Lupus and testing

[123becomi]

I feel your pain I have been not right for a while and since I am 42 I figured it could be menopause but when the pain started I still thought it was a passing thing til the pain got worse and worse and I got tired and more and more tired to the point I can sleep all night then wake up take kids to school come back and lay down and sleep til they get out of school. I can get nothing done unless I push through terrible pain and fatigue to do so. I also have dizzy spells all of a sudden and severe abdominal pain. Finally told my Dr I cant deal with it I need to know what is wrong!! She ran tests and told me clearly with out a doubt I have Sjorgrens disease and Lupus SLE... I do not have the redness of the face but am increasingly sensitive to the sun which is a problem since I live in AZ. The rhuemetologists however says my joints are over worked and wore out and I am dehydrated. Haha funny guy did not even take a blood test and decided I need water and rest. Well guess what I have 3 kids to take care of and that is not an option for me as well as feeling like I do is not an option. I am however getting a second opinion as my primary referred me to a new specialist in a neighboring town.. Crossing my fingers and praying to my God that I will in fact get answers. I do not want Lupus but, if I have it I want to make sure I do what I can to minimize the symtoms.. My thoughts and prayers to you and wish nothing but blessing in your ventures to find out what is going on with you!! I think you need a second opinion. I also was told by a friend who has Lupus that if you are not having a flare up when you go to the Dr. the tests will show negative, as the disease is inactive and quickly goes for active to inactive and back active again. Dr should know that!!!

[lol-lou]

Hiya you need blood tests. A second opinion is a good idea. I know for me I had many test then biopsies as mine is discoid lupus. I wish you good luck with getting a second opinion x

[dgleds]

ya its funny...sometimes rhumeys are insulted a gp diagnosed the disease...Id push the specialists for testing, "you would like his expertise on the subject"...It was a orthopedic surgeon thought I had mild rhumetoid arthritis.,.but he sent me on to a rhumetologist. For the first 5 minutes of my visit he was saying, "Isnt it funny your orthopedic surgeon diagnosed you with RA"? Then few minutes later he said, "I think you have lupus"...I was dumb founded;( Asked how he came to that? His reply, "What else would it be"...At that point I thought I was going to die..He never said how bad it might be etc. I had to tell my daughter waiting in the reception room...Wasn't till 3 months later he said its mild...duh doctor! He isn't the fav of rhumeys, but the fav ones are super booked, and I had strings pulled as fav to get into even see this guy...

I was diagnosed on just my ANA test and some inflammation...and4/11 questions yes...all around post menopause, and also hypothyroid times...STRESSSSSSSS too

[sheenas121]

I have lupus and sjg 8 years and lots of other wonderful illnesses.. And children.. 2nd opinion or not if its lupus, menopause will help it, and can reverse symptoms.... If lupus you don't necessarily need an ANA positive blood test to diagnose, so if lupus keep out of sun even it was for 5 mins as can put you in flare... do use high sun cream, no direct sun keep in shade, use umbrella, wear a hat, uv clothes, etc.. rest as much as you can... Do things in stages not all at once this will give you more energy.. read lupus website etc...

Normally lupus will make you Tired And if over doing it will triple your tiredness... trust me I know and still over do it on occasions and regret it...

Talk to your children and explain if they understand I call it mum needs time out and they know now that I need to sit or sleep for half hour or so. Set an alarm..etc..

learn to live with it which is hard but then it becomes a little easier... not but you start to recognise what you can and can't do.. your limitations...

more advice email me...

[e-mail]

Much love and hugs to all and keep smiling xxx

[debbie1951 in reply to sheenas121]

Thank you for the reminders. You have stated them very clearly. I am off to a beach vacation with my family. I needed these reminders as I am not having a good day so packing will have to wait to tomorrow.