Positive Thoughts

General
1

Hi Everyone;

There are a lot of us discouraged about weight gain and how our body has changed with Lupus.

I think we should take this energy, and work on get Fit mentally and physically

What do you think?

WE can do this. Its going to take hard work and determination! I have only recently come to the realization that I have Lupus, Lupus will not control me.

I have been down because I have gained this weight, and it sits in my thoughts everyday, but I am determined to be fit again, it may take time but I will do this.

I made an unrealistic goal of doing a Crossfit Competition but the risk of injuring myself was too great.

So I am going to do a triathlon in 2-3 years. I love cycling and swimming, and I have met a running trainer to teach me how to run. I have signed up for Yoga to assist in this goal

We should start a discussion/support for getting fit and losing weight. Getting fit physically and mentally.

We can do this!!!! We are going to have our ups and downs but we have a huge Lupus family to lean on.

Charmaine xx

2

Hi Charmaine,i wish you all the luck in the world.

The losing weight great idea,we can encourage each other when temptation is at its most,mines chocolate!! and if you are on steriods,which i was my appetite was hugemongrass,so theres a battle on its own,but with determination it can be done,im on The Caveman diet it works for me,as i like carbs and protein,you just dont mix,takes a while to get the hang of,but you soon get used,and over 3yrs ive lost 3 stone,just 2 to go!!.

Ive tried exercise,and as the gym used to be my second home i was very fit!!but now ive tried swimming which i love starting very gentle was to much for me,i was ok when i was in the water,but when i got home i was in a flare for 3 days,so i thought ok,my body is out of condition i didnt give up,and again went at a very steady pace,but the flare came with a vengance.

So i put my thinking cap on and i bought a little machine which helps with ciculation,and i now use dumb bells when im watching TV,to help tighten my arms,when the fever is on the edge of starting i stop,and wait a few hours and do a few more.

I walk as much as i can in the home,i have to use a wheelchair for outdoors,i cannott get away from that,but i am very conscious,of my body and what it needs and what it doesnt.

I do hope it helps as many as possible but i wont be able to jion sorry.

All the best,Kathy x

3

Congrats on recognizing what you need to do, including an achievable goal :slight_smile: That’s the toughest part, right? Knowing The limit but pressing on anyway…

I have a tip for you on the triathlon if the running is a problem (running is terrible on my knees, back, feet… Always has been, even as a super-fit teen! I was a swimmer :slight_smile: ) What you can do if it’s becoming a problem is a triathlon relay TEAM, which is an even better way to feel supported and encouraged. It sounds like you already have 2 areas you can rock (I dislike cycling almost as much as running, thighs burn too much and hips tighten up! I’d be a swimmer only for a relay…) and maybe you have one of those obsessive-runner friends who loves distance races but is intimidated by biking and especially swimming. Or, if running works for you, great! And if running is too much (it can be extra hard on your joints if weight is already a problem :frowning: ) but you really want to complete the whole thing, walk that last few miles to the finish!

My mom has fibro and chronic structural pain issues (suspected now for RA also, and has a better case to push for full rheum evaluation now that her daughter has lupus!) and she did the swim-bike-walk plan in an all-women’s mini-tri… She was almost a nationally competititve swimmer in high school, so even in disability she’s still pretty comfortable and fast in the water, does alright on a bike if her back’s in the right position, and really can’t run at all. She and her whole family (I was 9) were so proud of her swimming success (she was first in her age group for the swim!) as well as her taking the rest at her own pace to finish. More often she did just open-water swims, with longer distances and no crazy gear changes or running to worry about. The most exciting, and challenging, was the “Escape From Alcatraz” into San Francisco (there were safety boats to help anyone who was exhausted and to scare sharks away!)

Good luck taking on the challenges that motivate you, and keep going even if you have to get creative to work within your limits :slight_smile:

4

Hi Charmaine,

It is great that you have set a goal for yourself. I have no doubt that you can accomplish it with persistence and support. One of the best ways to lose weight is definitely to find a sport or activity that you love, so you have got that down. You may want to think about increasing the activities you already love in order to increase your strength and endurance without getting bored or frustrated. Adding in the running will be much easier after that.

