I usually read all of the discussions and think what amazing people we have in this forum so I am turning to some experienced people for help. I was diagnosed a year ago, everything started with some joint pain. I was tested for everything under the sun and found to have Lupus. I was started on Plaquenil within 6mo of diagnosis. One of my biggest problems is the fatigue (well and the joint pain). My rheumy seems to listen but not to act on any of my complaints. So I have been reading on how to kick the fatigue. I have managed to gain 80 lbs over the last couple of years and actually am crying as I am writing this because I am so sicked and embarrassed. I feel like my brain is scattering everything I am trying to say everywhere. I don't have energy most days to do daily tasks such as laundry or even cook dinner. I know I need to lose weight and it will help with some of the fatigue and joint pain but how?! I can't get the energy to go past thinking about it. I want to get started on an exercise plan that will not spend all of my spoons in one day. I would also like advice on what everyone is eating (hoping nutrition will help too). Sorry to rant on I haven't ever done anything like this before :)
I’m afraid I can’t offer much advice but I just wanted to offer my support as someone who’s in a similar boat! Weight gain which makes you depressed + all the aches and pains that make up lupus = a struggle.
This group is amazing though, the lovely people have helped me in some situations and the support from people who understand is invaluable.
Hope you’re feeling a little better soon and if you find a way to shift the weight, pass on how! xxx
Such great advice Ann, I love when you share your experiences. Fatigue is a huge problem for me as well. I have had a slow gradual rise in energy. I have mentioned before I dog sit during the day, this has increased my energy. At first I had difficulty caring for one dog, then I added a dog, now 3 dogs. I am grateful for this experience with these amazing little guys. Some days I am back to the couch all day. I have not returned to my original (before lupus) energy level. Methloprednisone and plaquinel have helped a lot with the pain.
Wish you well :)
Angie G., I think Ann A. has summed up (so beautifully written as always) what I believe and am, in part, going through. After at least ten years with Lupus (diagnosed officially 2008? My brain is foggy) I have finally started with a physical therapist (I am on Medicare and it required doctor's orders but all I had to do was ask) and am doing some things on my own--like walking short distances. I would like to have the water therapy,and eventually I will, but for now I'm forcing myself to try and MOVE my body. I have been depressed and gained weight due to steroids and inactivity, plus my diet needed to be better. So this is a huge undertaking. But I know it all makes you feel better. And it takes time. Baby steps....over a period of time make a BIG difference. And don't beat up on yourself if you can't do anything some days. PACE YOURSELF---which I didn't know the meaning of until a few years ago and I am 62. I only knew how to "attack" the day in work, relationships, etc. All the best to you, Angie, LupanCatwoman
Living with lupus is a struggle, but, not insurmountable. I treat each symptom differently and as a separate issue. Like joint pain i take over the counter meds after my doctors approval. Each symptom is unique and not always lupus, some times we are vulnerable to illness because of lupus but we have to treat it separately. Just push yourself to be active, when you don’t feel well, in moderation, because there is always something hurting with lupus
Good morning friends, I feel like this is the one place I can bare my soul without.being judged. The water therapy has been recommended by my rheumy but I am too embarrassed to tell her why I won’t join the many local pools. It sounds so very vain, but…well, I too have gained weight…forty pounds…and the throught of appearing in public in a bathing suit.rrenders me mute. I know it would help . I just can’t face it yet. I was just put on meloxicam and arava for ra…which I didn’t know I had. Meds make me nauseous but so far nothing I can’t handle. I am going on and on here…I am so sorry. I wish I hadssomething positive to tell you…if you are able to do water therapy, do so. I know you will benefit from it. tryto stay positive.
Hi Linda, I can so relate...I, too have gained weight since my diagnosis and I know it's from inactivity. I used to be so active. But not being able to be outside in the sun, and trying to get enough sleep so I can keep the lupus at bay, has put a crimp in my style. I used to be SO active...outside. My doctor has also recommended the pool, but I am so embarrassed about my weight now. I would only go if I could go in fully dressed...lol. I have made a commitment this summer to try to do something about it. I am slowly adding small exercises into my day. I haven't seen much difference yet, but I am hoping. I can say that I actually do feel better after I do exercises, so maybe it does work (like Ann says above). I'm also trying to watch what I eat, but that's hard. I have spent the last several years making myself feel better by "treating" myself with food. But now I only feel worse. Good luck and if you get any ideas, pass them on! :-) Allison
Linda Bull said:
Good morning friends, I feel like this is the one place I can bare my soul without.being judged. The water therapy has been recommended by my rheumy but I am too embarrassed to tell her why I won't join the many local pools. It sounds so very vain, but....well, I too have gained weight...forty pounds..and the throught of appearing in public in a bathing suit.rrenders me mute. I know it would help . I just can't face it yet. I was just put on meloxicam and arava for ra....which I didn't know I had. Meds make me nauseous but so far nothing I can't handle. I am going on and on here...I am so sorry. I wish I hadssomething positive to tell you..if you are able to do water therapy, do so. I know you will benefit from it. tryto stay positive.
