Monday, October 04, 2010


So I saw my new rheumatologist this morning. My mom came with me, and my dad stayed at our place and played with Briony all morning (Geoff was at work). My personal opinion is that Briony + my dad came out the winners in that whole scenario :)

I met with the specialist (and his student) and they took time to go through my medical history at length and asked very good questions. Each of them examined me from head to toe.

The conclusion - based on that assessment - was that I have fibromyalgia in addition to some form of arthritis (likely either rheumatoid or psoriatic... they've always called it rheumatoid but have never been 100% sure). That wasn't really news to me, but it was a big step to have that double diagnosis finally confirmed (all the doctors I've seen in the past have said that it is either fibro or arthritis, never both).

That was the good news. The bad news is that the specialist believes that my fibro is much more active than my arthritis right now, and possibly mimicking some arthritis symptoms that are making me so miserable right now. His recommended treatment for that would be to continue exactly what I've been doing all summer - a combination of drugs that are making me sick from side effects and still not managing to control my pain.

I have another appointment booked with my specialist at the beginning of January, where I will receive the results from the tests they did today - bloodwork, x-rays, etc.

One of two things could happen in January:

1. If those tests show more active disease than they're expecting to see, they will definitely consider more aggressive arthritis
treatments (possibly the chemo drug that has worked for me in the past).

2. If they don't, they'll be forced to treat it as fibromyalgia - which in Canada means that there are two drugs that could be offered. I've tried one before, with negligible results. The other was not recommended when we looked at it a couple of years ago because I thought I might want a baby someday and those long-term studies hadn't been done yet - but it would obviously be up for discussion again now. But both of these drugs function as sleep aids and both are likely out of the question for me right now with a toddler in my house and a husband who sometimes works nights. If we are primarily dealing with
fibro and I can't be treated through one of these two pharmaceutical options, then I suspect my file will be closed once again after my January appointment.

At this point, I pretty much fell apart. The student doctor left the room to go find me a box of Kleenex. It's just NOT GOOD ENOUGH. I know it wasn't all negative - and I have complete confidence in this specialist and his judgment - but it wasn't at all what I had hoped it might be.

I am *so* disappointed right now. I like solutions, plans, action, momentum... What I got was LIMBO. The focus now will be to stay the course on my meds from this summer and do the best job I can in asking for help, taking care of myself, and focusing on living my best life possible. Three months sounds like forever, but we have so much to look forward to between now and then - Thanksgiving, Halloween, Geoff's birthday, Briony's birthday, a visit from Geoff's mom, a trip to New York, and CHRISTMAS.

We're going to do it. And we're going to make it GREAT. Right after I make myself a cup of tea and settle in for a really, really good cry.



At October 04, 2010 6:40 PM, Blogger Lenore @ Lather. Write. Repeat. said...

I'm so sorry you didn't get the answers you were looking for Lindsay. Being a fellow planner, I can see how frustrating it would be. I hope that you get through the next 3 months focusing on all the amazing things you mentioned coming up. One day at a time right?


At October 04, 2010 11:27 PM, Blogger Pearl said...

Sorry to hear this Lindsay. I can understand wanting something more definitive and solutions. The limbo, pacing yourself, etc is a tough way to go when you've got a toddler. Hope you get many little encouragements along the way. Here's praying for you. Pearl

At October 05, 2010 8:13 AM, Anonymous erin said...

oh lindsay. :( i'm sorry that it was frustrating. i'll be praying for you, for treatment that works, strength to get through the next 3 months and <3

At October 05, 2010 9:32 AM, Anonymous Momma said...

Still praying for another remission. You know "Remission Accomplished". We should make t-shirts :) We can do this.
Praying for you and loving you.

At October 05, 2010 9:58 AM, Anonymous Kathy @ FibroDAZE said...

Lindsay, I've read your blog for a while now. I'm a fellow Chronic Babe living in Canada. It totally sucks that the treatment options for FM (which I also have) aren't an option for moms w/ toddlers. Your little girl is just adorable.


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