Lupus Support Group

Hey everyone,

My name is Alli and I am hoping to meet new people to relate to and hopefully for me not to feel so alone with all of these symptoms. I have been feeling so much pain all over my body. I have been so depressed and tired. Also, I am just quitting smoking which may participate to my stress.

The disappointing aspect to all of this is that they haven't even officially diagnosed me! They ran tons of lab work and all of it was abnormal which I guess indicated Lupus. Today I am getting a biopsy on hands because I had a bad rash on my knucles and they thought it could be another Lupus symptom. I would love to hear stories on other peoples diagnoses and find support through my struggles. I am 24 years old, and this has been a five year struggle JUST for these answers alone. Everyone said it was in my head, all the Doctors that is.

Thanks and best wishes to everyone.

Alli

Hello and Welcome,

I am sorry for what you are going through. Many of us have had delayed diagnosis. My symptoms were ongoing for years before I was diagnosed. It was extremely upsetting but also a relief. I know that waiting seems like an eternity but realize how complex this is and doctors need to be thorough. My tests took several months and when all of my tests were coming back with abnormal findings they ordered every lab that I could have imagined (26 vials of blood) and when my results came back they repeated them to make sure there werent discrepancies and then came my diagnosis. I saw family practioners and also internal medicine for many years and they all pinned my problems on having a stressful job and thought it was an anxiety disorder. I guess basically they thought I was just crazy. I had one doctor that even told me that he couldnt treat me anymore because he felt like my symptoms would be managed best by a psychiatrist. I was diagnosed only by a fluke because I had fallen down a flight of stairs and my sister works with a doctor who specializes in Rehab and Sports Medicine. He took one look at my history and present symptoms and after my assessment he said "something isnt right with you." Granted he didnt know what exactly was wrong but he knew it wasnt right. Then he started with Xrays, MRI's, etc......I was passed on to Neuro.......Who passed me on to my Rheumy. Now here I am. I was very lucky because although I was sick for a long time I did not start having pain until last year. When it hit it was agonizing. There is nothing like a little pain to make you much more demanding of your doctors. This group is a wonderful place to help you through rough days and also to give you comfort. I dont smoke but others tell me that quitting is like death so I wish you a lot of luck with that. Please update us as you have more news.

April

Hi Alli and welcome to our group. The people here are wonderful. It helps so much to have a place to go to where everyone can understand what you are going through. Lupus can be so hard to pin down sometimes. I am sorry that this has gone on for so long for you. Hopefully they can make a firm diagnosis soon. I hope you post often.

Alison

Hi and welcome! I haven't been officially diagnosed yet but my family doc and my GI think it's lupus (blood tests and symptoms). I see the rheumatologist May 19 after almost a year wait. It is all new to me -- the idea of lupus, the possible treatment etc. but living with the pain isn't. I seem to have it in my joints -- I get joint pain, numbness, burning -- particularly in my lower legs and knees. I get low grade fevers and cold like symptoms often. I am so fatigued. I am now super sensitive to the sun (when I used to be able to be in the sun for hours). There are lots of other little symptoms. I joined this group in the fall of 2009 and a better group there couldn't be. If you have a specific question, just ask. Someone is likely to know the answer or point you to a place where you can get the answer. If you just want to complain do that too. You will get lots of support. I look forward to getting to know you and hope that you get some help here.

Hi Ali, I was dx when I was like 26 or 27. It is a hard road to travel. Not sure of what your journey will be with Lupus but one thing for sure is someone here may have some type of experience that you have. I dont' have any tricks other than to listen to your body. That is the most important, take your meds and make sure you have a good team of doctors. I would recommend an antidepressant to control your stress and a pdoc. Take care

Hi Alli and welcome to the group. I'm sorry that you have lupus but you have come to the right place for support. Lupus mimics other diseases, and not many doctors are clinically experienced with lupus to diagnose. Inexperienced doctors think we make the whole thing up when the symptoms and pain say otherwise. The rheumatologist is the best doctor to seek diagnosis and treatment. Even when lupus is diagnosed, some doctors are reluctant to start treatment and prefer to "wait and see". It's a long journey for us lupies to find the right doctor(s) who is willing to provide adequate treatment. I wish you health and hope that your doctor would provide adequate treatment soon. Marie

Hi Ali welcome to this fantastic support site where you will meet some wonderful and caring people who know what it's like to live with a chronic illness on a daily basis. It took three years before I was finally diagnosed with Lupus.....the doctors were looking at me like I was making all of this up.....it was a very difficult time for me but I kept on going until I got answers and I hope you do too. Just keep a positive attitude and ask a lot of questions. Anytime you need to vent, cry or just to share or ask questions please post as often as you need to or you can PM any of us here at anytime. Wishing you well

Eva