Yes, yes, yes, I am STILL working on the nutrition series. I want to get it right. It's useless if it's not as complete a picture as I can give you in such a short space, which is why it has to be a small series. While I am working on that, life keeps marching on and I have a family to take care of and two children to get ready for college this fall.
I went to my daughter's summer welcome at her new college this past Tuesday. I did not want to go but it was a required event. One that I was also required to pay for. Gotta love the nickel and dime stuff!
I knew it was going to be a very hard day on me fibro wise. It was ninety-five degrees outside and I may as well have been drinking my oxygen, as humid as it was. The campus is three miles wide and we crossed it four times. We had to check in by seven thirty in the morning which meant we had to be on the road by six a.m. and the day was scheduled to end at four thirty p.m. NINE whole hours in the blazing sun, crazy humidity and walking, walking, walking. Psshh!
Everyone was sweating and cranky and the crowd was like a herd of cattle rushing toward water every time we were taken inside of a new building to explore. They knew those building were air conditioned and there was actual pushing and shoving amongst adults to be one of the first inside. My skin is sensitive. I can not take the pushing and shoving.
When we were seated in an auditorium to listen to speech after speech, the large amount of people caused the room temperature to rise. That, along with feeling crowded, I started to feel panic. I texted my husband, who is a man of few words - not much help there. So I texted my best friend who told me to go to a safe place in my head and breathe deeply. I was taking her advice. Starting to calm down, when a woman decided to stand over me to talk to someone behind me and COUGHED ON MY HEAD! That was it. I was outta there in a hurry! I am a germaphobe. I'm the first to admit it. But there is a reason for it. My immune system is in a constant battle with my body (I think they just enjoy the fight ;) If some incredibly rude person introduces a whole new germ to my very dysfunctional immune system, I will be down for weeks and I know it. So I ran.
When I finally did rejoin the group at lunch (which I had paid for in advance) the lady beside me decided to not only cough in my direction but to blow her nose into the linen napkin and set it on my side. I left.
I walked the campus for a while and then found an air conditioned building where I sat and wrote another chapter for my book while I waited for my daughter. I made it until two thirty but by then, my feet were so swollen I had to drive home barefoot.
Now, I knew I would owe the fibro fairy for getting out in the hot, humid weather and walking too many miles and I had hoped that I would only owe her one day but apparently - she's pissed! I paid yesterday and even with a sleeping pill (which I rarely take) she refused to allow the Sandman to visit me last night. So now we know what happens today, don't we. That's not a question. I'm all ready in twice the amount of pain that I was in yesterday.
That is the biggest thing that I have never understood about fibromyalgia. Now, I know I have CMP too and that greatly contributes to my pain, but why is it this disease punishes its' host for doing something that would normally be good for you? I know the science behind it but today it just strikes me as stooooopid! I can clearly see that I owe the fibro fairy much more than I thought. It's beginning to look like the rest of this week is shot. I'll finish making my payments because I always pay in full and then I will get back to business. I love ya'll! Be nice to you!
Thursday, June 13, 2013
Saturday, June 8, 2013
Discrimination Sucks!
Most of us have been discriminated against for one reason or another. Maybe we are over weight or under weight. Perhaps we have frizzy hair or short hair or a color that someone decides they don't like. Maybe we are female in a male dominated career or male in a female dominated career. Perhaps you love someone of the same sex or feel that you were born in the wrong body and others refuse to try to put themselves in your shoes.
Or maybe, just maybe you have a chronic, debilitating disease that leaves you screaming on the inside while looking perfectly normal on the outside. I have heard it all...'You look fine.' 'You don't seem sick.' I have been called everything from a drama queen to a hypochondriac to a flat out liar when it comes to my chronic pain. I have had doctors ask me if I wanted pain pills, all most as though they were testing me; ready to label me a drug seeker until they later found out that they had prejudged me. I have had family members gossip about me, saying that I'm not really in pain, I'm just lazy.
As a person with a chronic illness that isn't prominently displayed on the outside, we get to face all manner of criticism and have rumors spread about us. How do you deal with that?
I have heard so many of my fellow fm friends cry because someone that they loved called them any number of vile things and let them know that they did not even believe they were ill. It is such a hurtful thing to have those that you love not believe you much less educate themselves about your disease.
