Ever since I got an official fibromyalgia diagnosis, I have been lost in thought over the implications. Before I started to research it, I had a pretty bad impression of it-- just like most of the people I know.
My darling neighbor occasionally hosts his nephew, who travels to Salk Lake to see a specialist. My neighbor whispered under his breath that his nephew has... (with a quick scan of the street) "the fibromyalgia." He seemed embarrassed to tell me about it. I almost cried when the rhuematologist said, "FMS is a good fit for your symptoms." Not exactly a confidence-boosting delivery of the big news. But I just didn't know how to feel about suddenly being one of the crowd who has to explain that, "it's a real disease, no-- really it is."
People in pain have always faced skepticism (I am already intimately aware of that). Then add to that the fact that most of the people with this disorder are women, and our male doctors calling us all hysterical rather than admit that they don't understand or know how to treat the pain makes a lot more sense.
They say it's just a label, but now that I have the official fibro diagnosis, two things in my life have improved already. Medication is one. My Lyrica experiment is going shockingly well. I would say that I have had an 80% improvement in overall pain. I never thought that would happen. I am about to start Cymbalta this evening, which was only recently approved by the FDA to treat FMS. I watched a webinare (which is apparently a word now) and it explained with 8x10 color glossy picture with circles and arrows on the back of each one (not really) about ascending and descending pain signals. When I told my doctor that Lyrica works on ascending pain and Cymbalta works on descending pain messages, he said after a pregnant pause, "you're right! Those will work well together." So an understanding of the mechanisms of this pain, as well as access to new and exciting medication is my first benefit.
Allowing myself to be exhausted is the second. For 19 years and 4 months I have gone above and beyond to prove that I am fine! I may have pain, but I am fine, and I can do anything and everything the rest of you can!
But lately I have allowed myself to recognize that sometimes I am overwhelmed with exhaustion. When that happens I sit down. This is new for me. I think I like it. Thank god for hulu.
Thursday, April 2, 2009
It's official
Posted by Lissa at 4:33 PM
Labels: doctors, fibromyalgia, pain
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4 comments:
I got my Chronic Fatigue/Fibro diagnosis when I was 18. It is just a label in many ways, but it is nice to be able to give a name to people when they ask. It is also a nuisance when people don't know what it is or believe that it's real.
For many years I kept up with all my healthy peers. I worked long hours. I felt awful all the time. I worked long hours anyway.
In the last four years or so I have taught myself to slow down. I rest when I'm tired. I tell people no. I do what I can and don't try to push it (too much). I get regular, moderate (can't handle intense) exercise. I have changed my diet. I feel amazingly better.
I'm so glad you're having some relief. 80%! That's incredible. I hope it continues.
I'm glad to hear that you now have a plan and a diagnosis, and I hope it goes well for you. Also, I totally support you taking it easy when you need to, do what works for you. Good luck!
Last time I saw you, I noticed a considerable difference in how you were carrying yourself. It was the improved Lissa, who wasn't secretly standing there in pain. I'm very relieved that you have found a good path to take your treatment.
Yay for meds that work!!!!
80% is fabulous :)
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