Hi! I was diagnosed with SLE and Sjogrens Syndrome in approx 2007. I take plaquenil, prednisone, methotrexate, folic acid, restasis, evoxac, and others…those are just the “auto-immune” ones. I have a lot of back pain, joint pain and often overwhelming fatigue and of course frequent infections. My liver is not behaving right and I am under constant monitoring. I need to lose weight badly. I feel kinda trapped in this body thats falling apart. Does anybody have ideas for diet/exercise??
Indoor swimming/night swimming is a great exercise without too much exhaustion and no sun exposure.
Also I started eating a paleo diet shortly after being diagnosed and it really reduces flares and gives me some energy that I desperately need. Also helped me to lose 40 lbs. hope this helps. Stay strong.
I’m starting something this week so I’ll keep you posted on how it goes. I’m having the same issues and taking all the same meds except the evoxac
nicki, I have the same problem (lots of meds, weight gain, very bad fatigue,back, and joint problems). I too am looking for a way to keep going with the little energy I have. Fatigue is awful isn’t it! I so want to lose weight, but don’t know where to start----walking is even hard. Best of luck to you in finding your answer!
My doctor removed prednisone from my regimen and told me to.use it in an emergency only, once I removed the steroid my weight normalized and I never had organ damage. Talk to your doctor.
We.have the same exact diagnosis, plus I have mixed connective tissues disorder, which is causing alot of spasms but nothing else.
Thank you all for the advice! I’m going to check out the YWCA indoor pool!
I would definitely look into swimming (indoors) as its low impact on your joints especially if they are hurting. I'd also consider beginners yoga, you dont even have to go to a studio/gym, you can do it in the comfort of your home. Two of my favorite beginner yoga classes are on youtube:
20 Min Beginners Yoga for Back Pain (I'd start out with this one if you've never done yoga): https://www.youtube.com/watch?v=0o0kNeOyH98
40 Min Hatha Yoga: https://www.youtube.com/watch?v=PcC8hZPwj6w
Good luck! I hope you enjoy these as much as I have!
Pool is a great idea. Maybe they have some water aerobics! I concentrate on eating as healthy as possible…lots of veggies and smoothies made with things like beet and beet greens, kale or spinach, a piece or 2 of some fruit, ice & water. I usually have 1 a day…sometimes 2. I always keep hard boiled eggs ready in the fridge…celery with a little almond butter. Keeping the carbs lower…but may have some steel cut oats in the morning or a 1/2 of Ezekial Eng. muffin. (I am used to eating things plain, otherwise maybe just a tad of almond or other nut butter) hope this helps…I think a few of us are in the same boat. Just stick with your plans…if nothing else, you should feel better.
I’m in the same boat. I’m interested in the feedback you get. Thank you for posting.
Ditto on eating healthy veggies, fruits and whol grains. Cut out refined sugar and all things white - bread, rice, potatoes, etc. I lost 30 pounds in 5 months with Weight Watchers online. Well worth the $19 a month! Good luck!
Thanks for all the support and feedback! Its nice to have friends that understand. My rheumy says he’ll drop the prednisone if I can get on the Benylsta. I have high hopes!
Search the Paleo Diet or join weight watchers! I joined the YMCA and I started slowly with just walking on the treadmill. If you start slowly you will be able to do more. I just go even if I hurt and believe it or not, I feel better when I am through exercising.
Hi. Leading life with lupus is not an easy thing. But if u make a routine and positive attitude in life things will be little easier. I was also diagnosed in 2007. I regularly do pranayam and some easy exercises. It really helps me a lot. All the disease that we get of our negative attitude towards life and not having proper amount of oxygen. Doing difficult exercise can give strain in your body. I follow ayurveda diet plan which makes my body light. Thanks to pranayam and meditation making my life style positive.