Any Lupus sufferers??

Amie - posted on 12/14/2010 ( 8 moms have responded )

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Anyone else living with Lupus? Would love some info on how you prevent/handle flare ups, especially in regarding to chasing young children during a flare up!! It sure can be tough!

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Kate CP - posted on 07/09/2011

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IVIG has been a big help to one of my friends who suffers from Lupus. Might be worth asking your doctors.

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Brandi - posted on 06/22/2011

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I would love for someone to give me some advice too. I was diagnosed 11 years ago when I was 22. I have been lucky so far. Before the doctors finally figured out what was going on, I couldn't hardly get out of bed in the morning and since January it feels like it's happening all over again. I am a nurse, in a hospital, so stress is an everyday part of my life. I have apparently developed Hashimoto's Thyroiditis now and I am literally dragging my butt around. I don't know what I have done differently or if it's the thyroid making me feel so bad. I have to force myself to get up to take care of my boys most of the time now. My youngest son has CVID and I make alot of day long trips to Houston with him and that drains the life from me. I am freezing to death because of the Hashimoto's and every joint in my body is screaming. My stomach could never tolerate the Plaquenil. I have a pill phobia and try to take as little medication as I can get away with but I do eat Ibuprofen 800mg like they are candy. I have already broken a hip so I try to steer clear of the steroids too.

Julia - posted on 05/25/2011

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I have it (was diagnosed approx 2 years ago).... I feel as though it is sucking the life right out of me. This year especially ... I'm a stay-at-home Mom to our 3 year old daughter and I have no idea as to how I am going to get through the summer with her. I suffer from photosensitivity on my face, neck and upper chest ... the sun just completely wipes me out. In terms of self care, I nap when I can. I do yoga -- I find that really helps and I take an omega 3 supplement. If anyone has any tips, please share :)

Kate CP - posted on 12/16/2010

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I don't blame you for wanting to avoid the steroids. Those things are a bitch and a half. :/

Have you talked to your rheumatologist/oncologist about alternative therapies? I've heard something about chemo for severe lupus but I haven't looked into it as it's not my specific auto-immune deficiency.

Amie - posted on 12/15/2010

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I am currently taking a CoQ10 supplement, a low dose aspirin, Fish Oil and an allergy pill. I am trying my best to stay away from steriods as long as possible. My favorite advice has to be avoid stress. :) If that was so easy cosmetic companies would go out of business for lack of need for anti-wrinkle creams. :) Is anyone else taking any meds or following a special diet?

Robin - posted on 12/15/2010

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Hi, I am now 48 years old and was diagnosed with Lupus at 29. I had 4 children under the age of 7. I was very sick, hospitalized a few times,,..very challenging times. Home health aides came to help for a short while. Then I just had to wing it. One dr. told me to avoid stress and rest, I said if he could figure out how to do that with 4 kids he would be a millionaire. My prayers are with you. My email is forestrobin82@yahoo.com if you want to email me. I don't come to this site often.

Katherine - posted on 12/15/2010

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My aunt suffers from it. When she has flare ups her face practically turns purple. She is also in a lot of pain. I found this to be a little helpful:

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Avoid environmental triggers. Some materials in the air and your surroundings can trigger lupus flare-ups. Talk to your doctor about how to find out more about triggers. Common environmental things to avoid include fumes from cleaning agents, hair dyes, tobacco smoke, ultraviolet light and excess alcohol.
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Get enough sleep, as insomnia has been linked to lupus symptoms in some people. You should aim for eight to nine hours each night, but don't stay in bed too long. A sedentary lifestyle can increase the chance of arthritis due to your lupus.
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Reduce stress. There is no real way to avoid stress completely, but you should take steps to reduce it. Stress can cause your lupus to worsen, so try methods such as meditation and light exercise to cut some stress out of your life.
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Watch your diet--there are many food ingredients that are proven triggers for lupus flare-ups in some people. Try to eat as naturally as possible: avoid sugar, saturated fats and heavily processed and preserved foods. Check out patient stories at the Disease Proof website. See the Resources section below for a link.
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Take an omega-3 oil supplement. Commonly found in fish, omega-3 is a natural substance that helps your body fight inflammation. Look for fish oil pills, which are usually rich in omega-3 oil.



Read more: How to Live With Lupus | eHow.com http://www.ehow.com/how_2051929_live-lup...

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