Losing weight whilst battling illness?
NerdyNix
Posts: 111 Member
Anyone else on here trying to lose weight whilst battling illness? I have Lupus and RA and it would be good to hear from others about how you manage diet and exercise.
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Replies
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Me! I have a severe chronic illness, multi systemic like Lupus is. I'm a wheelchair user, I've lost 130lbs so far
.. it's difficult but not impossible! You just have to believe you can do it!! 0 -
Wow that's amazing! I'm not wheelchair bound (although have been told it's likely in my future) and I've not done as well as you do you must be so prod of yourself. How did you manage it?
I did lose 3stone a few years back at weight watchers but after things got worse for my health it all piled back on. I am going through a pretty good few weeks so have been able to exercise but I know it won't last. When I get a flare I can be stuck in bed for days. Unable to do even the simplest tasks never mind exercise. So it's hard to really chose an activity level on MFP and some days I'm sedentary and others I can be pretty active!0 -
I have Fibromyalgia and 24/7 vertigo. 99 pounds lost so far! #noexcuses!0
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I have similar to lupus it's an auto immune disease I take steroids which are murder when trying to lose weight. Tried weight watchers but got no where, this app is brilliant only week 1 but I've lost 3lb, which I'm very happy with0
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Is it prednisone you are on? That was a major contributor to my weight gain
it's very tough to deal with but you are doing great to have lost 3lbs! 0 -
I have an auto immune disease (IgA Nephropathy) and a kidney transplant last August. I'm on steroids (prednisone) and immune suppressants. I also go in tomorrow for a major hernia repair. I've 25 lbs so far. It is difficult with prednisone because it makes you feel so hungry. Literally I have to just measure everything out and not let myself eat any more despite feeling hungry.0
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Lady_Grell wrote: »I have an auto immune disease (IgA Nephropathy) and a kidney transplant last August. I'm on steroids (prednisone) and immune suppressants. I also go in tomorrow for a major hernia repair. I've 25 lbs so far. It is difficult with prednisone because it makes you feel so hungry. Literally I have to just measure everything out and not let myself eat any more despite feeling hungry.
I remember that feeling. Prednisone hunger!! I was weaned off them 2 years ago. Is it Methotrexate you are on now? I am on that for my arthritis. Thankfully no hunger pains on MTX, just sickness
Does anyone on this thread mind if I add you as friends? X0 -
You can add me as a friend. I have a rare disease called Alport Syndrome, and I'm almost 15 years out from my kidney transplant. In addition, I've been diagnosed with bipolar disorder, migraines, parathyroid growths, ibs, and I'm talking to a surgeon on Monday about gallbladder removal.
I have a friend with MS. He manages the symptoms with meditation, so instead of staying in bed all day watching tv when his symptoms flare up, he wakes up three hours early and spend a few hours alone, passing attention to his breathing and clearing his mind and body of stress. He designed himself a diet of whole, healthy foods that help him feel better. He takes no medication, except the kind that helps with meditation, but you'll have to go to Colorado for that.
I wish I had followed his example years ago. I used to be a little resentful that I would always have to take medications, but my path is different, as is yours. I've cleaned up my diet and stopped overeating because I don't want to be in pain anymore. I'm giving up ice cream because I want to feel better (and it's working). I'm becoming mindful enough to recognize the times when I need to set-top and pay attention to myself. When I notice racing thoughts, I concentrate on my breathing, and make room for newer, more positive thoughts. I've started a yoga practice because I want to feel better. My body aches even more when I don't use it. I'm gentler with myself, and I'm gentler with other people.
It's hard. Life is hard. It's a practice, not a spectator sport. I always said my mind was too scattered for meditation and my body was too weak, but when you start small and just choose to do it, ten seconds will turn into "holy cow! This is awesome!"
