Exercise for Myositis

I have had DM for 4 years. I am taking takeing 200 mgs of Imuran in the mornings. I walk 3 - 4 times a week, weather permitting, and use my treadmill occasionally. I have a big problem with shortness of breath and some discomfort in the abdomen region. I have had pulmonary function tests and they are ok. Also been checked for heart problems. Also ok. How much exercise should I be doing? and what would you recommend that could be causing my problems. Thank you.

I exercise daily, is that too much exercise?

What are the best exercises to strengthen the quads? What are the best exercises for balance especially when you have anxiety about falling? In walking for exercise what walking aids can be used to promote stability, balance, and reduce the anxiety of falling?

Why should IBM patients exercise more frequently (2 times a day) than patients who have PM or DM (3 times a week)?

Does one grow new muscle cells/tissue with exercise, or is the purpose to strengthen what is left after a polymyositis flare?

I spend one hour everyday focusing on rehab exercises I learned from PT, am I overdoing it?

I have had DM for 2 years. Recently (2 mos) my exercise goal consist of walking on the treadmill for 30-45 minutes 3 times a week. On the days I do not walk, I try to lift weights (2 lbs.) to work on strengthening my arm muscles. I also stretch in the evenings. On some days, exercising is a struggle due to my fatigue. What is the risk of pushing through the fatigue to get in the exercise? Also, what about core strenghting exercises? What are your thoughts on taking creatine? I'm so happy to be able to participate and sorry for so many questions.

Is the purpose of exercise for an IBM patient to slow down muscle loss or can I expect to actually regain muscle strength?

What is the current recommendation for types of exercise (and the amount) for people with IBM? In the past, I have been cautioned not to "overdo" past the point of mild fatigue.

I have sIBM, diagnosed 2012. Soon after I developed a group of exercises that are posted on TMA site. I am not now able to perform most of the exercises. What does the future hold for me?

What are the best strength building exercises for IBM patients? How often should you do them?

What are your thoughts on BFRRT (Blood Flow Restricted Resistance Training) for IBM patients. Have you seen any results from the University of Southern Denmark trail for IBM patients?

I have IBM and my deterioration is outpacing my occupational therapist recommended exercise program . Flexor muscles in hands and feet are not functioning and I have some residual strength in my arms. Looking for any mitigation plan.

I am in remission from polymyositis...however, my neck muscles continue to be so weak that at the end of the day, it is difficult to hold up my head. Can you recommend specific neck exercises to help with this problem? Thank you.

I'm 60 and I've had DM for 8 yrs now. I'm currently on 7 mg prednisone and my CKs are usually a little higher than average. I lost 3 inches in height because of the large dose of prednisone. (currently 4-10.5" 120 lbs) I have lost additional muscle the last year or so in my ability to go up stairs and get out of chairs. (I about crawl up the stairs and I have to be careful on how short chairs are that I sit in) Over the years I was told not to exercise till my CK was normal. I wish I had never stopped exercising.... Now I'm trying to fix it. It's hard to try too many new things because my back always "goes out". So I end up being too safe when it's time to exercise. I just did 4 weeks of water treadmill and it felt fine. I have started to itch the last two weeks (I've not had a huge problem with the DM rash and don't want something to start getting bad) so I cancelled the remaining appointments. I'm so hunched over because of the osteoporosis and I'm sure I've lost some supporting muscle for the spine. I'm trying to work on my nutritional (gut) health also. What can I eat or take to help my muscles rebuild also? Is there hope for getting better and what do I do? How do I start?

What do you suggest for those with Antisynthetase Syndrome, when lung disease is a predominant feature and exercise intolerance is moderate to severe? This is the case for me and despite asking many professionals what their opinion is, I am simply referred to someone else or told to just do what I can. Since that really isn't much due to SOB and muscle pain, it's not much of a solution. Do you have any suggestions that might help? Thank you for addressing this topic!

My name is Leslie and I have PM since April 2004, I find that I have low tolerance for exercise. No matter what I try, swimming, walking, etc., severe fatigue sets in quickly and I must stop an rest. I'm at the point that doing light housework is about all I can handle, and after that I am very tired and need to rest. I do pace myself with the housework, which helps a little. I am currently off PM meds, for now. Is there some form/type of exercise you can recommend and that I can do at home. My PM leaves me with issues with my legs and shoulders and arms, weakness mostly. Thank you!

I am a 43 year old woman, with antisynthetase syndrome (anti Jo-1) and am in a remitting phase after significant muscle loss from polymyositis. I also am on the lung transplant list for Pulmonary Fibrosis and use O2 full-time. I attend Pulmonary Rehab to try and maintain/increase what lung function I have and the Respiratory Therapists with whom I work have no experience with myositis.

