Does anyone have a good resource for fitness/exercise and Sjogren's or other autoimmune illnesses? I'm trying to get a good grasp on what my best options are for building up my strength and endurance again after (what I assume is) a flare.
I tend to think of myself as fairly active. I live in the city, and during normal periods walk up to 20,000 steps per day. In the last few years, I've jogged regularly or done social dancing for up to 30 hours per week (!). Then I hit a low period and it all comes crashing down and it takes time go build my strength back up again. I always assumed it was a failure of will (argh) before . . .
Now that I know there is something else going on, I'm wondering if I can be more methodical about getting back in shape. Should I focus on strength, or cardio? Should I be taking additional vitamins or protein powder to help muscle recovery? Should I avoid working out for a while, altogether, and assume things will improve once the flare passes?
I'm seeing my rheumatologist on Monday, so I also have an opportunity to ask more questions.
You go girl!!!!!!! You are my new hero!!
I find walking, Pilates and tai chi to be manageable on a regular basis, but all bets may be off during a flare. Foam rolling (not sure if it's considered excercising) is low effort and can be nice during flare.
Aw, thanks. Really struggling with the fatigue now. I gather some may be thanks to the Prednisone taper. I miss being more active. I really miss tango with my husband, but class is late at night and I'm bushed right now.
Quote from: SunshineDaydream on March 24, 2017, 09:59:43 AM
I find walking, Pilates and tai chi to be manageable on a regular basis, but all bets may be off during a flare. Foam rolling (not sure if it's considered excercising) is low effort and can be nice during flare.
Right now I'm using my Fitbit to get myself back to 10,000 steps per day. Maybe it's time to break out the home Pilates and yoga DVDs, too.
Yoga would be great. Could reduce stress which could help alleviate or shorten flare!
I used to do yoga daily!
Be careful. If I'm going through a bad flare, I find that I need much more rest and if I stress myself too much, it will make things much worse.😱 I would listen to your body and not push it so much.
I used to run 3 miles per day but no more! If I can walk 3 miles it is a GREAT day! Listen to your body. If you push it too far, your body (Sjogren's) will let you know.
I like swim classes. You can get a great work out, but it's not so hard on your body and joints. Exercise should make you feel more energized, but I find if I do too much, it pushes me the other way and defeats the purpose.
Good luck and good health to you👌
Kathy
Yes, it is important to clue in to what's going on in the moment in your body. I think that exercise, even during a flare, is so important, but even just a little too much can make it worse. Gentle floor yoga is always okay for me. Next step up would be a short walk. If I am more tired afterwards, I know it was too much at the time. Swimming is also wonderful, although I am a low-intensity swimmer and spend much of the time just floating on my back. My favorite form of meditation! 8)
I used to hike 3-6 miles 2-3 times per week. I cannot tell you how much I would love to get back to that. I think it would require me to not work, because I just don't have that kind of energy left over. I was a dancer, too. I don't know now what I could do to get back to that. What a dream that would be...
It's really important for me to get back to the dancing . . . it's one of my and my husband's main date/bonding activities. Fortunately our favorite is tango, which is essentially walking with style.
Getting past the "hump" of getting back in shape was really difficult. It was a real test of will to make myself go to the gym on certain days. However now that my conditioning is pretty good again, it has had a dramatic impact on reducing overall fatigue.
I don't have any specific exercise recommendations, other than find exercise that you like so that you can sustain the effort long term.
(Personally I do weight training, cycling, spinning class.)
I don't consider exercise optional anymore. It is a key component of treating symptoms.
Remember it's ok to ease up/take a break when symptoms are flaring up!
My doctor recommended I continue exercising, particularly aerobic exercise, to reduce inflammation, and suggested trying ubiquinol to help with muscle fatigue/recovery.