Sunday, October 30, 2011

What Fibromyalgia Feels Like & Relief At Last!!

After officially being diagnosed with Fibromyalgia this past April, I wrote a post entitled "A Medical Game Plan."While it wasn't easy to accept a second diagnosis, it provided some clarity and relief.

I've had joint pain my entire life, but the pain associated with Fibromyalgia is entirely different. It has two components: a deep, widespread burning and a kind of skin sensitivity that can make even the lightest touch painful. Of the 18 "tender points" associated with Fibromyalgia, I have 16, and even pushing lightly on or near them can bring me to tears. This condition alters the way your mind processes pain; essentially my nervous system is in "over drive." For instance, a warm bowl of oatmeal might feel scalding in my hands, and a simple blood test can now make me jump out of my chair. Although I rarely exercise, it commonly feels like I've run a marathon; my muscles are knotted and achy as if I have the flu.

I also noticed significant cognitive changes. My mind was "fuzzy", and my memory had never been so bad. After researching and comparing notes with other patients, I now recognize this as "Fibro fog" - a phenomenon that is extremely real and profoundly disorienting. Finally, the quality of my sleep has been affected and my fatigue is overwhelming. Even on nights with 9 + hours of sleep, I can wake up feeling as if I never went to bed. 

I'm thrilled to report this is all changing! 

Last spring Dr. Berman suggested replacing my anti-depressant (Zoloft) with a new drug called Savella - a single pill proven to help both depression and Fibromyalgia pain. It sounded ideal, but I was careful not to get my hopes too high. I'm extremely sensitive to medication and, because of my history of medication-induced depression, Dr. Berman felt I should be monitored by a psychiatrist as I made the switch. It took months to find a psychiatrist who took my insurance, but Dr. Dana DeVito, MD was certainly worth the wait. Not only does she have experience treating patients with chronic pain, but her empathy is tremendous. It's not easy to sit down with a perfect stranger and discuss your health history, but she made it easy. After I mentioned my history with depression, she validated me with just one sentence: "Honestly Maya, I'd be worried if you didn't feel depressed at some point." It was a simple concept, but  it went a very long way. 


The day after I started Savella, I already noticed an improvement in my pain. As my body transitioned from Zoloft (a medication I had been taking for over a year) to Savella, I experienced some unpleasant side effects. For the first few days, I was very dizzy in the mornings, my anxiety increased, my heart was racing, and I was sweating more than usual. Dr. DeVito explained this reaction was most likely a response to the norepinephrine in Savella - a stress hormone that can simulate the "fight or flight response." She reassured me that side effects typically subside after the body acclimates to a new medication, so I decided to push through these initial problems. It was one of the best decisions I've ever made.


On a scale of 1-10, my pain level has ranged between "5-9" for well over a year. My fatigue has been overwhelming, and every movement had to be carefully measured in order to conserve my energy. In just three weeks, the searing pain I mentioned above has dropped to a "1" or a "2" at most. I was hesitant to let myself believe it at first, but as the days pass and my pain stays away, I'm letting my guard down. Truth be told, I'm fighting back happy tears as I write this post; words cannot describe how my life has changed and how my days have brightened. When I first open my eyes in the morning, I don't run to my bottle of painkillers, nor am I immediately reminded of my chronic pain. I'm able to make and keep plans, and I actually have the energy to enjoy then. I can sit and stand for longer periods without constant, throbbing back pain, and everyone says my face looks happier and healthier. Pain is no longer on the forefront of my thoughts and, as a result, my mind is so much clearer. I'm learning more, remembering more, and experiencing more than I have in years. More than anything, I truly feel like myself again. 




7 comments:

  1. What wonderful news! We all hope that we will find relief and it is wonderful to hear that you have finally found some for yourself. Enjoy it! I can only imagine what things you will be able to do now and relish :-)

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  2. I am so excited to share your news with viewers on my page!!! Such wonderful news! We are crying happy tears for you as well!!!

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  3. I am so glad that you have found something that works. Fibromyalgia is so tricky and mysterious.

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  4. i am so happy for you!!! xoxo

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  5. Wow, wow, wow! That is absolutely great news. Thanks for sharing. This is a medication I have heard of or tried and will pass the info on to my docs for possible use in the future.
    I'm so happy for you!

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  6. Congratulations! Isn't finding relief such a huge relief?! Especially when it feels like that relief will never come... Hoping it continues for you. Also, just wanted to throw another med out there from which my sister-in-law has found relief - Cymbalta. She experienced almost immediate relief for her fibromyalgia pain, and very few side effects. She has never felt better!

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  7. Your assessment of Dr. DeVito is spot on! She is the most empathic, attentive, kind, human & giving professional of the oft-robotic ilk of NYC psychiatrists. You know that you are a person -- not a symptom to be (probably over-) medicated. She is of a rare breed of her profession: a psychiatrist that has the temperment & caring disposition of a psychotherapist. She is a profoundly remarkable paragon that her collegues should emulate.

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