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New Member

Date Joined Jul 2013
Total Posts : 16
   Posted 7/9/2013 9:59 AM (GMT -6)   
I am a 37 year old mother of a 19 year old and an 8 month old. I am hoping you may be able to give me some advice as I am at my wit's end right now. So, starting back in May, I went to the doc for a sinus infection and to back that up, the very first symptom I had was I felt the right side of my tongue "swell" and it felt like I had gone to the dentist. It was weird, and was very intermittent, but when I went to the doc, she told me everything looked fine. Well, I got on Amoxicillin and a nasal spray - good enough. Continued with a little of the tongue issue but was intermittent. One week later, I was at work and all of a sudden, it was as though someone was squeezing my forearms and I could hardly write. I was terrified. As the day progressed, it subsided but I went to the walk in in a panic. The sinus issue was still there as well. So, the doc said that the arm issue was likely something physiological related to my sinuses opening up and gave me a stronger antibiotic. By the following Wednesday - I still felt miserable so I was able to get into MY doctor. He was perplexed but felt as though I has some serious sinus stuff going on. In the meantime, I was having occasional muscle fatigue, and still the issue with my mouth. I also noticed that when I eat, it would really tug at the back of my mouth. So, I read some things online and it said to eat some sour things - and eventually the swelling on my face and in my tongue went away. My doctor gave me steroids, antibiotics and I felt great on the antibiotics for 5 days. He ran ANA, Sed rate, Vitamin D - you name it , he ran it. All came back normal except for the Vitamin D - severely deficient. So, I accepted that - he also wanted to put me on an anti anxiety med but I refused because the only thing stressing me out is not knowing what is wrong with me.
Well, I continue to have the issues with my arms, and now in my legs, the Dr. suggests possible Fibromyalgia? All I can do is imagine the worst. I have worked myself into a tailspin. I believe I have times when things flare up - 2 weeks ago, my arms turned red, and my face turned red in the T zone area every time I  ate certain things. And here I am again, the arms are red, weak, and my face feels almost sunburned, and I have diarrhea during these times - and then two nights ago, I awoke with aching thighs and they are now a little weak.  In addition, the area under my jaw on both sides is swollen and tender. I had also went to an ENT for the jaw and he had no idea - told me to see a dentist (but I swear it's my salivary glands). Can you help?? Any ideas? My PCP is hesitant to send me to the Rhuematologist with negative test results, but after everything I have read, I wonder if I have Lupus? Oh, and I am also losing weight like crazy - and they have "ran every test possible" and find nothing.
I hope to hear from you, I am so lost and miserable.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 7/9/2013 10:38 AM (GMT -6)   
Lupus is diagnosed by having 4 of 11 symptoms, not by blood tests. The decision (by the PCP) to bypass the rheumy isn't accurate. Not only does a rheumotologist diagnose auto-immune diseases like Lupus and Sjogren's, a rheumy would also be the right person to see for Fibromyalgia.

Even if you don't decide to see a rheumy, please see someone else -- these are not particularly rare symptoms and it seems odd that the PCP can't come up with anything.

Come back and see us!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Jul 2013
Total Posts : 16
   Posted 7/9/2013 10:52 AM (GMT -6)   
I want to see a Rheumy, and that is what I am going to request for sure!
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