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| *Women health>>>Lupus |
Does anyone here have Lupus SLE? |
im 21, and was just diagnosed with lupus a few months ago. im struggling to find a way to continue school and just life in general. I get tired alot and my legs hurt randomly..sometimes so much I cant even walk right. Anyone else has experience with lupus and can offer me some advice? Does this get better...how many times has it been active and how do u know if ur in remission? i think im in remission, but im so scared that ill go back to school and then itll be active again and ill have to quit again. how do u guys deal with this back and forth thing? how do u ever get anything done? I have both Lupus and APS. It is hard to deal with the ok one day...not the next. I am not in 100% remission very often. That doesn't mean you won't be. I had to go to college part time for awhile. I just kept getting sick. Here are some tips that I have learned along the way: -Find a good Doctor who knows about Lupus. You may need to change doctors. -Learn as much as you can about Lupus. The more you know about YOUR illness, the better you'll understand what signs to look for and what to tell doctors/nurses if ever needed. Try to find websites that site their information and are medically sound. Doctors are more willing to accept information that has its sources cited, even better if they are medical journals. Highlight important sections that you want to point out to your care team. -Be prepared for your doctor's appointments. Write your questions down and get answers to all of those questions. -You may need to be aggressive to get the treatment that is best for an Lupus patient. If you find yourself in the situation, doctors are more willing to accept information that has its sources cited, even better if they are medical journals. Practice what you want to say ahead of time just like you would a speech. -Remember, the doctors are working FOR YOU. If they are not willing to work with you, then fire them and find another doctor who will. -Journal your symptoms and INR readings along with Coumadin/Warfarin doses. Also take pictures of any rashes and discolorations that you may have. They may not be there when you see your doctor next. -Find a good therapist. Lupus is a chronic, life-threatening illness and it always helps to have someone impartial to speak to. -Learn the symptoms of a clot, heart attack, TIA, stroke, and bleeding. Knowing these could save your life! These are all possibilites with Lupus. -Inform family and friends on the symptoms of the above and tell them what signs to look for. This could also one day save your life! -Wear a Medic Alert bracelet that states you have Lupus. This WILL be important in case of an Emergency. Keep your information up to date on the Medic Alert website. The Do Nots: -Do not smoke. Quit if you do smoke. -Do not take birth control pills. They will increase your risk for a blood clot. -Continue to drink plenty water, exercise and watch your weight. -Make sure to take your Medication at the same time everyday. Consistency is important later on if the memory issues and brain fog are part of your symptoms. -Buy a Nurses Drug Book, it will help you learn about different interactions with your medications. -Join a support group. There are people out there who are going through the same thing that you are. It will help to share experiences with people who understand. -On long trips (flying or driving) get up and move around every couple of hours. -Strengthen your spiritual life. Whatever that may mean to you. Know that you are not alone. Your symptoms are real. Source(s): http://www.apsfa.org/lupus.htm http://www.apsfa.org/meet.htm http://www.apsfa.org/publications.htm#lu... http://www.apsforum.com i dont have lupus but i have a friend who was recently diagnosed also, and her life is completely turned around, she is always in pain and never feels 100% she lives everyday day by day, but she tries to keep good spirits, she is on multiple meds and goes in and out of remission, i hope yours is easier on you she was diagnosed later she is 24. but she does have her good days. Prevention It's not possible to prevent SLE. Treatment There's no cure for SLE. Anti-inflammatory medication, corticosteroids or immuno-suppressants may be used to relieve symptoms and control the disease, while physiotherapy can help to relieve joint problems. Sun exposure should be avoided and infections treated promptly. it comes and goes. i had a ten year stretch without it. i have it now not to bad since i started taking "hydroxchloroquine" its a malaria drug that works for lupus . |
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| Incontinence Infertility Irritable Bowel Syndrome Liposuction Lung Cancer Lupus Health Insurance Heart Disease Hepatitis High Blood Pressure |
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