Posted 3/25/2008 12:37 AM (GMT -6)
Hi, I have not been dx with lupus, although my GP thinks thats what it is. How ever it does not show up on blood work. But I have not been to a rheumy for well over a year. I just go frustrated with the rheumies and the GP. I have a very love hydroxy 25 vit. D level. But the rheumy I last saw told me it was because of being in perimenopause. She said that studies have found women in perimenopause are low in vit. D. I had to the doctor check mine again last week. My vit. D is fine, but the hydroxy 25 vit. D is very low. I didn't get a chance to ask anyone what the difference is. The chiro has told me to get liquid drops, they are the best he said. But it's like needing mega doses to try to see if it goes up. there is a doctor at Hershey medical in PA that specializes in Vit. D deficancy, he is also a rheumy. Our insurance will be changing April 1, I am hoping I still can make an appt. with him so it's covered and try to get some answers. I have a friend who has lupus and she said my symptoms sound like hers in early stages. But the symptoms of fibro are so much like lupus. The ironic thing is, I have been having major back pain, mid to lower. I saw the orthopedic doc and he did a spect scan and MRI and he said that my arthritis isn't from the fibro, he said there is something else going on that I am to see a rheumy and get checked out. I have never seen a serious face on a doctor since dealing with these symptoms.
As for the sun. After being out in the sun for a little bit, I get exhausted, my face turns bright red and I feel flu like sick. I get these little red spots for a couple of days, not many, but they are red for a couple of days, then they turn a crusty light brown, after a while they will look like they are a light colored mole or a birth mark color light brown. Some of them grow larger in size as time goes on. My joints swell and ache. I have a lot of back pain and shoulder pain.
It's been frustrating so I have not gone to a doctor specifically for these things. the GP has given me vicodin for the pain, so I was taking an ibuprofin and vicodin to get me jump started in the morning along with a glass of Dr. Pepper. I was doing ok and could at least get up in the morning at a decent time7:30, but since I had a sinus infection back in Feb. I seem to not have come out of that, then 1 1/2 weeks ago I got the flu, major flu. It's like taking two steps forward then ya get sick and take 12 steps back and have to drag yourself around to try to work. Just unreal.
I was also treated for pneumonia the other week, which I have asthma and COPD and the doc nor the CPA did not do a chest x-ray, I had to insist on one today. I am thinking there is pleurisy in there. I get very short of breath. I get jabbing pains in the chest into the back. the CPA did a EKG Saturday and felt my heart was ok. She said they are doing a study on zithromax how it may help fibro.
Do you get bouts of not being able to sleep at night? this happens while in a flare for what ever I have.
I will be trying the new rheumy though. I want her to take the blood work all over again and see what she says.
take care and thanks for listening. I just don't know where I should be, here or on the fibro forum or the lyme forum
back to square #1- off meds for now-dx with fibro. Have a positive ANA. . Pain reliever. lodine- possibly neurotin 300mg, (not sure about that yet) sublingual B-12 , Chronic shortness of breath, sinus infections. Asthma/COPD.