View Full Version : i'm new, need advice

06-26-2008, 02:29 PM
Hi, I just signed up to this board. I am new to the lupus game although I have had all your same symptoms and more. I have been going to the doctor for 6months now trying to figure out what is wrong with me. I have degenerative disk disease, osteoarthritis, malopathy, bone spurs in my neck, so much pain in my left hip and can hardly walk sometimes, my throat is swollen and it is hard to swallow, knee problems, lung problems, on and on. All of my bones hurt off and on too. After going to primary care, a surgeon, i took an ana test and they said i had to go see a rheumatologist the other day. they are doing more tests and i am having a ct scan done monday on my lung and throat. When my surgeon asked me if i had ever been tested for lupus i said no. That is when i took the ana test. When i started reading all about lupus i was amazed. It was so nice to put a face to my pain. I have lost half my hair. Has any one of you lost alot of hair? Will it grow back? Trying to get doctors to listen isn't easy. For a while I think they thought i was nuts i had so many different health probems. I cant even fucntion with out my pain medicine. I have severe fatige. I take a anit-inflamitory and tramadol. and hydrocodone at night. I am worried they will stop giving me medicine. I would be in trouble if that happened. I have always been a "go getter". I am a happy person that tries to be possitive all the time but this pain is really getting me down. I don't know what to expect. My rheumy tried to say he thought only one of my syptoms sounded like lupus, it made me angry because i know better. I have researched this disease to death. Is it common for the doctors to be that way? I am just ready for an official diagnosis so i can move on with this and try to get better. I need advise. Please help.

06-26-2008, 03:07 PM

Welcome to the forum. Your story is all to familiar. I suffered for years and years before I got a doctor to thoroughly listen to me. I think that it is terrible that doctors don't want to listen and a lot of times act like there is nothing wrong with us when we know full well that there is. The sad fact is, is that a lot of doctors do not know that much about this illness and Lupus is a strange illness. Lupus can mascarade as so many different diseases. There is no cure for Lupus and it is a chronic illness, but it can in most cases be controlled by medications. I have had SLE they believe since the age of 5 years old, but I did not get diagnosed until I was 36. I guess in my case the Lupus symptoms were not severe until then. I lost most of my hair too and yes it did grow back in. My hair is not as thick as it once was, but I definitely do have hair down to my waist again. Thank heavens for that. I hope that you can get some answers and that they help you out.


06-26-2008, 08:59 PM
I feel so much better. Thanks for the reply. It feels so good to read all these stories and know i am not alone or crazy. I have spent hours today just reading all of these stories. It has helped me more than the doctors have at this point. God Bless all of you.

06-26-2008, 09:25 PM
Hi Mamashell -
I too have been sick for a very long time, however, its taken years for doctors to finally admit that it is lupus, despite a negative ANA. Because of this, I have not been able to work, be active like I used to, etc. and have literally spent months and months in bed. I want to tell you, however, that since Ive been on prednisone and plaquenil, my pain has subsided enormously. I am not able to take any type of narcotic pain medication (I was on heavy doses for three years and it caused me alot of problems) so I rely on anti-inflammatories. THis is all I need when Im on the steroids. They decrease the inflammation immensely and thus, the pain is much less. I would not need pain medication right now if I did take it. So, if you are put on a medication that actually starts treating your symptoms, you may not need as much pain meds....so you dont have to be afraid to not have any. WIth the steroids and plaquenil, you are acutally treating the source of the pain, instead of just masking the pain with the pain meds. You may still need some, but chances are you will need alot less if they start treating you properly.
I hope they find out what is going on soon as start treating you as soon as possible. You will begin to feel normal again!! Good luck, welcome and keep us posted!!
Love and prayers -

06-26-2008, 09:28 PM
Well welcome to the familiy I am so sorry about everthing that your going through pain doctors etc anyhow my name is gena 21 and am suffering from severe hair loss its everywhere I just had a baby 4 and half months ago so I don't know if it is linked to that I have muscle pain in my legs but thought it was from having flat feet I took a blood test and it came back positive for Ana and I tried asking my doctors nurse about what it could mean and she brushed me off and said that's where the doc stops you have to see a rheumy and when I was awaiting my blood test it sucked and when I got the results I cried and am still confused my life feels horrible my family has been crying etc I don't know what to think

06-26-2008, 09:38 PM
Dear ScaredMom -
I have read your other posts as well and need to agree with the others ....
Lupus is in NO WAY always a deadly disease. As a matter of fact, there are a very small number of cases that lead to death. As you can see here, honey, people all over the world have this and get up and go to work everyday, take care of their children, have lives....
Yes, there are flares of the disease that are really lousy. But there are medications that help with these. You will have to modify your life, for sure, but you also have to do that with high blood pressure, diabetes, MS, and many other serious disease. Believe it or not, if you read some of the stories here, you are actually one of the "lucky" ones - being referred to a rhuemie so quickly and all. Many, many people have clear cut symptoms of this disease and are brushed off everyday. They remain sick and untreated. Most of them, also, are still alive as well. And thats WITHOUT treatment.
You need to look on the FAQ sheet here, and the basic info to start to reassure yourself that this is not something you have to fear for your life over....Millions of people have lupus, and you wouldnt even know it....
Please start reading - your family should too - and learn what this disease is all about. Stick around here for sure, we understand your fear, but trust the info on this site - it is accurate....
Please go enjoy your beautiful new baby....Also, if you get Dx'd you will probably be put on medication right away that will help stop your hair from falling out. Mine has stopped after only ONE month on medication. My pain is MUCH better, I have very little fatigue, no more nose or mouth sores, less frequent headaches.....all my symptoms are currently under control with a little bit of medicine.....please try and relaxxxxx........you will be OK....
With love and prayers -