Autoimmune disorder?
mjolnir81
Posts: 27 Member
I just wondered if there were any other people out there successfully losing weight with an autoimmune disorder? I was diagnosed with Sjogren's Syndrome last year and I find it really hard to stick to my calorie goals and exercise.
The main symptoms of the disease i can deal with, it's the fatigue and lack of energy that is a killer for me. I start the day off ok most days but I work full time and by the time I am home from work I'm exhausted and struggle to cook a decent meal. I try making a few meals at the weekend but struggle for ideas of things that can be frozen and lunch ideas. When I have a flare just getting out of bed is a struggle so cooking goes out of the window.
My husband does lots of cleaning and looking after the kids but is not a great cook, he always looks to me for the meal planning and cooking.
I guess I am just looking for hints and tips that people with similar diseases might be able to share to help me stay on plan. And any success stories to show that it IS possible to lose the weight and lead a fairly active life with this kind of disease. Although I have always been overweight I used to be fairly active and have run a number of 10k's and a half marathon and used to enjoy lifting weights too......I so want to get back in to that but the fatigue is just wiping me out right now. The only meds I have at the moment are vitamin D load once a month, folic acid daily (Vid D and folate levels are very low) and monthly steroid shots to try and help with the pain and fatigue (which I do think help with the fatigue a bit). Would love to hear from some people in a similar boat! Thanks
The main symptoms of the disease i can deal with, it's the fatigue and lack of energy that is a killer for me. I start the day off ok most days but I work full time and by the time I am home from work I'm exhausted and struggle to cook a decent meal. I try making a few meals at the weekend but struggle for ideas of things that can be frozen and lunch ideas. When I have a flare just getting out of bed is a struggle so cooking goes out of the window.
My husband does lots of cleaning and looking after the kids but is not a great cook, he always looks to me for the meal planning and cooking.
I guess I am just looking for hints and tips that people with similar diseases might be able to share to help me stay on plan. And any success stories to show that it IS possible to lose the weight and lead a fairly active life with this kind of disease. Although I have always been overweight I used to be fairly active and have run a number of 10k's and a half marathon and used to enjoy lifting weights too......I so want to get back in to that but the fatigue is just wiping me out right now. The only meds I have at the moment are vitamin D load once a month, folic acid daily (Vid D and folate levels are very low) and monthly steroid shots to try and help with the pain and fatigue (which I do think help with the fatigue a bit). Would love to hear from some people in a similar boat! Thanks
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Replies
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Can you try prepping your meals? I take sundays to make all my meals for the week, portion out meats and veggies, bulk cook. Even my kids lunches. It’s given me so much time during the week.1
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Hi there, I too have been diagnosed with Sjogren's, mine is so far thought to be primary. Have they determined if yours is primary or secondary? No other auto-immune issues lurking?
There is a reasonably good sjogren's message board (though I haven't been there in a while), I think its called Sjogren's World. There are also some fairly active facebook groups.
I assume you have done lots of research on the web, but this is one of the better sites I have come across https://www.niams.nih.gov/health-topics/sjogrens-syndrome.
I am sorry I can't help with the fatigue and lack of energy as I don't have these symptoms. I did find though that my symptoms were worse when the sjogren's first presented, so if you haven't had symptoms too long hopefully they will lessen. Have you tried some alterntive therapies, some people have benefited from them http://www.thenaturalpathwithjillclarey.com/ns/DisplayMonograph.asp?StoreID=2C050A45E26F4AA7A26E14B32D040599&DocID=condition-sjogrens
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I have several auto immune disorders along with hyper mobility and arthritis
Slow cookers are fabulous, throw ingredients in for stews/chilli and 8 hours on low later dinners ready
I own an exercise bike on advice on my physio, had to give up running for now.
I park it Infront of the TV and pedal. Currently can only cope the length of ad breaks but building up
I have a protein shake at lunch so can't help with ideas but I often send my daughter with dinner left overs in her food flask for lunch8 -
I have celiac, hashimoto's, ITP, and I suspect another that started arthritis in my early 20s.
I eat ketogenic to address my insulin resistance (which I suspect was caused by a HCLF diet and steroid prescriptions over the years. I found it reduced my appetite so eating less was easier and I lost 40lbs to get to a mid BMI. It also stabilized my energy so i could be more active, had the energy to eat better, and I was not snacking for an energy boost- it made quite a difference for me.
