View Full Version : Living with Lupus

03-22-2007, 01:06 AM
HI, my name is Amy and I suffer from many symptoms related to Lupus. I have had a Positive ANA. Not sure if this was drug induced or not. In 2004, I developed Diverticulitis with an abcess, I had a full blown infection. I was hospitalized and treated with massive doses of antibiotics. At 6 weeks, I was brought to surgery for a bowel resection. Shortly after surgery, my significant other pointed out to me that I had 2 large areas of hair missing from my scalp. I also suffer from painful arthritis in the knees and shoulders, Had a kidney stone, suffer from sleep apnea, Have a raised rash on my face and occasionally on my torso, have extreme fatigue and suffer from obesity. I am very depressed over my situation and find it very hard to function on a daily basis. I suffer from panic attacks which wakes me out of a sound sleep. I am so thrilled to have found this support group. I have a hard time getting across to people how badly I feel and they just dont get it. They cant understand how one minute you can be fine and the next be so miserable. I have had 2 lupus flares which came out of no where. Has anyone has a decreased libido? I am finally going to a doctor who is going to start me on a treatment plan. I was seeing a doctor who did absolutely nothing to help my symptoms. I am somewhat optimistic now where as before I felt doomed. My older brother also suffers from Lupus and My mother had rheumatoid arthritis. I had symptoms in my late 20's and had steadily gotten worse over the years. Doctors wrote my symptoms off as depression but I always knew there was something else going on. I finally asked for an ANA after the alopecia was discovered. When the test was positive I felt like all my feelings were validated. Thanks for an open ear and God Bless!

03-22-2007, 03:01 AM
Pumpkin I am the wife of a lupus sufferer and do know the frustration of trying to get a Dr. to listen and find out what is going on.
My husband was ill for nearly two years, and for a while, we only looked at the cancer that he had, but after his operation, which removed all of this, he continued to be really ill, finally going into seizures on evening.
This was still put down to meds that he had been taking for 8 yrs without any problems , so in sheer desperation, I started to look into Lupus. I also obtained copies of his blood tests and along with the data that I obtained and the rash that appeared when he had been in the sun and the fact that his Aunt and one of our sons has Lupus, I finally got an answer in the positive.
I can assure you that you will feel better once the treatment kicks in .
My husband was only diagnosed three weeks ago and is now taking prednisolone and the difference is dramatic.
Before he was diagnosed, he could hardly walk and admitted that he was nearly at the stage of taking his own life.
Now he has been helping our son and myself , paint a house and do other renovations. He does get very tired, but it is so wonderful to see that he now has interest in life and a lot more energy.
Glad to see that you have joined us and I do hope that you find all the support that you need here.

03-22-2007, 07:13 AM
Hi, Amy. I think many of us can feel for your frustration in trying to explain this disease to other people - it's hard to explain that you live from minute to minute, and never know how you will feel the next day. It makes it hard. The good news is that as you learn more about the disease, it does become easier to manage the ups and downs.

One thing you will need to be especially careful about is reminding doctors about your history of diverticulitis - because some of the lupus medications like prednisone can cause GI problems.

Welcome to the board!

03-22-2007, 07:25 AM
Hi Amy!

Welcome to the Forum! :D I'm really glad that you found us! :D

Please just remember that anytime you need advice, support, information or just to vent or chat, we're all here for you! :D

I can fully understand your frustration about trying to get other people to understand your condition, as will many others on this board, as I'm sure you can already see.

I sincerely hope that you will begin to feel much better once your treatment is started. Keep us posted!

Keep well! :)