frustrated! severe pain!

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Regular Member

Date Joined Oct 2009
Total Posts : 111
   Posted 11/12/2009 6:03 PM (GMT -6)   
Hey guys! It's been a while since I've posted. I've been doing great the last few weeks. I'd even thought that maybe I was just blowing things out of proportion. Maybe I just had some kind of viral infection that caused my joints to ache and the prednisone helped with the inflammation. Then, about 3 days ago the pain returned. My wrists, elbows, ankles, and shoulders hurt. I couldn't even open a box of mac and cheese last night! I still hadn't heard anything from the doctor about my Lupus panel-only that part of the ANA was negative and part was positive. So I called and was told they would call me back yesterday evening or this morning. Well, they didn't call. So I gave them a call and no one even knew what I was talking about!!! Finally a nurse promised she would get the results and call me right back. Well, she did. The result: everything within normal limits! What is wrong with me??? I don't know what to do. Am I just supposed to accept the fact that I'm gonna hurt the rest of my life and not know why??? Input, please???
Jessica, diagnosis: unsure

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 11/12/2009 9:22 PM (GMT -6)   
I'm sorry to hear you are in so much pain. Don't give up on getting answers for your symptoms. It can be very frustrating when you don't know what is going on. I hope you get some relief soon. Hang in there and keep us updated. You will be in my thoughts and prayers.


Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 11/13/2009 1:08 PM (GMT -6)   
Sorry Jessica. Please remember it takes many people years to get their diagnosis. I can't remember but are you on Meds to help with your symtoms? Even if you where to get a lupus diagnosis...they treat symptoms not the diagnosis. Sometimes I wish I didnt have a diagnosis because it is going to be so hard to get another insurance with out paying more to my insurance company than I make and their are many more reasons for me.

Do you have a rhuemy? Is the rhuemy the one that tested you? I skipped my primary doctor and went straight to a rhuemy because I knew their was a problem with my joints. At the time I thought it was RA but nope, it was lupus. Some rhuemy do not requre referals. You just have to research and find out where they are. I will keep you in my prayers and sorry you are in the limbo :(!

Regular Member

Date Joined Oct 2009
Total Posts : 111
   Posted 11/13/2009 4:50 PM (GMT -6)   
Thanks for the support! No, I don't have a rheumy yet. My husband just took a job here in August and we won't have any insurance until February! That is why I'm just seeing a general practitioner. Just hoping I can cope until we get the insurance. Just the lab test cost $765, and the cost of meds?, plus the visits of over $150 each! We paid those out of pocket, hoping for relief and some answers. The doctor did put me on a prednisone dose pack and I started it after the blood was drawn. It completely alleviated my symptoms for a month. After one day I could already tell a difference. But, since the tests came back negative I'm not sure if she will do that again? And my husband doesn't want me to keep "throwing money away on an idiot doctor".
Jessica, diagnosis: unsure

Regular Member

Date Joined Oct 2008
Total Posts : 119
   Posted 11/14/2009 1:23 AM (GMT -6)   
Oh wow Jessica, just wanted to say I read your email, and I feel for must be in the states? 'cause our medical in Canada's so different..I can't imagine $150 p/visit to see a doctor..let alone the $ you paid for a lab test. Way to go for getting what you've done already done. I'm sure that a good chunk of it's born out of necessity for help, but still...I agree with what the others have said with hang in there. Sometimes it takes multiple multiple symptoms for the ultimate diagnosis of the problem (sounds like you have tons, I know). It will happen. It surely doesn't fix everything when you know, as it doesn't stop new stuff from happening...but I always like to know too, 'cause then you can treat the problems appropriately...

Thinking of you,

<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.

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