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I had never heard of the chronic condition fibromyalgia until my diagnosis in 2003. Upon my diagnosis, my physician first prescribed an antidepressant which failed to relieve my fibromyalgia symptoms. It did, however, turn me into an emotional zombie. While I do not remember the name of that prescription, I do remember the name of the second one I tried. We will never know whether Elavil would have helped or not because I ended up being allergic to it and had to stop treatment soon after I began.
From that point, I was referred to a rheumatologist who treated my fibromyalgia symptoms with prescription pain medication and muscle relaxers. In 2007, the FDA approved Lyrica1 (pregabalin) for the treatment of fibromyalgia. And it changed my life.
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Life With Less Fibromyalgia Pain?
My fibromyalgia symptoms before Lyrica included but were not limited to the following:
- Widespread muscle pain
- Nerve pain
- Insomnia, more accurately painsomnia (the inability to sleep due to pain)
- Fibro fog aka brain fog
Opioids didn’t relieve the pain; they masked it. Which was something I desperately needed during a time when so few options were available. I was also allergic to them, but I would only break out in hives if I took two doses within a few days of each other. While I do not recommend taking a medication that you are allergic to, I had no other option than to chose opioids for occasional relief. So it was opioids to the rescue once a week.
My hope was that Lyrica would fill in the gaps and either eliminate or decrease my need for opioid relief.
LYRICA Started Working In 1 Week.
Right from the start, I noticed something different. Within a week, I experienced a significant decrease in allodynia2 pain.
Allodynia is a type of nerve pain that is induced by stimuli that do not typically cause pain. An example is a light feather touch. For me, something as simple as a gentle breeze or the fabric of my shirt sliding down my arm would result in pain that felt like someone had scrubbed my arm with sandpaper. The pain wasn’t exclusive to my arms. It could be felt anywhere at any time.
LYRICA Is Believed To Calm Overactive Nerves.
During the 5th surgery, the surgeon severed a set of nerves while making a cut to release my cervix. The error cannot be fixed or treated. However, since Lyrica had significantly reduced my fibromyalgia topical nerve pain, my doctors assumed it would do the same for my new deep internal nerve pain. They also hoped that it would return the feeling lost in my upper thigh from the surgical error.
Unfortunately, they were wrong. With each Lyrica dosage increase, the nerve pain between my left thigh and pelvis increased. And as that pain increased, the loss of feeling in my thigh spread.
I never knew when I would be able to feel or rely on my left leg. This led to new painful injuries like a broken tailbone.
You would think that by reporting pain increases with each new dosage, they would have realized that Lyrica was not the answer. Instead, they just threw their hands in the air and gave up when I reached the maximum dosage permitted.
Did LYRICA Help Relieve Moderate To Severe Fibromyalgia Pain?
The answer to this question is yes and no.
Yes, Lyrica significantly reduced my fibromyalgia nerve pain. But other than that, my fibromyalgia symptoms remained the same as they were before my very first dose.
With that said, at the time, I believed it was improving my fibromyalgia pain. And here is why; If I was late or missed a dose, my fibromyalgia pain symptoms would skyrocket. Seriously, the pain was a million times worse than any fibro-related pain I had ever experienced. This led my doctors and me to believe that it was working. Because if it wasn’t working, there would be no difference, right?
Health Insurance Woes
Before I continue, I need to share how my health insurance coverage led to what would become the best and worst pharmaceutical treatment discovery of my fibro life.
At the same time as I realized Lyrica was not the answer to my nerve pain, my husband lost his job. Thankfully, he found a new one within a few days, but a new employer meant a new health plan. This was in 2008 when insurance companies could deny and delay coverage for pre-existing conditions.
A call to my pharmacist to find out what my prescription would cost out of pocket forced a quick decision. I was informed that our new health insurer would deny coverage for all of my pre-existing illnesses for an estimated time of 12-18 months. Without insurance, my prescription of Lyrica would have cost $700 per month. Even if our income hadn’t taken a hit with the job change, there was no way we could afford to pay that much for one prescription. Thankfully, the total out-of-pocket for the rest of my medication was around $20 per month.
Knowing I would have to stop taking Lyrica, I talked to my doctor about tapering off. I informed him of how much I had left, and he gave instructions on how to decrease my dosage.
The Fibromyalgia Treatment LYRICA Side-Effect Nobody Warned Me Of
I took my dosage at the same time every day, even while tapering off. Throughout my years of treating fibromyalgia with Lyrica, I learned that I could never be more than 2 hours late, or there would be physical hell to pay.
Tapering off was a breeze. Nothing changed. My symptoms were no better, but they weren’t any worse either. I remember thinking how lucky I was to have tapered off without the horrible side effects that I had heard other patients complain about.
Then it happened. Three hours past my dosage time, my fibromyalgia pain escalated to levels I never thought possible. In the past, I would have just popped another pill, and my world would have returned to “normal.” But this was the end; there were no more pills to pop.
Hour after hour, new symptoms joined the party. They included but were not limited to the following:
- Profusely sweating through my clothing and bedding
- My skin felt like it was fire
- I felt like there was an electrical storm flowing through every nerve in my body
- My joints, bones, and tendons were severely inflamed
- Night terrors made me anxious to sleep
- Sleep deprevation
- Physical and mental fatigue
- I felt like there were bugs crawling on my skin and inside my body
My body had become addicted to Lyrica. And if that wasn’t scary enough, my doctor compared my detox experience to being WORSE than someone who was detoxing off of METH! All I could do was lie in bed or on the sofa and cry. Nothing helped. This horrific experience lasted a total of 7 months, with the first 4 being the worst.
My Fibromyalgia Pain Post LYRICA
Once Lyrica was entirely out of my system, I recognized my base level of fibromyalgia pain. The process revealed that Lyrica hadn’t relieved any of my fibromyalgia symptoms minus a bit of allodynia relief. On the plus side, I experienced decreased nerve pain that stemmed from the surgical error.
This was the best moment in my pharmaceutical treatment of fibromyalgia because had my coverage not been denied or had I been able to afford my prescription, I never would have stopped this treatment or discovered the addiction.
Working With My Doctor To Treat Fibromyalgia
From that point, my doctors agreed that after my experience with Lyrica, it wasn’t in my best to try similar medications like Cymbalta or Savella. My medical team respected my decision to just move forward with the drugs they had been prescribing for pain all along. This was not an issue until I moved to California.
My fight for chronic pain relief and how I went on to build a better fibromyalgia treatment plan is another blog post for another day…..
How To Save On The Fibromyalgia Treatment Lyrica
Just because Lyrica did not work out for me, it doesn’t mean it won’t work for someone else. With that said, nobody should go broke paying for medication.
If you are one of those that benefit from treating fibromyalgia with Lyrica, visit GoodRx to see if you can save money on your prescription.
What was your experience with Lyrica?