Hi Im new to this fourm and I just wanted to ask if any of you have Lupus\APS and have started a excerice regim? My doctor said I can do just about any thing. Im on blood thinners for the APS and Plaqunill for the Lupus. Im have very mild Lupus and its the fatiuge that is keeping me lazy and tired. I cofindent that If I work hard, stay to a excersice schem that I can reach my goal. But any advice would be great!

Maggie

Hi,
I had a borderline positive test for lupus about 6 years ago, but a rheumatologist ruled it out for me. However, my sister who is 38 was diagnosed with it at age 24.

I'll tell you her story in a nutshell because I think it may encourage you. When she was diagnosed, her numbers were off the chart, and she was having lots of flares. She was teaching elementary school at the time, and one of the reasons she went to the doc is because she had been routinely falling asleep in class WHILE STANDING UP! Yep... pretty crazy. You can probably relate to that kind of SEVERE FATIGUE.

My sister has a very determined personality. She has always gone after whatever she wants in life, and usually she gets it through her hard work and sheer perseverance. At the time of her diagnosis, she was about to get married. Like I said, she was having lots of flares (lots of pain and swelling in joints, etc. plus the incredible fatigue). She had to be put on prednisone and some other treatments.

I believe at some point she made up her mind that lupus was not going to define her life- she wanted to live the best she could even WITH lupus. She began to take meticulous care of herself. She made sure without exception to get PLENTY of sleep (I think that meant about 12 hours a day for her - for a while). She insisted on naps and going to bed very early. She also became vegetarian (she had been a pseudo- vegetarian already but she wanted to really clean up her diet) and began to do lots of research on diet and lupus. She just ate very healthy. She also had been an athlete when younger but like you had no energy for intense exercise. She took up walking and a few years later she got into yoga.

Her doc at one point (I think early on in her diagnosis) told her he strongly advised against getting pregnant - it 'could' exacerbate the flares and make her worse.

Well, to get to the end of the story... she divorced, remarried, and now has 3 beautiful kids -- she still is vegetarian, walks one hour every day, and is essentially in REMISSION. She still sees a rheumatologist, but has extremely minimal symptoms. One of her docs over the years said he possibly attributed her success with the illness to her vegetarianism (too much protein can be hard for lupus patients to process - hard on kidneys, etc.) and her self care. Who knows? She must have had a bit of luck thrown in too, but her self care has undoubtedly helped. The disease does manifest itself differently in different people and it is definitely cyclical - has its periods of ups and downs.

But maybe you could start by brisk walking and try to force yourself to do it every day...Take really good care of yourself and make sure you get enough sleep, even if right now it seems like a ridiculous amount. Just imagine the life you want to live, and then live the life you imagine (a bit of a Thoreau paraphrase). I wish you the best of luck... I know it's a very tough illness to deal with.

Hi Maggie

I dont have lupus but I know what it's like to struggle with symptoms beyond your control because I have MS. I dont know a lot about lupus but finding an exercise regime while dealing with fatigue has been and still is a struggle for me.

For an entire year all I could do was pilates because of fatigue. I really encourage you to start with pilates or yoga to build your strength.

I go on half hour walks when I'm well. It helps me feel more in control of life AND going on moderate walks definitly improved my quality of life.

The biggest thing - in my experience is to control what goes into your mouth. I stick as tightly as I can to 1700 calories per day (depending on your basic metabolic rate yours will be different) to lose weight - so it doesnt affect my losing that much when I have to go weeks without exercising (I feel crappy without it.. but I still lose weight)

Again. get in control of your diet. meaning all food. find a food plan you can stick too. Exercise will only help... but results come so much faster with a good food plan (in my experience)

Thanks for your kind responses. My Lupus is mild enough where Im just very fatiuged, I sleep 8 hours a day,take naps in the afternoon if needed and walk 15-30 min 3 times a day with the dog....Ive tried yoga but it doesnt work for me. I cant relax. This is why Im going to try the gym. I think that excersice will give me more engery and help relieve the stress I have. Im stressed out because of school. Im learning swedish and its been a long hard stuggle to get a basic grasp on swedish for me. I have dyslexi and Ive over come it in english....well with swedish that is another story! I very hard on my self and I didnt think 3 years into this move to sweden I would still be in school.

