My dilemma. Any advice is appreciated. After a not-so-healthy summer, I spent September & October with a wonderful, new (to me) Rheumatologist, definitive dx through many tests and an Opthalmologist visit. Primary Sjogrens (what does 'primary' mean), Fibromyalgia, Hypoglycemia.

I have Lupus anti-bodies that are inactive right now. My mom died from Lupus, scary. Got the green light on resuming an exercise program focused on strength training. To start slow & small and to build as I can. My Dr. Made clear that my focus should be on building strength & mobility and not on weight loss. He said that I also needed to rest when my body demanded it. That has been the hard part. I ALWAYS want to rest! Lol. How to distinguish need from want? I did great at the gym for three days. Today, my body answered the above question for me. Not just routine soreness, but my body is on fire with pain and fatigue. I don't know how to be a whole person anymore. I don't know how to give in gracefully & rest. I don't know how to fight the 'lazy' label I keep hearing in my head when the gym isn't visited & chores are left undone. I don't know how to fight the guilt or the fear that if I miss a day I will never get back to it. I'm not sure if I need advice or just needed to vent? No, need words of wisdom.

10 Answers

brewingtonl
Answered 11 months ago    reply

Spread out your exercise. Try and exercise every 2 or 3 days for an hour. Even if just a gentle walk. An exercycle is great - non impact and gets those stomach and back muscles nice an firm. I have always found the fitter I am the less symptoms I have. Hard at times I know.

marquitafalco
Answered 11 months ago    reply

Thank you, Loralee. It just makes sense, doesn't it?

brewingtonl
Answered 11 months ago    reply

It does. Like most of us with sjogren's syndrome I have off days but I just get on with it. Just about to go to my aqua jogging class this morning (New Zealand) in a heated outdoor dive pool. Always feel better after it - and especially the coffee session at a local cafe with my classmates.

marquitafalco
Answered 11 months ago    reply

Loralee, that sounds wonderful! Enjoy!


svisser
Answered 11 months ago    reply

So pacing myself has been my greatest challenge. I just have so many things I need and want to get done in a day but I’ve come to the realization I’ve only got so much energy. So I would first say exercising, although is fabulous is something that’s exhausting. So I recommend going 2-3 times a week, you don’t want to over do it and that way you have a day in between each workout for your body to rest. Also, aqua exercise is wonderful because it’s so low impact and much better for us sjogren's syndrome peeps and our awful joints. Secondly, on the days I go to the gym I don’t do much of anything else. I plan it so I do most of my chores on a day that I’m not working out or have something major planned. Also I try to rest prior and after. Also Epsom salt baths after a workout feel so good on sore and aching muscles and body! Don’t be so hard on yourself, you only become lazy if you stop trying. Just because your pace doesn’t match others doesn’t mean your not just as successful at what your doing. But one of the hardest realities I’ve had to face and tell my self is that some days I’m not going to have the energy to do much of anything, there are some things I’m going to miss out on and I’m never going to be able to keep up with other people my age. But on those days when I can barley get dressed in the morning, I look at the bright shining sun and remember what I do have. I nuture my body with healthy foods, rest, some light yoga or meditation, I turn on my favorite tv show or color and remember that this too shall pass and I will have better days ahead. Skip days happen even too perfectly healthy people so don’t feel bad about that either. Stuff comes up. Also a day after the gym or something majorly exhausting I make sure to have a rest day to catch up on spent energy. You can’t control what happens to you but you can control how you react and think about it. At the end of the day you can only do what you can do. Do your best, stay positive, and keep your head up. Life with Sjogrens is hard and sad but life is also beautiful and joyful and everything wonderful. Make the best of each moment, and take it day by day or task by task. You are strong and I believe in you sending my love and good vibes your way

marquitafalco
Answered 11 months ago    reply

Wonderful words of advice, stephani, thank you so much. Both you and Loralee have mentioned exercising in water. I'm going to look into this. Again, thank you!

frazer.zofia23
Answered 11 months ago    reply

Another vote for water aerobics. Gentle walks. Yoga or Pilates (it's like cats and dogs, some people like both, but may seem to either 'get' one or the other. Tai chi. I need to start that again! My previous instructor taught me that "just thinking through the form" was exercise, and I did find that was true. Too many years ago now to remember the form, sadly.


key
Answered 11 months ago    reply

Just do what you can and don’t feel guilty about resting. The hardest thing for me is when I lay down on the couch and look around and see stuff sitting on the kitchen table that needs to be picked up, knowing I have laundry to do, etc. Chores or whatever you want to call them that I can’t keep up with drive me crazy! My Rheumatologist told me even if I just walk around my house a little bit for some exercise is good enough. I have a lot more going on than sjogren's syndrome. Just do what you can do. Just try not to over do because then it’s harder to bounce back in my opinion.


gruesome
Answered 11 months ago    reply

Lupus falls under Secondary Sjogrens. If you look up Secondary Sjogrens it will explain the diff between primary and secondary. I have Secondary Sjogrens

marquitafalco
Answered 11 months ago    reply

Thank you, sauceda. Yes, I have some research to do. We are our own best advocate. I need to get on it.


related questions