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Life With Lupus

SLE newbie


#1

Hello everyone. My name is Sue and I was just recently diagnosed as having SLE through blood work, and all my dr told me was to look it up online so that I know the type of things to expect from it. No one in my family has ever had this and I don’t know anyone that has it. I’m looking for any help, support or on-site I can get on SLE. Thank you all in advance


#2

Hello. I am not sure why the doctor ran an ANA on you unless you may have experienced some symptoms or to rule out the source of another abnormal test result. There are many sites, including this one, that can give you info and advice. This is a link to WebMD https://www.webmd.com/lupus/default.htm
Good luck


#3

I had just switched family dr and he decided to do a full check up including blood work for everything and that’s how it was found


#4

Are you seeing a rheumatologist if not u need to find one hopefully a good one cause you will be dealing with the most. How old are you and how long have did u get diagnosed


#5

I’m not seeing anyone yet as my friend said we would just keep an eye on it for now. I am 42 and was diagnosed a couple months ago


#6

Hello There,
I am sorry that your Dr. left you in the dark about “Lupus”.
I have had it for 20 years and can tell you a few of my experiences.
Dry, Dry eyes and skin. Get some RETAINE eye drops (on AMAZON) and always use them at night
CEREVE is a very good skin nourisher to use after a shower all over.
Your immune system is compromised and so your white blood cell count may be low. When it is low you will feel drained and tired. Those are “LUPUS” days. Just give in to it and do only what you HAVE to do.
Get on a vitamin regiment that includes a multivitamin, vitamin C, vitamin D and a probiotic that address the immune system.
You may experience muscle and joint pain that varies from day to day and NSAID (Advil or generic of it) will help you out on those days.
Get out and walk for exercise if the weather permits and I promise you will feel better. Bring headsets and listen to music and you won’t feel it to be such a drag.
I am so guilty of breaking the rule of foods to eat or not eat.
You must know the healthy foods are salads, fruits & vegetables. I like only sweet yogurt and have one every day with raspberries, strawberries & REDDI WHIP on top! Really good and filling.
Still, I know that my sweet tooth is my biggest enemy and may be yours also.
We are not perfect beings so do the very best you can and yes,…cheat sometimes. Plan on relaxing after a “cheat” as your energy level is not as good as when you eat the healthy food.
Most Lupus people have irritable bowels and may need SENOKOT or SENNA tablets to keep things moving! Take as needed and experiment to find out how much helps you personally.
Go to an Endocrine Doctor to have your Cortisol level checked as that frequently can be a problem and dangerous if too low. Your GP should be willing to refer you for that kind of doctor…
There is so much more I could tell you but each Lupus person has different symptoms and you will figure out what your major symptoms are and read online the best way to deal with them.
I hope you are seeing a Rheumatologist as that is the doctor who manages Lupus. If you are not seeing one then get a referral from your GP.
I find that keeping busy at something I enjoy takes my mind off of my problems. Old movies,reading, any hobby, whatever YOU enjoy.
It is hard to make commitments when ask to do something with your friends. Let your closest friends know that you have Lupus so that they will understand that you may wake up with a “Lupus” day and just not have the energy to follow through on plans.
Simplify anything you can in your life and take care of you FIRST!!!
Have any questions you can always ask. Take care, Linda


#7

How very true I’ve learned take one day at a time