For me personally, I start by explaining the quick version of what is happening to me. If they are interested, I go more in depth, but if they aren't, I leave it at that. Some people get irritated that I don't hang out with them as much anymore but I have explained until I'm blue in the face. I'm finished explaining. I now feel like, if they didn't listen the first fifty times that I explained, they aren't going to listen the fifty first time either. I'm not going to waste my breathe anymore.
I became so tired of trying to squash the rumors and explain myself that I finally realized that by worrying about what other people thought and said about me, I was actually throwing myself into flares. I was allowing the opinions of people who were willfully ignorant to affect me in the worst possible way. So I stopped. Those who talk badly about me, I walked away from. Those who refused to try to understand why I can't always just jump in the car and go, also ended up in my rear view.
I basically purged my life of all of the friction. I had done my best to educate those people. I had done my best to be patient and kind but there came a point when I had to be more selfish and do what was best for me. I have to admit, I am soooo much happier and more relaxed without all of that drama surrounding me.
I do not advocate kicking loved ones out of your life unless they are causing you to be absolutely miserable. Everyone has the right to handle these situations in a way that is best for them. My whole point is, you do not have to tolerate discrimination. You don't deserve it. What you do deserve is a life full of peace and happiness and those moments of pure joy. I believe that you actually have a right to those things without someone stepping in and ruining it for you. I know that most of you have faced discrimination and I am so sorry that happened to you. Those people have no idea of the strength that you posses. You have to have a deep well spring of strength just to get through each day with chronic pain.
I know that some of you feel alone. Guess what? You aren't. I am in your corner and there are countless others of us cheering you on. You are NOT your disease. You are strength and beauty undeniable. That is my two cents for today. Be nice to you!
Or maybe, just maybe you have a chronic, debilitating disease that leaves you screaming on the inside while looking perfectly normal on the outside. I have heard it all...'You look fine.' 'You don't seem sick.' I have been called everything from a drama queen to a hypochondriac to a flat out liar when it comes to my chronic pain. I have had doctors ask me if I wanted pain pills, all most as though they were testing me; ready to label me a drug seeker until they later found out that they had prejudged me. I have had family members gossip about me, saying that I'm not really in pain, I'm just lazy.
As a person with a chronic illness that isn't prominently displayed on the outside, we get to face all manner of criticism and have rumors spread about us. How do you deal with that?
I have heard so many of my fellow fm friends cry because someone that they loved called them any number of vile things and let them know that they did not even believe they were ill. It is such a hurtful thing to have those that you love not believe you much less educate themselves about your disease.
For me personally, I start by explaining the quick version of what is happening to me. If they are interested, I go more in depth, but if they aren't, I leave it at that. Some people get irritated that I don't hang out with them as much anymore but I have explained until I'm blue in the face. I'm finished explaining. I now feel like, if they didn't listen the first fifty times that I explained, they aren't going to listen the fifty first time either. I'm not going to waste my breathe anymore.
I became so tired of trying to squash the rumors and explain myself that I finally realized that by worrying about what other people thought and said about me, I was actually throwing myself into flares. I was allowing the opinions of people who were willfully ignorant to affect me in the worst possible way. So I stopped. Those who talk badly about me, I walked away from. Those who refused to try to understand why I can't always just jump in the car and go, also ended up in my rear view.
I basically purged my life of all of the friction. I had done my best to educate those people. I had done my best to be patient and kind but there came a point when I had to be more selfish and do what was best for me. I have to admit, I am soooo much happier and more relaxed without all of that drama surrounding me.
I do not advocate kicking loved ones out of your life unless they are causing you to be absolutely miserable. Everyone has the right to handle these situations in a way that is best for them. My whole point is, you do not have to tolerate discrimination. You don't deserve it. What you do deserve is a life full of peace and happiness and those moments of pure joy. I believe that you actually have a right to those things without someone stepping in and ruining it for you. I know that most of you have faced discrimination and I am so sorry that happened to you. Those people have no idea of the strength that you posses. You have to have a deep well spring of strength just to get through each day with chronic pain.
I know that some of you feel alone. Guess what? You aren't. I am in your corner and there are countless others of us cheering you on. You are NOT your disease. You are strength and beauty undeniable. That is my two cents for today. Be nice to you!