I have a few questions for you today:

1) When muscle is "wasted" from polymyositis, what type of skeletal muscle is typically effected (red/slow, red/fast, white/fast, all of them)?
2) When that muscle is destroyed through polymyositis, can new muscle fibers be generated, or is it only possible to strengthen the remaining muscle fibers?
3) Given that I am quite limited in both my strength and cardiovascular abilities, what kinds of general advice might you have for my Respiratory Therapist (who guides my Pulmonary Rehab) about what we should concentrate our work effort on: building strength, endurance, cardiovascular, stretching, resistance, something else?

I know you aren't able to give me specific medical advice, nor are you intimately familiar with my case, etc. However, my Respiratory Therapist does not have ANY experience with a patient like me and I'd be grateful for ideas of tools, resources, suggestions, or guiding philosophies to bring to my work with him to maximize what we accomplish in our time together. Thanks for your consideration and assistance!

Intensive exercise has been shown to be anti-inflammatory. As long as you feel well during and after exercise and improve in physical capacity you should continue and increase your exercise over time. If you experience a flare, you will need to adapt exercise intensity, but you should still try to exercise and be physically active with walks.

What exercises for sIBM can be done safely at home? I walk around our home with a walker--fell in late October, 2014, and fractured my left ankle in three places and had to undergo major surgery to put the ankle back together. Never regained my confidence to walk with a quad cane. I have a Stamina In-Motion Elliptical Trainer, Exerpeutic 7101 Active Cycle Mini Exercise Bike (for my hands and arms) and an overdoor exercise pulley, which I purchased a couple of months ago. Any recommendations on how to best utilize these three items in a exercise program at home? Thank you.

This is a two part question. Can you still perform vigorous exercise like the Air Force Fit to Fight. And can you still be and/or do you know of anyone still the Military with an autoimmune. My background I have been in the military since 1996 active duty Army for four years the rest Air Force Reserves. February of 2015 I was diagnosed with polymyositis, which has barely affected my job in the Air Force Reserves. This past weekend I need to extend my profile because of a relapse I had in January due to medication. That's where everything went to hell, now the Air Force medical reserve side is trying to end my military career after 19 years. The sad part is that I am at my lowest weight and healthiest I have been in years despite having an autoimmune.

I have IBM (supposedly). When I started prednisone, the stiffness in my fingers and knees went away. Now that I'm off prednisone, it is coming back. Is there an arthritic component of IBM? Should I be taking NSAIDS?

I was diagnosed with DM one year ago at age 55. I have always been physically active, averaging 10-13 hours weekly of spin, yoga, step, weight lifting and boot camp classes. Onset of DM symptoms was sudden and muscle weakness extensive but diagnosed quickly, and responded well to prednisone and methotrexate. I resumed exercise 5-6 months after diagnosis and currently enjoy all my activities at the same level as before. The muscles in my quads were the slowest to recover and although I seem to have regained my strength, I am bothered by painful knee joints which I never had prior to DM. Can DM directly or indirectly cause weakening of these joints and are there specific exercises to strengthen the leg muscles without damaging the joint? Or exercises you shouldn't do to aggravate the joint?

(PS I have tapered off Prednisone and continue to be stable on 20 mg methotrexate weekly. Feeling very blessed.)

When I exercise my quads for IBM, should I concentrate on stretching the muscle or strengthening the muscle by tensing the muscles?

I am having DM, PM since last 2 years. I was on steroids and methotrexate for some time. But i noticed that when i reduced steroids below 15 to 20 mgs per day i would get recurrence of symptoms like fatigue, cramps on climbing. I had a bout of viral fever last winter which was pretty bad and lasted for long for about 3 to 4 weeks and during this time i had lost quite a bit of my body weight. Also my sugars went up, so i tapered and stopped steroids and methotrexate. Currently i am just taking hydroxychloroquine and multivitamines. I am having arthritis, polyarthralgia specifically during winter which made it very difficult for me to do any kind of exercise. Now i notice that my joints get stiff if i sit in a chair for long time or early in the morning. After long walk or work, joints do become painful. What kind of exercise you would recommend to me, how often and for how long.

Thanks and best regards.

I can certainly see the benefit of exercise in myosotis, but what about in Antisynthetase Syndrome? There seems to be no real information out there for a person with both muscle and lung disease that is made worse with activity. I'm afraid being told "just do what you can" isn't terribly helpful. Do you have any opinions or suggestions?

I have had PM for almost 11 years now but have never had Physical Therapy until now! I have been at it 3 weeks now and do see some improvements but there are many days when I am concerned that the PT is doing some damage, is it possible to do core muscles PT and build up the muscles that are left or am I doing more harm. My balance has been off and I have NO strength in the thigh muscles. I showed the Therapist a pamphlet that explains PM but am not sure if I got through to her! And can therapy twice a week raise the CPK?