Patients Sjögren syndrome
Are you able to exercise with Sjögren syndrome?
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Ok, who with Sjogrën syndrome is able to do as much exercise as recommended?
I, for one , was relatively able to do so : between 45 minutes (yoga, stretching, weight) a day and 30 min every other day (cardio) 6/week.
That was before breast cancer 4 years ago. Since then as much as I try I don’t succeed even with baby steps to do more than 10 to 20 min 4/week. Instead of giving me energy as it used to do, it leaves me so tired I loose my will to live (really?). So my fatty liver won’t get better from exercise ( never done it over my better years anyway and didn’t seem either to improve even from my healthy diet). Not very encouraging (and I feel often very easily misjudged as if it is by my own laziness that I’m sick?? oh! come on!) !
I’m beginning to accept (mourn) that I will not be as able (not even a bit less) as I was 4 years ago even when my hormonotherapy will end in one year. I still hope so, but I believe it less and less.
So now I do my daily work inside and outside and stretch(one stretch like a cat?) at the end of the daily chores and from time to time dance solo in my living room to add a bit of joy even briefly!
Anyone else who struggles with the amount of exercise recommended?
Hello @Misspoukinette, thank you for opening this discussion! It can be frustrating when you don't feel able to do what you used to or what doctors recommend that you do. Let me tag some other members who can possibly share with you.
Hi everyone, how are you today?
Are you able to exercise with your Sjögren's syndrome? If so, how much are you able to do? What types of activities do you do?
@Mark kevin @CIDP_Beth @Lala1124 @Pixiestyx @VickieN @jimmyboofet @Jmw200 @lovestulips @cbeadling @cmmusiclover @ColeenCoon @Jen-ny @Mickey2369 @SusannaH @tammiorw69 @DeeKris @mendykay @camcfadden57
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Courtney_J, Community Manager, Carenity US
I find that sometimes I can exercise, and sometimes I can’t. But I have 5 autoimmune diseases in addition to CIDP, so it’s not always the CIDP that stops me. I was walking 2 to 2.5 miles a day last summer. This summer I was exhausted all the time. We figured out I’d developed Hashimoto’s thyroiditis and I’ve been on thyroid meds for about a month; it’s helping! I’m going to start swimming and work with a physical therapist a couple times a week as soon as my doc okays it.
I hear chair yoga is great and there are tons of workouts with resistance bands on Pinterest. Overcoming inertia is the hardest part for me, and patience the second hardest. I’ve had to learn to start small and slow but keep at it consistently.
Any little thing you can do is worth doing.
@CIDP_Beth I sympathize! And thanks to remind me of chair yoga! Not as easy as it seems! They used it in the Alz residence for mom! We tried it with her😅.
For now, I’m doing the outside autumn works and it’s plenty enough! I have also magnificent fruit trees very generous and their fruits were also plenty of work.
At this precise moment, my body burns and I feel like I’m developping a fever, with fog brain. 😝 I’m taking a break from the outside work and will be dusting in about half an hour.
As you said, any little thing count!
Have a nice compassionate day!
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