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Old 03-10-2009, 04:34 PM   #1
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LeePKULaurLUPUS HB User
New to Forums, new to Lupus

Im new to this whole forum thing, but i needed to find people who are going through what my sister is going through. My sister is 24 years old and she was just diagnosed with Lupus yesterday. My family and I are so close and i want to do something for her, or i need answers, or i need knowledge of what Lupus is. Is it painful? Can anyone get it? I know i need to be there for her and i need to be strong for her and im trying the best i can, as is the rest of my family but in the end, i really just want to know if she is going to be ok? If anyone here is a family member to someone who has Lupus, or someone with Lupus themself can offer any advice, or just any words of wisdom, i need a little help here and if anyone is willing to give it, im all ears.

Thanks

 
Old 03-10-2009, 06:00 PM   #2
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Re: New to Forums, new to Lupus

Lee (etc.!), hi & welcome. I'm sorry your sister was diagnosed. I hope she's seeing a competent rheumatologist & getting treatment appropriate to her symptoms.

Problem is, lupus covers SUCH a wide spectrum, and that spectrum can be fluid. Problems for some people (the luckiest ones) cluster in skin, with perhaps fatigue & arthritis. Others in the intermediate group have "skin-plus": the foregoing, plus things like anemia, GI & urinary problems, etc. In the most serious group, people have full-blown SYSTEMIC disease, in which major organ involvement (heart, lungs, kidneys, brain, etc.) occur.

While many people stay within the general range in which they were first diagnosed, with periodic flares, others develop progressive problems. i.e., there are no fixed "rules".

Because lupus is a very complex disease, reading is helpful. Look in your local library or bookstore for hardcovers by Dr. Daniel Wallace, or by Dr. Robert Lahita---or both. Also, read the "sticky posts" (permanent informational posts) at the top of the thread list here. And many communities have support groups that your sister & you could "test drive".

Yes, for many, lupus can be miserably and chronically painful: lupus arthritis is quite common, affecting widespread joints & connective tissue along the long bones (shins, arms, etc.). Numbing fatigue is also common. All manner of things, actually... which is why I suggested those hardcover authors.

Post more when the mood strikes, and please also tell your sister to post, OK? MOST OF ALL, know that many people can remain pretty stable, with regular checkups, medication, and (alas) many also need to avoid sun exposure. Sending my best wishes to you & to your sister, Vee

Last edited by VeeJ; 03-10-2009 at 06:01 PM. Reason: spelling

 
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Old 03-11-2009, 07:06 AM   #3
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klbk HB User
Re: New to Forums, new to Lupus

Dear LeePKULaurLUPUS,

As a lupus pt., I sympathize with your sister and your family. It is so kind of you to want to help her.

I agree with everything VeeJ said and thought I'd give you a few helpful hints I've learned along the way. I have SLE and I don't know where it will attack next.

A hot tub bath is great for inflamed tissues.

Paraffin wax bath really helps hands, feet, elbows, anything you can fit.

Hand/wrist/thumb splints provide support and protection from hitting hands on hard objects

I'm very sensitive to light and sun, so I apply a high SPF every morning and carry some in my car. I turn off flourescent lights at work and use lamps, etc. I sometimes wear dark glasses indoors if needed.

I have to drive a lot, so I wear gloves to keep the sun off my hands and had my windows darkened. I recently found a head covering that is SPF 50 that has saved me so much pain! I highly recommend SPF clothing if she has to be outside or in the sun.

I love soft heating pads, but have to use them for short amounts of time.

One of the hardest things to deal with is the fatigue. Due to the arthritis, I also had to quit jogging. I learned to plan my energy throughout the week. If I overdo on a good day, I'll probably spend the next in bed. So, I conserve by stopping activity before I'm exhausted. Also, keeping a regular wake/sleep schedule has helped immensely. This takes a lot of discipline.

Ready-made meals are helpful for supper after a long day at work.

Dry skin is another problem, so moisturizers are important.

Exercise is important, so yoga, pilates, and tai chi are recommended.

An electric toothbrush makes that task easier and there are floss systems that are easier to use than the regular stuff.

A lot depends on her symptoms, I've just included what has worked for me over the years.

I wish you all luck. Reading up is extremely helpful, so go for it!

Please post again to let us know how she is.

KLBK

Last edited by moderator2; 03-11-2009 at 01:11 PM. Reason: posted disallowed website(s)

 
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