Thought I better post an update before I set myself up for a lengthy one!
I have been feeling better! I feel more like myself. Some people tell me that I have color in my face again, I say it must be the self tanner; either way, I don't look or feel as lifeless as I did just one month ago. I like that!
I've been able to get out a little more to see some friends and family, which has been great. Still tough to get out later in the day, but I'll take whatever I can get. It's nice to feel like I'm a part of the world again.
I am also happy to report that little by little, I'm starting to get my appetite back. I put down a cheeseburger last night and it was good! I am also up to a 5 minute walk. My enthusiastic walking buddies, Pronto & Rosie are enjoying being out and about just as much as I am. Although I won't be starting physical therapy for a month or so, we are going to attempt to get the pilot light lit in the pool for the first time in 8 years so I can wade around a little.
Last Friday, I increased the Neurontin dosage to 300mg at bedtime. I was pretty tired this past weekend, but it also rained the entire time - so who knows. I have actually been sleeping, which is amazing. I wake up a little here and there, but the difference has been truly remarkable.
My guess is that within the next week and a half, that my "tired" feeling will pass, and then as I increase the Neurontin dosage again - I'll be tired again. I think that the Mayo was right in that Fibro can increase medication sensitivity. We'll have to see if this pattern repeats itself.
Last Thursday I spent 2 1/2 hours in the MRI tube, which was not awesome. This time I had thigh and arm scans, then thigh and arm scans with contrast being pumped in via an IV. When I told Brad after the appointment, he was most shocked that I made it 2 1/2 hours without having to pee. I too, was impressed. Much improvement in many areas, you see.
I am really anxious to see what the MRI results are. Apparently the contrast will show the Myositis activity in the tissue more vividly. They did take the images in both settings though, so there will be a lot to compare. The last MRI was in December, right before I began taking Methotrexate. No improvement had been shown at that time, so it makes me even more excited to see what they look like now!
When I met with Dr. Grandits (Rheumatologist) two weeks ago she made a comment about the activity in my muscle tissue being the "worst case" which shocked me. No one had ever said that to me before... probably a good thing. She'll be following up with the Mayo Dr.'s to see what their thoughts are on my tissue damage versus the blood work which appears to be normal. This is great since that is the reason for my feeling frustrated upon leaving Mayo the last time. I still needed answers. More on that soon, hopefully. MRI results too, as soon as I have them.
Much love to you all. Thank you for your positive energy and prayers - they're working!