Friday, June 7, 2013
Fibromyalgia, CMP and Me
Today has not been the greatest on record so far. Thunderstorms and pain plus three kids out for the summer and trying to get two of them ready to go to college equals one very cranky, tired Mama.
Before I continue, I want you to know that if you want to, you can leave comments at the end of each post. I would like to get to know you. I wonder who reads this blog. I also wonder if it is helpful to anyone.
I am nobody special. Unique, probably. Out spoken, definitely. But I don't fancy myself some disease related guru or legend in my own mind. I am just a woman who was born with a disease that affects my life way more than I would like. I am other things too though; I am a wife of 20 years to man whom I both adore and want to smack depending on what comes out of his mouth. :) I am a Mother to three not so small children; two of which are heading off to college in the fall. Life would be far less funny without those little gremlins. Them, I always adore! I am a friend to some of the strongest women I have ever known. I am in awe of them. The way that they conquer each day with the amount of pain they are in leaves me humbled on a regular basis. I am an artist and a writer who never feels that her work is good enough even though others gush over it. I am a animal lover and a gardener and I have a heart for the children who show up at my house broken and lost because maybe their parents didn't want to be parents. I do all that I can to help them because I know just how it feels to be them.
I was born with fibromyalgia but for years I did not know that it what it was. I hurt, it seemed like all of the time as a child but I was abused and attributed the pain to the constant beatings. Who wouldn't? My Grandmother had Fibro, my Mother has fibro, my Aunt has fibro. I pray often that I did not pass it to one of my children, though I'm starting to become more and more suspicious of one of them. She complains that her legs hurt at night. It's agony for her after a day of running and playing on the trampoline -'Mine always did too when I was little.' Her arms and back ache - 'oh, no!'. Her clothes hurt her skin -'Please God, don't let this happen to her. She's just a baby!' I'm terrified for her.
By the time I was 25, I was certain that I had arthritis. Between my childhood and my work in health care, lifting people, turning people, bathing- and once a man that weighed 300 pounds more than me fell on me and it took a year to heal from that damage. I knew you couldn't do much for arthritis so I went about my merry way, taking lots of Tylenol over the years until I was 28 and the pain literally dropped me one day.
We had an apricot tree outside of our fence that was just loaded and I wanted to make jam so I grabbed a basket and went out to pick a bunch of them. The basket was too heavy to carry all the way back around the fence so I put it over the fence in the backyard and started walking up the sidewalk to get to the front gate. I felt great until I got to the corner of the fence; it was just all of the sudden. No warning. Pain hit my entire body and took me down. I grabbed at the fence to try to hold myself up but my arms were not going to support me. I sat on that sidewalk for about 40 minutes before I had the strength to crawl to a handhold and use the fence to pull myself up. I leaned on that fence for support until I made it inside the yard and then crawled on hands and knees to the front door. I had NO IDEA what was happening but I was TERRIFIED! I called my husband at work and he took me to the E.R. but they found nothing wrong. They just gave me some pain meds, told me to follow up with my family doctor and send me home.
I was constantly nervous until I got in to see my doctor. So afraid it would happen again. He sent me for blood work and that's when the tests began. Months of tests. CT scan, MRI, tests for Lyme disease and Lupus and STD's...I thought it would never end. Every test came back negative. That is when my doctor did a pressure point test and asked me 20 minutes worth of questions and said, 'You have fibromyalgia.' Okay, so now we know what it is, we can cure it. I was that naïve. Back then, I thought if it wasn't one of the incurables like AIDS, then if it had a name, it had a cure. My doc gave me more pain medicine and told me I needed a rheumatologist and sent me home.
I am a researcher so I looked fibromyalgia up online. The more I read, the more I said 'um...no! I do NOT have something incurable! He just made a mistake.' So I got copies of all of my medical records and set out to find a doctor who would tell me this was not fibro, it was something curable. No big deal.
11 doctors. Yup! I was determined! 11 doctors told me I had fibro. I took the pain meds until my family decided that if I took pain meds I would end up being a junkie someday (Never listen to people who do not understand what is wrong with you!) and then for the next 11 years, I did my best to ignore the pain. What I did not know was that I also had cmp and left untreated, it progresses. It too is incurable but I left it untreated because I decided I was done with doctors and it worsened my fibro as it progressed.
