View Full Version : Hi everyone
03-24-2009, 07:54 PM
my name is Faye, and I have just been diganoised with lupus I really dont know very much about this desease and need to know what im faceing. I was diagnoised with fibromyalgia about 5 years ago and have had some pretty weird experencies with it however I have had a lot of problems with it that other fibro suffers tell me they dont have,I am in constant pain and have developed gastroparesis,degenrative disc desease,osteoarthritis,osteopenia.tumors on my adrenalin glands,and many other things that I will not mention so as not to bore you, My most recent problem is that I cant remember things I was always a mutli tasker and now I have to make a list of what I have to do, I can do a simple thing like go to the grocery store and forget how to get back home I have had to call my husband for directions.I had been tested for lupus before but was told I didnt have it.however ive had a bad skin rash on my back chest and arms for about 10 years that will not go away so I went to a dermatoligist and he did a biopsy and it it came back as lupus.so I found your chat room and was hopeing that someone could please tell me if any of my symtoms are like your. I woul appreciate any info you could give me. I really need help with this one. Also my Dr said I have a long road ahead of me.And im wondering what he meant:unsure:
I'm Rob. We spoke earlier. I was diagnosed with SLE five years ago. Like you, most of us here have a painfully long list of symptoms, as well as other conditions on top of having Lupus. I've also have some bad rashes, although I've never had the butterfly rash on my face. My ankles and the inside of my arms are where my rash always shows up.
"I used to be a multitasker" is a common theme here. A few weeks back, I went to the mall in a town that I grew up in, and know like the back of my hand. I got lost. I thought I had driven my parents car that day, and I spent a couple of hours looking for it in the parking lot before I finally remembered that I hadn't driven their car in over a year, and I had my truck that day, like I do everyday. I forget how to spell simple words, and I simply draw a blank many times when talking to others. I get other symptoms as well-opressive fatigue, joint pain, mouth sores, pretty much the works. And I'm certainly not the only one.
Your Dr. telling you that you have a long road ahead of you means that living with Lupus can be extremely difficult, and you may have many lifestyle changes you will have to accept. Some are fairly easy, like staying out of the sun, wearing a hat, and coating yourself in spf50 sunblock. Others, like dealing with, or eliminating as much stress as possible, can be very hard to accomplish.
Lupus is no picnic, but it's also not an end, or reason to lose hope. Lupus can be controlled, and many, many people live with it for a long time, and thrive despite it. We have members here who have lived with it for 20, even 30 years. Myself-it's been five years since my diagnosis. Although it's been very hard at times, I'm by no means at deaths door. Has your Dr. or rheumo suggested a treatment plan and meds? Many of us take Plaquenil with good results, and there are other drugs that can help keep Lupus in check as well.
We are a pretty laid back group, and there are many collective years of experience here from people who live with Lupus. Welcome to our group. Please make yourself at home.
03-24-2009, 09:20 PM
hi faye and welcome to the group,
i was diagnosed with fibromyalgia 13 years ago, and even though i had a positive ana all of this time, i was only diagosed with lupus 7 months ago. like you, i had so many symptoms that went beyond fibro, but until recently, i did not have enough to diagnosis lupus.
so sorry to hear that you have joined our club of lupies, but you have come to the right place to get lots of support. just read some of the posts, and you will find many of us with similar symptoms.
yes, i have gotten lost trying to drive home on a very familiar route.
best of luck to you, glad you found us.
03-24-2009, 09:28 PM
I havent been put on any meds yet for the lupus,I go back to my DR on april 6th, however I am already on many meds now because of my other illnesses,I am now takeing Lyrica,Hydrocodone,Clonazepam,Zanaflex,Omeprazole, Vytorin,Promethazine,Levothyroxine,Amlodipine,Cele xa,Robaxin,Ventolin,advire,Vitimin d,and a few others, I am learning to deal with the pain alot my husband encourages me to keep on keeping on. when I first learned I had Lupus I was terified I was told by many that you dont live very long with this lupus so I got on the enternet and found your group and started reading it has eased my fears alot, And I really really appreciate your help more than I can say. I havent learned to deal with the forgetfulness yet or the fatigue I have always been very active but by the grace of God and help from people like you who care about others im sure I will. Im looking foward to chating with your group it makes me feel like there is hope after all. I hope to hear from you again, and once more THANKS!!!!!!! Faye
03-24-2009, 09:45 PM
Thanks for shareing your info with me. I hope all goes well for you and im sure this is a wonderful group of people. Im looking foward to hearing from you all. Faye
03-25-2009, 07:28 AM
Glad to see you here.Sending you gentle hugs and hope you feel settled here and get all the info you need to help you along. You'll like it here, everyone will help you and if we dont know the answer, just watch as someone comes along with their knowledge. Go and look in the arcade too, such fun.
HOpe today you are feeling ok.Catch you later:yes: