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Wednesday, February 6, 2008

Fibromyalgia & Lyrica

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 the 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?

Again, from The New York Times article, “Pfizer has steadily ramped up consumer advertising of Lyrica. During the first nine months of 2007, it spent $46 million on ads, compared with $33 million in 2006, according to TNS Media Intelligence.” Wow, that is a LOT of money. One would hope they spent as much researching the illness Fibromyalgia over the last 2 years as well as the long term effects of Lyrica – but somehow that is highly doubtful! You can read my post on Pharmaceutical Companies Spending Double on Ads than Research to see why I feel this way.

So what worked for me?

Getting the diagnosis of Fibromyalgia is upsetting in so many ways:

  1. The extreme pain you are in and the many tests you are subjected to for ruling out other illnesses.
  2. 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.
  3. 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.
  4. The lack of sleep (due to pain) contributes to the feeling of dis-ease and makes pain worse. (This is the sleep/pain cycle)
  5. 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?

No! My pain was as real as it came. I was not happy to be crawling out of bed hysterically crying, passing out from pain or to question whether or not I should drive my kids somewhere because of how dizzy I was. Those memories are ingrained as are memories of JUST how badly my body could hurt. I have not experienced pain like that or taken a pain pill in over one year now.

I am saying your mind is SO powerful and can be USED as a tool to heal. I have written about some of the methods I have used on my blog and I fully outline them in my e-book. I also have recommended a bunch of teachers to pursue further learning. You need to find someone that resonates with you for you to be able to fully understand the power that lies within. EVERYTHING affects your body; your environment, the food you eat, the medications you take, how active or inactive you are, your emotional state and your thoughts and self-talk. Some of my personal favorites are Dr. Mercola, Dr. Deepak Chopra, Dr. Wayne Dyer and Dr. Ingrid Bacci. With the internet you have the means to get a lot of information for free and from that you can decide who you want to pursue learning from.

Please, if you or someone you know is debating taking Lyrica, stop and evaluate other options. TRY some of the mind/body techniques and just see what happens. Find a holistic doctor near you. What do you have to lose? If you are on medications you might need your doctor’s assistance in weaning off of them. I am not a doctor and cannot advise you on how to go about this. I was never on the maximum doses of anything so was able to wean myself off without assistance. Think about it, chances are you probably know someone with this diagnosis – what will you recommend?

So Under No Circumstance should ANYONE take this drug?

For the Fibromyalgia patient that has gone through the plethora of drug treatments available, the one that has seen holistic doctors and the one that has exhausted every mind/body technique – maybe this will be the drug that finally takes away your pain. I would guess a very small percentage of Fibromyalgia patients have done all of this though. Alternative methods of healing are not even addressed by most doctors much less advertised in the media. Before taking Lyrica I would investigate what kind of research has gone into long term effects. Will this be another drug pulled off of the shelves in 5 years? What bodily damage can this pill cause? I know Hydrocodone can cause liver, kidney, stomach damage and even death. I think you owe it to your long-term well being to investigate ALL other options before taking this drug. Remember, “Prescription drugs NUMB Pain but do NOT Heal PAIN” – to heal you need to look within.


Neil said...

Wow, Jenny. So much to comment on here. Your perceptions, though, seem spot on to me.

My mother has some "chronic diagnoses" - and I've been shocked at how easy it can be, in cases, to just start experimenting with drugs to try and stumble onto a solution. Something my mother has been willing to do, and that, I suppose, becomes easier to do the more extreme one feels their circumstances to be. But taking a medication designed for problem "A" because it might help with problem "B" (never mind all the side effects) seems to be inherently problem-causing as much as it is problem-solving. Considering what I've seen my mother go through in terms of her physical health, the toll that these things can take on your body are worth considering. Seriously.

So I think your warning is quite appropriate - and that your story will clearly help others who are looking for ANOTHER way - one that will potentially be much more successful for them.

Though Lyrica - it just sounds so soothing, doesn't it?!?!

My wife and I, when we watch TV, mute all commercials. Especially the ones for drugs. We refuse to submit to the constant suggestion that we a) have an illness and b) that they have the magic pill to fix us.

And minus the child who wakes up every few hours, we both sleep great without the ambien.


Jenny Mannion said...

Thank you Neil for sharing your mother's story. Yes, this is a very serious issue and I have seen many people be put on ANOTHER medication to take away the side effects of the first medication. A vicious cycle and one that does not help your overall health long term. The drug ads are out of control and it is sad to see them becoming more frequent. My goal is to make people stop and think before picking up the phone to call their dr. for the newest prescription. There are a lot of wonderful and natural ways to heal. Thanks for commenting! Gratefully, Jenny

Fern (M K van Bronkhorst) said...

Thank you for sharing your own story, Jenny. I'm so glad to hear you have found a way to manage your pain and the debilitating effects.

Fibromyalgia cripples more than the body. Heck, just sitting through doctor after doctor flatly stating that FM doesn't exist and "it's all in your head, dear" for years can stifle the spirit. One highly educated fellow declared that fibromyalgia cannot exist, since "it is a syndrome made up to appease women, and (get this!) syndromes do not exist as physical and diagnosable conditions," and if I were a doctor too, and not a female, I would understand this. (No, I haven't been back to see him.)

After I did find a savvy physician who is current with the diagnostics, he confirmed FM and recommended a course of action. Gentle exercise, controlling stress, reasonable expectations for being able to sleep. After long discussion, we both agreed to avoid the antidepressant route (I'm not depressed - I'm in PAIN).