I finally decided I had had enough and found a team of medical professionals to help me. I have tried every new drug out there and all most died a couple of different times from allergic reactions. I was sent to pain management as a last resort and it has been the best thing for me. I have a cardiologist (because I had a heart attack at 36. I didn't know that my body quickly converts processed sugars into arterial plaque), I also have a chiropractor, a GP and a Pain management doctor and they all work together. I love that about them! My PM doctor insisted that I join a gym and swim in the salt water pool. Something in the saline helps the muscles and I do feel better after a swim. I have lost 50 pounds. I stretch and eat healthy - something I had to seriously educate myself on. Overall I am much better today. I still hurt but I can function. I am having more good days than bad.
I keep encouraging people to treat your whole body. Chronic pain is not just in your muscles, it's all over. It even gets in your head. We need hydration, fruits and veggies, protein, whole grains but we also need sleep (something hard to come by for many of us), we need gentle exercise so we don't get stiff and sore as often and we need our friends and families to understand. I know not everyone wants to bother to understand so I stay away from those people. The negativity does me no good. I have met some amazing people with these diseases. Strong, determined people who I am proud to call my friends. You are not your disease. You are an amazing person who just happens to have a disease.
Now, I need a nap :) Sweet dreams, ya'll!
Before I continue, I want you to know that if you want to, you can leave comments at the end of each post. I would like to get to know you. I wonder who reads this blog. I also wonder if it is helpful to anyone.
I am nobody special. Unique, probably. Out spoken, definitely. But I don't fancy myself some disease related guru or legend in my own mind. I am just a woman who was born with a disease that affects my life way more than I would like. I am other things too though; I am a wife of 20 years to man whom I both adore and want to smack depending on what comes out of his mouth. :) I am a Mother to three not so small children; two of which are heading off to college in the fall. Life would be far less funny without those little gremlins. Them, I always adore! I am a friend to some of the strongest women I have ever known. I am in awe of them. The way that they conquer each day with the amount of pain they are in leaves me humbled on a regular basis. I am an artist and a writer who never feels that her work is good enough even though others gush over it. I am a animal lover and a gardener and I have a heart for the children who show up at my house broken and lost because maybe their parents didn't want to be parents. I do all that I can to help them because I know just how it feels to be them.
I was born with fibromyalgia but for years I did not know that it what it was. I hurt, it seemed like all of the time as a child but I was abused and attributed the pain to the constant beatings. Who wouldn't? My Grandmother had Fibro, my Mother has fibro, my Aunt has fibro. I pray often that I did not pass it to one of my children, though I'm starting to become more and more suspicious of one of them. She complains that her legs hurt at night. It's agony for her after a day of running and playing on the trampoline -'Mine always did too when I was little.' Her arms and back ache - 'oh, no!'. Her clothes hurt her skin -'Please God, don't let this happen to her. She's just a baby!' I'm terrified for her.
By the time I was 25, I was certain that I had arthritis. Between my childhood and my work in health care, lifting people, turning people, bathing- and once a man that weighed 300 pounds more than me fell on me and it took a year to heal from that damage. I knew you couldn't do much for arthritis so I went about my merry way, taking lots of Tylenol over the years until I was 28 and the pain literally dropped me one day.
We had an apricot tree outside of our fence that was just loaded and I wanted to make jam so I grabbed a basket and went out to pick a bunch of them. The basket was too heavy to carry all the way back around the fence so I put it over the fence in the backyard and started walking up the sidewalk to get to the front gate. I felt great until I got to the corner of the fence; it was just all of the sudden. No warning. Pain hit my entire body and took me down. I grabbed at the fence to try to hold myself up but my arms were not going to support me. I sat on that sidewalk for about 40 minutes before I had the strength to crawl to a handhold and use the fence to pull myself up. I leaned on that fence for support until I made it inside the yard and then crawled on hands and knees to the front door. I had NO IDEA what was happening but I was TERRIFIED! I called my husband at work and he took me to the E.R. but they found nothing wrong. They just gave me some pain meds, told me to follow up with my family doctor and send me home.