I now eat an almost carnivore diet to help reduce inflammation and pain. When I avoid carbs, I dont need pain medication to sleep or get through my day. The joint damage is there but it hurts so much less. Carbs make me hurt more. Even if it is a placebo effect, eating like a carnivore is making my quality of life a lot better, and has done so for a long long time. Ymmv
Good luck.2 -
I have many. The most bothersome is arthritis. Then chronic hives, etc. Also on steroid. My trick, force of will. Ignore the pain, Or better yet, embrace it. If it is going to hurt no matter what, may as well accept it as part of you, and then it will be in the background. You will still feel it, but it will not longer be phychologically cumbersome.0
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If you are not opposed to eating the same thing repeatedly, large batches of soups, stews, chili are possibly the easiest to pre-prep for the week. Cover, toss in fridge, and all you have to do is scoop and microwave a serving when needed. Same for boiled potatoes - they're being boiled and then removed from the saltwater, so cleaning them first is also pretty much optional. Scoop out into a bowl, quickly run a knife through a bunch of times, and cover and fridge. Topping with greek yogurt instead of just sour cream adds a bunch of protein, making it a rounded enough meal on its own when particularly tired.
Planning stuff for right after work when you can might help somewhat with the physical activity versus fatigue. (It's hard to force myself to leave the house when I'm tired after work..going to do stuff straight from work is a lot easier for me. Stuff doesn't happen if I go home first). (Meal prep'ing helps with this - dinner that can be microwaved and eaten at work).0 -
I’m type 1, hypothyroid, and celiac. Prelogging is key, and equal to weighing everything I eat. When my thyroid is managed appropriately, I lose weight just like anyone else.
It is a myth that having autoimmune issues means you can’t lose weight. When your conditions are managed as to not affect your metabolism — I don’t know enough about Sjogren to know if it does, but keep in mind that even hypothyroid only has a 5-10 percent impact on BMR — losing weight comes down to the choices you make.
If you’re tired and can’t work out, don’t eat as much. If you’re tired and can’t cook, keep quick solutions in your house that fit your calorie goals.
Make the choices that are right for you.2 -
yes, with joint and skin pain.
the great news is you don't have to exercise to lose weight, just to eat at a calorie deficit.
i lost about 55lbs and gained some of it back because i stopped tracking my food. and now i've started losing weight again
i try to food prep on sunday. then, i just have to grab and go in the morning and evenings. i try to make extra for days or weeks where cooking seems an insurmountable goal.2 -
I really struggle with this as well, even having the energy TO prep all at once is too hard, sometimes.
Something I have been trying, and am only partway to having done, is to use the crockpot overnight or during day while gone, or one big pot on the stove, most days. Sometimes, it's a meal all together - like a soup or stew or chili. And sometimes, it's just an ingredient, like green beans, or zucchini, or rice, whatever.
and then I freeze them all in little baggies or tupperware, and when I am hungry, I can just thaw in the microwave, mix together, and eat.
So basically...I'm trying to make myself microwave meals. Like, I will do rice, beans, and zucchini and nuke 'em, all done. Or beef plus some veggies, or chili plus rice - all pre-made, just thawing to eat them. quickly.
Positive - when I have these bags, it's great. It is very fast to put together, and even if it's not 'awesome' food, I can have the calories I need, and it's not exhausting. Life feels SO much easier, seriously.
negative - MAKING the bags. I find it hard to get the food put away - cooking in the crockpot is fine, but I struggle with getting them in the bags afterward, on bad days. And on really bad days, I can't do cooking at all. And sometimes, I have a bad week straight, or so, and use up all the bags I made and then I'm stuck again, wanting food, but not making the freezer foods yet.
I would say, for this to really work, if one had lots and lots of little tupperware that was easy to put food into and straight into the freezer, this might work well. If one stays on it and does it as much as possible, or tries to build up a lot of surplus. But I'm still trying to get there. :-)0 -
CharlieCharlie007 wrote: »...Ignore the pain, Or better yet, embrace it. If it is going to hurt no matter what, may as well accept it as part of you, and then it will be in the background. You will still feel it, but it will not longer be phychologically cumbersome.
