Myositis: JO-1 Antibodies
A Myositis Specific Antibody
JO1 antibodies are a marker for people with Polymyositis or Dermatomyositis. These antibodies are very rare and classed into the category of rare diseases. They are also one of the most likely antibodies to be present with Myositis related interstitial lung disease.
Individuals with Jo-1 antibodies often have a distinct syndrome called Antisynthetase syndrome. We look normal and most of the time we act pretty normal but the truth is that we are not anywhere close to having the capabilities of living a normal life. Our lives are spent fighting a constant battle to maintain our later quality of life.
I have Jo1 antibodies and they are the hardest battle that I have ever fought. Life can be very difficult for those of us who live with these antibodies. Our lives are stolen from us but because of the rarity of our illness we are often left to fight our battle alone. I want to create awareness of this.
I want the world to see this rare illness, to learn to understand it, and to help us in our battle to survive it.
Discover what your antibodies mean.
Dr. Robert Cooper of the UK is doing some amazing research into the significance of antibodies within Myositis. You can view the video of his presentation at the 2011 Myositis Patient conference.
Understanding what your auto-antibodies mean.
Although I wish that it was not an aspect of my illness that must occur, I often am forced to sacrifice things that I would like to do so that I can accomplish the things that I must do. I tire very easily.
My health is very fragile and a cold or a flu is very dangerous for me. I also have difficulty dealing with the new light sources that are now mandatory in both Canada and the United States. I limit the time that I spend out of my home. During periods of extreme flare this is an aspect of the illness that happens all too frequently.
My illness flares come in waves of varying intensity. When my muscle is being attacked then my body requires maximum rest to prevent damage. I must stop virtually all extra activity and allow my body to fall apart. The key is to do enough activity so as not to lose the muscle but to reduce activity to a point that muscle is not being damaged during its weakened state. It is an ever changing balancing act.
In about a week or two I will attempt taking short walks and doing mild yoga exercises. If the illness gets worse then I know that the illness is still battling a quiet enemy, and I will stop and wait.
In another week I will try again to increase my activity levels and I will continue to use this method of attack until I am able to begin rebuilding my muscle again. I then begin a slow and steady increase in the amount of exercise I am able to do, until the illness once again demands that I stop, and substantially decrease my activity once again. It is a process of rebuilding and of falling apart.
My diet has changed greatly and I have grown increasingly sensitive to a number of foods. I require good quality protein consumed often throughout the day or I crash.
When the illness affects my circulatory system or my metabolism then a lot of my fight is with increases to my medications, salt water soakings, alternative therapy, diet and lifestyle change. My use of antioxidants is maxed during periods of extreme flare.
When the disease goes into a rheumatoid flare then I still have some ability to fight with exercise. The pool allows me to maintain muscle strength even during the flare as the water takes the stress off my joints. I can also usually continue my yoga exercises during these periods but generally this is in a much reduced capacity as I can no longer get myself down to the ground. I do only the standing exercises during these flare ups.
My recent article explains more fully Jo-1 antibodies and how I have learned to live within this illness. If you have this illness please give this article a read.
Diet greatly influences degree of fatigue and the degree of flare.
Spice up your food with ginger, turmeric, cinnamon, and garlic.
Many foods can act as a natural therapy for illnesses such as arthritis or other inflammatory based illnesses. There are many herbs, spices, and other foods which can help to improve your health.
Ginger, turmeric, lemon, onions, and garlic are just a few super foods which can help to naturally reduce inflammation. So spice up your food. It may help you to feel better.
Pamper yourself. Relaxation, laughter, and a stress free lifestyle are vital to those with chronic illness. Laughter really is the best medicine.
Support groups: www.myositis.org or you can also find groups on Facebook such as the Myositis Ramblers.
Shake off the stress and get your endorphins working for you.
An extreme bout of illness will leave me relying on prayer and the power of endorphins to pull me up. I do everything possible to live in an imaginary stress free existence.
I play my favorite music, sing, dance (although sometimes this is nothing more than a painful shuffle), watch comedies, laugh, and do everything that I can to encourage a peaceful happy feeling to engulf my body. Singing helps to keep the mucous from building in my lungs.
As my illness has advanced there is some damage acquired over the years. Generally if I can pull myself out of each individual flare okay then the damage is nil or minimal. If I cannot get the flare under control then this is where I have permanent disability.
My right arm and shoulder show permanent damage and my swallowing ability has decreased. I notice now that I must be very careful in the pool because water goes directly down into my lung area all too easily. Choking has become more of an issue as the disease progresses.
Life Revolves Around The Flares.
I am constantly looking for a way to be well, constantly fighting to maintain as much of myself as I can until the day comes when they discover what is making me ill, and I can have that blessed remission that will let me be me again. I would love to live without having to worry about running out of energy or doing more damage to my body than I should.
There seems to be a protein diet link which can affect my health levels but I have not figured out why or how it happens. I do seem to have to consume protein throughout the day and insure that I have a good quality protein such as eggs or whey.