I was constantly nervous until I got in to see my doctor. So afraid it would happen again. He sent me for blood work and that's when the tests began. Months of tests. CT scan, MRI, tests for Lyme disease and Lupus and STD's...I thought it would never end. Every test came back negative. That is when my doctor did a pressure point test and asked me 20 minutes worth of questions and said, 'You have fibromyalgia.' Okay, so now we know what it is, we can cure it. I was that naïve. Back then, I thought if it wasn't one of the incurables like AIDS, then if it had a name, it had a cure. My doc gave me more pain medicine and told me I needed a rheumatologist and sent me home.
I am a researcher so I looked fibromyalgia up online. The more I read, the more I said 'um...no! I do NOT have something incurable! He just made a mistake.' So I got copies of all of my medical records and set out to find a doctor who would tell me this was not fibro, it was something curable. No big deal.
11 doctors. Yup! I was determined! 11 doctors told me I had fibro. I took the pain meds until my family decided that if I took pain meds I would end up being a junkie someday (Never listen to people who do not understand what is wrong with you!) and then for the next 11 years, I did my best to ignore the pain. What I did not know was that I also had cmp and left untreated, it progresses. It too is incurable but I left it untreated because I decided I was done with doctors and it worsened my fibro as it progressed.
I finally decided I had had enough and found a team of medical professionals to help me. I have tried every new drug out there and all most died a couple of different times from allergic reactions. I was sent to pain management as a last resort and it has been the best thing for me. I have a cardiologist (because I had a heart attack at 36. I didn't know that my body quickly converts processed sugars into arterial plaque), I also have a chiropractor, a GP and a Pain management doctor and they all work together. I love that about them! My PM doctor insisted that I join a gym and swim in the salt water pool. Something in the saline helps the muscles and I do feel better after a swim. I have lost 50 pounds. I stretch and eat healthy - something I had to seriously educate myself on. Overall I am much better today. I still hurt but I can function. I am having more good days than bad.
I keep encouraging people to treat your whole body. Chronic pain is not just in your muscles, it's all over. It even gets in your head. We need hydration, fruits and veggies, protein, whole grains but we also need sleep (something hard to come by for many of us), we need gentle exercise so we don't get stiff and sore as often and we need our friends and families to understand. I know not everyone wants to bother to understand so I stay away from those people. The negativity does me no good. I have met some amazing people with these diseases. Strong, determined people who I am proud to call my friends. You are not your disease. You are an amazing person who just happens to have a disease.
Now, I need a nap :) Sweet dreams, ya'll!
Thursday, June 6, 2013
Things In The Dark
You know, I am hesitant to write what I know I must tonight. My research didn't take me where I had hoped it would. Those who know me know that when I research something, I do not stop until there is nothing left to find. I want the truth, the whole truth and nothing but the truth so help me God.
I thought, 'Hey, I think I'll research the four most common drugs used to treat fibro and let people know what they are good for.'
Doing the research was like walking into a dark cave, moving further and further from the light, listening to scaly things scratch the walls and feeling their hot breath on my neck right up until the floor disappeared and I was free falling in the cold blackness seeing the truth flash in my mind while listening to maniacal laughter. That is my uber dramatic way of saying that what I found scared the crap out of me.
I fully realize that this post is going to make some people mad. Try to keep in mind that I did not create the drugs or write the reports. I did the research that is out there for you to find too if you are so inclined. I hope that you are. Please don't just take my word for it. Go do the research for yourself especially if you are on one of these drugs. Reading the information for yourself will empower you and set you on the road to finding less toxic drugs to treat your chronic pain.
I'm going to start with Neurontin. Neurontin (Gabpentin) was FDA approved for nerve pain and seizure disorders. Nothing else. Ever. When fibromyalgia was taken off the orphan disease list (orphaned because not enough people had been diagnosed to make the disease profitable), Pfizer saw an opportunity to market it's newest drug, Neurontin as a treatment. This was never FDA approved and Pfizer was slapped with a fine for prescribing this medicine for off label uses. THEY PAID THE FINE. You see? Pay the fine and the drug doesn't get pulled from the market.
