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Guinea Pig Me!

Posted Jun 10 2009 6:43pm
I am now a participant in a research study on a new med for Fibromyalgia, called Reboxetine. It’s supposed to help not only with the pain, but also primarily with energy, FibroFog, and even sleep. I’m excited about both the med and the chance to be able to help other with Fibro by being a part of the study. I have a 75% chance of getting the real deal rather than a placebo.

I finally had my first appointment today with OHSU, whom I’m doing the study through. The snow and ice kept causing my appointment to be postponed and today was the last possible day to join, so I’m happy it worked out. I was there three hours, full of paperwork, lab tests, and a physical exam. Besides the appointments, I’ll have to phone in every day and enter a pain level number for the day.

During the exam, this doctor had me assign a pain level number to each pressure point. o_0 I hate having to pick a number and here I am signing up for 17 weeks of it, ha. As the doctor pushed on the first place on my back, I took a deep breath and said, “Five.” The doctor, standing behind me, commented (in his charming English accent), “You aren’t very remonstrative, are you? Most people say, ‘ouch!’ or cry out.” He didn’t get a gasp from me until a spot where the pain was 8. :-p

I guess I just don’t show my pain much. I’ve always wondered why people around me don’t seem to respond with “are you okay?” or such more often when I’m in a lot of pain. But even my family says they have a hard time telling how much pain I’m in. I guess I have a more internal reaction and hold my breath through severe pain.

One of the routine tests they did today was an ECG. For a while now I’ve been having heart palpitations and thought something seemed a little off, but my doctors just dismissed it so this is the first time anyone has ever tested my heart. Whaddya know, I was right! Turns out I do have an irregular heart beat, though that usually doesn’t cause problems. However, the test also showed a possibility of an enlargement of my right atrial. He said something about it being connected to my Raynaud’s*, but I’ve never heard of Raynaud’s affecting the heart, so I’ll have to find out more about that. I’m going in to my new primary care doctor in two weeks, and they should do an echogram.

I’m excited about being seen by this research doctor who not only is familiar with Fibro but has done extensive research on it. I’m hoping my new regular doctor will be good, too.



*Raynaud’s is a circulation problem in the extremities--mostly the hands. Blood vessels overreact to cold and constrict too much. Typically it only causes minor discomfort and slightly slower healing in that area.
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