Also, as far as the weight gain- a lot of why people in our condition gain weight is of course that our mobility may be decreased and appetite increased by meds. But there is also the fact that the body actually produces fat cells to store the toxins and medicine residue that is found in the body to keep it away from vital organs and out of the blood stream- especially if you have been on meds for a long time. Having a regular regimen of detoxifying the body can do a lot to release that reside and with it unwanted weight.

Good luck!

5

great post

6

I’ve gained weight like i’ve never gained before. I just couldn’t stop the craving to keep eating. I’ve been exercising though i’m not pushing myself too much, but i think it’s not enough. I have to cut down on carbs. It’s so frustrating. I am determined to be fit once again.

7



Mia said:

My doc told me not to exercise because it causes inflammation and causes flare ups so I walk and watch what I eat ,,,, good luck to you and in reaching your goals
8

Hi Mia!

I’m concerned about your doctor saying no exercise… Exercise is important for everyone, even more so for someone with a chronic health confldition (especially when ours increases risk of cardiovascular disease!!!) Mild to moderate regular exercise, to the extent your body can handle it (a little bit of pushing yourself, but not so much that you crash afterwards or have increased inflammation), will actually help your joints and overall pain levels. The trick is to choose a type and intensity of exercise your body can handle!

Running and weightlifting probably aren’t a good bet. But swimming is excellent for many reasons: low-impact, not a problem for overweight people to do safely and successfully, helps increase joint mobility without causing strain, and total-body aerobic exercise. Finding a pool with warmer water can be a nice way to make it more comfortable and even better for relaxation. Home exercises with therapy bands can be great also for joint stability, mobility, and gentle strengthening, and a physical therapist can teach and monitor you for the specific gains you want to make. However, the steady heart-rate raising aerobic exercise is the only way to get cardiovascular benefits! Weight-bearing is important for preventing osteoporosis, but walking should take care of this for you! My arthritic, overweight grandmother also had a lot of success (and fun!) with Curves for Women, a gym and exercise classes focused on women and also special gentleness for anyone disabled. It costs money, though. Swimming laps does also, but most public pools have an extremely cheap disabled rate (like 25 cents per lap swim), and most likely don’t make you jump through all the hoops of disability financial benefits… Telling them you have lupus should be plenty.

If your doctor disagrees with anything I just said, they’re an ignorant and unhelpful doctor! Staying healthy with lupus is much more than just eliminating anything that might cause any inflammation. Maybe that’s too harsh, sometimes doctors get so focused on medical diagnoses within their own specialty area of expertise and forget that you are a whole person with many wellness needs and challenges! All of the normal health concerns for women not only apply, but are even more at risk for lupies!

Good luck, and let me know if you have more specific concerns about your particular body… I’m not officially a personal trainer or anything, but I did teach/coach swimming for 5 years and circus acrobatics for 2 years :slight_smile: I also took college courses on both anatomy of movement (for dancers, but applies to any type of physical activity from normal function of muscles/joints to injury risk and prevention) and physical activity epidemiology (including health consequences of NOT being active… Most leading causes of death in America come directly from this combined with eating/smoking habits and obesity in general due to any cause!) You have full rights to challenge your doc on this, or just ignore him/her and do it your own way. I’d say find a new doc who will work with you more reasonably and compassionately, if that’s a possibility! Take care!



Mia said:
My doc told me not to exercise because it causes inflammation and causes flare ups so I walk and watch what I eat ,,,, good luck to you and in reaching your goals
9

I absolutely love the responses. I love my lupus family :-)

Here is thing. It wasn't till last week when I awakened from my chaotic life and realized, Wow I have Lupus. I burst into tears. I dont like how my body has changed and that I have to be aware of what I do in my daily activities.

Everyday In my profession as an ER nurse I teach, and care for people with varying illnesses.

I know this is going to be a long and intense handwork to achieve this goal. I see a naturopath, massage therapist, nutritionist and my rheumatologist. With my exercise, I eat clean. I have eliminated gluten, dairy, soy, sugars and alcohol from my diet. All of these creates inflammation in the body. Individuals with auto-immune diseases, have inflammatory responses to gluten, dairy, sugar and alcohol. I have been doing a lot of reading and learning from varying health professionals.