In December 2004, Neurontin's patent ran out which meant that Pfizers competitors could market a generic version. Now, by then, Neurontin had not only been shown ineffective after a three month period in fibro, but 14% of users had committed suicide. It didn't matter now because Pfizer had come out with Neurontins' successor LYRICA. Lyrica also began life as an anti-seizure drug. It was never meant to treat fibromyalgia. The side effects run from dizziness to death and about 30 side effects in between but once again, Pfizer prescribed this new drug for off label use (fibromyalgia and diabetic neuropathy). Whistleblowers went to the Department of Justice because patients once again, began dying. Pfizer signed a Corporate Integrity Agreement with the DOJ and paid the $2.3 Billion dollar fine and continued on their merry way, marketing Lyrica to FM patients. Lyrica is currently Pfizers biggest seller, bringing in over $3 Billion a year. Lyricas' patent runs out at the end of 2013. Expect Pfizer to come out with a new fibro drug.
Savella was FDA approved for fibromyalgia treatment on January 14, 2009. It was among the first fibromyalgia specific drugs (currently there are two) to hit the market. Europe approved the drug as an anti-depressant but refused to allow it to be used in fibromyalgia patients, claiming that the marginal benefits were far outweighed by the harm that the drug causes. As of January 20, 2013 in the U.S. a group of patients called The Public Citizen had filed a petition with the FDA to recall the drug along with a class action law suit claiming that Savella had caused irreparable damage in surviving patients and the deaths of loved ones. Both the outcome of the petition for recall and the law suit are still pending. Savella helped marginally with fibro pain for three months but had a list of more than 40 side effects, the worst being that a full 20% of people taking Savella had sudden heart attacks and strokes, half of those resulting in sudden death. Even the FDA claims that aside from the side effects, more than 90% of users receive no benefit from the drug.
Cymbalta - As early as 1990, the FDA had received numerous reports that the drug caused suicidal thoughts in patients aged 18-25. Later, it was discovered that there is a statistically significant greater risk of death in those who had coronary artery disease while also using Cymbalta. Patients with CAD who remained on the drug for three years died at a rate of 21.4%. That's a huge number! Cymbalta was also shown to increase liver disease and liver failure. As a result, the FDA put the strongest warning that they have at their disposal on ALL of these drugs. The Black Box warning. A Black Box warning means that while the drug can still be sold, you take it at your own peril.
To be completely fair in my research, I also looked up the medication that I am prescribed through pain management. I found warnings that included; do not take this drug if you have more than one alcoholic drink per day. I also found many instances where patients did not follow dosing schedules and took large amounts of the drug to get high (some took as much as 70mg!) but even then, with stomach pumping and antidotal medications, those people did not die, though they did suffer liver damage due to the acetaminophen overdose.
I will not tell you what you can and can not take for your chronic pain. I am not here to judge anyone for what helps them and what doesn't. I do, however, want to encourage you to research this for yourself. All drugs are toxic to the body over time. These just happen to be even more toxic than others. When fibromyalgia came off the orphan list, there was a rush by the pharmaceutical companies to cash in even though they had not studied this disease enough to be able to treat it effectively. It was money first, patients later and it still is. There are legitimate scientists who have not jumped on the money train yet who are trying to unravel this disease. Help is coming. But for now, for me personally, I go old school with the tried and true drugs plus a healthy eating plan, exercise and time for me.
There is a book that I highly recommend for the newly diagnosed. Fibromyalgia and Chronic Myofascial Pain A Survival Manual by Devin Starlanyl and Mary Ellen Copeland. You can get it on both Amazon and ebay. It is chock full of symptoms and what to do for them by people who have fibro too. It has been especially helpful to me since I have both fibro and cmp.
I beg people to research everything their doctor says, every drug prescribed and the diseases they have been diagnosed with. I was pretty upset that this post didn't go the way I had hoped but I won't lie to you either. There are ways to handle this disease without harming ourselves further. I'm wishing you a pain free day. Now that I bummed out, I'm going to go look at grumpy cat pics for a while. I need something good to pull me back up.
I thought, 'Hey, I think I'll research the four most common drugs used to treat fibro and let people know what they are good for.'
Doing the research was like walking into a dark cave, moving further and further from the light, listening to scaly things scratch the walls and feeling their hot breath on my neck right up until the floor disappeared and I was free falling in the cold blackness seeing the truth flash in my mind while listening to maniacal laughter. That is my uber dramatic way of saying that what I found scared the crap out of me.
