Leg and Arm Exercises for Myositis

I demonstrate and discuss some exercises and techniques that have helped me deal with this disease of polymyositis.

[@NAPNYC4938]

One of the best videos on on this subject. Hope you're still doing well brother

[@godswordforlife3155]

just found your video. Thank you so much! I have DM and just started pt. the therapist doesn't know what to do. your video will be a huge help! God bless you!

[@lindahoskins3692]

Thank you for such an informative video. I'm only just diagnosed and this is going to be so much help. I hope you stay well and have a great year.

[@christinaarnold8209]

Thank you, from the bottom of my heart. The exercises are great, but the hope that this can improve is priceless.

[@abhishekr987]

Have you been diagnosed with polymyositis?

[@christinaarnold8209]

@@abhishekr987 Yes, I was diagnosed 10 years ago with polymyositis.

[@abhishekr987]

@@christinaarnold8209 How are you now & could u pls tell me ur recent CPK level?

[@fitfighting]

Thanks very much, Ryan! I 'm Personal Trainer and today I start treating a patient with Miyoshi Myopathy, I was watching your video and it will be very useful for me. A hug from Chile! 💎

[@DCross-kh9px]

Thank you Ryan. I am self diagnose. I have had to research and do everything without any help. Every exercise you have shown I had to figure out myself. I sure wished I would of found your video sooner. This video will be a Blessing to anyone that needs help for Myositis. This all started due to having Rheumatoid Arthritis and taken Rosuvastatin. Within 2 months I started losing the ability to get up from chairs, toilet and bed. Long story short I had to research all my symptoms myself. Keep telling my Cardiologist of my symptoms with no avail. I stopped the Statins back in 8-2022. And the effects kept going on till January 2023. I started taking CoQ10 on my own and my symptoms started getting better slowly. I still can't get up from normal chair or toilet height or shower chair height but I can walk and can barely step up 2 inches. I'm getting there. All your exercises suggested I started on my own. Gosh I sure wished I would of found your video sooner. It's truly a big help. Thank you sir and I pray you continue to get better. Thank you.

[@RyanHarveyphoto]

Glad they could be of help!

[@mysjogrensjourney]

Thank you so much for this video ❤️. I’m on short term steroids and told now’s the time to exercise and I was scared to overdo it because I get terrible fatigue from my myositis (not fully diagnosed - but some form is definitely happening). Anyway I’ve just done your exercises after not doing anything like this for over two years and even then intermittently. It felt wonderful. Thank you so much for putting this video up 🙏🏻. Hope you are doing well.

[@NAPNYC4938]

Sounds just like me. ❤

[@RyanHarveyphoto]

Glad it could help!

[@amyadams7256]

I just found ur video & I want to send u a huge Thank You. While searching for videos on exercise for polymyositis all I've seen is people explaining the condition. So when I finally found ur video I got excited. Thank You again & wish me luck.

[@IshaKazim-q7g]

Can you add some more exercises these are very helpful for me , I'm 19 years old and myositis patient, hope you're doing well ❤

[@slmslm7220]

Thank you God bless you it's very useful to me because I am a myositis patient

[@JackpotSama]

Thank you for this video. It has helped me a lot

[@Dana-vq1tk]

Thanks for sharing. I hope your doing well

[@gailb]

Thank you so much for sharing. I’ve been slowly doing some of those exercises myself, and now I can add a few more.

[@williameardley4095]

Thanks Ryan very helpful just a month in with my dermatomyositis diagnosis. Wasn’t prepared for the frustration of things not working normally!! William

[@RyanHarveyphoto]

I know it’s rough. Hang in there and take it a day at a time.

[@blythesasmr]

I haven’t been fully diagnosed yet but with every symptom it’s pointing to this disease and it’s been giving me so much anxiety not knowing what’s going on with myself and I’ve been in a flare the past couple of days with extreme muscle weakness or pain and not having doctors tell me what’s going on yet and being so overwhelmed w how I feel I felt so much hope and support from this video Bc I haven’t seen any videos with people who have this disease or how they get by and I just really wanna say thank you

[@RyanHarveyphoto]

Jaysteen ASMR have hope. I was unable to lift my head up from the pillow a year ago. No core strength. It can take time to diagnose and treat, but people live with it all the time and continue daily lives. Don’t give up and pursue the right diagnosis. Don’t settle.

[@zengakix]

There is a group on Facebook that I found quite helpful, for information and also to scream on those very difficult days when you feel nobody else can understand what you go through. It is called Myositis Support Group (Dermatomyositis, Polymyositis, etc.) People are very supportive amd there's tones of information from other people experiences.

[@abhishekr987]

@@zengakix can u share link for the same?

[@RyanHarveyphoto]

@@abhishekr987 m.facebook.com/understandingmyositis/

[@zengakix]

I know this link looks weird but I tried it and it leads directly to the group 👍

[@zengakix]

Thank you, I am happy to see many of those are the ones I have been doing... so it means I am in a good way... Hopefully I could get more mobility and less pain and frustrations. Gives me hope to see you made it this far. Thanks for making this video.

[@RyanHarveyphoto]

Awesome - your welcome

[@abhishekr987]

Have you been diagnosed with polymyositis?

[@RyanHarveyphoto]

@@abhishekr987 yes and then revised to dermatomyositis later

[@abhishekr987]

@@RyanHarveyphoto my CPK level was 9599 (normal:50-350) in December. After that I am not continuous physiotherapy. Although I have improved, but I can stand upright from sitting position. Happy part is I can walk 🤞. Can u suggest something?

