Myositis – What You Should Know

Myositis – What You Should Know

May is Myositis Awareness Month – and if any disease needs awareness, it’s definitely myositis.

According to The Myositis Association, this autoimmune disease-causing inflammation of the muscles affects only about 50,000-75,000 Americans. (A more precise number is difficult to pinpoint, as many individuals go undiagnosed for several years, largely due to symptoms varying.) Subtypes include polymyositis – with which I was diagnosed at age 22 – as well as dermatomyositis, which has skin involvement; inclusion body myositis, which tends to strike older people, and juvenile myositis. Prior to my diagnosis, I had never even heard of it, nor had any of my family or friends.

Joanna Mechlinski

In February, the disease earned a moment in the media spotlight when musician Peter Frampton announced he had been diagnosed with inclusion body myositis, a form of the disease that is more common among men, and persons over age 50. Articles about Frampton also included basic explanations about the disease’s symptoms and prognosis. Nonetheless, many well-intentioned readers left comments on articles and Frampton’s social media, wishing that he “get well soon.” Unfortunately, barring a sudden scientific miracle, that isn’t going to happen with IBM.

The muscles primarily affected by myositis are the ones closest to the trunk of the body. This means that while I can walk on level ground, I have a great deal of trouble climbing stairs or rising from a chair. The muscle damage is often accompanied by chronic pain and fatigue. Some people also have trouble raising their arms over their heads, lifting objects or have trouble swallowing (dysphagia).

Onset is often rather abrupt – in my case, I happened to be halfway up a flight of stairs at the library when I suddenly lost the use of my legs. Panicking, I managed to grab the wooden railing an instant before I would have fallen backwards some distance. As it was late winter, the staff members who hurried to my side naturally assumed that I had slipped on some slushy residue tracked in by patrons. But it was obvious to me even then that something else was going on.

Until that point, I had been blessed with good health. I had never broken a bone or even had a cavity. Like most others in my situation, it had never occurred to me that life might abruptly become different, that I should cherish each day where I could do whatever I needed or wanted without a second thought.

Over the 16 years that have passed since that day at the library, I’ve gone through an ordeal that many people can’t even imagine. I’ve tried a wide array of prescription medications, as well as a myriad of treatments ranging from water therapy to acupuncture to CBD. I visited more “specialists” than I can accurately recall. But for the most part, I’ve learned to make my peace with the fact that I will most likely always live with chronic pain and mobility issues for the rest of my life. There is no medication or treatment that does much for me. What I now consider a “good” day is likely a pretty bad day for a healthy person.

That said, I don’t often let myself dwell upon the negatives. To be honest, I’ve gone through the gamut of “why me” moments over the years, the anger at missing out on normal things and having to adapt essentially every aspect of my existence. I wouldn’t be human if I hadn’t. But at this point, I’ve also been living with myositis long enough to know that complaining and shaking my fist at the gods isn’t going to accomplish a single thing, other than add to my own unhappiness. So I do the best that I can – all the while remaining hopeful. Who knows? There are new and incredible discoveries in medicine constantly. Who’s to say the next one won’t be for myositis? In the meantime, I continue to use my voice in the hopes of educating others, sharing my experiences for better understanding and acceptance.

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Authored by: Joanna Mechlinski

Joanna Mechlinski is a former newspaper reporter who now works in education. She is a chronic pain sufferer who lives in Connecticut and is a frequent contributor to the National Pain Report. You can follow her on twitter @castlesburning.

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Mary

I found out I have myositis through reviewing my medical records. I’ve had it for years now, and none of my Dr’s ever took the time to inform or treat me for it. Not even so much as a referral to a specialist who may have been able to help me. . Why would any physician ever do that to a patient?

Christy wright

I so appreciate your story. I too have suffered for an
Bout 13 years now with such chronic pain and people tend to not be able to see it so they think ita in your mind and even your own family just get frustrated and tired of hearing about it. The doctor’s machines do not come out and tell them exactly what is wrong so they cant figure it out either. I can now barely walk and loose my balance alot. I have a cane who is my best friend alot of days but more days my recliner is. I am only 55 years old but like you I survive during the day and cry myself to sleep at night and know there is someone worse than me always. Thanks for listening and understanding

Anna

Thanks for mentioning myositis!
I have had dermatomyositis for over 24 years, and can attest to the fact that it is little known.

