I have put on more than 50 pounds since lupus in a 10 year span.
Yes I am a mother of 2, but the weight started piling on after the pain settled in. Becuase of the flares during and after pregnancy- never could lose the weight like most people. too high of steroids and horrible fluid retention.
Everyone with Lupus knows that when your in pain-> You stop moving and going..
I have already put healthy eating into place, but now its time for exercise.
What do you do to be fit without hurting your body?
How do you stay active and not bother your joints too badly?
Regarding weight....i'm a thin person but with the drugs i take i should be carrying some weight but for some reason can't gain none and if my thyroid gland goes abit hypo i lose more.
Steriod meds can cause alot of weight gain as i know from years back but was lucky to go from 18st back to 9st but you'll get some great comments from members refering your discussion.
Regarding exercise i'm limited due to my disability with my muscle Atrophy besides circulation and other issues but what i can do is paced when i do, do anything as it can hurt your body more doing to much.
I had gained alot of weight too. But I finally found a solution! I’ve stopped using butter, olive, canola and vegetable oils to cook AND bake with and replaced them with coconut oil! I’ve now lost 15 pounds in two months. That’s all and I feel great and don’t hurt nearly as much! Hope this may help you or someone else!
This is one of my biggest complaints also. We have a free week at the YMCA and they have an aquatics program taught by the arthritis foundation, and several other exercise classes to get started with. I have an appointment with my GP tomorrow and I'd like to have my thyroid checked as well as my Vit D level. I take a water pill daily, and my rheumie and I decided against any steroids. I walked two blocks yesterday with my puppy, or rather she walked me : p
I go for a walk with my dog. I try to do this daily, weather permitting. I made CDs of my favorite music and used to dance for exercise, too. I also would put on some music while I clean the house to try and give me more energy. I’m not on steroids which we know can cause weight gain. I remember having to use prednisone about 8 years ago for just 2 weeks and in those 2 weeks I gained 10 pounds. I did have a hard time losing it. Regarding my diet, I hardly snack on chips, cookies/baked goods, anything with sugar. If I have a craving for something sweet I’ll eat fruit. I also don’t drink soda pop. And one last thing is that I drink tea. I use organic honey to sweeten the tea or nothing at all. Green tea is good for losing weight, ginger lemon tea is good for those with stomach and intestinal issues like gas, nausea, and inflammatory stomach pain, and I love apple cinnamon tea for the flavor. This is what I find works for me. If you’re not a tea person then lemon water will do.
Lovely to see you on here and i hope what you've written does help other's...as weight issues can be a struggle when your aching constant besides.
Terri :)
Deanna said:
I had gained alot of weight too. But I finally found a solution! I've stopped using butter, olive, canola and vegetable oils to cook AND bake with and replaced them with coconut oil! I've now lost 15 pounds in two months. That's all and I feel great and don't hurt nearly as much! Hope this may help you or someone else!
Just love your attitude mate but just be careful incase the activity your doing could be adding a bonus to when you do ache.
I've been on steriods years back and i blowed from 71/2st to 18st and i lost the lot in 6mths when i was pulled off them and the only other thing which puts weight on me quick is warfarin, your talking a stone in a week...thank god i've not touched it for a few years.
Keepkeepinon said:
I go for a walk with my dog. I try to do this daily, weather permitting. I made CDs of my favorite music and used to dance for exercise, too. I also would put on some music while I clean the house to try and give me more energy. I'm not on steroids which we know can cause weight gain. I remember having to use prednisone about 8 years ago for just 2 weeks and in those 2 weeks I gained 10 pounds. I did have a hard time losing it. Regarding my diet, I hardly snack on chips, cookies/baked goods, anything with sugar. If I have a craving for something sweet I'll eat fruit. I also don't drink soda pop. And one last thing is that I drink tea. I use organic honey to sweeten the tea or nothing at all. Green tea is good for losing weight, ginger lemon tea is good for those with stomach and intestinal issues like gas, nausea, and inflammatory stomach pain, and I love apple cinnamon tea for the flavor. This is what I find works for me. If you're not a tea person then lemon water will do.