[@RyanHarveyphoto]

@@abhishekr987 it’s very hard to make any progress with a CPK that high. You will potentially only be able to exercise enough to maintain what muscle mass you have, but it’s going to be really hard to gain strength until that inflammation is under control. The meds doctors use typically take time to work. It may take 3 months or more to start to see the ability to regain muscle come back. Unfortunately, the medicine doesn’t give you the muscle back, only allows you to reduce the inflammation enough to exercise more and regain it. Move as much as you can... even if it means having a helper perform the range of motion for your legs/arms while sitting/laying down. You want to keep those muscles moving as much as possible. Search Google for “exercise and myositis understanding myositis.org” the videos there contain a wealth of knowledge. I have personally met those physical therapists as well. Very helpful

[@AshlitaKLaGrangeGA]

This was very helpful. Thank you. I got to get back to working out. I've also been watching how to do chair yoga.

[@Elim912]

Thank you so much I just found this video this really helped me a lot!!!

[@dfaproductionz4682]

Thank you ever so much.

[@MoneypennyFitness]

Thanks for sharing!!

[@iconsnicos]

Thank you for this video. I am from greece. My mother has been suffering from this from last spring till she couldn't stand in August she was in hospital for 3 months, at first there she could move only face and fingers not even elbows and now she can walk with a little help she is getting better for sure but she still can't turn on side in bed alone or get up to stand. It's weird because we do exercises and walks and that's why I searched for more targeted to this disease exercises. I ask physiotherapists that see her for what we do till now but it's a rare disease and I wonder if I could contact with you for more advice on this. I help her as much as I can in many ways and she is trying hard but someone's advice who has been through this would be very valuable! What to avoid what to do more etc and what helped you for real. Thanks!

[@RyanHarveyphoto]

iconsnicos I’m sorry your mother is going through this. I too was once in a hospital bed with very little movement. Left untreated the disease can become very debilitating and cause muscle wasting that is hard to regain and almost impossible if the disease is active. Feel free to direct message me with other questions. MSU is a very good resource and has done numerous exercise videos with the therapists at Johns Hopkins University Hospital that has a department that specializes in this disease. myositislife.org/2020/05/exercise-in-place/

[@iconsnicos]

@@RyanHarveyphoto Thank you! I will check it out. I hope you stay strong and healthy ! That video was very informative and helpful.

[@kathyt221]

Thanks for this video. How often should these exercises be done?m

[@RyanHarveyphoto]

Every day if fatigue will allow. Discuss with your doc!

[@billzab]

Cheers for these, very helpful

[@MrHeavyweight25]

hi ryan thanks for your video ,i currently have myositis do you see any different now

[@RyanHarveyphoto]

Yes but it can be up and down with this disease depending on if your in an active flare up or not!

[@టీఎంసీ]

Please share exercise video clearly

[@bhuvanbam8499]

I don't have enough strength to bend my waist. But I can walk. What treatment you are taking?

[@RyanHarveyphoto]

Bhuvan Bam currently on Rituxan, Cellcept and SCIG

[@talarisushma391]

It almost one months that I was diagnosed with myosities my cpk is 1600..i can walk but cant stand immediately and cant climb stairs..am so depressed i want my life back..pls tell me that i will get cure or not.how long it takes to get cure..doctor prescribed steriods and folitrax 5mg..suggest me

[@RyanHarveyphoto]

Unfortunately there is no cure, but many are successful with current treatment today. Everyone is different and responds to each treatment different. It can be a long road

[@talarisushma391]

How long it take u to cure from myosities

[@tunestareasypiano2079]

@@talarisushma391 how are you doing now?

[@talarisushma391]

@@tunestareasypiano2079 for this dec it took one year to cure 80% right now am able to walk and climb steps ..much not much like before

[@tunestareasypiano2079]

@@talarisushma391 keep it up...you will be there soon...practice deep belly breathing daily it will help a lot too

[@prathamkshirsagar6736]

What type of myositis do you have ?

[@RyanHarveyphoto]

Was originally polymyositis and then revised to dermatomyositis.

[@prathamkshirsagar6736]

@@RyanHarveyphoto do you have trouble breathing / swallowing ?

[@RyanHarveyphoto]

@@prathamkshirsagar6736 my current pft has my lungs at about 50%. I’m OK normally but get easily winded. I have had trouble swallowing in the past. Not currently though

[@prathamkshirsagar6736]

@@RyanHarveyphoto which muscle atrophy do you have ? Mine is calf muscle

[@RyanHarveyphoto]

@@prathamkshirsagar6736 everywhere from the arms and legs and neck to my core strength

[@dr.himamahida370]

Your are doing squats in wrong manner...the upper body must in neutral position.... The trunk is not flexed or extended it should be neutral

[@RyanHarveyphoto]

Hima Mahida Thanks! With this disease it can be very difficult to do all exercises “properly” due to lack of muscle strength. We usually start wherever we can just moving.

[@makhloufbenzemma4144]

Merci monsieur Je viens d être diagnostiquer myosite! Je suis en France!Traitement corticoïdes et immunosuppresseur! Je perds de plus en plus de forces et de muscles! Personne ne m a dit de faire des exercices. J essaie de faire des exercices légers avec des élastiques et c’est plutôt bien! J ai peur!!