Hello from Ohio
hello everybody im a 23 y/o female with lupus. i was diagnosed in november of 2005 and last year experienced debiltating joint and muscle pain and then was hospitalized to have fluid removed from around my heart. i also have a pleural effusion in my lung due to the lupus which sucks because it reduces my ability to breath when i exercise. i've been on prednisone FOREVER, i hate it i've gained so much weight in the last couple months from taking it. i've had the pleasure of lupus's natural blush (the butterfly fash) for a couple months now. its just not going away. it seems to have spread to my upper lip, chin, and neck. has anybody else experienced the rash in these places?? also i've been experiencing alot of hair loss lately, im really ready to just get it over with and shave my head. and i could look all sweet like G.I. Jane, my fiancee dosent think that's such a great idea though. lately ive just been feeling really down about being sooo tired alll the time, sometimes its hard for me to realize that this is something i cannot control. if anybody has any good ways to combat fatigue please let me know. i really look foward to being able to express how lupus has/is affecting me with people who understand how i feel. my support system is great but sometimes they just dont get it. well, thanks for letting me whine, look foward to hearing from and replying to others.
Hello Marz and welcome to our family.
Fatigue is very common in lupus patients. We feel fatigue even when we have no other clinical features of the disease (which means that our fatigue has nothing to do with the activity of our disease!). Often, patients with the most pronounced fatigue are also found to have anemia, renal insufficiency (kidney problems), hypothyroidism, long-term disease activity (a flare-up lasting for a long period of time), depression, deconditioning, and poor sleeping habits.
The most important thint that you can do to combat the fatigue is to get adequate rest. I know that this can be difficult with most of our lifestyles, but for us lupus sufferers, adequate rest is absolutely essential.
The Lupus Foundation of America recommends that we modify and re-prioritize our schedules to include naps, if necessary, and to cut out energy-sapping extra activities. It is also suggested that we parcel oout strenuous tasks throughout the day, resting before doing any hard work, and that we use labor-saving devices, like rolling carts.
Ironically, though rest is essential, so is exercise. Regular, gentle aerobics or some form of non-jarring exercise will help to lessen fatigue. Some suggested exercises are: swimming, dancing, fast walking, cycling, rollerblading, and cross-country skiing. Water aerobics are also said to be a good choice because water supports the body and puts less strain on the joints. It is very important that lupus patients avoid strenuous, jarring exercises at all times and that we avoid over-exertion if we have a fever or other signs of a flare-up (active disease state). You should talk to your doctor, during these times, to determine what exercise are appropriate during these times.
Also, it has been recommended that we keep a food diary, recording both what we eat and how we feel. Some foods or combinations of foods can make us feel tired, mainly because we can't digest them well. If we eat animal protein with carbohydrates, we can feel exhausted for days afterwards. Fruits and vegetables can, on the other hand, energize us.
Some supplements can be added to our diets to give us an added boost if used in conjunction with positive lifestyle changes. Some of the supplements that have been suggested are:
* Ginseng, which contains a form of ATP to provide muscles with energy; * NADH has proved to be helpful for CFS patients, there are no clinical studies yet on NADH and lupus, but it is thought to also prove to be helpful to people with lupus.
*essential fatty acids
Skullcap and valerian are natural sleep aids. However, people with lupus should avoid certain supplements, like alfalfa, which promotes inflammation, and immune stimulators, like astragalus and echinacea. It is advisable that you talk to your doctor and/or work with a healthcare practitioner who is knowledgeable about both lupus and supplements.
I hope that this has been helpful. Please let us know if you need any further information. Again....welcome to our family!
Peace and Blessings