As soft as it sounds it could be gland trouble but i really hope the YMCA exercises help you besides :)
Trisha said:
Hi LWL,
This is one of my biggest complaints also. We have a free week at the YMCA and they have an aquatics program taught by the arthritis foundation, and several other exercise classes to get started with. I have an appointment with my GP tomorrow and I'd like to have my thyroid checked as well as my Vit D level. I take a water pill daily, and my rheumie and I decided against any steroids. I walked two blocks yesterday with my puppy, or rather she walked me : p
In just a span of 1year I have gained 30lbs of weight while on pred! And yes my body fat % is now 44% level! I am really trying hard not to eat unless I am hungry but my appetite is just uncontrollable!!! I could eat almost evrything. So I have decided to act on this! Starting this April, I enrolled in a gym near my workplace. Every morning before going to work, I would be at the gym working out for at least an hour. And sometimes I join yoga classes. I used to swim but because of my leg injury and infection and my last lupus flare, I couldno longer do that. I am giving myself a year to lose all the 30lbs. It’s a slow journey but it’s worth it… And I have been reading a kimberly snyder’s two books. I think her way of explaining how to properly combine food makes sense to me based on experience…
You are not alone on your weight gain struggles! I also hate that moonface look hang in there!
that is awesome Deanna, I have been using olive oil so I will try the coconut oil Deanna said:
I had gained alot of weight too. But I finally found a solution! I've stopped using butter, olive, canola and vegetable oils to cook AND bake with and replaced them with coconut oil! I've now lost 15 pounds in two months. That's all and I feel great and don't hurt nearly as much! Hope this may help you or someone else!
I am struggling also, you are not alone. I wish I could add tips but this is new for me also. I am hoping this will change soon with the reduction in prednisone
Terri, I’m sure to be careful because my body wouldn’t have it otherwise. Thanks for the concern. Definitely a valid point. I do have pain daily, it’s just not constant anymore. My activity level depends on which part of my body is hurting that day. Some days it’s a “no activity” day and other days when I get a break from the pain my dog will look at me with those pleading eyes of his begging me to take him for a walk. A lot of the time I don’t feel like going and I think it’s more mental than physical, but when I do go I find that my mind is more at peace and relaxed. As far as dancing goes I hardly do that anymore because I never have any time alone. As for cleaning the house, that gets done in spurts. Clean a little, sit and watch tv, clean a little more, read a little, etc.
It’s too bad meds can lead to such drastic weight gain and change our appearance so much. We don’t really have a choice at times when it comes to taking these types of medications. If they help, it’s worth it, but trying to take the weight off is a challenge in itself. Lupus is not the only challenge we face. The side effects we experience from the meds prescribed for lupus are challenges themselves. Thank goodness for this forum where we can empathize with each other.
Tez_20 said:
Just love your attitude mate but just be careful incase the activity your doing could be adding a bonus to when you do ache.
I’ve been on steriods years back and i blowed from 71/2st to 18st and i lost the lot in 6mths when i was pulled off them and the only other thing which puts weight on me quick is warfarin, your talking a stone in a week…thank god i’ve not touched it for a few years.
I real feel for you and other members because struggling with weight which pulls on our bodies is'nt fun when your coping with other issues besides. :)xxx
kawena312 said:
I am struggling also, you are not alone. I wish I could add tips but this is new for me also. I am hoping this will change soon with the reduction in prednisone
It's nice to know that you know what your body can take as other members have pushed themselves in the past and really hurt there bodies with more pain.
I am pleased you get days where you pain level is'nt so bad and it also seems that your dog picks up on when your bad more days than other's as my staff is the same but he smells me. lol
It is alot to do with our mentality your right because sometimes if you feel better your brain does'nt want to kick into gear to match, it's so unreal the fight we all have on our hands and it really annoys me when people think we're ok, sometimes it does make you feel like saying HERE HAVE IT.