Plus at 35 I really want a baby and Lupus makes it hard to get pregant and also being overweight doesnt help. I was told I only have a 30% chance of conciving and even then because I have a bloodcloting disorder that many people with lupus have called APS or sticky blood I have a higher risk to miscarry in the first 3 month. So my doc thought let try and get about 40 pounds off and then see where we are. Its wont be the end of the world if I dont have a child but It would be nice. Plus many women seem to have babies in the mid 30's.
Thanks walking 2 lose...for sharing the story about your sister. Im happy she is doing well.

Again many thanks,
Maggie

I was diagnosed with Lupus in 1980, at that time I had already lost 5 pregnancies at different times (2 miscarriages, 2 still births and and etopic). I was determined to have children. When I became pregnant for my fifth pregancy, which was the etopic, they also told me that I was carrying twins. I lost the one baby (etopic) but still was able to carry my son for another five and half months. He was born almost 8 weeks early. At that time Lupus was not as well known as it is now. Although Lupus is still a relatively unknown diesase to a lot of people including the medical field. After having my two beautiful children, a son and daughter, I decided that I needed to be around for them and felt that I had put my life in enough danger to have them. During my pregnancies I had pre-eclampsia that was caused by the Lupus. It has only been recently that I learned about APS and wonder if that was more the problem. I went on and lived a full life and even went back to school and earned a degree in nursing and graduated in 1999 at the age of
45. I just recently finish a certificate in legal nursing (December, 2007) so that I could continue working in the nursing field but have the freedom to work when I could but could still get the rest that I need to combat the fatique. Fortunately between 1999 and 2005 I had very few flares of the lupus.

In 2006 I had gastric-by-pass surgery and lost 130 pounds. I don't attribute the recent flare to the surgery but since then my flares have gotten more intense. One of the requirements that my surgeon requires is daily exercise that is cardio exercise for a least an hour a day. He also understands the lupus flares that I experience may prevent me from completing my daily exercise. What he has advised me to do is to exercise 15 to 30 minutes and then rest then later in the day go back and do another 15 to 30 minutes of exercise. This has also been the advise of my rheumotologist. He advises that you don't just lay around but that you try to equal out the amount of exercise that you can do at one time and then follow it with rest. My rheumotologist has also given me a prescription for physical therapy. I have been lucky to find a physical therapist that understands autoimmune diseases and has allowed me to use his gym and trainers but he has all the say in what exercises I do and for how long. He is able to read me like a book and can tell if I'm having a good day or not.

I hope this information helps you. I'm always willing to help some one through a difficult time whether it be getting through a pregnancy or dealing with an autoimmune disease.

Thanks so much dutchnurse

I was diagnosed with Lupus 2 years ago, after several years of just not knowing what was wrong with me, two miscarriages, two live births and a hysterectomy later I was diagnosed, it's believed that I have had Lupus for nearly ten years. The fatigue is such a killer and sometimes so hard to explain to others who just don't get it. I found a book about a natural path to healing lupus, after having been on prednisone and blood thinners as well. I found that my weight crept up on me until I was at my heaviest 231, on a 5'6 frame. Diet plays a huge role in how I feel and since I've finally excepted that I do need an ocacasional afternoon nap, ( before I felt like I was being lazy, didn't help that the ex husband TOLD me I was lazy either) and also breaking up my exercise into two session a day instead of one big one, has helped alot.
I'm at 177.5 right now, and have started the Fat smash diet. Fruit, Veggies, Brown Rice, Plain yogurt...all these foods were in the book that I read years ago and lost weight while following, at that point though I wasn't trying to lose weight, just feel better. Talk about a "DUH" moment. I haven't had a serious flare in about a year now, still have joint pain and fatigue on occasion, but again have found that in the past year I haven't been as religious with my diet as I should be. New relationship and I didn't want to delve into it all at first. Now I'm engaged and Dear Hubby to be is very understanding and encourages naps. Gotta love him.
I don't have the book handy but if your interested I can find it and let you know what it is. Good luck to you and to all of you.
Kari

Hi to all. I have APLAS also. Was diagnosed in Nov 1996