Trust me I am going to have good days and bad days. But the strength is knowing having the support from everyone here.

I still find after a bad shift in the ER, walking out of the hospital my joints ache and feel like I ran a marathon.

Hope everyone had a great weekend.

Charmaine

10

I love your positive attitude and energy Charmaine! It makes me feel full of spark even though my body is tired.....I'm with you in spirit and look forward to hearing more about the activities in this thread!

Big hugs and much love to all,

Lori

11

Hey that us awesome! Some exercise is extremely important. For those who can’t because of extreme immobility should try pool aerobics. Water exercise is highly recommended by docs. Walking is great, I have a mini trampoline in my basement n jog while watching tv, no strength training but gettin movement still, thank God! Good luck!

12

Glad you feel it, Charmaine! I feel the same about this group. And the realizations… I was so relieved to finally have my numerous long-time mystery issues given a name, but 3 months into it it’s feeling heavier on me :frowning:



On careers… I was lucky (though it might sound unlucky, it’s a total saving grace!) that I got diagnosed the same summer I was trying to apply to medical school. It’s disappointing to abandon those plans for the sake of my delicate and frustrating health, especially when I was lining up my ducks to get into some top-10 medical schools! And feel so strongly that there is a shortage of good, well-rounded, caring doctors who are truly in touch with their patients’ needs and experiences (see my last post on this!) However, lucky because it’s granted me the opportunity to choose a career path that will fit my own needs while I serve others. I’m applying for a Master’s in Speech-Language Pathology now, since it also works directly with patients in need, has a flexible schedule (unmatched by nearly any other path in the medical/health services field!) and draws on my interests in language and neuroscience :slight_smile:



I love to share my career problem-solving mentality these days with fellow lupies… As a nurse, maybe you could look into a slower-paced and less psychologically draining aspect of nursing… Say in an educational role or in outpatient clinics, even research nursing. A former manager of mine in a clinical research clinic had just left her hectic LA-area ER job in favor of a 9-5 with friendly, collaborative people rather than harried docs and disastrous patients! It was a big pay cut, but really helpful to her quality of life and personal relationships (family and her now-fiancé!) She was just 27 and quite healthy when she switched, but really valued the ability to stay well and energetic for her own life. She did a triathlon too while I was working with her, in part to lose weight from the stress-induced weight gain and unhealthy diet of an overworked nurse. It might be a good time to go back for your BSN if you don’t already have it, and many hospitals will assist with tuition for furthering your education if you promise them work-years after completing it (the hospital where I worked did!)



Good luck getting your life on track how you want it… That’s the BENEFIT of having lupus, that you really find and prioritize what’s really important to you, and learn to forgive yourself for not being EVERYthing to EVERYone all the time. Appreciating yourself and what you can bring to others in your best health is enough :slight_smile: One of my favorite ways to achieve this for now while I wait on my career staring is to share knowledge and advocacy with all of you! <3

13

Mia,

I agree with Brynn.

I am not sure why your doctor told you not to exercise. This is the worst thing that you can do with this illness. With joints being affected with inflammation, stiffness and pain. The best thing is movement, with movement creates warmth within your joints that loosens it up, allowing you to move better and decrease pain. You need exercise as Brynn said our risks of heart disease has increased. There are other co-morbities for example, diabetes, risk of stroke, resulting from diet and lack of exercise.

Yoga is great and low impact, and will strengthen your Core muscles.

We have to rely on our varying knowledge bases to help each other

Charmaine

Brynn said:

Hi Mia!

I'm concerned about your doctor saying no exercise... Exercise is important for everyone, even more so for someone with a chronic health confldition (especially when ours increases risk of cardiovascular disease!!!) Mild to moderate regular exercise, to the extent your body can handle it (a little bit of pushing yourself, but not so much that you crash afterwards or have increased inflammation), will actually help your joints and overall pain levels. The trick is to choose a type and intensity of exercise your body can handle!

