Help articulating symptoms?

I am having these crazy symptoms and it's like I can't articulate how they feel? My rheummy thinks connective tissue disorder or Lupus, but I am just in the beginning of my diagnosis journey. My symptoms sure "sound" like MS to me and compared to those I know, or friends of friends, my vision/tingling issues cry out more toward that end of things ... but the dr thinks Lupus?

I am tapering off Prednisone now - it was a 12-day burst, and I am on day 6, at 20 mg. (The peak was 40mg). He wants to know if the Prednisone improves or worsens the situation. I don't even know how to assess it!

Should Prednisone help with the tingling/numbness? It did seem to help my fatigue but only barely. I'm winded walking down my driveway to get the mail, ya know? On Prednisone, instead of having to sit after standing for 10 minutes, I can stand for 20. But the weakness is still there and just because I *can* stand for 20, doesn't mean I should. I get vision issues in my right eye, and intensified symptoms after I fatigue myself like that.

What about joint pain? What does that feel like? I don't think I have it. I have this sort of aura of pain - generalized and moving - that I can't seem to define. It's like heat and aching and discomfort - not pain persay - but it goes from my shoulders to my hands; not in a joint or a muscle specifically... and it waves around. I describe it as like a "northern lights" feeling. What is that???

And this tingling/numbness? I feel like sometimes there is cold water being poured inside my arms, or sometimes it is warmth. But the strange thing is ... I feel numb but I can still feel sensations?

Like my skin can feel pressure, but not the sensation of something. This is in patches all over my body, and changes and moves - though there are some consistencies. I have this every single day. The numbness is numbness - that is in my hands and feet, but spreads up my arms and legs. I have Raynaud's so my fingers and toes are always blue and red and white. :)


I just ... don't know how to describe this. It sounds so neurological and not at all what I hear when I read about Lupus. But I know real life and "textbook" descriptions are so different. Any thoughts? Heat, stress and physical exertion rev up the symptoms - but I am ALWAYS numb or tingling or both. Sometimes it feels like it is just my skin?

PS: Bloodwork is normal with an elevated ANA 1:160, speckled. MRI, echocardiogram, CT, etc all normal.

Post Edited (tinglyinnc) : 7/24/2013 12:21:16 PM (GMT-6)

I think you've done a fine job of describing your symptoms. You should be able to say the exact same things to your rheumy -- s/he will know the right questions to determine what you mean relative to the symptoms & responses to meds that help define your diagnosis.

PS. Everything you describe are fairly common Lupus symptoms -- but could also be a few other diseases as well. Diagnosis of these types of illnesses can take a long while as they are sneaky -- but the rheumy should be checking your responses to different meds as part of the diagnostic process.