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.


  1. Wow! I'm glad you got a couple of pain free days and then days with minimal pain!


    I hate migraines too (in response to that little part of your about me on the side), I hate headaches in general. I really do. Gah!

    Also, thank you for following me. :)

  2. hi there! i just thought i throw my 2 cents in on the H Pylori. i had it about a year ago diagnosed through a endoscopy. i thought i might have it again and asked the doc if we could do the blood or breath test for it....he said that i would have to do another endoscopy because once you have one time you will always test positive for it on blood tests. just a little FYI in case you didn't know. :) good luck with your diagnosis! don't give up and always trust your gut!

  3. Beth, you need to vent/update!

  4. You really really need to come see me....

  5. With the mtx, are you on folic acid? Methotrexate can cause a folic acid deficiency, which leads to mouth sores. I'm on 1mg daily, but some people take as much as 2 - which might be needed to get rid of your mouth sores since you already have them. Just a thought.

    I wouldn't be too quick to think that 3/4 must be right. From the things you've written, it really does sound like maybe PsA or USpA. Many spondys are first misdiagnosed with fibro (4 years with a wrong dx isn't unusual). It's possible that the ONE is the person who's on top of things. Hang in there!

  6. Just found your blog and have been looking around. Thought I'd tell you about myself because our symptoms sound similar and maybe that may move you to rethink RA as a Dx. I was diagnosed with juvenile rheumatoid arthritis 7 years ago at the age of 16. I also tested negative for rheumatoid factor but had persistently worsening symptoms. I am currently on Enbrel, mtx with folic acid, naproxen, hydroxychloroquin, and take prednisone when I have flares. Also-- I have that extreme extreme fatigue that you are speaking of, it is also a symptom of RA, both the meds and the disease. Good luck with finding a rheumatologist-- I am so thankful that mine was a godsend and even worked with me when I was away in college. Best of luck finding a definitive diagnosis.