Sunday, November 21, 2010

Lesson Learned .... the hard way.

So....I'm officially going with the fibromyalgia diagnosis. The tests all came back pretty normal. No lupus, no inflammation or rheumatoid factor. My magnesium was low, so I'm pillin' it up for that. There was strep in my urine, but i have no symptoms of a UTI, so we aren't treating it. I tested positive for h.pylori again (been there, done that with the zillion antibiotic regimen to treat it, so I'll talk to my GP about it and probably will just ignore it). I stopped the mtx and arthrotec and am slowly increasing my Lyrica dose from 75mg 2x a day to around 200mg 2x a day.

I'm not sure why, but....this week has been AMAZING!!!! I've had my first completely pain free days since July 2009! I had 2 of them! And the rest of the week the pain was minimal...maybe a 2 or 3 out of 10. It was great!! I also had a lot less fatigue.

I've been really busy. My photography business is booming, Carly and Jake had tech week this week for a show they are in. They performed Friday night (with cast dinner after), Saturday matinee (with cast lunch after), Saturday night (I said heck no to cast dinner last night because I was too tired!!!!), and today is the last show at 2:00. I'm photographer of the show and I also photographed Carly's high school pop choir show (which was LAST weekend), so vie been editing every moment of my barely existent spare time. Saturday night I was up till 3:00 a.m. preparing/packaging four lacrosse teams' photo orders and working on a collage for the director of the play the kids are in.

So, guess what? Today I really hurt and feel like crap. I felt my knees getting "warmish" feeling last night, but today~full-on pain. Ugh. My knees, fingers, and ankles hurt. I feel flu-ish and yuck. I still have to take the portraits of the actors today before the last show which means setting up backdrop, lights, etc.

I guess I need to learn to NOT overdo it when I feel well. It's had been so long and it was really nice to have energy and to not hurt again. I couldn't waste the opportunity to be productive.....

Still not 100% convinced I don't have sero-negative RA, but I guess 3 out of 4 doctors must be right.

Have a good day all and thanks for reading and for all your helpful and friendly comments.

Sunday, November 7, 2010

Four Rheumatologists...Four different opinions

Doctor one....Tests are all normal...Must be fine.
Doctor two....Undifferentiated Spondylarthropy or Seronegative RA
Doctor three..Fibromyalgia
Doctor four...Fibromyalgia AND something else that he needs/wants to figure out.

I saw one last (I hope!) rheumy on Friday.  He was very nice.  He took a lot of time before the exam talking to me about my symptoms,  my experiences with the different doctors, my feelings, etc.  After a thorough exam, he told me that he definitely agrees that I have fibromyalgia, but he doesn't think that's all I have.  He did a lot of bloodwork, so hopefully we will figure it out this time.  Once and for all.  He says that I should hear back from him by a week from tomorrow. 

Meanwhile, he said I should stop taking the mtx.  If, after a couple of weeks, I flare big time...then we'll put me back on it.  He took me off the arthrotec.  (which allows me to stop taking the kapidex for my stomach).  He changed my lyrica from 50 mg three times a day, to 75 mg twice a day.  (easier for me to remember---I always forgot to take my middle of the day dose of lyrica for some reason).  He wants me to switch from Effexor for my depression (that's NOT working) to Cymbalta as it is recommended for people with FMS.  I have to go to a psychiatrist to get that going, since it's tricky weaning of Effexor and I've felt suicidal at times recently.  (Ugh)

Anyway....I have to say that I had a really good day painwise!  I was about a 1-2 this morning.  After being at several lacrosse games, I started to hurt a bit around 2:30 so I went ahead and took a pain pill.  The rest of my day was great.  I had some fatigue during the middle of the day...and I'm exhausted right now...but it was a better day, healthwise, than any I've had for a very long time. 

Praying for more days like this so that someday soon I can get a job, feel well, and start living a happy life again.

Hope you all had a good weekend and very little pain!