I fully realize that this post is going to make some people mad. Try to keep in mind that I did not create the drugs or write the reports. I did the research that is out there for you to find too if you are so inclined. I hope that you are. Please don't just take my word for it. Go do the research for yourself especially if you are on one of these drugs. Reading the information for yourself will empower you and set you on the road to finding less toxic drugs to treat your chronic pain.
I'm going to start with Neurontin. Neurontin (Gabpentin) was FDA approved for nerve pain and seizure disorders. Nothing else. Ever. When fibromyalgia was taken off the orphan disease list (orphaned because not enough people had been diagnosed to make the disease profitable), Pfizer saw an opportunity to market it's newest drug, Neurontin as a treatment. This was never FDA approved and Pfizer was slapped with a fine for prescribing this medicine for off label uses. THEY PAID THE FINE. You see? Pay the fine and the drug doesn't get pulled from the market.
In December 2004, Neurontin's patent ran out which meant that Pfizers competitors could market a generic version. Now, by then, Neurontin had not only been shown ineffective after a three month period in fibro, but 14% of users had committed suicide. It didn't matter now because Pfizer had come out with Neurontins' successor LYRICA. Lyrica also began life as an anti-seizure drug. It was never meant to treat fibromyalgia. The side effects run from dizziness to death and about 30 side effects in between but once again, Pfizer prescribed this new drug for off label use (fibromyalgia and diabetic neuropathy). Whistleblowers went to the Department of Justice because patients once again, began dying. Pfizer signed a Corporate Integrity Agreement with the DOJ and paid the $2.3 Billion dollar fine and continued on their merry way, marketing Lyrica to FM patients. Lyrica is currently Pfizers biggest seller, bringing in over $3 Billion a year. Lyricas' patent runs out at the end of 2013. Expect Pfizer to come out with a new fibro drug.
Savella was FDA approved for fibromyalgia treatment on January 14, 2009. It was among the first fibromyalgia specific drugs (currently there are two) to hit the market. Europe approved the drug as an anti-depressant but refused to allow it to be used in fibromyalgia patients, claiming that the marginal benefits were far outweighed by the harm that the drug causes. As of January 20, 2013 in the U.S. a group of patients called The Public Citizen had filed a petition with the FDA to recall the drug along with a class action law suit claiming that Savella had caused irreparable damage in surviving patients and the deaths of loved ones. Both the outcome of the petition for recall and the law suit are still pending. Savella helped marginally with fibro pain for three months but had a list of more than 40 side effects, the worst being that a full 20% of people taking Savella had sudden heart attacks and strokes, half of those resulting in sudden death. Even the FDA claims that aside from the side effects, more than 90% of users receive no benefit from the drug.
Cymbalta - As early as 1990, the FDA had received numerous reports that the drug caused suicidal thoughts in patients aged 18-25. Later, it was discovered that there is a statistically significant greater risk of death in those who had coronary artery disease while also using Cymbalta. Patients with CAD who remained on the drug for three years died at a rate of 21.4%. That's a huge number! Cymbalta was also shown to increase liver disease and liver failure. As a result, the FDA put the strongest warning that they have at their disposal on ALL of these drugs. The Black Box warning. A Black Box warning means that while the drug can still be sold, you take it at your own peril.
To be completely fair in my research, I also looked up the medication that I am prescribed through pain management. I found warnings that included; do not take this drug if you have more than one alcoholic drink per day. I also found many instances where patients did not follow dosing schedules and took large amounts of the drug to get high (some took as much as 70mg!) but even then, with stomach pumping and antidotal medications, those people did not die, though they did suffer liver damage due to the acetaminophen overdose.
I will not tell you what you can and can not take for your chronic pain. I am not here to judge anyone for what helps them and what doesn't. I do, however, want to encourage you to research this for yourself. All drugs are toxic to the body over time. These just happen to be even more toxic than others. When fibromyalgia came off the orphan list, there was a rush by the pharmaceutical companies to cash in even though they had not studied this disease enough to be able to treat it effectively. It was money first, patients later and it still is. There are legitimate scientists who have not jumped on the money train yet who are trying to unravel this disease. Help is coming. But for now, for me personally, I go old school with the tried and true drugs plus a healthy eating plan, exercise and time for me.
