My Story
Secrets to Successful
Coping Skills
Quotes, Poetry and Stories
That Resonated
A Few Words
on Pain
Books That Helped
Me Grow

Medical literature in a number of places has stated that there is no pain with myositis. This is only partially true, yes, the actual muscle wasting is painless. In IBM it happens so slow and silently that you will only notice it when you take the sudden and unexplained falls. The frequent aches and pains I experience are the result of overstressed and misused muscle groups that are called upon to compensate for the loss of quadriceps etc . If I want to keep on walking I put tremendous stress on my knees by hyperextension and locking my knees with each step, a highly abusive maneuver which obviously results in pain and inflammation and does lead to accelerated loss of cartilage. IBM patients are poor candidates for knee replacement since they are unable to do the necessary rehab work afterwards. In my case I have opted for injections of Synvisc to help with cushioning my knees. This will hopefully buy me a little more time to still have the use of my legs. As an aside, I also have been diagnosed as having SLE and Sjogren's Syndrome, so I do have my share of joint pains and neuralgia with that.

I have learned that even when I have pains I don't have to be one!

It would be an understatement to say that it is a challenge to live with a condition that is not well known and often poorly understood, even within the medical community. All too frequent I find myself in the role of providing information that there are different kinds of MYOSITIS (IBM, DM, PM and JDM : Inclusion Body Myositis, Dermatomyositis, Polymyositis and Juvenile Dermatomyositis) and that each of them is different in its development and treatment.

Most MYOSITIS patients have difficulty with managing basics of everyday living, all sorts of issues need to be addressed:

We have to swallow vanity and pride when it comes to using assistive devices, wearing "sensible" shoes and clothing. Fitted slacks for me have long become a thing of the past and have been replaced by loose fitting pull up slacks. Shoes have to be flat, light weight, yet supportive with good gripping soles. Hooded coats or jackets a must versus dealing with an umbrella. Accessibility is of huge importance. Is there a railing with steps or stairs, is there raised seating, booster cushions? handicapped bathroom facilities? (Not all toilets have the necessary height even in the handicapped marked stalls) A trip on an airplane can be nightmarish..

Loss of social contact due to poor accessibility, loss of self esteem if you have to depend on others for help. If you have swallowing problems you may no longer enjoy going out to eat. No conversations during dinner for fear of choking. You eat less because it becomes a chore and takes twice or three times as long.

On going issues of loss and grief since at least in IBM there is no remission and the muscle wasting although slow is relentless. The disease is progressive and does not respond to steroids or immunosuppressive drugs. No treatment that has been proven to help and a cure has yet to be found.

If at all possible physical therapy in a heated pool is of great benefit. I continue to do the aqua therapy in our hospital pool which I started in 1997. I have certainly gone downhill since then, I have tried my best in the last 10 years but as hard as I try the lost muscles cannot be build up again. However, the exercises have been helpful to strengthen muscle groups that have not been effected and that now help me to compensate for the loss. However, they have to work twice as hard to compensate for the loss of quads, etc. So I have to watch out for overuse injuries! The exercises do help with balance and flexibility issues which is very important too, plus the warm water (92° F) is very soothing and relaxing.

Another point that needs to be made is that MYOSITIS patients do need a team of doctors that hopefully talk to each other and are willing to address the whole patient. Most of us need the care of a Rheumatologist, a Neurologist, a Physiatrist (for physical therapy issues) and often also a Psychologist to help with emotional needs.

It is a full plate, you try not to have the disease define you and make the best of it. You concentrate on what you can do and not get hung up on what is no longer possible. And then ideally you become strong enough emotionally to reach out to others with the disease.

At last I want to mention is that it is of utmost importance to be surrounded by compassionate, supportive and understanding family and friends. I am blessed to have that and it has helped me over a lot of hurdles.

One more bit of advice, become your own advocate, learn to think outside the box, inform yourself about your disease, about alternative approaches to healing. Go with your gut and raise a lot of questions with your doctors!


© 2007 - Dagmar Slaven. All rights reserved.