Tuesday, December 30, 2008

Guinea Pig Me!

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.


Jules said...

I don't know what is worse: to be the type of person who is always moaning about their pain so that no one takes them seriously; or to be the type to bear it in silence and no one realises how serious it is. Like you, I tend to be the latter, although at times I'll suddenly 'lose it' and everyone will wonder why I'm so grumpy. For them, that's often the first indication that I'm in pain even though I feel that I've been telling them in lots of ways prior to that.

I hope you're getting the 'real deal' but even if you're not it sounds as if you might be getting some answers for other things - and perhaps that will be good too.

BTW, I don't envy you having to assign a number to pain every day. Guess you could always just pull a number randomly out of the air?!

Joanne Sher said...

I'm with Jules - sounds like, even if you don't get the med, you'll have some more help. Praying, of course, that you're not getting the placebo. Glad you got into the study, and I'll be praying, as you know.

JC Lamont said...

I really hope this works out for you and that you on the real one! Keep us posted about how it's going.

I too will keep you in my prayers.

Dee Yoder said...

Amy, I pray this doctor can help you deal with this disease...it sometimes takes being a guinea pig to get to the bottom of any health issue. I'm glad you have the chance to do this(I'm adding your blog to my Blog Role, if that's OK with you!)

purple_kangaroo said...

I hate assigning numbers to pain, too!

Can you tell if you're on the placebo or the real deal yet?