I don't see myself ever meditating the hours a day, but a couple months ago, I wouldn't have seen myself even attempting any of this. You can do it!0 -
imogen__may wrote: »Me! I have a severe chronic illness, multi systemic like Lupus is. I'm a wheelchair user, I've lost 130lbs so far .. it's difficult but not impossible! You just have to believe you can do it!!
You are incredible. I love stories like this.0 -
Hi, yes it's prednisone I take.. They are also trying me on a maintaining drug called mycophenolate mofetil, to suppress my immune system.. It is very difficult to try and lose weight as I feel "steroid hungry" all the time! Thankfully (or not) my husband is needing to lose weight too, so we are trying together.. I am more than happy to become friends with you all, please add me xx0
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That's good that you have your husband to help motivate you mines a skinny dude!
How is everyone feeling?0 -
Good for you guys! For all of us battling serious illnesses this shows that you can do it. Im down over 50 lbs to close to my ideal weight now. Took me 9 months. Im in a wheelchair to move but can stand sometimes but not walk. Ms is tough on me but i cut out junk food, most carbs and alcohol and eat much less. I feel much better and thats the most important. Dave0
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I have fibro, pituitary problems (panhypopituitarism/adult HGH deficiency), and several other metabolic diseases.
I just do the best that I can and keep moving. I've lost around 90 pounds and have maintained in that vicinity for a couple of years. I still need to lose 20 more pounds, but my doctors are telling me that this won't be possible. They also told me that I would never weigh less than 240...I am now at 209.
I just keep trying and try not to get frustrated by what I cannot do. I rarely have fibro flares anymore...at this point they only seem triggered by extreme stress and extreme heat/cold.0 -
Not quite as serious as some but I am dealing with interstitial cystitis, chronic kidney stones/infections, PTSD, OCD, anxiety, and depression. I am lucky that I have... less severe... versions of IC and my mental illnesses. The IC is the hardest part because it is only partially controlled currently through pain meds, diet, and PT.
I am a bit worried because IC is often found in conjunction with lots of other issues such as fibro, RA, CF, and others... and lately I have been having a lot of issues that could fall under fibro and CF. So a bit scared that my list is going to get longer.0 -
I was officially diagnosed with Fibro also but I can never tell the difference between my lupus, RA and Fibro so I never really bother disclosing the Fibro diagnosis!
Overlapping conditions are a total nightmare. They are like dominoes, once you get one, they just keep on coming. Dominoes is probably the wrong example but I can't think of another one!!
Everyone on here has done amazingly. It definitely goes to prove that there are no excuses. I was 180lbs when I was first diagnosed with Lupus 5 years ago. I went to weight watchers a few months after the diagnosis and lost 52lbs in 17 weeks. Managed to maintain for about a year but I had a major flare and then the RA kicked in and was put on methotrexate which made me so ill. I got depressed and ended up eating junk and sitting on my backside all day wallowing. Put it all back on. I was back at 180lbs in April. I'm in a better headspace now though. Lost 10lbs so far and I'm determined to get back down to where I got with weight watchers. Think it was 126lb (I'm used to stones not pounds! I was 9st 4lb at my lightest, 13st at my heaviest.)0 -
azulvioleta6 wrote: »They also told me that I would never weigh less than 240...I am now at 209.
That's awesome. Well done0 -
Hi, yes it's prednisone I take.. They are also trying me on a maintaining drug called mycophenolate mofetil, to suppress my immune system.. It is very difficult to try and lose weight as I feel "steroid hungry" all the time! Thankfully (or not) my husband is needing to lose weight too, so we are trying together.. I am more than happy to become friends with you all, please add me xx
I've been on Cellept (mmf) for almost 15 years. Does your doctor plan for you to be on this long term? Start keeping an eye on your iron intake now. It can cause anemia in the long term (I've read the packets that come with my immunosuppressants and they are not meds to be taken lightly), and I am getting Procrit shots for the rest of my life! CICO for weight loss, nutrition for your body!0 -
I have panhypopituitarism (adrenal insufficiency, adult growth hormone deficiency, etc.) and take hydrocortisone and a lot of other meds daily. I have lost 19 pounds since last July. I have a lot more weight to lose to reach my goal. I am happy to see the successes of others on this thread! I have set my goals to have a 2 pound loss per week, but I haven't seen a consistent loss. I am sure that increasing my dosage of growth hormone and a recent illness that required increased daily hydrocortisone intake hasn't helped.