But I would also mention that the OP said that fatigue is the real killer in their case, rather than pain. And while sometimes just pushing through can help with that, for many chronic conditions, if you push through the fatigue through sheer force of will, then your body will just mess you up further until you are so debilitated you cannot function at all, force of will or no. I've had to do it before in an emergency, and then I was so hosed that I couldn't even walk more than a few steps at a time for days afterward. Not 'it was really hard to walk' but literally unable to get my body to cooperate and move.
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I just wondered if there were any other people out there successfully losing weight with an autoimmune disorder? I was diagnosed with Sjogren's Syndrome last year and I find it really hard to stick to my calorie goals and exercise.
The main symptoms of the disease i can deal with, it's the fatigue and lack of energy that is a killer for me. I start the day off ok most days but I work full time and by the time I am home from work I'm exhausted and struggle to cook a decent meal. I try making a few meals at the weekend but struggle for ideas of things that can be frozen and lunch ideas. When I have a flare just getting out of bed is a struggle so cooking goes out of the window.
My husband does lots of cleaning and looking after the kids but is not a great cook, he always looks to me for the meal planning and cooking.
I guess I am just looking for hints and tips that people with similar diseases might be able to share to help me stay on plan. And any success stories to show that it IS possible to lose the weight and lead a fairly active life with this kind of disease. Although I have always been overweight I used to be fairly active and have run a number of 10k's and a half marathon and used to enjoy lifting weights too......I so want to get back in to that but the fatigue is just wiping me out right now. The only meds I have at the moment are vitamin D load once a month, folic acid daily (Vid D and folate levels are very low) and monthly steroid shots to try and help with the pain and fatigue (which I do think help with the fatigue a bit). Would love to hear from some people in a similar boat! Thanks
Have your iron levels been tested as well? When I mess up with my anemia treatment I have crippling fatigue. I have to get about 400% of the RDA in food and supplements to stay in Low Normal. The right type of supplement is very important to get my iron AND energy levels up. I get tested regularly and do not recommend anyone start supplementing aggressively without getting tested.
Also, certain foods cause fatigue in me, notoriously foods made from wheat flour. I can have bread made from sprouted grains, like brands like Ezekial/Food for Life, which can be found in the freezer section of all the big supermarkets where I live. I can also have a little regular bread at dinner or later, but never with lunch or breakfast. Keep an eye out for odd food issues that are triggering you - a food journal can help identify these.
I also find it helpful to up protein and reduce carbs slightly.0 -
I have UCTD and my hands are very swollen with this bad weather, I gained 5 pounds and the scale won’t budge, I hope it is only temporary, I was diagnosed last year and before that, I lost 50 pounds and could maintain just fine for years...
Not anymore
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I have sjogrens as well. I was diagnosed in 2000. I also have rheumatoid arthritis. I do take medications for both so it seems to help. The fatigue periods are wicked and it is hard to function once it hits. A slow cooker is a great way to prepare healthy meals that are done when you get home. I even use liners with mine to make cleanup a snap. I find since I started walking it has helped with the fatigue. I am losing weight.1
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Thank you all so much for your help, tips and advise. I really do appreciate it.
I have seen people mention keto and lower carbs, I probably would do better on lower carbs. I tried full on keto a couple of times but it's so restrictive I can't seem to get past the first week. I think maybe if I switch out some carbs and increase my salad and veggies then that will naturally lower my carbs and hopefully help with lowering the inflamation.
It sounds like meal prep on a weekend using a slow cooker / one large pan type meals is the way to go. I eat a lot of similar foods weekly anyway so I guess this shouldn't be a problem really. We are having a new big fridge freezer delivered at the weekend which is huge compared to the last one so I will have lots of space to freeze things. I will stock up on freezer bags and tupperware and come up with some batch cooking ideas.
For the the fatigue is harder than the pain, I can push through the pain as long as it isn't too bad to sleep but the fatigue is another thing. When I try and do too much it can end up with me having to miss work. Having said that, I like the idea of going to work out straight from work. I do have a gym membership so I think going to the gym on my way home will be better for me than driving home and going out again later so I will try this.
