Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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stenvikm 01/21/2010

I feel like my face is on fire and my skin hurts even my scalp , very bad sweets and chills all day long and night , my right eye is in alot of pain. Going to my GP Friday I have been tested before but had Neg results for lupus getting tested agian, also my fingers turn white all the time, I'm going to bring her a list and hoprfully get some help I also have RA and graves and I do see a Rheum but she is 350 miles away I told her about the rash she just sayed take tylenol before my injection of cimzia and metho and thats all she said that was 4 weeks ago and its getting worse so im hoping something will happen Friday.. I read alot of your post all the time even thou im not dx with lupus I still think the people in is group is wonderful. Thanks so much..Marie

deleted_user 01/21/2010

Hi hun, I pray ever night for you and each one here.

Have you ever seen a hematologist(blood doctor) he helped me when no one could find the answer. I have lupus anticoagulant and Fibro and CFS and depression and anxiety.

I wish you well and pray that you heal and feel better everyday. Remember the LORD always carries you.

Gentle Hugs

deleted_user 01/21/2010

I am sorry to hear you are so sick. Do your hands get cold also. It could be raynauds. You really need to see a rhuemetologist to do a complete screening for autoimmune diseases. I don't know what taking A TYLENOL WOULD DO. Sorry caps. You need more than just an ana test done as they are often inaccurate in making a diagnosis. Is there another rhuemy closer? Wishing you the best and sorry you are so sick. hugs M

deleted_user 01/21/2010

Hi....I too am so sorry you feel so terrible. I was the sickest I have been this past year and am still recovering having to take new meds. You need to know something.....You have RA and RA can cause make you feel horrible with more then just joint pain. My father-in-law had it and felt horrible from it physically. He had all the same symptoms as you and he needed to be started on Plaquenil for it. It helped him tremendously and made him feel much better. You really need to see your rheumy. Maybe you can find one closer but you need to get to one. You may need to start different treatments to control your RA. It may be your RA which is causing you to feel so sick. Maybe your GP can even try you on plaquenil or one of the newer RA drugs. Please get to a rheumy. They are so much more knowlegable about all the symptoms ra can cause alone without having lupus. Keep us posted and we are all here for you.
hugs

deleted_user 01/21/2010

PS- You could have Raynauds which causes your fingers/toes to turn white red and blue, get numb, cold, etc. This can be common to have with any rheumatological disease (RA included). There is no real test or treatment for it though unless you get ulcers from it.

deleted_user 01/22/2010

Have you seen a dermatologist for the rash yet? Whenever I put in a call to my rheumy about worsening symptoms, if the rash is one of them, they tell me to see the dermatologist about that one. My rheumy is great, but his nurse is a real meanie. I don't know if they are all like that (rash issue) but she told me he didn't have the time to hear about minor issues like that and hung up on me. Ironically, my hemo got very upset when I told him about her attitude and he left the office and called my rheumy. Now that I think about it, I think the dermatologist is just more informed about the types of rashes. Sure the nurse could have explained that to me without being rude, but she might have been having a bad day.

The eye pain and skin pain has me wanting you to see a neuro also. Along with the sweats and chills. Don't want to worry you, but that is some of my symptoms for MG. Doubt very seriously that you have it, it's one of the rarest AI diseases, but it sounds neurological. I would have never thought that before, but I'm learning a lot right now.

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