View Full Version : Another life story...new member
03-15-2004, 06:54 PM
hi Im 29F and dg w/Lupus last year. i have been suffering since the age of 20(and probably since my childhood)-muscle pain, tiredness and bouts of mood swings. At 24 I started getting joint involvement and tendinitis-i was then dg. w/hypothyroidism. The thyroid replacement helped some but the disease progressed-i finally summed the courage to see a rheum and got dg. with it-lupus. I have a weird symptom where I see double ie. I have myositis of my eye muscle and when they are inflamed my eyeballs cant move properly. i am on plaquenil, allegra(for lip swelling) and the synthroid(for my thyroid) and just started zoloft (for depression). Its all a double whammy--Im in the medical profession and I was deathly scared of lupus while a student(premonition/intuition?). I am tired and need 12 hours of sleep daily or I get flares, I am really angry about the disease because finally that ive come to terms with a not-so-happy childhood, gotten my career underway i am stuck with being disabled like this--when i want to go out at night and socialise and meet someone romantically and go to the gym I can not do any of this---where do you find the change of life philosophy to deal with this?...i would like to become more religious--like only God can provide some peace though as I said I am mad at my fate and can't stop asking "why me?". I am also obsessing about my hair--im so scared of hair loss--I spend hours staring at the mirror and examining it.....any words of hope and helping me be less negative will be mostly appreciated...............I feel for all of us!!!
03-16-2004, 11:13 AM
Hi there! I was just diagnosed a few months ago and have lots of kidney involvement, am on Prednisone, BP meds, and Cellcept (immune suppresant). Just to cheer you up, I've had no hair loss at all. I think it's important to have some cheerful people in your life that can lift your spirits and sympathize when you are feeling down. My sister has mild Lupus and basically has had no symptoms in the last year, even while in graduate school. There is lots of hope. I actually do go to the gym, I just do short, light workouts, and really listen to my body. Maybe a gentle Yoga class would lift your spirits? I have really enjoyed mine. It helps me focus, relax, and is very focused on listening to your own body's capabilites. I have met lots of people with varying degrees of Lupus, and many have had kids and lived very active lives. I, too focus on getting lots of rest, so that when I do want to exert more energy (have a long day out or go away for the day/weekend) that I'm not already worn out.
Good luck with everything! :D
03-16-2004, 03:37 PM
I, too, am on Cellcept (2000 mg a day). Today is my first day.
Has you had any side effects from the Cellcept. If so, what were they? I heard some people had gastrointestinal problems. I'm a bit scared of taking this because I have such a sensitive stomach.
03-16-2004, 04:18 PM
Welcome to our forum. Like Missy said, there are so many different kinds and levels of Lupus that almost none of us have the exact same symptoms. It varies from very mild to debilitating.
I find peace in doing quiet meditations during my rest periods where I concentrate on my oneness with the God presence within me. I, too, do yoga and find that it really gives me the centeredness, stretching and body awareness that I need in order to make it through the day.
Do not deprive yourself of your rest periods, they are essential and will help you to accomplish those things that you want to do.
Modifying your life is not as hard as it sounds. You can continue to do the things you like, you may have to shorten the time period alloted for those things, reduce the exertion needed to accomplish them and reduce the number of times that you do them. But, you can still do them!! Do not be afraid to be honest with your friends and family if you are too tired to include 5-6 tasks in your day. Tell them that you need rest periods and you may (or may not) be able to do more. Surround yourself with friends who are knowledgeable about your illness (even if this means that YOU have to educate them) so that they will be accommodating and understanding. You'll be surprised how willing good friends are to make adjustments in order to assure your participation in good health.
Remember that you are not alone...we have all been where you are and we are here to help and support you in any way that we can.
Peace and Blessings
03-16-2004, 06:09 PM
Thank you so much for writing back and the suggestions, the people on this forum seem so nice and w/positive energy--a support network means so much, especialy people who can relate!
Sandra S, Singer
03-19-2004, 03:54 PM
Hi, I just posted on your question about DHEA. I just want to add here that what works for me - beyond the medications (Celebrex, prednisone, DHEA), which only go so far - is regular exercise. I'm 62 and subject to all the aches and pains of osteoarthritis plus fibromyalgia and the fatigue and pain from lupus-like symptoms (I don't have enought symptoms to qualify as having Lupus - for what it's worth - the problems and pain and treatment are the same). I find that if I exercise regularly (and believe me, I don't do a hard workout - I do what I can handle) - my fatigue and pain are very well controlled - and I'm in a lot better spirits too. If I can't exercise (due to illness, for example) I get depressed and tired, etc. I know it's hard to get started with exercise, but it really does work. I think the yoga or the new "yoga fit" would be ideal (I can speak from vast experience of never having tried it!)
I tried dropping the celebrex - and after 2 weeks of getting stiffer and sorer each day - went back on it.