Anyone out there dealing with Lupus?

amunet07

I am going through the testing for Lupus and am wondering if there is anyone out there that has been diagnosed with this and what adaptions they've made with diet and exercise.

Thanks.

amunet07

Anyone? Bueller…Bueller?

joy2157

Yes! I have had lupus for many years and was wondering if anyone on here had it! What kind of exercises so you do? Feel free to add me! We lupies have to stick together! I use the treadmill for my exercise and do some stretching! I also love to get out and walk while being protected from the sun!

fleetzz

No--but sjogrens vs. scleroderma. Still deciding which doc to believe.

LCrowley83

I have lupus, endometrosis, chronic fatigue and epstein barr.

rightaboutmeow

Yep. Lupus here too.

Definitely makes things tougher, huh guys?
Pretty sure I added all of you, lol. I need more friends who understand.

gotholga

I have lupus nephritis and sjorgrens syndrome, I noticed that a lot of the people with lupus are into fitness. Which I think is awesome.

soonergirl03

I have lupus feel free to add me as a friend. I was really into running I was running 5-6 miles 3-4 times a week but my lupus went crazy on me and now I cant do as much as I want to thanks to Methotraxte a drug I hate but have to have.

JnetCruz

I have both Lupus & Fibromyalgia. Getting past the the pain and to start moving is 1/2 the battle. Aside from keeping the food healthy, I also struggle with going to hard to fast and then my lupus starts to act out. I've gained a TON of weight from being on steroids and have just started new food choices and Kaia (a women's cross training gym) this week.

natalia1981

I have lupus and I'm just about getting my fitness levels back up... I really want to start lifting weights too, am thinking of getting a personal trainer to help with this rather than go it alone but don't know how to choose a trainer that will know how far I can be pushed. I find being fitter helps me cope with the lupus a lot easier.

lucful

I have lupus nephritis...only a few friends but wouldn't mind more

divone1

Yes Lupus, fibromyalgia and Sjogrens here. Gained back about 30 lbs over this lasy year and need to get rid of it!!!!

CJewel22

I am currently going through the process of being diagnosed with Lupus! It is effecting my joints, which is killer since I LOVE my gym time and was planning to do a bikini competition at the end of the year. I am usually in the gym 5-6 times a week lifting and do cardio 3 times a week. The past two weeks have been extremely hard due to my knees and back hurting as well as extreme fatigue. I 'm hoping once I get properly diagnosed and start treatment I will be able to pick back up in the gym. Its very reassuring seeing how many people live with this disease and are still able to spend time doing what they love.

lisajg7

Hi - I was diagnosed with Lupus and fibromylasia about 5 years ago and believe me it is a struggle. I keep my game face on for the most part but I'm usually in a lot of pain. Sometimes exercise helps, other times I really think it makes it worse but I keep plugging along. I am overweight so I have been wholeheartedly exercising and counting calories. It seems that for whatever reason, it is so difficult for me to shed the pounds. I also have thyroid disease. I take medication for both thyroid and lupus. I don't see that the medications make you gain weight or make it difficult to lose but you wouldn't know that by me. Its extremely frustrating!!

Nancy1065

I have had lupus for almost 19 yrs. Right now I am doing well.. with fatigue being my biggest issue. In the past I have dealt with joint, lung, kidney and central nervous system involvement. I was even temporarily paralyzed with transverse myleopathy 6 years ago due to CNS involvement. I have also had blood clots. I spent MANY years on prednisone. It saved my life , but I have the figure to show for it too. Currently I am on Cellcept, Plaquenil, Monopril, Dextrol and Coumadin. My Dr is decreasing my Cellcept slowly since I am doing well. I see the Dr again in July. Weight loss is a real struggle for me.

crazymommy5

I have Lupus and CFS (Chronic Fatigue Syndrome). I also sustained a spinal fracture a couple of years ago. I can't perform any exercises that are high impact. My biggest issue is my fatigue, so just getting up the strength to exercise can be a battle on some days. When I do work out, I have to listen to my body very well. If I start to feel any joint pain I have to stop. I have an elliptical and I like to walk. I also do some of the modified versions on Jillian Michael's (and other's) videos. I wish I could do T25- but that will never happen! LOL

pinksneakers1

I have Lupus and have gone from somewhat overweight to OMG what happened to me! The past 18 months I've been crippled with fatigue and joint pain. I used to work out and run but now its just walking - on the good days anyway. I'm just online researching swimming times in my area. I think its time to squeeze into a bathing suit and try swimming. I've decided that because there are days when i just cant do anything I've GOT to be vigilant with my diet. That's what brought me back to MFP....

justcat206

I've got Sjogrens and am apparently "On the path to Hashimotos." Doesn't seem to effect me much unless I eat my trigger foods. But if I do, then it's major joint swelling and pain, massive fatigue and horrible stomach pain. I have to cut way back on workouts during a flareup (really light lifting or walking instead of running). Nice to "meet" you all

Chillyfrog

Doctor thought I had Lupus for a long time, but it's true colors started showing and turned out to be Scleroderma. Autoimmune diseases, they all make daily life a little more difficult... especially this whole weight loss thing!

amunet07

I'm sorry I lost track of this thread... I'd really like to have more friends that understand...please feel free to add me

softblondechick

I have Lupus, and have found that I need to live a pretty, boring, routine life to stay healthy. Changes in routine like travel, working too much, stress, moving, not eating healthy, can throw my body out of whack...and I get sick, cellulitis, flare ups...it is not worth it.

I eat very well, no fast food, or junk food. Veggies, chicken, not a lot of prepared foods.

Exercise, I stick to yoga, elliptical, nothing that is overly fatiguing, or I get sick, exhausted, and can't move for two or three days. I have overdone it, when I tried to do a Beach Body workout, and fitness class...That lasted for 12 weeks. I dropped out half way through. ..

