Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hi, I am new to this forum. I was just recently dx with lupus after nearly 3 years of worsening symptoms and "watching" my progress. I thought at first it may be RA, because I had no sx other than all over joint pain and my joints were twisting. I still think I may have early RA, but a faint tell-tale malar rash and a rheumy who tested ANA finally revealed lupus. I honestly didnt have lupus on the radar, so I know very little about it and I am researching as much as I can. I am realizing that some things that I have been treated for separately may be related. Like, for example, kidney pain in my right kidney, which I've been told in past treatment by a urologist that it is enlarged. I'm on plaquenil, for about a month. I have actually had a day or two here and there without pain in my hands. Nothing really else, so far, but I understand it takes a while, and THAT was pretty miraculous, because I always hurt.
So how do I know when something is lupus and how do I know when it is something else? I already am kind of thinking the kidney pain, nausea, lump like feeling in my stomach and under my ribcage, coughing, throat pain, and ear pressure are the lupus, I had these symptoms before dx and was told it was inflammation. When is it not, and is this just my new normal?
In December I injured my shoulder had surgery in March 2016 after much therapy and a manipulation in October and more therapy, I still had pain in the arm of the surgery. December 2016 I started having pain in the other arm in the exact same places as the surgery arm. The therapist and doctors said it was over use. Making up for the arm that had surgery. I finally asked what arthritis felt like. I was sent for blood work and March 1, 2017 the orthopedic doctor told me the diagnosis and sent me to a specialist. On April 26, 2017 the diagnosis was confirmed. During this time my husband was having to do all the cooking and I was back to eating meat because he just couldn't fix stuff like I wanted to eat. Now I can see how my diet really helped the pain and fatigue.
Since then I've researched a lot and still don't really know anything. The medications used are immune modifiers or chemo drugs as best as I understand. I began plaquenil in May and was told it would take up to six months for it to fully be in my system. I was in so much pain while on it, The pain was so much worse than being on nothing. It was pain that I didn't have before and had so many other things happen to my body that weren't happening before I took it. I saw my Rheumotologist and stopped taking it. I only took it for two months. Now I am taking Celebrex and I feel so much better. I still wake up stiff and in some pain in the morning but I can function almost as well as I did before the diagnosis. I also take vitamin D and that seems to have helped greatly with my fatigue. Some references I used are "The Lupus Encyclopedia" and MollysFund.org.
I've always been an "as close to natural as I can be" kind of thinker. So this is where I am with all of this; I am the same person I was before this diagnosis. The doctors don't understand how this works and I know my body well and I chose not to put harmful chemicals in my body that they can't explain well enough to me how the risks outweigh the benefits.
I hope this helps you in some way. I too am trying to figure it all out.
25yrs ago it was being trailed on DOGS my dog could not get into the Car and when I have him 1 a week he was reborn.
Years later I took it with so much more.
IT IS NOW 15 YEARS SINCE I HAD LUPUS.
WENT ON SO MUCH MEDICATION AND HAD BRAIN FOG, GAVE UP THE HOUSE AND TOOK OFF NEVER TO RETURN HOME.
TASMANIA IS COLD, MY BODY ACHED ALL THE TIME. I JUST EXISTED.
I CAME TO SUNNY QUEENSLAND 11 YEARS AGO, AND SAY TO ALL CHRONIC PATIENTS, LOOK FOR WARMTH.
I HOUSE SAT AND FOR A LONG TIME WAS VERY SICK, IT WAS AT THIS TIME I GOT A NEW DOCTOR WHO SAVED MY LIFE.
I AM A SURVIVOR OF DOMESTIC VIOLENCE, EVERY SCAN I HAD COME UP WITH NEW FRACTURES ETC. IT WAS THEN THE DOCTOR GUESSED THAT MY HUSBAND WAS ALSO DRUGGING ME, AND SHE WAS STARTED TO HELP ME GET READY TO FLEE.
SHORT PART IS HE IS IN PRISON.
I AM NOW IN A GOVERMENT UNIT LIVING IN PARADICE.
I HAVE HAD CHRONIC PAIN ALL MY LIFE SURVIVING A ACCIDENT.
I ALSO HAVE A TERMINAL ILLNESS, FOR WHICH NIL CAN BE DONE.
LUPUS tests now come up low, Except for RASH.
EVERYONE'S ILLNESS IS DIFFERENT, SO YOU NEED TO LOOK OUT FOR ANYONE WHO IS TRYING THERE HARDEST TO BE CURED.
YOU HAVE TRIED DIET & HAVE SEEN THE BENIFITS
TRY AGAIN.
PEOPLE WHO I NEVER KNEW CAME UP TO ME AND SAID I NEEDED TO WEAR LAPUS LUZRY
CRYSTALS. I THOUGHT IT WAS FUNNY. HOW COULD A CRYSTAL HELP?
3 MONTHES 2 LADIES GAVE ME NECKLACES & THIS WAS THE START OF GETTING ME BETTER.
SADLY I GOT BREAST CANCER, MY SISTER DIED THE YEAR BEFORE AT 31YRS. MY MUM DIED THE YEAR BEFORE AT 68.
I NURSED THEM AT HOME.
SO WHEN I WAS TOLD I WAS NOT HAVING MEDICAL TREATMENT.
I HAD ALTERNATIVE TREATMENT AND CURED 9 YEARS.
AS YOU CAN READ THAT I HAVE GONE THROUGH SO MUCH, WHY AM I HERE ?
FOR 18MONTHES I WAS IN A COMA, MY MUM WAS TOLD I WOULD BE BLIND AND BRAIN DAMAGED, AS WELL AS LOSING THE SIDE OF MY FACE, MY SCALP WAS RIPPED OFF, WITH OTHER INJURIES.
I SURVIVED 62 YRS. AND I WRITE THIS TO THOSE WHO READ IT, NOT TO GIVE UP, BUT TO TRY AND FIND POSSITIVE PEOPLE IN YOUR LIFE, AND TO
HOLD ONTO H O P E.
IF I CAN SUPPORT YOU, I WILL BE YOUR FRIEND.
LOVE AND BLESSINGS.