My first symptom was difficulty swallowing, so I was sent to a GI doctor who told me it must be “stress.” When it progressed to include arm and leg muscles, I started reading medical books, and made my own diagnosis. Of course I requested the proper tests: ANA, sedan rate, EMG, and a muscle biopsy. All tests proved that my diagnosis of DM was correct.

My first reumatologis was very learned and taught me that autoimmune disease is more common than people think. He also taught me that DM is often related to lupus, RA, scleroderma, or any of the better known autoimmune conditions.

It is also related to cancer and severe allergies. It is more common than people think.

A neighbor whose house borders on ours died several years ago from the same disease.

She came down with it the same year I did.

DM can cause terrible pain, as can the bone degeneration caused by taking steroids to stop the attacks.

DM is officially an autoimmune muscular dystrophy, yet I have had problems with being involuntarily tapered from my pain medications to the point where my life was ruined.

God help those of us with DM. It actually can get less destructive with time (if one refuses to give up).

Alan Edwards

Thank you for educating we who may or may not have this disease. Like a comment below, myositis is another disease that has not been treated. Only a certain few intractable pain producing diseases are popular. I won’t name the few. The FDA decides and the CDC. I want to be healthy. Work in a factory. Plant a garden and walk through it. The government has taken control of who suffers and it will not be the police, pharmacists, physicians or politicians. Yes, opiates and opioids work. Lets not utilize them unless hospice is necessary. I bet most healthcare and FDA employees have no idea what myositis is. I wish you a joyful and painfree life, Joanna.

Joanna

@ Paul Cahan – None, in as many years as I can remember…

What antibiotics have you all had if any during past 3 years? Levaquin cipro etc can cause this.

George

I wrote a long paragraph then I deleted by mistake these codes never take
the main point was thank you for telling your story

Denise Powell

My father passed away as a result of polymyositis. He had suffered a long time until he was diagnosed. But after transferring him to a larger facility and a muscle biopsy he was diagnosed but the management of the disease was difficult. The neurologist said if this was diagnosed earlier it could have been managed and maintained quality of life. This was 1995. I hope that treatment and education to health professional have Improved.

Jeff

Wow, I am so stunned this article has knocked the breath out of me. I had a conversation with my wife just a couple hours ago and next thing I know this article appears out of know where. I was diagnosed with inclusion mucositis just this past week. My doctors first two clues were being diagnosed with dysphagia level four (only four levels with level four being the worst) the second clue was not being able to raise my arms above my head and only being able to walk on level surfaces and unable to climb steps (stairs) even the four steps to get inside my house.
I also had also have never heard of this disease either but have suffered severe pain most of my life started with juvenile arthritis and epilepsy as a young child now as an old man and dying from pulmonary fibrosis (a fatal lung disease).
I finally know for the most part what has plagued me for years just knowing has given me freedom.
I appreciate the author sharing her story and helping us understand more about this disease thanks to her sharing with us!

Mike Ellery

Thanks Joanna,You are a very good writer…very good description.I have the same condition and pretty much your same philosophy.Im an agnostic but i still pray and your included in them now.Cant hurt,rt?

Ann E Stickel

Thank you for sharing. I had never been aware of this condition and now I am. And will be able to share with others. More good days than bad days to you. Ann

Stan Riedel

Great, something they aren’t going to treat us for.

Mary

I had to find out through ordering,and reviewing my medical records. I knew it wasn’t just fibromialgia. I found out it had been discovered even before the fibromialgia diagnosis. Why my Dr’s didn’t discuss this with me, or even take an interest is a disgrace. One could have at least tried to refer me to someone who might have taken a human interest at best. I pray a cure is discovered soon. God Bless you all Abundantly.

Pamela Hoard

The first time I had tmyositis I was age 26. I had black and blue Mark’s on the upper back and shoulders from such severe muscle spasms, I was hospitalized for 3 days. It took 2 weeks until it eou look d improve enough to return to work. I am 67 now.
I have had severe pain in those areas ever since. This is the first time I have heard that it is a permanent condition. Last summer I was diagnosed with swallowing problems while hosourakuzed for another reason. I have had trouble raising my hands over my head despite a left shoulder joint replacement.
I have many other diagnoses that resulted in causing severe intractable pain like 5 fractures in my spine, degenerative disk and joint disease, isteoarthrutis and curvature of the spine.thank you for your thoughtful article.