My mother has just been diagnosed with Lupus. She has a hard time breathing, especially in hot weather, has the butterfly rash and a disc rash on her leg that has eaten down almost to the bone in her leg. She has headaches and joint pain, stomach problems and fatigue. Her colonoscopy has also shown black spots on her colon that her doctor is unable to determine the cause. She also has a detached retina.
Any suggestions for her from any of you who have dealt with this or have a family member who has? How is this treated, and can she do things to change her lifestyle that will help? Her insurance is very limited and her doctors are not helping. She is miserable....
ETA: She has been checked for so many other things, colon cancer, diabetes, etc - she has none.
Thanks moms.
ETA: I should clarifiy - she was diagnosed with a "milder" form of Lupus in her 30's.....she just never sought treatment and the symptoms subsided for many years. I cannot recall what she said the difference is between what she was diagnosed with then versus what it has developed into (worse form of lupus not all will develop). Hope that makes sense!
I have a girlfriend who has it, Doctors make all the difference in the world! I took her to KC for her doctor who moved there from Wichita. She really needs a doctor who deals with Lupus...if you need the doctor my girlfriend goes to email me at ____@____.com and I will get his name and info for you.
I know this is frustrating for her and you as well.
I agree with what Molly said. My mom has lupus and she regularly sees some sort of special eye doctor concerned with the health of her eyes. It is a scary autoimmune disease as it attacks the organs. As Molly said, the best thing she can do is keep up on her meds and pay attention to any signs that her body may have a problem. My mom's lupus has attacked her joints, her pancreas, and her kidneys. Her kidneys took the worst hit, shut down and she had to go through dialysis and a transplant. That's where I say pay attention to the warning signs. Kidney disease symptoms are things like fatigue. She was working so much that she just thought she was tired. It never dawned on her that her kidneys were shutting down!
Also, watch sun exposure and when she does go out be sure to wear protective covering, ALWAYS wear sunblock, heck even bring an umbrella or parasol. My mom has to watch her sun exposure a lot.
I've watched my poor mom be in so much pain b/c of it, but again, I think the most important thing is to keep up on meds. If you don't like a Dr. get a second opinion. Her rhumatologist (sp) was terrible and she got another that is WAY better. It can't be cured, but it can be managed. Best of luck to you!
I have 2 immediate family members with Lupus - m y Mother and Sister. All those symptoms you mentioned - not all are Lupus related. Has she been checked for diabetes? It's kinda late in life to be diagnosed with Lupus, usually it's found by 30 y/o or sooner. Maybe see if she can be checked for Rheumatoid Arthritis, colon cancer, COPD, etc...
My Aunt has it. She is doing pretty good. It cannot be cured, but controlled with medication. She should not drink alcohol, but does sometimes anyways. She should have her eyes checked often. It attacks the eyes as well. My aunt was jumping on a trampoline and her retinas detached. Surgery should have corrected it, but the doctor butchered her eyes and now she is legally blind. The retinas detaching was from lupus, not the blindness, but its also good to have them checked regulary so stuff like that doesnt happen.
She will be ok, as long as she takes care of herself.
If it is lupus the medical community will prescribe her medication that could help. I am A Shaklee distributor and I have seen people improve with proper nutrition and supplementation as well.
Be sure your Mom is getting enough sleep and exercising. People with lupus are usually asked to stay out of the sun. I'd consider a detox and avoiding artificial sweeteners, additives...... that sort of thing, if it were me. There is an array of vitamins that could help her improve. If this is something that you would like to know more about shoot me a message and I'll send you a list.
We all make our own choices about our health and what we believe in. You are looking for lifestyle changes..... Now ask yourself whether your Mom wants to try these alternative things, or you want her too. If she is not into it you cannot control her choices.
Best of Luck. I'm sorry. It's hard to watch your Mom suffer.
My mom has lupus(she was diagnosed when she was in her early 30's and is now 62) and my older sister was just diagnosed with lupus earlier this year(she is 38). My sister is having a hard time with it, but she also has other health problems(just diagnosed with thyroid cancer, had her appendix, uterus and gall bladder out- not at once though) My mom also has heart problems. She controls both with diet and exercise. She walks a couple miles every day and she really watches what she eats. Lots of fruits and veggies, little or no milk products, very low on sugar and refined foods. She has also switched to salad master cookware- it is very expensive, but it really has changed her life. She also has to be aware of the stress in her life- more stress = a flare up and she is sicker longer. They moved from Utah to Arizona because she couldn't handle the cold.
If you want more info- PM me and I will send you her email or you can give me yours and I will get it to her.
~C.
A friend of mine has lupus but is largely symptom-free by taking a comprehensive food supplement. She also failed 2 colonoscopies in the past, has arthritis (hip pain) and had osteoporosis. The osteoporosis has reversed back to osteopenia, the colonoscopy was successful and her colon issues have resolved, and her breathing is great. If you want to PM me and maybe talk by phone I would be happy to give you some info and some hope!
Apparently, there are 4 types of lupus. It is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems, including your joints, skin, kidneys, blood cells, heart and lungs.
I had a dog with lupus, but don't know of any human sufferers personally.
Here is a very good source for learning more about symptoms and treatment:
http://www.mayoclinic.com/health/lupus/DS00115
Lifestyle & home remedies include getting enough rest, exercise, eating well, not smoking, and limiting sun exposure.
S.:
I'm sorry that her doctors are not helping. Can she get second opinions?
Please contact me privately...i'm worried about you.
I will be praying for your mom.
Cheryl