I was measuring my food before and have begun to weigh my food. I have also started to increase my physical activity, which greatly increases my energy level! I seem to manage the steroid hunger by eating protein with fruits or vegetables and drink water throughout the day.
Feel free to add me!0 -
I deal with severe chronic migraines, fibromyalgia, pcos, and pmdd... I'm down 30 and still have a ways to go!
Have you heard about the Spoon theory? If not. Stop what you're doing and Google it, right now.
It changed my life and helped me manage my good days and not feel so guilty on my bad days.
I keep a veggie tray loaded up with extras inn ?Baggies so when I'm not feeling well i have pre made healthy snacks. I home make the veggie trays on my good days.0 -
Oh, plus i take Plexus which has helped me go from 1good day every 3 months to 4 good days a WEEK. it's a life changer.
Add me as a friend on here. Spoonies unite!0 -
I love the spoon theory! Really helped my husband to understand0
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I have a very unusual illness called chronic ideopathic pacreatitis. Most people have acute pacreatitis and most frequently they are alcoholics. I have the pain always with acute attacks of severe pain. Noone knows why.
I have also survived three lots of cancer. Uterine thyroid and melanoma.
So yeah I know what it feels like to battle an illness and keep in trying to lose weight. It's hard, really hard, and no one will ever understand that but you. But you know what? You can do it and those bad days will still be bad but at least you are defying that illness and doing something to be proud of.
For a long time I felt that I WAS my illness. I was defined by my symptoms and pain by so very many people that I started to see myself that way too.
But I am looking forward to defining myself as that seriously buff woman in the mirror, with a new profession (I had to quit my old one) and a great life forever how long that may be.0 -
I have Spina Bifida Myleomenigecele, chronic kidney disease(hovering between stages 3-4), hydrocephalus. I also wear afos due to paralyzed calf muscles and crooked feet. I have lost about 33 lbs since February. I have my profile set to sedentary and on weeks where I am more active I just input the extra movement. I can have days and weeks where it is hard to get out of bed with kidney infections and all other kinds of madness.0
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https://www.sciencenews.org/article/typical-american-diet-can-damage-immune-system
I cannot access the whole article or find the names of the scientists. Even so, I find this intriguing.
There is evidence that we can benefit from eating whole foods . . . cook at home.
My gp has me on a daily probiotic.FOOD FIGHT: The body's bacterial community helps train the immune system to recognize and fight off invaders. New evidence suggests that those helpful microbes don’t care for fatty, sugary or salty foods.
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I have a very unusual illness called chronic ideopathic pacreatitis. Most people have acute pacreatitis and most frequently they are alcoholics. I have the pain always with acute attacks of severe pain. Noone knows why.
I have also survived three lots of cancer. Uterine thyroid and melanoma.
So yeah I know what it feels like to battle an illness and keep in trying to lose weight. It's hard, really hard, and no one will ever understand that but you. But you know what? You can do it and those bad days will still be bad but at least you are defying that illness and doing something to be proud of.
For a long time I felt that I WAS my illness. I was defined by my symptoms and pain by so very many people that I started to see myself that way too.
But I am looking forward to defining myself as that seriously buff woman in the mirror, with a new profession (I had to quit my old one) and a great life forever how long that may be.
I need a "like" button for this0 -
I have COPD, which has me gasping for air, sometimes just walking from one room to another. But reading here, I am reminded that I'm fortunate just to be able to walk. I have about 130 pounds to lose, but have taken off 23 pounds since March and can see a small difference in my breathing, so I'm motivated. My niece downloaded MFP for me only a week ago and I love it!! I take Prednisone and wasn't aware that it could stoke hunger, so that's another thing I've learned here. Don't feel so alone, now that I found you all.0
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I am so inspired by all of you!