I've just added a pic for DeAnne for where the cleaning is concerned a light weight hoover which is bagless and cost £40 brand new and the weight is only 1.25kg and it's a great little thing with good suckson as heavy stuff to we is like lifting lead.
That's not me it's the woman advertising it.
Well when i stated i was 18st it was through these two steriod jabs which they had me on in large doses which caused brain damage to me in the end besides tablets and besides the weight gain they caused milk to come from the breast and i had to keep wearing womens milk pads for hen they've had babies as my breasts kept leaking that bad.
They may help alot which members have mentioned but after having the above and what they did, when they offered me prednisone i totally refused it, through weight gain i can't cope with carrying weight....so i feel for so many of you wanting pain relief but having to suffer the side of weight gain which is still extra pressure on the body.
Yes your right about we having LWL to come to :)
Keepkeepinon said:
Terri, I'm sure to be careful because my body wouldn't have it otherwise. Thanks for the concern. Definitely a valid point. I do have pain daily, it's just not constant anymore. My activity level depends on which part of my body is hurting that day. Some days it's a "no activity" day and other days when I get a break from the pain my dog will look at me with those pleading eyes of his begging me to take him for a walk. A lot of the time I don't feel like going and I think it's more mental than physical, but when I do go I find that my mind is more at peace and relaxed. As far as dancing goes I hardly do that anymore because I never have any time alone. As for cleaning the house, that gets done in spurts. Clean a little, sit and watch tv, clean a little more, read a little, etc. It's too bad meds can lead to such drastic weight gain and change our appearance so much. We don't really have a choice at times when it comes to taking these types of medications. If they help, it's worth it, but trying to take the weight off is a challenge in itself. Lupus is not the only challenge we face. The side effects we experience from the meds prescribed for lupus are challenges themselves. Thank goodness for this forum where we can empathize with each other.
Tez_20 said:
Just love your attitude mate but just be careful incase the activity your doing could be adding a bonus to when you do ache.
I've been on steriods years back and i blowed from 71/2st to 18st and i lost the lot in 6mths when i was pulled off them and the only other thing which puts weight on me quick is warfarin, your talking a stone in a week...thank god i've not touched it for a few years.
I'm in there with ya! I was finally losing weight about 18 months ago and was only 5 lbs from goal weight. Then I had to change from Imuran to Cellcept because my liver didn't like Imuran and I started putting it back on. I'm now up 20 lbs in the time period and it is soooooo hard to lose it. I may lose a pound or two, then a few days later, they're back! I'm still on prednisone (have been for 2 years) but only at 5mg...was hoping that low dosage would help, but it's not. Some days my hunger is insatiable! For the most part, I eat pretty healthy, but haven't exercised in 2 years...hoping to start that again soon though.
If you find a magic answer, please do share :-) Hang in there!
my husband & i own a personal training studio. he has been a personal trainer for 14 years. i have had lupus for 13 years so he has dealt with this personally. look for " low impact" for a fitness program. walking is the best to get started. also water aerobics is fab! if finaces allow look for a personal trainer who has more than a couple years exp. you can get 1consultation from most trainers. first and foremost ask your doc b/c they know your history best. hope this helps!
I swim in a heated pool & walk @ least 3 x's a week. I've gained 100 Lbs since being diagnosed 22 yrs ago. It will take a while to get it off but working @ it, watching diet & portions.
I totally feel ya!!! I agrrrrree!!! It is soooo frustrating!!! Everyone keeps telling me to try swimming because that’s so convenient…not!!! Get up get dressed take kids to school find a pool go swimming get dressed AGAIN take care of house run errands pick up kids get homework going make dinner…sound like a plan!!! LOL I will get right on that!!
Don’t mean to make light of your frustration I just wish I had a solution. It doesn’t seem to matter how much you watch your diet if you can’t excersise. I tried walking and I would do it for a couple of days then flare so I kinda gave up but am slowly working up to a routine on an excersise bike and that seems to be going ok. I do it until it hurts then stop wait a little while then do it again. We have so many up and down days it’s hard to keep a routine. I wish you luck!!! Let me know if you find anything that works
I could eat almost evrything. 
