Losing weight with an autoimmune disease

Has anyone else gone through losing weight with diet/exercise while dealing with an autoimmune condition such as RA/MCTD/SLE/PA? What have your experiences been?

I have been dealing with mild symptoms on and off for years and have had an increase joint swelling/pain and fatigue with calorie restricting and an uptick in exercise.

Replies

  • Xellercin
    Xellercin Posts: 878 Member
    Yep, but it just means that I have to depend on diet more for weight loss because my exercise is so limited.

    I really avoid rapid weight loss, I've typically lost at a rate of about 2lbs/mo, but I was able to do so consistently.
  • EliseTK1
    EliseTK1 Posts: 407 Member
    Xellercin wrote: »
    Yep, but it just means that I have to depend on diet more for weight loss because my exercise is so limited.

    I really avoid rapid weight loss, I've typically lost at a rate of about 2lbs/mo, but I was able to do so consistently.

    That sounds reasonable. I have been losing 1-1.5 lbs a week. I’m thinking I may push through it for a few months longer to get closer to a healthy weight range, then slow down to a more sustainable pace. I’ve added more yoga to my routine as well which seems to really help.

    Is it joint pain that’s limiting for you, fatigue, or both?
  • luyenvanthuy2804
    luyenvanthuy2804 Posts: 6 Member
    Yep, depending on diet more for weight loss as my exercise is limited.
  • PSS33884
    PSS33884 Posts: 70 Member
    Just ending a flare with Crohn's. Unfortunately, when in a flare I have to eat higher carb diet. In a week I've gain almost 5lbs. So glad to be back on the better eating path for me. I'm usually eating to keep my blood sugars controlled.
  • Vune
    Vune Posts: 664 Member
    EliseTK1 wrote: »
    Has anyone else gone through losing weight with diet/exercise while dealing with an autoimmune condition such as RA/MCTD/SLE/PA? What have your experiences been?

    I have been dealing with mild symptoms on and off for years and have had an increase joint swelling/pain and fatigue with calorie restricting and an uptick in exercise.
    EliseTK1 wrote: »
    Xellercin wrote: »
    Yep, but it just means that I have to depend on diet more for weight loss because my exercise is so limited.

    I really avoid rapid weight loss, I've typically lost at a rate of about 2lbs/mo, but I was able to do so consistently.

    That sounds reasonable. I have been losing 1-1.5 lbs a week. I’m thinking I may push through it for a few months longer to get closer to a healthy weight range, then slow down to a more sustainable pace. I’ve added more yoga to my routine as well which seems to really help.

    Is it joint pain that’s limiting for you, fatigue, or both?

    Hi. I've been chronically ill for over half my life, so this question is meant to be nothing but helpful. If you have had increased symptoms with greater calorie restriction and exercise, why are you willing to enter a rabbit hole of pain to get there faster when you'll need to find something you can manage for the rest of your life? Slow and steady means less recovery from self-inflicted good intentions. Slow and steady, from my perspective, means better progress in the long run.
  • 88AViva
    88AViva Posts: 475 Member
    I am going with slow and steady weight loss and building a good relationship with food while learning about my body and what makes it feel good or bad. I loosely stick to an AIP diet everyday and had a food sensitivity test to know what causes my flares and I avoid those.

    In my experience when I make movement a priority and I feel good that day I'm less likely to experience problems or pain the next day. The progress doesn't have to be fast, it just has to be sustainable.
    With SLE I feel that my mental state very much affects my health. On flare days I take it easy on myself. If more carbs make me feel better, I'm okay with that as long as I don't go overboard. But we all have bad days and I try to still stay positive so I don't spiral downwards.

    But otherwise I just do the usual, stay within my calorie limit and make sure to include some movement everyday. If I'm not feeling too strong or fatigued and everything hurts I just go for a 30 minute walk.
  • EliseTK1
    EliseTK1 Posts: 407 Member
    Vune wrote: »
    EliseTK1 wrote: »
    Has anyone else gone through losing weight with diet/exercise while dealing with an autoimmune condition such as RA/MCTD/SLE/PA? What have your experiences been?

