Fibromyalgia Update: It Just Gets Worse?

Magnetic Resonance Imaging - Human brain side view

Magnetic Resonance Imaging – Human brain side view (Photo credit: Wikipedia)

July 30, 2012

My Fibromyalgia update is not full of rainbows and unicorns and fairy dust, it’s plunking along through a slow and painful process, apparently it goes on forever. Now, in addition to Fibromyalgia and the auto-immune disease, Hashimoto’s Thyroiditis I’ve had to deal with Nuerological issues as well. Imbalance? Ah yes, you know it well.  Now I have another doctor to include to my semi-annual repertoire  and I have a feeling it isn’t ending here. Just a feeling though…..

I’ve already had a brain and cervical spine MRI, the results were fine. My new Nuerologist (yeah, now I have one of those too) sent me a note saying that everything was normal given my age. “MY AGE” as if I don’t feel old enough. I do remember in the exam he exclaimed” So, what you are telling me is that you were basically a healthy woman until you hit the age of 50.” That grounded me, but it is so true. I know we weren’t supposed to trust anyone over 30 when we were young but no one said anything about falling apart when turning 50. You would think that would be written somewhere, or at least a warning sent when you are 45, (“ENJOY YOUR NEXT FIVE YEARS!!!!) not that we would have believed anything so preposterous.

Whoever says 50 is the new 40 does NOT have Fibromyalglia, I can pretty much bet on that. Tell a person who has Fibromyalgia that 50 is the new 40 and you are most likely to get a response like “my ass it is.” I couldn’t agree more.  I am so frustrated with different doctors and medications, I’m tempted (merely tempted) to talk to my Rheumatologist and see what he says about stopping Savella. I know, I’m ALL talk, Savella helps me, at least a little. However, my Rheumatologist put me on something called Topomax which he said would help me and I took it for many months.  I took it until my balance was so off kilter (even more than usual) and my forgetfulness was at an all time high AND I was getting tingling in my feet and hands; that scared me. One look at my medical history and the Nuerologist immediately said: Topomax: First two side effects are tingling and imbalance. Seriously, Did my Rheumatologist not know that? You would think that my Internist would be involved in some way but if it isn’t strep throat or a sinus infection, “it’s not her job.”

Once in awhile I have taken to using a cane, especially when walking our really strong 5 month old puppy, but with an 18 year old daughter, who embarrasses easily, I think I will use it more in three weeks when she goes to college. Wednesday, I am going back to the Nuerologist for results of my tests, I will see what he has to say. I’m bringing my husband along with me to listen; I am a horrible “listener” at a doctor’s appointment. I think it’s called the “white coat syndrome” whatever the doctor says, I seem to only remember the one or two bad words. My husband is much better at things like that than I am.

Next week I will go to the Rheumatologist and try to straighten things out. I would ask one doctor to talk to the other but in the past few years I have noticed they really don’t like to do that. I know, “LIKE?” I will insist, because the only one who can manage my healthcare, let’s face it, is me.

I’ll keep you posted.