Take a hike Myositis

It can be scary . . . because if I don't read my body's signals right, I could get stuck.1 min


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Take a hike Myositis

The woods in any season, in any weather, is the most comforting and peaceful place for me.  I am grateful to be able to get back to hiking and riding in the great outdoors. Of course, with dermatomyositis (DM) I am always cautious; listening to my body’s feedback and discerning if that feedback is a red flag or something that can be pushed through. It can be scary –  if I don’t read those signals correctly, I could get stuck out in the woods! 

I recently went on a 4-mile hike with an intense climb going in (elevation gains of 400+ feet) and coming out! I needed enough energy to make the round trip and I had to interpret and rely on my body’s signals. 

Getting my lungs to hit and maintain VO2max for at least 15 minutes was a big goal of this hike. It’s hard for those of us with lung issues to give our breathing muscles (diaphragm, intercostal, etc.) a challenging workout because the only way to get our lungs to max out is through some pretty strenuous muscle work. For this particular trip, I thought that getting some elevation gains in a short time would be the best way to pursue that goal.   

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I don’t know how I was able to do that hike! I have read about so many other people who struggle with lung involvement and it sounded like I shouldn’t be able to complete such a strenuous hike!  I can proudly report that I made it!  

I wanted to share some hope with all of you. Maybe, as long as I keep trusting my body’s signals, I will be able to continue offering my body these physical challenges. Maybe it will keep replying with “yes!”  I am pretty sure that my mind and my body are both happier out in the woods. 

Hike trail shown for Take a Hike Myositis article

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Anne Carlo

I was diagnosed on May 21st with Dermatomyositis - I started with the excruciating muscle fatigue... This has been dark, alarming, shocking, frightening, challenging and life-changing for me. A big part of my happiness is being able to move in this world! working out with my trainer, mountain biking (i rode hard every weekend!), hiking, explore Manhattan every May for my birthday….just always moving…makes me happy and fulfilled. And all of that came crashing down like a house of cards. My 2019 timeline:

February 25th – I had my annual physical with my internist and primary care doctor, and all was fine; I felt GREAT.

March 1st – forearms hurting a lot…felt like carpel maybe…but never had that before and my ergonomics are fine. Wrote it off.

March 5th – I had a session with my personal trainer and my quads were quitting. I couldn’t even do a standard back squat.

March 7th – I went back to my Doctor reporting on this muscle pain. Lots of blood tests. ...and my CPK levels are ALARMING. He refers me to a rheumatologist. Over the next three months, I worked with a neurologist and with the rheumatologist for evaluations: MRI done on my upper left shoulder and arm (that showed uniform, inflammatory myopathy), EMG - the neurologists were almost alarmed; it showed an insane amount of activity when the muscle should have been "at rest." Biopsy - left deltoid muscle. The pathologist rendered a diagnosis of Dermatomyositis based on that biopsy. The biopsy is the final, conclusive test. I have a scar. During the evaluation (March, April, May), nothing helped with the pain….i was prescribed Meloxicam (prescription level Tylenol) but after a week, that didn’t put a DENT and I didn’t want to take a drug that wasn’t working. I did find ways to cope…manage…but it hurt to move. I would do something for 5 minutes and have to stop for 10. There were mornings I wasn’t sure I’d get out of bed; Swinging my legs over hurt or sometimes I couldn’t bring them over. Sitting up hurt. I couldn’t write, or type without excruciating pain in my upper body and forearms.

TODAY, With an official diagnosis, I began a treatment plan on May 21st; I take 5 MG prednisone every day,...that is down from 40MG!!  And I take .6ml SQ methotrexate every week. I still have some things to manage and cope with, and I am learning some limits, but I am eager to see how far I can get back to normal. I never wanted a new normal; I want my old normal. I f-ing hate new normal though...

 

EDITED 10/26:  dropped prednisone from 7.5 to 5 MGs

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