It is frustrating. I can't do a lot of things...I can't drink alcohol at all, makes me ill. I get weird infections...

It is not so bad, as long as you take time to take care of yourself. ..That is the key to managing Lupus.

GaleHawkins

Do any of you find you start feeling better in the 3-6PM window and being night owls vs being early morning types?

amunet07

softblondechick wrote: »

I have Lupus, and have found that I need to live a pretty, boring, routine life to stay healthy. Changes in routine like travel, working too much, stress, moving, not eating healthy, can throw my body out of whack...and I get sick, cellulitis, flare ups...it is not worth it.

I eat very well, no fast food, or junk food. Veggies, chicken, not a lot of prepared foods.

Exercise, I stick to yoga, elliptical, nothing that is overly fatiguing, or I get sick, exhausted, and can't move for two or three days. I have overdone it, when I tried to do a Beach Body workout, and fitness class...That lasted for 12 weeks. I dropped out half way through. ..

It is frustrating. I can't do a lot of things...I can't drink alcohol at all, makes me ill. I get weird infections...

It is not so bad, as long as you take time to take care of yourself. ..That is the key to managing Lupus.

I'm glad someone else is out there confirmed this... my friends think i'm crazy when / if I stay up late & or drink even a 1/2 glass of something i'm sick.

amunet07

justcat206 wrote: »

I've got Sjogrens and am apparently "On the path to Hashimotos." Doesn't seem to effect me much unless I eat my trigger foods. But if I do, then it's major joint swelling and pain, massive fatigue and horrible stomach pain. I have to cut way back on workouts during a flareup (really light lifting or walking instead of running). Nice to "meet" you all

what are your trigger foods? maybe I need to stay away from those too.

atibrat

Have Lupus/mixed connective tissue disease. On Plaquinel and Prednisone since September 2013 when I had a horrible flare that I have never quite gotten over. Fatigue, muscle pain, chronic bronchitis/asthma are the major issues. Sick since 2007 but diagnosed at the end of 2009. The last 2 years I had a herniated disc in my cervical spine that kept me from working, sitting, standing or doing much of anything until my fusion on November 5th of this year. I still have pain when I do too much but it is so much better than before surgery so 8 weeks out now I am excited to get some of my conditoning back. I have 6 more weeks until I will offically be able to do physical therapy but I am trying to be more active and walk more. I plan to get my life back as much as possible in 2015. Would love to be friernds with anyone who understands. I am 52 feeling like 80 and ready to get going toward health. The neck injury really set me back with weight and conditioning. The only way I could control the pain was laying down so 2 year sof being down 70 to 80% of the time was HORRIBLE. I feel like a baby starting my life over again and I am ready to GO.....

cyndit1

I have both lupus and rheumatoid arthritis and take a ton of medication both orally and 2 injectables. It took a really long time to get an accurate diagnosis and proper medication (first diagnosed with only lupus, then only RA and then finally a dual diagnosis) and the combination of all of the medication finally over the last year has made a huge impact on my symptoms (I take plaquenil daily, methotrexate injection weekly, and Cimzia injection bi weekly) I generally only feel really bad when its time for my injections (especially when its double shot day) but when I inject both meds its like a miracle the next morning. I am a distance runner so being active is really important to me and my workout schedule is, as far as I am concerned, as important as my medication. Some days it sucks to get to the gym or outside for a run but I force myself and on bad days I just keep it light. No matter what, exercise always makes me feel better. For a very long time I fought the medication and refused to accept my illnesses but I have gotten over that. For anyone that thinks they can't workout, you can with some patience and perseverence...and yes my doctor knows I run half marathons (22 so far) and although she thinks I'm crazy, she supports me.

amunet07

One of my docs said I probably shouldn't start back into exercise with the P90X a coworker gave me...and right now it is -8 here so...I'm looking for something I can do in my shoe box of a home until I get it together and the weather gets nicer. They tried Plaquinil for me and it made me break out in a nasty rash. Right now all I have is methotrexate and methylprednisolone (which I don't want to take-afraid it will make me gain weight or not lose it). Some days my ankles feel like a scene from the movie Misery. lol (ps they say it is Undifferentiated Connective Tissue disease with Kidney issues that they are watching to see if it is unrelated or related if so I think they will change it to Lupus)

trinity9058

I have lupus with liver and CNS involvement as well as the regular joint stuff. Feel free to add me!

kdfishburne

I have lupus. I have been sick constantly and also have gained about 70 more pounds this past year. I have just hit 300 pounds.....ugggh. I am in pain all the time and can barely move to do exercise.

Debra_mccullar

I'm right here with you. Need to lose 75 myself and SLE does make it hard. Hugs

dtierno

Hi - I am looking to connect with others as I was recently diagnosed with Lupus. It was challenging to get this diagnosis as my rheumatologist was initially thinking I had RA and I took Humira for a year. I have also had Hashimoto's for 25 years. I am determined to get healthy and while I have been a member here for sometime - I have been off and on with my tracking. But this is a new year and a new diagnosis and honestly it might just be the scare I need to keep it up this time. I will now be taking only Plaquenil. My diet is Paleo - I started last September and stayed on it through the middle of November and took a break through the holidays - OMG what a mistake. I can honestly say ( sadly since I miss popcorn) that eliminating dairy, grains and legumes and sugar makes me feel significantly better. So as of Dec 29 I am back to full Paleo and have already lost a little bit of weight and my energy is beginning to increase. I aim for a minimum of 30 minutes of exercise a day - mostly treadmill, some weight training and some yoga. Please feel free to add me as a friend. I also have a fit bit and am trying to get in 10k steps a day.