Staying Active?

[MamaHiker]

Hello! I was recently diagnosed with myositis. I don’t know what kind yet, but I’m thinking it’s derma. Regardless, before this diagnosis, I was a very active person. Outdoor exercise is a huge piece of my identity and happiness. Id like to hear if others are able to ever get back to being physically active. My body feels to strange to me right now. Walking to the trash can feels awkward, but a couple months ago I hiked a strenuous 300 mile trail. I just feel kind of lost and sad.

[Ironmytherapy]

Hello, I have Mixed Connective Tissue Disease/Lupus. I got Covid last year towards the end of July 2021 and was badly ill for 4 weeks; however I continued to feel very weak and at the time was a strength coach in a bodybuilding/powerlifting gym and I could hardly pick up a 5kg cast iron weight plate, I mean struggled bad. A year on and I’ve been diagnosed with myosotis and I haven’t been able to train at all. I myself was a powerlifter. I’m now having rehab physiotherapy because my outer arms, shoulder, and thighs are so sore and achy it’s unreal. Recently I’ve had very tender muscle achy horrible feeling in my neck and I’m so unhappy about it because sport has been my life. As a Strength Coach with the British Weight Lifting Association I had to leave my job because of sheer fatigue in my upper thighs from standing and walking through out the day. I cut my hours from 8 to 4 and still was exhausted when I got home. I’ve tried to do little bits of training at home. Although I listen to my body it still becomes unbearably sore to the point I’m nearly in tears. For pain relief my doctor gave me Co-Codamaol I have to take 1 hour prior physio and after I’ve finished physio to ensure I don’t get so uncomfortable. It seems it’s got worse. My daily activities have been compromised. I can’t carry a lot of heavy shopping. I have 2 Staffie dogs and I’m sore in my upper arms from walking them and I can’t walk them for long. Hope you feel better and I wish you sincerely well.

[MamaHiker in reply to Ironmytherapy]

thank you for your response. I wish the same for you!

[GrandMAptm]

Hi, you might find this article interesting as it is about Tri Bourne, a volleyball athlete in the past summer Olympics. He was diagnosed with Dermatomyositis in 2017.

tribourne.net/health?fbclid...

[MamaHiker in reply to GrandMAptm]

thank you for sharing!

[Catpuss66]

really active forum on Facebook you will get a lot more response lovely group & I havn”t even got DM. facebook.com/groups/themyos...

[MamaHiker in reply to Catpuss66]

thank you

[SoonToBe]

I hear you as I was an avid cyclist before anti-SRP NAM hit me doing 100 mile events with ease now 10-15 miles ride wipes me out of a day or more. Similarly hiking was a major pastime now a 2 mile walk takes an effort. Based o lots of research I see exercise is now seen a key to maintaining muscle for NAM sufferers so I am learning to be happy with what I can still do and to keep doing what I can do. Still cycling and walking as much as I can.

[MamaHiker in reply to SoonToBe]

thank you. Yes, I’m learning to be happy with what I can do!