The Faces and Spots of Myositis

I have had IBM for about ten years, starting with a little weakness, a couple of falls in 2011 and then a muscle biopsy in 2014. I had a lot of denial but since then have decided this is just who I am.

I used to have trouble with toilets, office chairs, recliners and even walking. Now I have technology to help. My chair lift, my Walker helps and when I want to get out I take my four-wheeled electric scooter. — Mark Challender

My name is Aubrey and I am 9 years old. I was DX with Juvenile Dermatomyositis, Lipodystrophy, and a Pituitary Tumor when I was 6 years old. I have great doctors and amazing support.

I don’t know anyone else in my state that has my conditions. I take a lot of medications each day, many treatments each month, physical therapy weekly, and I am tired a lot. But everyone around me understands and helps me live as normal a life as possible. I am a Myositis Warrior and I need a cure! — Aubrey, JDM

As a patient with DERMATOmyositis, my skin cells and other connective tissues seem to be highly involved, even though all of my spots haven’t been officially connected by the medical community, they seem to be related to DM to me. Whether it is my multiple retina detachments in both eyes and subsequent macular pucker and cataracts, my seemingly disintegrating scalp, my recurrent shingles, or my newly diagnosed torn hip labrum, it seems that the tissues of my body don’t want to stay together (and this is just a sample). Educating the medical field to look at the big picture is important, can I really have 30 different conditions at 40 years old? Or is it more likely that I have many things related to DM? — Emily Filmore

In the Fall of 2015, I was diagnosed with polymyositis after experiencing difficulty getting up from the floor/chair, walking up stairs, and muscle atrophy in my upper thighs.

I was a rare case as I had been living with 2 rare GI conditions, chronic intestinal pseudo-obstruction syndrome and short bowel syndrome since childhood. Unable to absorb any oral medications (and TPN dependent for all my nutritional needs) due to my GI conditions, my treatment options were limited to only intravenous medications. I am currently on IV steroids and IVIG. I travel out of state for all my medical care due to the severity and rarity of my case. — Mariah Abercrombie & mother

Martin Jarry, 47 years old, Montreal, Canada. IBM since April 2016. I’m training hard to keep my muscles alive, that’s why I’m gonna make a 10 kilometer of jogging in Ottawa, may 27th!

Jerry is the Founder and President of MSU. His main complaint, from the very start of his PM, has been excruciating pain and -a stronger word for- fatigue, as well as muscle weakness that soon followed. (Pain is known to occur in at least 40% of myositis patients and is now being recognized by myositis specialists.

It took Jerry 3 years to get a diagnosis after seeing over 15 doctors and visiting 3 University Hospitals. Jerry is one of the patients who does not display “typical” symptoms or lab result findings and his doctors focused on the “horses” rather than looking at the “zebras.”

A number of complications from the disease itself and medications have also been a large part of Jerry’s story, including strokes, bowel perforation, seizures, meningitis, myelofibrosis, diabetes, and many others — Jerry Williams, Polymyositis

I was diagnosed with Dermatomyositis in May of 2003. My first systems were in February of the same year. Symptoms were: red, itchy patches on my hands, face and scalp. In May, began the muscle weakness. I was put on high doses of prednisone and later, given methotrexate.

Besides fatigue, the biggest struggle I face is the tapering down of prednisone. Ten years ago, (!) I began the drop from 10 mg to 9. I tried many times and ways. I would have a flare (severe fatigue and muscle loss) my doctor ordered me back up to 30mg too many times to remember. FINALLY last year, 2016, I got myself through 9mg, then 8, then 7. As I approached 6 another flare surfaced. This time, I did not give in! I kept at my walking, exercise, and yoga. I only increased to 15mg. Today, I am steadily alternating 8mg with 7 1/2mg. I am encouraged by my “Fellow Warriors” @Myositissupport team on Twitter and Facebook and will begin 7 1/2mg through the month of May. Slow and steady to #STAYSTRONG, MYOSITIS STRONG!– Theresa Gregorcy

This is my retirement at the age of fifty-six, Polymyositis & not by choice. My choice would be to spend time with one or all of my seven grandkids, playing, going to the park; but I cannot lift them, nor run or walk with them like I use to. My choice would be to take just one more motorcycle ride with my husband through the countryside; but I cannot sit for long periods of time, nor swing my leg over the back seat or be the driver of my own bike because of my hands, legs, and shoulders no longer have the strength.

My choice would be to take a vacation, but I am fearful of being away from home for lack of knowledgeable doctors should I require one. My choice is to continue learning, adjusting, advocating and living jointly with PM and all of its overlapping friends of disease, it’s my choice, it’s my new life and retirement. –-  Belinda Madrid-Filla, TX

Hi, my name is Denise. In October 2016 I was diagnosed with Dermatomyositis.
It took 6 years to find out what I have. The disease started after a minor knee surgery.Within 2 days my legs were bright red and I had a fever. I couldn’t stand up or walk steadily. The fever became higher and my legs had a horrible ache. Six months later my arms turned bright red, with the same muscle aching pain. I have severe fatigue with this.

Within 2 days my legs were bright red and I had a fever. I couldn’t stand up or walk steadily. The fever became higher and my legs had a horrible ache. Six months later my arms turned bright red, with the same muscle aching pain. I have severe fatigue with this.

My body has been getting weaker; I can’t stand any more than 15 minutes at a time or walk far. I use a 4 legged cane, and use a scooter when I go anywhere.

My swallowing has gotten worse. I aspirate, anything I eat or drink is starting to go in my lungs. I can’t breathe right the weaker I get. I turn bright red the more I move and the muscle pain gets worse. I have to rest in between the smallest chores. Some days I am bed ridden if I over did a chore, even a doctor visit, or a small shopping trip will wear me out. It’s even affecting my eyes now, blurry, dry, odd twitching pain. I tried steroids and Plaquenil. Nothing helped so far. I am worried about the side effects of treatments. — Denise Henderson