Thanks again everyone for taking the time to reply 1 -
lindamtuck2018 wrote: »I have sjogrens as well. I was diagnosed in 2000. I also have rheumatoid arthritis. I do take medications for both so it seems to help. The fatigue periods are wicked and it is hard to function once it hits. A slow cooker is a great way to prepare healthy meals that are done when you get home. I even use liners with mine to make cleanup a snap. I find since I started walking it has helped with the fatigue. I am losing weight.
May I ask what medication you are on for your RA? And do you feel it affects your weight loss?
I have just started on enbrel ( I'm already on methotrexate injections) and just can't budge the weight..
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negative - MAKING the bags. I find it hard to get the food put away - cooking in the crockpot is fine, but I struggle with getting them in the bags afterward, on bad days. And on really bad days, I can't do cooking at all. And sometimes, I have a bad week straight, or so, and use up all the bags I made and then I'm stuck again, wanting food, but not making the freezer foods yet.
I would say, for this to really work, if one had lots and lots of little tupperware that was easy to put food into and straight into the freezer, this might work well. If one stays on it and does it as much as possible, or tries to build up a lot of surplus. But I'm still trying to get there. :-)
You can stock up on plastic containers pretty cheap. Just buy a large stack next time you're at the grocery store. It's worth it. When washing, make sure to use hot instead of cold rinse water (plastic absorbs some of the soap -which can give food a later soapy taste- when soaking in the hot soapy water..soaking in hot (adding some vinegar helps too) instead of cold rinse water does a better job of getting rid of it).
Or leave the items separate in their large pots (or large baggie) and scoop, weight out at time of eating (food prep becomes less of a daunting ordeal, and same is still true for eating versus cooking a meal). Stuff will keep at least a few days in the fridge, so you can have plenty there that's thawed so you are able to scoop a serving out.1 -
Thank you all so much for your help, tips and advise. I really do appreciate it.
I have seen people mention keto and lower carbs, I probably would do better on lower carbs. I tried full on keto a couple of times but it's so restrictive I can't seem to get past the first week. I think maybe if I switch out some carbs and increase my salad and veggies then that will naturally lower my carbs and hopefully help with lowering the inflamation.
It sounds like meal prep on a weekend using a slow cooker / one large pan type meals is the way to go. I eat a lot of similar foods weekly anyway so I guess this shouldn't be a problem really. We are having a new big fridge freezer delivered at the weekend which is huge compared to the last one so I will have lots of space to freeze things. I will stock up on freezer bags and tupperware and come up with some batch cooking ideas.
For the the fatigue is harder than the pain, I can push through the pain as long as it isn't too bad to sleep but the fatigue is another thing. When I try and do too much it can end up with me having to miss work. Having said that, I like the idea of going to work out straight from work. I do have a gym membership so I think going to the gym on my way home will be better for me than driving home and going out again later so I will try this.
Thanks again everyone for taking the time to reply
there is no reason to go low carb or keto other than a preference to.4 -
Thank you all so much for your help, tips and advise. I really do appreciate it.
I have seen people mention keto and lower carbs, I probably would do better on lower carbs. I tried full on keto a couple of times but it's so restrictive I can't seem to get past the first week. I think maybe if I switch out some carbs and increase my salad and veggies then that will naturally lower my carbs and hopefully help with lowering the inflamation.
It sounds like meal prep on a weekend using a slow cooker / one large pan type meals is the way to go. I eat a lot of similar foods weekly anyway so I guess this shouldn't be a problem really. We are having a new big fridge freezer delivered at the weekend which is huge compared to the last one so I will have lots of space to freeze things. I will stock up on freezer bags and tupperware and come up with some batch cooking ideas.
For the the fatigue is harder than the pain, I can push through the pain as long as it isn't too bad to sleep but the fatigue is another thing. When I try and do too much it can end up with me having to miss work. Having said that, I like the idea of going to work out straight from work. I do have a gym membership so I think going to the gym on my way home will be better for me than driving home and going out again later so I will try this.
Thanks again everyone for taking the time to reply
If you do lower carbs, or go keto, makes sure you increase sodium to 3000-5000mg a day. When you lower carbs your insulin drops, and insulin causes water rains electrolyte retention. If you dont replace it you will experience an electrolyte imbalance with symptoms of fatigue, moodiness, headaches, brain fog, nausea, bm issues, muscle weakness and spasms.... not what someone with AI issues needs.
