Lupus?

Elaine · Posted: Tue Nov 01, 2005 10:11 am Post subject: Lupus?

Hello, I'm new to the forum. I haven't been well for about two years; fatigue, skin rashes, muscle weakness and joint pain. I've had numerous blood tests, an EMG, skin and muscle biopsies. The skin biopsy is the only test that came back abnormal, which gave me the diagnosis of lupus or dermatomyositis. The meds I'm taking are Plaquinel and Relafen. I'm seeing my family dr., a dermatologist and rheumatologist. All of them are at a loss to give a definate diagnosis.
All I know for certain is that I'm sick and tired of being sick and tired! What I really need is for someone to say that they have been where I am and there maybe a "light at the end of the tunnel". Does it ever get any better?

PattyLatty · Posted: Tue Nov 01, 2005 10:56 am Post subject:

Elaine, I suspect we've all been where you are - you feel like you're going crazy but no one will listen to you. It's important that you listen to yourself, and also that you know you're not alone. When I have flares I feel as though I might lose my mind, but all I can to is hope and pray my flare will subside. And they do. I'm in a bad one now so I can really relate to you. I'm new to this forum too, but think it's going to be real helpful. Hang in there.

hatlady · Tiger Joined: 16 Oct 2004 Posts: 810 Location: Illinois

Welcome, Elaine, to a group who knows EXACTLY what you mean by being "sick and tired of being sick and tired!"

Things I've found that help me gain a bit of energy --

* eat right. consider cutting out as many saturated fats (dairy, red meats) as you can, they promote inflamation. Eat lots of veggies, fruits, salmon, whole grains. Stay away from processed stuff.

* get enough rest - I need SO much more now! At least 8 hours a night, and when I'm not feeling well, a short nap during the day is a blessing.

* be around positive people - oh a support net is so helpful!

* consider taking fish oil (good omegas) or ground flax seed, and add some turmeric to your diet - it helps with pain as well. If you love curry, here's your chance to go curry-crazy.

* stay out of the sun - it is so bad for us! Note my moniker - get a hat with a 4" or wider brim. Wear it every time you leave a building. Cover your arms as well. Wear sunscreen too.

* Monitor your days. what tires you? times of day? activityies, are you more tired after certain combinations of food?

There are days when nothing helps. Then you just have to slow down. I've learned (though not always am I good at it!) to slow down and smell the roses. Or the daffodils. Or the falling leaves. Life at a slower pace has its rewards as well.

And be here on the board with us.

Hugs dear ~

Elaine · Posted: Thu Nov 03, 2005 7:33 am Post subject: Thanks!

I appreciate your responses, full of advise and support. I've been visiting this sight for a couple weeks, just reading the posts and learning a lot. There was a part of me that thought that if I didn't join your group that the Lupus wouldn't be real. Big time denial, huh?
Has anyone else experienced the doctors being at a loss for a definate diagnosis? I feel that it would help me deal with the disease if they would just tell me that yes it's Lupus or yes it's Dermatomyositis.
In the meantime I'm glad to know that there are others that will help me get through this difficult time. Thanks so much for your responses and advise.

Elaine · Posted: Thu Nov 03, 2005 7:34 am Post subject: Thanks!

I appreciate your responses, full of advise and support. I've been visiting this sight for a couple weeks, just reading the posts and learning a lot. There was a part of me that thought that if I didn't join your group that the Lupus wouldn't be real. Big time denial, huh?
Has anyone else experienced the doctors being at a loss for a definate diagnosis? I feel that it would help me deal with the disease if they would just tell me that yes it's Lupus or yes it's Dermatomyositis.
In the meantime I'm glad to know that there are others that will help me get through this difficult time. Thanks so much for your responses and advise.

hatlady · Tiger Joined: 16 Oct 2004 Posts: 810 Location: Illinois

Oh my -- for MANY of us the diagnosis takes YEARS. Docs seem to either say "you're just tired" or miss doing the right tests, or your tests may not be absolutely definitive.. Often our test results (especially the AHA) seem to be exactly opposite our symptoms - looking really good when we feel really bad.

Just be sure you're going to a rheumy and a primary care doc that you can trust, and who listen to you. If they say "suspected lupus" well, that means they're still not sure.

Hugs -

TracyDawn · Posted: Fri Nov 04, 2005 12:20 pm Post subject:

Elaine {{HUG}} I am so sorry you are in the medical limbo. I have just left there after being in it for 7 years! It's awful. I've heard everything from you are depressed, you are just tired, it's this or that. Lupus is really hard to diagnose for some people and for others it's easy. A good dr that listens is key to your overall health I think. {{{HUG}}} I really hope they give you an answer soon.