything else).

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      Lorelei Cohen 5 years ago from Canada

      @anonymous: After being ill with myositis for awhile you actually begin to feel comfortable within it's ever changing landscape. I thank you so very much for stopping by and wish you a wealth of good health in the future.

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      anonymous 5 years ago

      Thank you for this easy to read article about a complicated subject. I have DM and have done lots of research so I didn't get any new information, but I will refer my friends and family to this article because it can help explain myositis to a layperson. Keep up the positive attitude!

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      Lorelei Cohen 5 years ago from Canada

      @anonymous: Our illness is a very special one due it's rarity. There are so many factors involved with jo1 antibodies, myositis, antisynthetase that it can be a very difficult disease for others to understand.

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      anonymous 5 years ago

      Kudos to you for all your time and effort to put all this information together! I have anti-j, polymyositis and antisynthetase and so appreciate your work.

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      Lorelei Cohen 5 years ago from Canada

      @OrganicHealth3: Myositis is very rare, as are jo1 antibodies, and antisynthetase syndrome. These illnessess are listed under the category of rare diseases. Thank you for stopping by.

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      Lorelei Cohen 5 years ago from Canada

      @anonymous: Most of us with myositis are misdiagnosed in the beginning. For the first two years of my illness I was diagnosed as having severe rheumatoid arthritis, then they found the jo1 antibodies and diagnosed me as having polymyositis, after some severe health issues this was changed to antisynthetase syndrome.

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      Lorelei Cohen 5 years ago from Canada

      @anonymous: Thank you for taking the time to read on myositis. Awareness is so important for rare illnesses such as antisynthetase syndrome. So many people just look at us and presume we are normal - how very far from the truth that is.

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      Lorelei Cohen 5 years ago from Canada

      @JoleneBelmain: I would love to have a remission from this illness. Oh gosh how I would play.