Running and weightlifting probably aren't a good bet. But swimming is excellent for many reasons: low-impact, not a problem for overweight people to do safely and successfully, helps increase joint mobility without causing strain, and total-body aerobic exercise. Finding a pool with warmer water can be a nice way to make it more comfortable and even better for relaxation. Home exercises with therapy bands can be great also for joint stability, mobility, and gentle strengthening, and a physical therapist can teach and monitor you for the specific gains you want to make. However, the steady heart-rate raising aerobic exercise is the only way to get cardiovascular benefits! Weight-bearing is important for preventing osteoporosis, but walking should take care of this for you! My arthritic, overweight grandmother also had a lot of success (and fun!) with Curves for Women, a gym and exercise classes focused on women and also special gentleness for anyone disabled. It costs money, though. Swimming laps does also, but most public pools have an extremely cheap disabled rate (like 25 cents per lap swim), and most likely don't make you jump through all the hoops of disability financial benefits... Telling them you have lupus should be plenty.

If your doctor disagrees with anything I just said, they're an ignorant and unhelpful doctor! Staying healthy with lupus is much more than just eliminating anything that might cause any inflammation. Maybe that's too harsh, sometimes doctors get so focused on medical diagnoses within their own specialty area of expertise and forget that you are a whole person with many wellness needs and challenges! All of the normal health concerns for women not only apply, but are even more at risk for lupies!

Good luck, and let me know if you have more specific concerns about your particular body... I'm not officially a personal trainer or anything, but I did teach/coach swimming for 5 years and circus acrobatics for 2 years :) I also took college courses on both anatomy of movement (for dancers, but applies to any type of physical activity from normal function of muscles/joints to injury risk and prevention) and physical activity epidemiology (including health consequences of NOT being active... Most leading causes of death in America come directly from this combined with eating/smoking habits and obesity in general due to any cause!) You have full rights to challenge your doc on this, or just ignore him/her and do it your own way. I'd say find a new doc who will work with you more reasonably and compassionately, if that's a possibility! Take care!



Mia said:
My doc told me not to exercise because it causes inflammation and causes flare ups so I walk and watch what I eat ,,,, good luck to you and in reaching your goals
14

Hi Brynn

That is an awesome career path. I believe things happen for a reason. I have my BSN and I am a true ER nurse. This profession allows me 12hrs to escape everything else in my life. Its fast paced, unpredictable and critical thinking.

Yes it is tiring after a shift, but if I went into a less hectic job I would be more stressed, I know that sounds crazy.

This group has given me so much support and insight into this disease. I nursed my Dad through this disease until he passed away, he ended up with severe Pulmonary Hypertension and Cardiomyopathy. He was even offered heart/lung transplant. I had a long discussion with my dad that this would may not improve his quality of life, as he will remain to have Lupus. 2 years after my brother was diagnosed with a rare form of lupus, but when he called telling me his symptoms I knew that he too had Lupus. He keeps himself active, and when he is fatigued takes that day to rest. He lost weight and his hair with Lupus and plaquenil. But he is in the best shape ever with exercise everyday and clean eating.

Then me I was very active, going through an awful divorce I chalked my symptoms of pain and fatigue to being stress related. I remember I was on the soccer field playing a late night game thinking I must have pulled a muscle I was having a hard time kicking the ball.

Lupus is a hard diagnosis, especially when people look at us and cant see that we are hurting on the inside when we look fine on the outside.

I remember working one shift in the ER and my subtle butterfly rash was in full form, my nose red and cheeks pink. One of my colleagues in front of everyone said to me are you a drinker, you have a very red nose. I was totally taken a back of her ignorance of her own comment.

I think each of us, has to go at our own pace, but the one thing that remains constant is the support for one another. We have a common place where we can be safe to chat about our illness and be met with great understanding.

I am going to strive to attain my goal. I may have set backs but I am up for the challenge.

15

Walking 20 min every day & sticking to a 1300 calorie diet is about all I can do. I've lost 10 lbs in a mo. I'm hoping I can build up stamina to start a more structured work out. Swimming in a heated pool helps with the joint pain

16

Thats awesome OC GAL! Keep up the good work.