    I have been dealing with mild symptoms on and off for years and have had an increase joint swelling/pain and fatigue with calorie restricting and an uptick in exercise.
    EliseTK1 wrote: »
    Xellercin wrote: »
    Yep, but it just means that I have to depend on diet more for weight loss because my exercise is so limited.

    I really avoid rapid weight loss, I've typically lost at a rate of about 2lbs/mo, but I was able to do so consistently.

    That sounds reasonable. I have been losing 1-1.5 lbs a week. I’m thinking I may push through it for a few months longer to get closer to a healthy weight range, then slow down to a more sustainable pace. I’ve added more yoga to my routine as well which seems to really help.

    Is it joint pain that’s limiting for you, fatigue, or both?

    Hi. I've been chronically ill for over half my life, so this question is meant to be nothing but helpful. If you have had increased symptoms with greater calorie restriction and exercise, why are you willing to enter a rabbit hole of pain to get there faster when you'll need to find something you can manage for the rest of your life? Slow and steady means less recovery from self-inflicted good intentions. Slow and steady, from my perspective, means better progress in the long run.

    I posed the original question back in February, about six weeks after I started this journey. I asked myself the same question of if it was worth more pain quite a few times. Soon after though, it was as if my body adjusted to the changes, and many of my issues started getting better. The flare let up. Since then I’ve been steadily, comfortably losing 1-1.25 lbs per week, with the exception of a week-long cruise that caused much more discomfort and pain thanks to eating and drinking way too much. It has felt really good to get back to my healthier habits the last week and a half.
    88AViva wrote: »
    I am going with slow and steady weight loss and building a good relationship with food while learning about my body and what makes it feel good or bad. I loosely stick to an AIP diet everyday and had a food sensitivity test to know what causes my flares and I avoid those.

    In my experience when I make movement a priority and I feel good that day I'm less likely to experience problems or pain the next day. The progress doesn't have to be fast, it just has to be sustainable.
    With SLE I feel that my mental state very much affects my health. On flare days I take it easy on myself. If more carbs make me feel better, I'm okay with that as long as I don't go overboard. But we all have bad days and I try to still stay positive so I don't spiral downwards.

    But otherwise I just do the usual, stay within my calorie limit and make sure to include some movement everyday. If I'm not feeling too strong or fatigued and everything hurts I just go for a 30 minute walk.

    I completely agree. For the most part I stay within my limit and do some kind of activity every day. It’s what makes me feel best, and now that I’ve adjusted, it’s easy to keep it up. Walks are my go-to when I’m having a sore/tired day as well, and they nearly always make me feel good.

    I am not so hung up on the speed of weight loss at this point. Progress is progress, even if it’s slow. I know I’ll get there by the end of this year. It just might be December instead of September. In the first couple months I was a little balls-to-the-walls about it because I had gotten uncomfortably big, and none of my clothes fit. Now I’m at a point where I generally feel good, so the weight loss is less urgent.

    I still haven’t gotten a diagnosis, but we’re getting closer. The only pain I have now is in my ankles, and it’s mostly when I’m at rest or right when I get up, not while I’m exercising. (Right shoulder is the exception, but that’s a totally separate problem that will require surgery.)