I am sorry to hear what you are going through, i felt the same way when i was diagnosed 10 years ago.I was diagnosed at 16 and honestly it’s going to be a complicated road . Surrrond yourself with positive people, trust your rhuemy and in the medication read alot about lupus . Wake up every morning looking at the big picture we are survivers not victims. The fatigue and weight issue will go away well not %100 but it will become a thing in the background . Just keep a positive mind . Lupus tends to bring on depression so think about seeking a pschycologist ts an excellent way to vent.
Hi Gals, you are right on with your comments. But I will admit I too am heavier, 25 lbs but losing. Eating healthily is a must!! read the literature: dark berries. Buy them in bulk, put on cookie sheet in freezer til frozen, then put in z lock bags. Take out for snack, add to Greek yogurt (has more protein/more filling). Stay away from Salt…read labels. The American Heart Assoc dropping daily rec sodium to 1500mg DAILY from 2000mg. And getting into the pool, GREAT advice from others. Now I just have to have Hubby vacuum ours. Good luck n Keep the Faith!!
I completely understand the refusal to be seen in a bathing suit! I also have experienced a 40 pound weight gain and I just wish I was rich and had my own pool, lol. So here's what I'm trying to do with some limited success. I volunteer at the local pound and take 1 dog for a walk that is somewhere between 1/8 and 1/4 of a mile. Some days more, some days less. At least its activity. There is a fine line between using the muscles and joints and overusing them! I'm still trying to figure out what it is.
I cook meals for my family (when I can), but I sit down while preparing them. Same with laundry.
I've been on plaquenil and prednisone since last October and while I can say that the intense muscle and joint pain is controlled, the exhaustion and brain fog is not. The exhaustion comes and goes (mostly comes, lol) so on days when I feel relatively energetic I go and do things - but - inevitably I hit The Wall and can do no more. Its a fight every day to resist the urge to just lay in bed which would be so much easier.
I think about the spoons and have a question...how do you know how many spoons to start with?
I think the most important thing is to listen to your body, fight to do some kind of activity, but give yourself permission (without judgement) to listen to the exhaustion and just rest.
I don’t not go in the pool because I’m fat. I’ve gained close to 100 pounds. There were plenty of over weight people in there with me! Plus one young guy told me that most people respect overweight people for trying to loose weight by working out. Just food for thought. I’m more worried about my health than what others think anyway. Sure, do I wish I was thinner? Heck yeah! But I’m not. I walk a lot for exercise and have lost some weight but not a whole lot because I’m still on Prednisone. But, I feel much better doing it anyway. Plus it’s best to have some weight bearing exercise in your daily grind to fight off osteoporosis! I hope you find done encouragement and get your beautiful self out there and be well! Hugs!
It sounds like such a great place for therapy Ann. Guess I need to search for a place like that here.
We all have to get over ourselves, I guess. I don't want to put a suit on either, they do have board shorts and long pants to swim in. The Land's End catalog has these and the shirts I wear for sun protection.
Ann, thanks that is a great site for suits! You are really making me want to get into a pool! See how inspiring you are!
We are all glad that you have experienced so many things and can give us all tips on the best way to do whatever.
I am having a lot of pain myself lately, I really think summer is hard on me. I will probably say that in the winter too!! I will be 66 in a month so I am right behind you. Hopefully you will be back in your pool again soon and feel better.
Thanks Ann, I wish the same. for you.
I’m sorry I can’t offer advice on loosing weight I have been loosing it since my diagnosis and am trying to gain it. But regardless just want you to know that we are here for you if not with advice with support 
I know that with this disease it can either make you gain weight or loose it and unfortunately either way it’s not healthy nor good ;/ all we can do is deal with it as best you can it is depressing to see yourself that I’m sure we all have in common I just pray to god everyday that we all get better and stay as healthy as we can for as long as we can
Hang in there Angie G! I am so thankful that all of these people here are so caring and helpful.