Charmaine

17

Hello All,

I am new to this group and this is a very sensitive subject for me so I thought I'd chime in. I've always been a thin person my whole life. I mean I used to get teased for being skinny. So when this disease stuck, I found myself on prednisone and struggling with weight gain. Granted, the most I gained at one time was like 25 lbs. So my max was like 170 lbs. When it got to that point, I couldn't take it anymore. I was getting married soon and decided I would do whatever I had to do to lose weight. I know that doesn't seem like a lot, but everyone's perception is their own reality. I basically starved myself and walked on the treadmill twice a day. I had to walk because after having a flare with my lungs, I didn't have the lung capacity to run. My body image affected me mentally in such a negative way. I felt like I was going through this terrible period alone. Everyone commented on how full my face looked or how my body changed. I got to the point where I just wanted to go to work and stay in the house for the rest of the day.

I feel a little healthier mentally these days. I am trying to eat healthier in general and I still walk on the treadmill when I can. But I understand everyone's pain when it comes to this subject. I wish you all the luck in the world with your goals. All the lupies I know are such strong individuals. It's like you have to be. It turns you into this new person with strength and determination. I know you can do this Charmaine!! Sending lupie hugs to you and everyone.

Terrace

18

I'm not on any meds yet, because I've just found a doctor who is taking my symptoms seriously.

But one thing I've found is when it comes to my weight, I have to keep track of my calories religiously. I've also found that regular exercise is very difficult for a couple of reason. 1. I don't like it, and 2. I get fatigued very easily. So I've learned to keep active doing things daily...walking our dog, doing the laundry, sweeping and mopping the floors, gardening...basically anything that keeps me moving and gets things done. At least when I do it that way, I feel as though I've gotten some things done if I become fatigued. With regular exercise, I find myself feeling bad about getting fatigued because there is still a ton of work to get done and I don't have the energy to do it if a flare starts. The only regular exercise I do is lifting weights to tone up my arms while I'm watching tv. I always pay attention to what my body is telling me though. As soon as I notice anything that indicates a flare is starting, I allow myself to rest.

By keeping active this way and keeping track of my calories, I've lost 25 pounds since the beginning of June.

19

thank you for sharing this with us. I too know very well about struggling with body image. I find people in general make remarks about " how I have gained weight" I think to myself thanks for the update on that.

My dearest friends know that this is a struggle for me. When I was in college over 20 years ago, I had an eating disorder that took sometime to overcome.

So this weight gain has weighed heavily on me.

I think our Lupus family have to send each other many positive vibes and hugs.

This online group I should have been on here sooner, it has been such a relief being able to chat with people whom understand.

Hugs

Charmaine

Tee said:

Hello All,

I am new to this group and this is a very sensitive subject for me so I thought I'd chime in. I've always been a thin person my whole life. I mean I used to get teased for being skinny. So when this disease stuck, I found myself on prednisone and struggling with weight gain. Granted, the most I gained at one time was like 25 lbs. So my max was like 170 lbs. When it got to that point, I couldn't take it anymore. I was getting married soon and decided I would do whatever I had to do to lose weight. I know that doesn't seem like a lot, but everyone's perception is their own reality. I basically starved myself and walked on the treadmill twice a day. I had to walk because after having a flare with my lungs, I didn't have the lung capacity to run. My body image affected me mentally in such a negative way. I felt like I was going through this terrible period alone. Everyone commented on how full my face looked or how my body changed. I got to the point where I just wanted to go to work and stay in the house for the rest of the day.

I feel a little healthier mentally these days. I am trying to eat healthier in general and I still walk on the treadmill when I can. But I understand everyone's pain when it comes to this subject. I wish you all the luck in the world with your goals. All the lupies I know are such strong individuals. It's like you have to be. It turns you into this new person with strength and determination. I know you can do this Charmaine!! Sending lupie hugs to you and everyone.

Terrace

20

Hi there everybody !!!! hope that everything is going well for everyone , SMILE !!! It's been awhile since i've really responsed to anything , but least to say am doing okay - so far !!! Moving right along this seems like it will be a good discussion (topic) , because we all in some form or fashion have problems that are given to us from this LUPUS stuff and YES it is not FAIR !!! I'vedealt with lossing weight / gaining then of course lossing it , but that has not stop me from being the person who i know i am . So everyone hang in there and keep your spirits up and remember that LUPUS is just something that WE have !!!!.... Beverly L.