    I have so much respect for everyone who has much more challenging autoimmune issues and still manages to prioritize healthy eating and exercise.
  • KL1887
    KL1887 Posts: 68 Member
    I have an autoimmune disease and am immunosuppressed in order to control it. I’m medically exempt from exercising because I have a separate condition whereby I’m severely allergic to exercise. I control my weight through diet alone. It takes longer and it can be more mentally draining because it feels like your life literally revolves around weighing and counting in the beginning however it’s doable with perseverance. In instances where my condition flares or I fall ill as a result of having a lowered immune system I focus on the smallest possible thing that is achievable for me, it could be simply ensuring I log in daily to maintain my streak, or it could be ensuring I actually physically get up and leave my bedroom to go to a different part of the house. When you’re ill just adapt your goal posts until you can move them back to where they were before.
  • cyndit1
    cyndit1 Posts: 167 Member
    I have RA and SLE and also am a distance runner (marathons and half marathons). I was diagnosed with SLE before I was active and RA after I started running and can not imagine my life without activity. I am very blessed with my medical issues being decently controlled with medications (plaquenil, methotrexate, cimzia) for the most part with minor flares now and then. It has taken a long time to find the right mix and blend of training vs rest vs diet. I find now that I give myself the ability to rest extra when I need it and eat very healthy and staying on the lighter side has helped with my joints for sure. I also now drink zero alcohol which also was a game changer for pain and weight loss and therefore ability to work out consistently.
  • EliseTK1
    EliseTK1 Posts: 407 Member
    cyndit1 wrote: »
    I have RA and SLE and also am a distance runner (marathons and half marathons). I was diagnosed with SLE before I was active and RA after I started running and can not imagine my life without activity. I am very blessed with my medical issues being decently controlled with medications (plaquenil, methotrexate, cimzia) for the most part with minor flares now and then. It has taken a long time to find the right mix and blend of training vs rest vs diet. I find now that I give myself the ability to rest extra when I need it and eat very healthy and staying on the lighter side has helped with my joints for sure. I also now drink zero alcohol which also was a game changer for pain and weight loss and therefore ability to work out consistently.

    That is awesome, glad you are able to manage it that way! I think the no alcohol thing may end up becoming a reality for me as well at some point. I have cut back to only having one or two drinks a week, but I’m not quite ready to give it up completely even though based on symptoms I probably should.
  • Fayeworth
    Fayeworth Posts: 60 Member
    edited May 19
    I have Crohn’s and I’m immunosuppressed. I’ve lost 4.5 stone since September with calorie counting and exercise. My disease is well managed at the moment and I’m feeling tiptop. I run 3 times a week and on my “rest days” I do something like circuits, spinning or legs, bums and tums. I would say I’m very active and my tiredness has definitely decreased over time, stick at it and make small changes. Have a look at “Get Fit with Rick” on YouTube. He’s awesome and provides free, low impact step routines to all sorts of music. You don’t have to move your body in massively strenuous ways to lose weight, any movement is fantastic. Be kind to yourself, autoimmune sucks xx
  • Xellercin
    Xellercin Posts: 878 Member
    EliseTK1 wrote: »
    Xellercin wrote: »
    Yep, but it just means that I have to depend on diet more for weight loss because my exercise is so limited.

    I really avoid rapid weight loss, I've typically lost at a rate of about 2lbs/mo, but I was able to do so consistently.

    That sounds reasonable. I have been losing 1-1.5 lbs a week. I’m thinking I may push through it for a few months longer to get closer to a healthy weight range, then slow down to a more sustainable pace. I’ve added more yoga to my routine as well which seems to really help.

    Is it joint pain that’s limiting for you, fatigue, or both?

    Sorry for the delayed response, I go through phases posting here.

    I have joint pain, fatigue, severe injury, mobility problems, etc.

    I don't really pay much attention to weight loss pace because it varies so much over time. When I was losing, I lost at an *average* pace of 2lbs/mo, but I only know that because of A LOT of data.

    At the time it looked like I was losing quickly for a month or so, and then having a plateau for a month or so, and the losing more rapidly again.

    That's all BS, it was actually a totally predictable, steady pace for a very long time as long as I stayed on track with my eating.

    Do what's sustainable and healthy for you, and then let time take care of the rest.
  • misskya1108
    misskya1108 Posts: 2 Member
    I have Addison’s Disease and it makes losing weight difficult where I take steroids daily and have joint pain and I also have a binge eating disorder. It’s very very hard.