Chronic Illness

sallylou88

hi there, I am relatively new here. I have SLE, known as Lupus, which is an immune disease. I have very classic symptoms as far as SLE is concerned - fatigue, joint pain, some kidney and heart involvement... What I was wondering is if anyone else here has similar conditions? And if so, how you manage your symptoms, diet and motivation. I struggle with depression and anxiety too, which effect my eating and exercise habits. Any support or advice would be very welcome, please do add me if you like ☺️ sally x

dunedingirl

Hi Sally, I had 2 car accidents about 13 years ago and have fibromyalgia and 2 surgeries on my spine in the last year, I find it very hard to exercise and do all the things I see other people doing on here. I have been on every drug out there for nerve pain and depression and lord knows what else. I no longer take any of them. I try to stay as natural as possible and take 5-htp at night to help w/ my sleeping and depression and that seems to help. My motivation is to not feel horrible anymore. Every pound I put on is another nail in my coffin, makes me feel horrible and makes me feel older than I am. I just started 2 weeks ago and try to do something every day even if it's just a 10 minute walk....hope you feel better and this website helps you stay on track

stephanielynne2014

I hear you, Sally! I also have SLE and came here looking for support/motivation in a weight loss journey.
I'm starting very small with exercising, five minutes at a time and throwing all my energy into learning about
Diet/nutrition .. Feel free to add me if you would like to talk more sometime

diegops1

My wife has worked as an engineer in Iraq and Afghanistan for the past 8 years. She was very active until 2 years ago when she developed Guillain-Barre's syndrome. She was close to being medevaced to Dubai, but managed to hide the worst symptoms and slowly recover. She read somewhere online that if she wasn't in an iron lung by week 3 she had a mild case. Yeah, mild case, right. She still limps if she walks more than 3 miles in a day and still has trouble feeling a keyboard with one of her hands (lots of computer work). She has had to cut her calorie intake from about 2000 per day to about 1200 and still struggles to keep her weight under 160 at 5'6". She sets work, education and physical goals and keeps at them. Some days are harder than others, but she doesn't let herself hide in bed more than a day every couple months. As Stephanielynne says, set small reasonable achievable physical goals, and keep learning about your body and nutritional needs.

azulvioleta6

I don't have SLE, but I struggle with several chronic conditions, including some auto-immune issues.

For me, losing weight and living a healthy lifestyle is my way of controlling the things that I can control and getting strong enough to survive the things that are out of my control. When I started working on weight I was completely bed-ridden and inactive. Now I am able to do most of the things that I want to do, most of the time.

Setting very small goals and slowly ramping up your diet and exercise is a good plan.

I have a dear friend with SLE. She has had a lot of success with Tai Chi. The gentle movement works for her, and she likes the sense of community that she gets from participating. Being sick can be very isolating, but she does well with the openness and flexibility of Tai Chi.

FunUsername

Hi everyone. Can I start by saying chronic illnesses suck. ... b12 deficiency, bronchiectasis, hypothyroid, hypoglycaemia, chronic sinusitis, brain lesions. ... meaning frequently tired and sick. Just coming out of a severe respiratory infection/flu ... and still overweight!

How much everyone like/need to lose?
Is planning the key when dealing with chronic illnesses?

This recent episode has left me very down. Worst ever. I do not want to be sick!

I did however watch on YouTube a BBC Horizon Special on What Diet works best. Very useful.

Anyone a member of a gym?

akhpt4

"For me, losing weight and living a healthy lifestyle is my way of controlling the things that I can control and getting strong enough to survive the things that are out of my control."




I needed to hear this today. Thanks azulvioleta6!!!

luvsunshine1

Hi Sally, I also have SLE and have had it for a very long time. I have good times and bad times. Right now, I am in a good phase - although I take prednisone 5mg a day and plaque nil 200mg twice a day. I told myself I'd never be on long term steroids due to the side effects but you've got to do what you have to do to function and that and the plaquenil has been the best thing I've ever done at this point. I exercise almost every day but I'm careful not to exercise too hard or I pay for it for too long. I think you have to find the exercise that works for you. I love yoga and biking and have kind of found my sweet spot with them. One of the best things I've done has been to really limit my sugar intake - too much sugar produces inflammation in the body and already have enough of that with the lupus, also feel so much more energy without it. Another thing for me has been going to bed fairly early - this is a hard one but it helps my body recover and conserves energy. That being said, I had a point where I gave in to the fatigue and slept way too much which just made it worse, so now I'm careful about not giving in to that so much. Anyway, I think you have to find your "sweet spot" with exercise, diet, meds, and rest with lupus. Also, trying not to beat yourself up when you can't do everything that healthy people can do. Sorry so long, I just don't get to talk to anyone with same condition too often. Good luck in your journey.