For me, the pain, the dizziness, fog, flares and cramps are still there - I get 2-3 hours of sleep on a good night (maybe), but I've learned to deal with it. But chronic pain can be managed without being over-medicated. It is not easy, but then again, neither is life in general. DVT (clots in legs) limits my treatment options - aspirin is right out.

In the case of Lyrica, I admit that the happy smiling ladies on the TV ads made it sound tempting, but it seems like the cure could be far worse than the cause.

Jenny Mannion said...

Hi Fern, Thank you for sharing your story. I, too have had a DVT and AM still on coumadin for a genetic blood condition that causes them. I am happy you had a doctor that suggested gentle exercise and sleep management. I found Dr. Chopra's Guided Healing Meditations (audio book) particularly helpful in this regard before bed. Chronic pain brings so many complications to life and invisible ones (like Fibromyalgia) is make it even harder to cope when you hear comments like "But you don't LOOK sick". I wish you all the best Fern and if you want to email me -- feel free and I could talk to you some more about some of the methods I found most instrumental in my healing. Thank you so much for coming by and for sharing your story and commenting. Gratefully, Jenny

Anonymous said...

Way to go Jenny!
Between you and Kevin Trudeau the doctor's are going to have to realize that they need to explore other options besides drugging people up with different medications.

-garry b

Jenny Mannion said...

Thanks so much Garry! I really appreciate you coming by and commenting. This is a passion as is evident by my writing and I will pursue this with all my heart and soul! It has gotten way out of hand and it is my intention to inform as many people as possible about alternate means to heal. Thanks again -- your blog is very unique and I enjoy your writing a lot. Gratefully, Jenny

Louise Aspden said...

Jenny - Keep this up, you will change lives. You should have been on "The Secret to 'The Secret'" show last week.

With gratitude...


Jenny Mannion said...

Hi Louise, Thank you so much for such a big compliment. I feel I have found what I am here for and it is my intention to help as many as possible. I am grateful I started with my own body so I know JUST how easy it is and how good it feels to be healthy again. Thank you for coming by and commenting -- you have a very important message as well. What's better than attracting more joy? Gratefully, Jenny

Anonymous said...

Here's helpful information for all fibromyalgia sufferers.

Fibromyalgia is a condition where you feel chronic pain in certain parts of your body; it is a muscular pain especially around the joints. There can also be centralized pain felt in the spinal chord, brain, neck shoulders etc. People with fibromyalgia generally complain of pain in the joints, but it actually is the muscles and the tendons around it that cause the pain, it can be excruciating sometimes and can be a continuous throbbing pain. People suffering from Fibromyalgia also show symptoms of depression, sleeplessness, irritable bowel syndrome, stress and many others, which are caused due to the pain.

Rid Fibromyalgia provides a simple process to helps you eliminate all your symptoms of fibromyalgia and enjoy living your life again. This will provides us the best and most effective solutions on how to rid ourselves from pain.

The Rid Fibromyalgia provides an eBook entitled “Heal the Body” that will teach you the best diet that will allow you to eat your way to wellness, it will also document which vitamins and supplements will target and reverse the illness, how to achieve pain relief through acupuncture, what exercises are safe and will work, and what type of medications may make you sicker, and what will work. This eBook takes a step by step approach in showing you how to rid yourself of the pain naturally so that you can take back your life.

We must know the symptoms of this illness. For us to know what would be the approach we will going to apply. Here's Signs and Symptoms of Fibromyalgia and steps to treat it naturally.

We must also be responsible and aware to the things to gain and cope up with this kind of illness. Eating nutritious food with regular exercise would be result to a better life. Here's Basic Tips in Coping Fibromyalgia.

If we say Fibromyalgia Diet, there is no specific recommended diet for fibromyalgia. But a healthy diet rich in vitamins and minerals can certainly help in coping with the illness. Magnesium rich vegetables are recommended for patient's suffering from fibromyalgia. Here's some information for you to help in Fibromyalgia Diet.

We must also think that vitamins are important for Fibromyalgia sufferers. This will give us additional energy and strength to kept a healthy living. But of course, you must be aware that not all vitamins are effective or directly gives you a good result. Find the best vitamins that would easily give a good response if your taking it. The best thing is your healed and keep your body healthy as possible. Here's The Benefit of Vitamins for us to know why vitamins are important for fibromyalgia sufferers.

Also feel free to view this video Fibromyalgia Help. It really gives good information for those who have Fibromyalgia and encourage not to give up because in every pain your getting through has a good solution in the end.

Here's Rid Fibromyalgia, For free info and helpful articles on fighting fibromyalgia.

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Muska said...

Thank you Neil for sharing your mother's story. Yes, this is a very serious issue and I have seen many people be put on ANOTHER medication to take away the side effects of the first medication. A vicious cycle and one that does not help your overall health long term. The drug ads are out of control and it is sad to see them becoming more frequent. My goal is to make people stop and think before picking up the phone to call their dr. for the newest prescription. There are a lot of wonderful and natural ways to heal. Thanks for commenting! Gratefully, Jenny

Debra said...

I would love to find an alternative treatment for my chronic fibromyalgic pain, rather than drugs. However- I am on disability and Medicare/Medicaid and CANNOT EVER afford holistic doctors or alternative healing, or supplements even if they take payments on a sliding scale. It is a decision - either I eat or I pay for alternative treatments. I would prefer to eat. A nice concept, but the government that I am so dependent upon is cutting back on everything these days, and constantly threatened to be completely cut off, and it is enough of a struggle to feed myself.

Viagra said...

You have some great insight on these illnesses.

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