Lupus SLE

[Wfpbof]

 Anyone else have Lupus and find it hard to keep up some days. Any groups for auto immune diseases on here?

[LoriWrites]

I'm new to the FitBit community, so I can't answer the question about groups. I also have Lupus. It's definitely hard to keep going some days. But, my disease is "inactive" at the moment, which my rheumy credits to my determination to get fit. I know that doesn't always happen, so I feel very fortunate.

What symptoms cause you the most difficulty?

[Wfpbof]

Hi , thanks for responding. I find it difficult mostly because of my joints. Also I have lung and diaphragm issues , that seem to be getting better over the last couple of months on my whole food plant based oil free diet.  I just have this one knee that likes to flare up. Also getting motivation to get past the exhaustion.  Lol. What have you had to deal with in the past and what changes have you made to be in remission? I would love some tips and ideas.

[LoriWrites]

My biggest issues were always joints, fatigue, mouth ulcers, and - in the beginning - kidney problems. Several years ago, I decided that I was on too many meds. I started walking (and VERY slow jogging) 3x a week. Then I added in kickboxing. I cut out caffeine (except for 1 cup of coffee occasionally in the mornings - it's usually my treat on the weekends). Added in more fruits. Cut out most sweets. It's so depressing though - all those changes and I haven't lost any weight. But, my anti inflammatory/pain meds have been cut in half, as has the Plaquenil.

Recently, I started doing walking workouts (YouTube) 4x a week. I also do strength training 3x a week (usually weights, sometimes combined with kickboxing). My rheumy really encouraged me to do kickboxing because of the impact. It seemed counter intuitive to me, thinking it would make my joints hurt, but it actually helped. I also started taking Melatonin before bed every night, which seems to help my sleep.

Is your diet difficult to stay on?

Are you on lots of meds? Sometimes I think the side effects we deal with are (nearly) as bad as the disease!

[Wfpbof]

I've just found out, waiting on some ultra sounds and more blood tests. I have managed to bring my c-reactive protein down 80% on the wfpbof diet. I've read a lot of stories about people doing this and not having any symptoms for years. Fingers crossed. I really dont know what to expect. I hope they dont give me prednisone or the chemo drugs I've read about. Kickboxing,  I thought Impact sports were out, but that sounds fun. I think I will check out a class. The other bonus about this diet is I've lost 22 lbs in 2 months,  right now it is easy to follow because I'm to scared to cheat lol.

[LaydeeJ]

Hey there!  I have found that by cutting back / or completely off sugar, gluten, dairy, and red meat, my joints feel much better.  I take daily multivitamins and turmeric supplements to help with any inflammation.  Drinking plenty of water helps too and I've just started back working out.  I did see on someone else's post that Melatonin every night helps too.  I will definitely start doing that as well because I don't sleep well most nights.  Good luck to ya!

[SunsetRunner]

Hello Everyone, 

anybody out there with Lupus SLE? I am new to Fitbit and would to connect with people having the same struggles with an auto-immune disease. I also created a Lupus SLE Group. You‘re welcome to add me and join the group. 

Thanks 
Kay 

[KateyJ]

Can anyone tell me how to join a group? Is there a 'group' search button somewhere ?