In light of The New York Times article on Lyrica, (the new Pfizer drug being prescribed for Fibromyalgia) -- I had to write about a topic close to my heart. I will not go into how The New York Times is debating whether Fibromyalgia is a real dis-ease or not. I feel that is beside the point right now. The point is millions of Americans HAVE been diagnosed with Fibromyalgia and are now being seduced into taking this new drug.
What is Fibromyalgia and what does it have to do with me?
I lived with a diagnosis of Fibromyalgia for 2 years before being re-diagnosed by a rheumatologist as having Benign Hypermobility Syndrome (Ehlers Danlos III). Fibromyalgia is a widespread pain illness. The symptoms are vast and not everyone diagnosed has the same exact symptoms. The predominant symptom that everyone does have is chronic pain that moves throughout your body and specifically to many different pressure points throughout the body. It has been described by many as feeling like you have the flu ALL the time.
I have heard some doctors say it is nerve based -- the person that has Fibromyalgia perceives pain differently and more extreme than others. I have also heard it described as a soft tissue ailment like rheumatoid arthritis. Some of the other symptoms associated with it are insomnia, headaches, Fibro Fog "feeling disconnected and unable to concentrate", abdominal pain, jaw tenderness, extreme pain during exercise and there are numerous others.
Fibromyalgia has never had a "cure". Doctors usually recommend managing it with a cocktail of miscellaneous prescription drugs including a low dose anti-depressant (helps to break the sleep/pain cycle), pain killers, muscle relaxants, sleep aides and sometimes anti-migraine medication. When I was treating my dis-ease as Fibromyalgia no natural means of pain control or "healing" were mentioned. Doctors tell the patient that the best thing is to "manage their pain using prescription drugs". People that are diagnosed with Fibromyalgia often are on many medications, gain weight because of thethe lack of exercise and most often do not get any better but need more and more medication.
What is Lyrica and what does it do?
Pfizer released Lyrica a few years ago for nerve pain associated with diabetes and for seizure disorders. My doctors mentioned that it was being tested on Fibromyalgia patients. In 2004 the FDA recommended Lyrica be rejected for diabetic nerve pain because of its unimpressive results and the very real side-effects. Lyrica can cause SEVERE weight gain, edema, sleepiness and dizziness. It also should not be given to people who have had a history of drug dependence because it can make you feel "high". It has to be carefully monitored and you have to see a doctor to wean you off of it. You CANNOT drink alcohol while taking Lyrica.
Lyrica is the first drug being prescribed specifically for Fibromyalgia as the new commercials point out. This alone will have millions of people lining up to take it. Sales from Lyrica totaled $1.8 billion in 2007 and are expected to rise 30% in 2008. It brings up some very interesting questions.
If this drug was found to have dangerous weight gain as a side-effect (which we all know causes other health issues) why would they prescribe it for a population that is already mostly over-weight? The New York Times article lists the average Fibromyalgia patient (Findings from the 2007 survey have 2,500 people surveyed) weighing 180 pounds and standing 5 feet 4 inches. The average weight gain on Lyrica during a 12 week trial was 7% of the person’s body weight. So the person standing at 5’ 4” and weighing 180 lb. would now weigh 192.6 lb (and that was just after 12 weeks).
There are already MANY prescription medications doled out for this diagnosis that result in dependence. I finally gave in and took Hydrocodone when I was in severe pain. Luckily I have always been terrified of dependence and was very mindful when I was taking it and never got up to the 12 pills/day I was allotted. Still, in the few short months I was on them I went from ½-1 pill taking away my pain to needing 2 at a time (every 4 hours). Lyrica is similar in that you need to take it often (for pain) and it is habit forming. Hydrocodone is now the most common household drug and we are facing record number of addictions. I personally have known MANY people who could not stop this drug once they started it – even after the pain had gone. WHY in the world would you release a drug like this when you know it will likely lead to another epidemic in dependence and addiction?
So what worked for me?
Getting the diagnosis of Fibromyalgia is upsetting in so many ways:
- The extreme pain you are in and the many tests you are subjected to for ruling out other illnesses.
- There is a huge controversy surrounding whether it is a real or phantom illness – which doesn’t help if you are trying to explain to your family and friends that you are in REAL pain.
- The experience of having chronic pain and feeling unable to participate in your own life causes ENORMOUS amounts of stress which exacerbates ANY dis-ease.
- The lack of sleep (due to pain) contributes to the feeling of dis-ease and makes pain worse. (This is the sleep/pain cycle)
- You are told essentially “there is nothing you can do” and to “manage your pain” by drugs. HERE is where I strongly disagree – you CAN help yourself.
I was diagnosed with Fibromyalgia and later with what many would consider an even more debilitating disease that has a lot of similar characteristics as Fibromyalgia. I have been pain and pain pill free now for a year. I had to do it myself. No doctor aided me in coming up with options for my well-being. It took me saying and believing I would heal myself and finding the tools to help me to do so. I needed to face my demons and things that I had not dealt with. I needed to stop blaming others and myself and start forgiving. I needed to feel gratitude for what I did have in my life. I needed to exercise no matter how badly it hurt in order to get my body stronger. I needed to set goals to move forward with my life. I needed to be OFF of the pain pills to even fully assess what my pain was and to be sure that it wasn’t the pain pills causing more pain. (They did actually contribute to a lot of stomach pain). I needed to STOP going to the doctor 3 times a week to hear how sick I was and to stop concentrating on my dis-ease all the time.
Wait, Are you Saying Fibromyalgia and the Pain is ALL IN MY HEAD?