sallylou88

Also, trying not to beat yourself up when you can't do everything that healthy people can do.

Yea... That's exactly what I do!! It's so lovely to hear from you all

sallylou88

...oh dear not great on this app...
even if we are all sick!
That's some very wise advice from you all, I know I have a tendency to work until I'm exhausted then sleep for a week, I do need to manage a better balance. I get a bit carried away, especially at weekends! My meds now are Azathiaprine (rejection drug), plaquenil, aspirin, citalopram, and various painkillers and sleeping pills. Sometimes diazepam for anxiety but that doesn't do much. It's a good mix, I don't get the side effects too bad these days.
I was wondering how you all manage with work and jobs? I do 4 days a week, which is 36 hours, but would love to do a little less!!
And how do your families/friends/partners cope with your illnesses? Mine tries to be supportive but gets frustrated. I think that's pretty common!
Thanks so much for all your replies, I will try to add you all but might take me a little while to figure out

vllamas08

OMG! I found others who are living with chronic conditions! I have so many. Fibro, PTSD, and all of the other symptoms that are associated with them and those are plentiful. I have become a "regular" in the drs' offices and I see 3 regularly. My pain dr has me on new meds and I get cortisone injections in my vertebra and lower back (alternating) about every other month. These meds are part of why I have gained weight and the other part is because I lost all control of my eating habits. Now I'm paying for it. With my fibro being so bad exercise is pretty much out of the question. However, I can watch my calories so that is what I'm concentrating on. I have gained almost 20lbs since July when I had my hysterectomy. Those pounds MUST come off. They do nothing for my mental health as well as I am disgusted with the way I look. Thank God for spandex pants!

sallylou88

Xxx

sallylou88

Oh I know that feeling. I haven't weighed myself in over 2 years I'm so terrified by what it will say. My weights on here are just estimated. I was on steroids for just over a year and whilst they helped the lupus, they made me gain so much weight that I haven't been able to get off. So depressing! I have some fusion in my vertebrae in thoracic area, so painful, I have sympathy for u xxx out of interest what ages are you guys? I'm 27 this year xxx

cannh497

I'm sorry that you have that horrible disease. I was diagnosed with RA 5 years ago. My rheumatologist then said I had underlying Lupus that just hadn't reared it's ugly head yet which is why she wouldn't prescribe me biologics. My new dr. Labeled me as having mixed connective tissue disease. Either way it all boils down to me hurting all the time. Mainly in my knees which will both be replaced this year hopefully. I find this app to be very helpful when tracking my calories and exercise. I actually look foward to seeing how many calories I have left at the end of the day. I try to keep calories down to 1100 or less for the day. I use an stationary bike to exercise which doesn't have any impact on my knees. I've nearly quit all fast food and soda. I drink my green tea everyday and stick to a high protein diet with lots of vegetables. Since may of last year I've lost 50 pounds the last 13 with MFP. I still have another 62 pounds to go to reach my goal. It's just a day by day process. Don't give up. You'll get discouraged, you'll feel like you're failing, but just get up the next day and try again. Feel free to add me as a friend and good luck!!

TheVirgoddess

I have something called Chiari Malformation. It means part of my skull is malformed, causing constant pressure on my brain stem (6mm of my brain stem has herniated out of my actual skull), and interrupting the flow of cerebral spinal fluid. This means I have trouble walking, talking, swallowing, thinking, etc sometimes. Other side effects are headaches, dizziness, tingling in the hands/feet - stuff like that.

My motivation is simple: I can't control the above - but I can control my weight and other aspects of my health. So I do. My body has enough going on, it doesn't need additional, avoidable issues, too. I've taken control of what I can.

