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Posts: 27
Joined: Jul 11, 2011

I have lupus any lupus the sle any tips or words of

Posted by @roysbaby, Jul 12, 2011

I have lupus any lupus the sle any tips or words of encouragement



Posts: 2
Joined: Jul 12, 2011
Posted by @catachoo, Jul 12, 2011

If you have facebook, you can add me, Lori Lachenmeier, I belong to a group, RA chicks, and many of them have Lupus as well. I have RA, but seriously thinking it was a mis-diagnosis, and may have Lupus. Sitting up very short of breath tonight 🙁


Posts: 27
Joined: Jul 11, 2011
Posted by @roysbaby, Jul 12, 2011

Thanks Im sorry for u 2


Posts: 27
Joined: Jul 11, 2011
Posted by @roysbaby, Jul 12, 2011

I have skin and systematic lupus so far rumatologist visit on august 1st


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Joined: Jul 18, 2011
Posted by @stu, Jul 18, 2011

My oldest daughter was diagnosed with Systemic Lupus in 1988. She had symptoms that can match many of the auto immune diseases. Within her first week she could not turn a door knob or hold a hair dryer and couldn’t hardly get out of bed. She also developed the tradional butterfly rash on her face. The
top of her head would hurt so bad she thought it was going to come off. She would get the welts and swelling in her face, that made it look like someone had hit hurt many, many times. Swelling over an eye that literally stuck out half to 3/4″.
I took her to a MD in Washington State who also was combining Traditional medicine. We went through numerous tests and over the next months did a lot of MD controlled cleansing and nutrition. These didn’t correct the issue, but was very evident it helped. She had to become very nutritional oriented which has had a lot of influence on whether she had flare-ups or not. She has recently been tested for Gluten Intolerance and very definitely Gluten is a problem. It has been suggested that 90% of Lupus patients have varying intolerances of Gluten. Many quite extreme.
Creating a lifestyle of less stress and getting a proper amount of rest are extremely important. We found out early in her Lupus experience that Alfalfa was a no-no, as you probably already know. She then got pregnant with twins, which was sort of a kick in the pants, as you are a high risk patient in pregnancy.
Numerous needs of more rest for her going through that. Babies were born early, which is expected in Lupus patients. Everything went fine and twin girls are now going to be Seniors in High School.
We went through all the initial testing for Lyme disease and many other things with auto-immune like symptoms, but ultimately the tests from UCLA Med. Ctr. determined it was Systemic Lupus.
To this day she has spent many hours researching and combining MD and traditional therapy’s and treatments to help her Lupus.
When she was diagnosed in 1988, there wasn’t a lot of helpful information, mostly all negative as far
as living very long with Systemic Lupus.
I, as her father, was not willing to accept that totally negative picture that was painted and set out to find whatever it was that would help. Even though there are no knows cause’s that I know of.
Again, we found others that weren’t willing to adjust their life style and have gone through way more trials with their Lupus, because of those decisions.
A person has to be as positive as possible and not give in and let this disease win. Most individuals are different in life styles and the history of their life. My daughter has never drank alcohol or smoked, even
though it was not strictly forbidden, that was just not something she ever did, and which was best for her and her future challenges.
She still has to take a small amount of Prednisone to help control some slight symptoms, but she is grateful that she has been able to control the hugh flare-ups she use to have. Good Luck & God Bless


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Joined: Aug 01, 2011
Posted by @jlacek, Aug 1, 2011

I have Lupus and although it sucks to have, it is not all bad. Once they get your meds under control, you can actually start to feel normal again. There a lot of horror stories out there in the world wide web. The one thing you have to remember is Lupus effects everyone differently. So just because someone is having major difficulties, that doesn’t mean you will. I am a member of a Lupus group on FB. It is a great group of people and we spend more time laughing than anything else. There is also a lot of support there. I would love to chat with you more about it. I was diagnosed 5 months ago and thought I would never start to feel better. But I am getting closer to normal and now having more good days than bad.


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Joined: Aug 03, 2011
Posted by @beachwalker, Aug 7, 2011

Hi Jlacek, I would love to connect with you, I have some information that you would be interested in.

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