I do not have a lupus diagnosis, so I hope I'm not crashing your forum! I have been researching to try to find a cause for my persistent symptoms and was hoping to get some input.
Symptoms: I have been diagnosed with Reynauds, after my fingers went white and pins and needles all winter. I have constantly aching hips and knees and lower back, and some of my finger joints are stiff and painful on a daily basis. I regularly have stiff sore neck and shoulder muscles and experience… read more
Hi Kara, you're most definitely not crazy. I would recommend seeing another rheumatologist. Your rheumatologist should know that all the tests to diagnose lupus is a lot of signs and symptoms and only when flaring would your tests be positive.
If you've been diagnosed with any autoimmune, such as Reynaurds Syndrome or hashimotis thyroiditus, the symptoms can be everything you describe. Have you had a bone density scan? That would rule out osteoarthritis.
I would also recommend joining lupus.org and reading and learning all you can about this disease. I hope that by switching doctors that you will get help. Keep in mind that fibromyalgia can also rear it's ugly head with lupus symptoms.
Hope this helps!
Hi. I hear you ladies. I'm an Ozzie too. If the blood test says no then our doctors dismiss it. I have been unwell for more than 10 years with every symptom listed on these pages at different times. But because I won't give in & have grit I have been diagnosed with all the obvious... Depression; CFS etc. Fooey. I love my life & don't have time for that. Finally found a specialist who says I am boring as I don't have anything less obvious than Lupus in Dec. ( go back for confirmation 1st feb) as I have at least 6 out of 10 symptoms. For a diagnosis they only need 4. He asked if any of the other multitude of specialists had examined me? We both laughed cause we knew the answer. Keep going the only thing in your head is your desire to be well enough to raise your 10 year old & dance at his 21st!
If you have already been diagnosed with Ranauds (misspelled-sorry), you already have an auto immune disease and could certainly have another auto immune disease that hasn't been diagnosed. Lab values change depending on whether or not you are in an active flare and for many other reasons. There is a diagnostic check list with 11 criteria some docs use for diagnosis. Keep a diary of symptoms and find a physician specialist who understands auto immune complexities. Good luck.
I have similar issue and I have thyroid problems too. I’m changing Rheumatologist as I had to drag any responses from her. She’d write a script for planquenil and say see me in 6 months. I’ve learned a lot from this team