9 months in, 69 pounds down. And honestly, my CM hasn't been a roadblock at all - because I haven't let it.

sallylou88

You guys are amazing. I've just slept through the whole afternoon, feel like it's such a waste but that's just lupus! Look forward to reading all your posts and chatting to you all xxx

Ellaskat

I have Lyme disease and I have bouts that come on and totally flatten me. When I struggle with fatigue and can't move, I try to watch my food more. My husband also steps up and does all the cooking. Also, I've learned that acupuncture really helps me battle through the fatigue, so when I feel it coming on, I make an appointment, stat! Finally, I try to be kind to myself. I may gain a little weight, but I do the best I can. I try to allow myself that kindness.

sallylou88

I've never tried acupuncture, does it really help you? I'm having a rough couple of days, so exhausted and getting bored of feeling crappy. Need to lock the fridge when I get like this! lol xxx

FunUsername

Hi Sallylou and everyone. How ye managing at the moment. Argh I put my back out cleaning the house! Sad eh funny though too. But I need some help to try to loose weight. Got a shock over weekend as I now don't recognise myself. Friend requests welcome.

deladypilot

Sally, you are not alone. Many of us suffer from chronic pain or illness. What we have to do is work within our boundaries to improve ourselves. I too have an auto-immune disorder as well as chronic joint pain especially in my hips. I have a plate and many screws in my ankle as well but I have found a way. Eating healthy is the key to almost everything. It helps your body function as well as get the weight off. As for exercise, do what you can. Because I have hip pain and back pain, I found an Aero Pilates machine and have fallen in love with it. It helps to stretch and build my muscles without impact. It has done amazing things for me and im able to do more now. Yoga is also great. Just try new things and see what works for you. \

Feel free to friend me if you like

acpgee

diegops1 wrote: »

My wife has worked as an engineer in Iraq and Afghanistan for the past 8 years. She was very active until 2 years ago when she developed Guillain-Barre's syndrome. She was close to being medevaced to Dubai, but managed to hide the worst symptoms and slowly recover. She read somewhere online that if she wasn't in an iron lung by week 3 she had a mild case. Yeah, mild case, right. She still limps if she walks more than 3 miles in a day and still has trouble feeling a keyboard with one of her hands (lots of computer work). She has had to cut her calorie intake from about 2000 per day to about 1200 and still struggles to keep her weight under 160 at 5'6". She sets work, education and physical goals and keeps at them. Some days are harder than others, but she doesn't let herself hide in bed more than a day every couple months. As Stephanielynne says, set small reasonable achievable physical goals, and keep learning about your body and nutritional needs.

I got Guillain Barre Syndrome too, including the full program with iron lung and a six month stay in hospital. I still have nerve damage in my lower legs which affects balance. I walk with a cane nowadays, which is a big improvement from the wheelchair or being bed bound when I first got the disease. I can't run or do free weights anymore because it isn't safe for me to carry plates from the rack to the bench. However, it is still possible to do cardio on an elliptical, rowing machine or stationary bike. For weights I am limited to machines and cables.

sallylou88

Just reading back over the thread, a lot of us are lucky just to be alive. It's amazing to hear everyone's stories and how you cope, thanks so much to everyone who has replied, it's comforting to know I'm not alone with SLE xxx

Sammieamfa

azulvioleta6 wrote: »

For me, losing weight and living a healthy lifestyle is my way of controlling the things that I can control and getting strong enough to survive the things that are out of my control.

Wow you have explained me to a tee. Being able to do weight control seems to be the only thing I can do. It's all so painful to do anything. Like someone else has said, "every pound I gain feels like another nail in the coffin. I'm scared to go off it as I know it would be a downward spiral but also trying to stay relaxed about it so the bulimia doesn't return.

I'm on 17 tablets a day plus morphine and I've got to the point where nothing helps anymore and the Drs don't know what else to do with me.

kcd1961

Hi @sallylou88‌ - I've had ME/CFS for 25 years, and it's only been the last 2 years I've had some consistent success with weight loss. Frankly it's hard, and that's for a bloke with a decent calorie allowance. My advice, be patient with yourself, learn as much as you can about what works in terms of both the pattern of eating and the content - for you.