To chime in with my story, I've got chronic migraines, chronic back pain even after surgery, celiac disease, bipolar, fibro, ptsd, gastroparesis, a hepatocelluar adenoma that will probably have to removed, a who-knows-why dying gallbladder that is also going to have to be taken out, chronically cycling blood sugar levels that aren't quite enough yet to diagnose diabetes but enough to mess everything up, and I think I'm forgetting a few. I'm on too many medications to list, and almost all of them have the side effects of weight gain and increased appetite.
BUT
I am not my diagnosis. I am not defined by what or how many doctors I see or how many pills I take a day.
Even with food restrictions (gluten free, high protein, ultra low fat), medications, and diagnoses stacked up, I've lost 26 lbs since joining MFP in February -- 51 lbs total since last fall, and overall, 91 lbs down from my highest weight. 260 to 210 to 169. I'd like to hit 140, but I'll first be happy just to get into the "normal" range on the BMI chart.
I've found that I do best if I break my total goal down into smaller chunks, incremental goals. Then I let myself "sit" at a new weight for a couple of weeks or so, or even longer, to adjust to a new set-point, and then resume losing. I actually embrace my plateaus. This really helps prevent rebound weight gain, especially for those with 100+ lbs to lose.
But you're awesome! It's so great to read success stories, especially in the face of what most of humanity would see as overwhelming odds.0 -
I have budd chiari syndrome which is a blood clot blocking the vein in my liver. It was most likely caused by polycythemia vera a rare type of chronic blood cancer.
About 2 years ago i found out i was pregnant and decided i need to live better in order to set an example to my future child.
I did prenatal yoga.
I added veggies to my diet (which is huge in my world)
Started taking vitamins daily.
Cut out red meat.
Cut out white flour, pasta, bread.
I try to incorporate new foods and foods i have always found gross like aspargus and mushrooms, weekly
I make smoothies.
I eat oatmeal damnit.
I premake meals for the week.
I freeze fresh foods before they expire.
Im trying to eliminate proccessed foods from my home (thats tough i also have a disgruntled teenaged stepson that needs processed food to survive).
I go to the gym as much as possible but i should go more.
Its frustrating being tired all of the time. Wanting to do things but napping instead. If i do what i want i lose the next day and maybe even the day after that too.
I take medication that helps but also makes me tired on top of tired.
Eating better has made the biggest difference in my health and attitude.
I thought weight would fall off just by changing my diet...nope...not an ounce.
So now i am logging my food. Hopefully this will help.
I am blessed with a husband that is supportive of the changes. Its gotta be rough on him when i say things like, "tonight we re having butternut squash and spinach lasagne"
But he knows he is benefiting from the healthy clean eating, whole foods diet.
I know things will happen once i lose weight
1. i will feel less pain and 2. The doctor's will have to stop blaming my weight and do thier damn job lol 3. I will be able to climb on park structures and go down slides with my kid and not feel like a whale of a mother that could possibly break the whole damn thing.
And yes the spoon theory is the best way to describe daily life.
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I've begun to understand that there's more to it than this--in a good way! Yes, I'm more than Alport Syndrome, but I'm also a face of Alport Syndrome. I am the face of hearing impairment, renal transplantation, and mental illness. What I do tells the world what I'm capable of. My medications have become part of my body, just like the foods I eat. My body is made from what I am and what I do. I can't reverse a genetic mutation, but that doesn't mean I can't become a person who represents the potential of every human.
It sounds so silly and metaphysical, but most of my friends are disabled. I know paraplegic yoga instructors, hearing impaired singers, dyslexic academics, and a MD who happens to have Cerebral Palsy, and that's just scratching the surface. I'll be more than okay to join their ranks as "inspirations" if being a face of disability means helping people who aren't okay with it yet.0
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