For reference, 2300 mg sodium is 1 tsp salt. Eating 1/4 - 1/2 tsp of salt or drinking salty broth will help.0 -
CharlieCharlie007 wrote: »...Ignore the pain, Or better yet, embrace it. If it is going to hurt no matter what, may as well accept it as part of you, and then it will be in the background. You will still feel it, but it will not longer be phychologically cumbersome.
But I would also mention that the OP said that fatigue is the real killer in their case, rather than pain. And while sometimes just pushing through can help with that, for many chronic conditions, if you push through the fatigue through sheer force of will, then your body will just mess you up further until you are so debilitated you cannot function at all, force of will or no. I've had to do it before in an emergency, and then I was so hosed that I couldn't even walk more than a few steps at a time for days afterward. Not 'it was really hard to walk' but literally unable to get my body to cooperate and move.
^ I concur with this. I think a lot of people with autoimmune diseases will know of "The Spoon Theory" (If not, Google and read it, it's awesome). Once you've used up all your "spoons", there are no more to be had and pushing through it often just means using them up faster. Then your condition gets even worse for the next few days while your body tries to recover.
OP - I try to do a lot of meal prep when I'm well and keep a few varieties of meals in the freezer so that when I do go down, there are microwave meals on hand. I also keep a lot of easy stuff like sliced bread and deli meat (I make the healthiest choices that I can for these if I've been down for a while, to make up for the lack of variety) and just eat sandwiches for multiple meals during those especially bad times.2 -
Susieq_1994 wrote: »CharlieCharlie007 wrote: »...Ignore the pain, Or better yet, embrace it. If it is going to hurt no matter what, may as well accept it as part of you, and then it will be in the background. You will still feel it, but it will not longer be phychologically cumbersome.
But I would also mention that the OP said that fatigue is the real killer in their case, rather than pain. And while sometimes just pushing through can help with that, for many chronic conditions, if you push through the fatigue through sheer force of will, then your body will just mess you up further until you are so debilitated you cannot function at all, force of will or no. I've had to do it before in an emergency, and then I was so hosed that I couldn't even walk more than a few steps at a time for days afterward. Not 'it was really hard to walk' but literally unable to get my body to cooperate and move.
^ I concur with this. I think a lot of people with autoimmune diseases will know of "The Spoon Theory" (If not, Google and read it, it's awesome). Once you've used up all your "spoons", there are no more to be had and pushing through it often just means using them up faster. Then your condition gets even worse for the next few days while your body tries to recover.
OP - I try to do a lot of meal prep when I'm well and keep a few varieties of meals in the freezer so that when I do go down, there are microwave meals on hand. I also keep a lot of easy stuff like sliced bread and deli meat (I make the healthiest choices that I can for these if I've been down for a while, to make up for the lack of variety) and just eat sandwiches for multiple meals during those especially bad times.
OP are you familiar with "The Spoon Theory"? Might be a good way to explain to friends, coworkers, family, etc., what going on with you.
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/4 -
I was diagnosed 3 years ago, along with PCOS and hashimoto's. I lost 150lbs in 6 months successfully, although I couldn't keep it off.0
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Have you looked into the AutoImmune Protocol diet? I have fibro and I suspect sjorgrens as well but have yet to be diagnosed as I'm dealing with a disc issue in my neck right now which has taken precedence.
https://thepaleomom.com/start-here/the-autoimmune-protocol/
I did AIP for awhile and found it pretty darn helpful with my fibro symptoms. I've been able to reintroduce quite a few things back in in moderation.
I bought an Instant Pot (2 actually) and use those a lot. It really speeds things up. I try to do some prep on Sundays for the week but sometimes I'm just too wiped. The other thing I do is when I do cook, I will double or even triple a batch, then freeze it in the vacuum sealer bags. I'm also not super picky for lunches during the week and will make a batch of something, soup, meatballs, asian crack slaw and eat it every day for lunch.
This is one of my favorite recipe bloggers. She has an autoimmune disease and is also a fantastic cook. I love her recipes because they are mostly a few simple ingredients but are super flavorful. She has mostly keto/aip recipes. She also has a cookbook but her blog has a ton of yummy recipes.
https://thecastawaykitchen.com/
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