I have lupus. It's not horrible, and the symptoms vary in intensity according to whether I'm having a flare or not. I'm on medication which keeps the flares to a minimum, which is nice.
But on the other hand, even with that medication, I never feel GOOD. Even on my best days, I'm tired and have some sort of low-grade muscle and joint pain. I've learned to live with it, for the most part.
What bothers me most, though, is the seeming inability to do the physical things I want to do. I love to dance, but I can only do it for about fifteen minutes at a time, tops. Then I begin to hurt, I get dizzy, I feel weak---basically everything just turns to yuck. I did fifteen minutes of Pilates earlier today, then later tried to do a "Walk Away the Pounds" DVD so I could get some kind of cardio workout.
Guys, I only got through about ten minutes of that thing before I just couldn't do any more. And now I'm feeling miserable both physically and emotionally. Even though I know I'm sick--it's been three years since my diagnosis--I still feel on some levels like I'm just lazy, and that I OUGHT to be able to do the same things as other people, at the same intensity.
I'm just so angry about this, and embarrassed, and guilty, and I guess I just needed to get it out there. Sorry for dumping on all of you, but I hate this stupid disease.
I'm so sorry! My brother was diagnosed with Lupus when he was 18, so I know (somewhat) what you are going through.
You've already lost quite a bit of weight, don't beat yourself up for those last few lbs.!!!! Take care of yourself and do what you can when you can. I have tendonitis in both my hands and when I flare up, I just have to slow down and do what I can. If I push it then I make myself worse. It's hard to deal with, wanting to do more, but just not being able to physically. It's not laziness
Hi. I can sure relate to how you are feeling. I have Osteoarthritis and Fibromyalgia. The pain I can deal with easier than the darn fatigue. Like you, my energy levels are low and the pain takes over if I do more than I should. I always say, if I play, I pay!
Please STOP feeling guilty about something you cannot control and do the best you can with the "new" you. I have had back problems since I was 29, had surgery, had a few "good" years, and now have developed OA in that area. I am very thankful that depression has NOT been part of the problems that I have encountered. I just had my 60th birthday, and am doing better now than 10 years ago.
Hang in there - I know Lupus isn't fun, but then no chronic disease is.
You have had a great weight loss - for whatever reason, I can't seem to lose one pound, no matter how hard I try.
I have scleroderma, fibromyalgia, and osteoarthritis of the hips. Before diagnosis, I was running about 25 miles a week, and training for a marathon. After 12 years of dealing with all this, I'm just now learning to celebrate what I can do. Tonight I walked for 30 minutes at a pretty good clip, and this was great! Don't beat yourself up over what you can't do, celebrate what you can. What you can do tomorrow may be way more than today, so hang in there. :-)
Thanks for proving that I am not the only whiner! I have been dealing with, as yet, undiagnosed pain for the 2 years since my daugther was born. I have "good" and "bad" times (in blocks of weeks usually). There is an autoimmune component and a muscle component. I have been fighting for a diagnosis for the last 2 years but I am now trying to move into acceptance so I can move on with my life. I have been in a hold pattern.
I have mostly maintained my weight but I have gained some because I feel I deserve to eat comfort foods when I am feeling bad. The stress hasn't been easy either. I am trying to find a job now that I can do from home, given my physical limitations. I have typeA personality tendencies so feeling limited and restricted by my own body has been very frustrating.
At this point I figure my weight is the one thing I can control so I am going to work on getting the extra weight off. It can only make me feel better right?
Nice to know this chat group is here to lean on. Whine away, I know I will from time to time.
On a positive note my husband is dieting too. We have made a bet and whomever loses the greatest percentage of weight by my birthday (next April 1) will get the destination of a fall getaway for the 2 of us. He wants Vegas (loves to play poker) and want anything other than Vegas!!!!! Go me!!
I have a DVD called "pilates on the ball" which I like because it is low impact and I don't have to stand. It is pretty easy on the joints but really works muscles. I can't do it often and certainly not 2 days in a row but at least I know it is there!
Blessing to all with daily pain and the twist that adds to the battle of the bulge!!!
I don't have lupus but do have a rare liver disease with also an auto-immune disease. My main symptom is severe fatigue. I too get very frustrated that my body sometimes doesn't want to co-operate with my desire to exercise and be fit. I can be doing great and then be almost bed-ridden for sometimes weeks at a time. I now celebrate what I am capable of doing and do my very best during these times. I know how hard it is. You have done awesome at losing weight and this will only make you feel better. Good luck and sorry that you have these problems to deal with.
My 90 yr old mother even complained of the things she couldn't do before she died. I told her she should have had an autoimmune disease (sarcoidosis) and then she would have learned at a young age (28) that you do what you can and leave the rest. If you have to rest for a whole day or more, so be it.
Can I whine for a moment?
I'm so sorry! My brother was diagnosed with Lupus when he was 18, so I know (somewhat) what you are going through. 