When I attended the 2011 Myositis patient conference others who suffer from myositis also mentioned that eating a high protein diet seems to help them. I try to include one egg a day into my diet plan and find that if I forget to include it for a few days that my health and energy levels are adversely affected. I eat protein throughout the day and it seems to help increase my stamina.
The various inflammatory periods that I experience come and go in waves. Sometimes only one area of inflammation attacks me and sometimes there is an all out attack launched against me. I deal with each inflammation flare individually and on the terms that the illness itself sets out.
My lungs are an area that I am constantly fighting to maintain. Lung specific steroids are used throughout the year generally for two to three month periods at a time. As the illness allows I fight for my right to be able to walk or dance. I am always looking for opportunities to improve my lung capacity.
Generally if I avoid hills and stairs then my stamina levels and joints hold out pretty good and I am able to get in some degree of walking. When my joints get inflamed then I used to head for the pool. The past few pool visits though had me concerned as I now seem to choke very easily on any water that might accidentally get splashed my way. Perhaps the weakness in my throat muscles now makes it more difficult for me to fend off these little unexpected intakes of water. It is a little scary.
When the muscle weakness or pain forces me to fall completely apart then I begin to walk again as soon as I am able to. It seems that I spend my life falling apart and then rebuilding again as soon as I am able to.
I wait for the day that I won't have to stop what I am doing because I am too tired to continue. I wait for the day that I won't have to go home and recuperate. I would love to be strong enough to just go work and play like everyone else but I currently feel that I live in my own little world designed specifically for me.
Muscle Damage From Myositis.
My right arm no longer lowers to my side. It is believed that the muscle leading from the neck down into the shoulder has shrunk, this raises my shoulder, and pulls up my arm. I was working part time at a call center to supplement my small government disability pension when this damage occurred.
This now permanent additional disability occurred because I continued to work after my hand and arm became inflamed. Because I did not have other income options at that time I continued to push myself at work even when I knew that I should not.
I did not have a very understanding physician at the time and he was reluctant to sign the papers which would allow me the unemployment benefits needed to supplement the income that my part time job provided. I was not able to have the much needed rest I needed to recoup from the current flare. By the time my last appointment with this doctor occurred the inflammation in my arm and shoulder were more than obvious. He signed the papers, but it was too late, the damage was done.
The strangest part of this illness is that many times the inflammation does not show up on the tests that are currently recommended for the symptoms displayed. This could be because most doctors test for this illness just as they would for arthritis and look for CPK involvement. (There is now some indication that it could be enzyme activity creating the symptoms and this would not show up as inflammation.)
I knew that the extreme pain and fatigue that I was suffering, were warning signs for me to stop everything and rest, but my physician did not. My pain did not show on the tests that were given and my complaints were not acknowledged.
I usually disguise my extended arm by wearing bulky clothing or by holding my arm folded across my body. My arm will come down somewhat if I do everything perfect (or in other words completely quit working and living) but it has never come down fully since I acquired it. Physiotherapy did not help and the physiotherapist that I have since seen for it concludes that it may never come back to me.
I have JO-1 antibodies and this is one of the things that this illness has done to me.
Warm water or a light foot massage can help to increase circulation.
Soaking your feet in Epsom salts is not only relaxing but it can also help to ease muscle aches and cramps.
Epsom salts contain magnesium which easily absorbed through the soles of your feet. Magnesium helps soothe muscle pain.
Adapting to a disability is easier when you accept the new you.
Accepting that you are not the same person that you were before you became ill can really help to adapt to the illness much easier. Do not expect your body to follow the same routines that it did when it was healthy.
Learn who you now are, what your capabilities are, and adapt to the new person that you have become. Changing your lifestyle to fit your illness will greatly improve your quality of life.
With inflammatory illnesses never doing too much or too little of any activity seems to reduce the stress or inflammation involved. Living life in bits and pieces, or a little of this and a little of that, might now be a viable lifestyle option to adopt. It will allow you the energy to accomplish a great deal more than you would otherwise be able to, and thereby, improve the overall quality of your life. It also works to reduce the degree of pain that you are forced to exist in.
Remember to budget your energy. Your body is busy using up it's energy resources and there may not be much left over for you to enjoy life with. Fatigue is a natural part of arthritis, the more active your illness, then the more tired that you will likely be.
Budget out your energy reserves like other people budget time or money. First do the things that you must absolutely do. Second do the things that you want to do (which is logical because why would you even want to exist if your life has no rewards). Thirdly and with whatever left over energy is remaining, do the things that you should do but that won't really matter if they get done that day or not.
I put whey powder into yogurt or a smoothie to give me added protein.
Let Your Endorphins Out To Play
When you participate in pleasurable activities like smiling, laughing, exercising or playing, your brain does an amazing thing and releases a little chemical message known as an endorphin.
These endorphins are feel good messages that 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. These endorphins not only have the ability to relieve pain but they also have the power to make you feel happy. So remember to take time to play - It really is important.