There is a book that I highly recommend for the newly diagnosed. Fibromyalgia and Chronic Myofascial Pain A Survival Manual by Devin Starlanyl and Mary Ellen Copeland. You can get it on both Amazon and ebay. It is chock full of symptoms and what to do for them by people who have fibro too. It has been especially helpful to me since I have both fibro and cmp.
I beg people to research everything their doctor says, every drug prescribed and the diseases they have been diagnosed with. I was pretty upset that this post didn't go the way I had hoped but I won't lie to you either. There are ways to handle this disease without harming ourselves further. I'm wishing you a pain free day. Now that I bummed out, I'm going to go look at grumpy cat pics for a while. I need something good to pull me back up.
Wednesday, June 5, 2013
I'm World Wide, Baby!
I just took a look at my audience and my blog is being read in the United States, the U.K., Germany and now China! Thank you! I am both surprised and honored that you actually want to read my little blog. :)
I was talking to my husband tonight about the pitfalls that those who are newly diagnosed with fibromyalgia face. I have been doing my best to help those people pick their way through the maze of doctors and tests and management and the emotional toll that being diagnosed with a incurable disease takes.
Fibromyalgia is both a giver and a taker. It takes your good health and gives you levels of pain that you never thought possible. It takes your freedom of movement and gives you stiff, painful muscles. It takes your self esteem and gives you fear, panic and depression. It takes away the people who you thought were friends because they lack understanding but it will give you people who do understand and truly care for you.
Chronic illness is understandably viewed as an enemy but I believe it can also be viewed as a friend. It can tear down the illusion of who you thought you were and show you who you really are inside. It can show you just how strong you really are and can help you to grow emotionally and, if you let it, physically stronger.
In my own experience, I have found that having a chronic pain illness has made me a stronger person. I will not let these diseases beat me down. I am not ready to give up on life. I will always get back up after a bad flare. Where I used to feel insecure in who I was, concerned about what other people thought of me, I have found that I no longer worry what anyone thinks of me. They don't live my life, nor do they face my challenges and in the end, I am the only person who will have to answer for my life. So what do I care what they think?
I have educated myself about my illnesses and I am able to have honest conversations with my doctors in 'their own language' (medical terminology) and while I have encountered doctors who are surprised and even a little bothered by my knowledge of my own body, others appreciate that I am able to communicate with them in a clear, concise manner. I like those guys!
I have lost people who I thought were friends because they didn't want to understand but I have gained a whole host of friends who not only understand, but care about me and do not define me by my illness.
You can allow chronic illness to knock you down and you can stay down. I have seen it happen much too often. People who, rather than fight back, languish in their beds or on their couches, gaining weight and feeling sorry for themselves, their favorite thing to say is "I can't". Just laying there, day after day, watching life pass them by while becoming more and more apathetic.
I chose another path. I have been knocked down but I get back up. I refuse to give into depression over the things that I can no longer do. I would rather focus on the things that I can do and then find new things to add to that list. I have days when I have to take it easy and lay down but I never allow myself to stay down for more than one day. I get up and stretch. I take a walk.
I do not want anyone to think that I have a problem with those who are over weight. I used to be over weight. I found that the pain was worse while I was over weight because my body had to work harder to support that weight, So I lost fifty pounds. It took a while but I did it. I educated myself about proper nutrition. I found the better the food that I put in my body, the better I feel.
The more that we can do to give our bodies the ammunition to fight back, the better our quality of life. It is so important to educate yourself on your illness. Keep up with the latest research, learn what exercise you can do without hurting yourself, learn about nutrition and how to read labels. Chronic illness is a whole body problem. The whole body must be treated. Including the spirit. Take time for you each day. It doesn't matter if it is prayer, meditation, yoga or just sitting quietly looking out of a window. 'You time' matters in your health program.
I go on a few different fibromyalgia facebook pages and offer advice to the newly diagnosed. I am no expert but I am more experienced than I would like to be. The thing that truly troubles me is the sheer volume of newly diagnosed people. What is happening? I have a pretty good idea and I will write about it in my next post but for now my point is, these people are scared. It breaks my heart so I do my best to help. I get a benefit from offering help too. When I help someone or compliment a total stranger (something that I make a point of doing every time I leave our home), I get a rush of endorphins because it makes me happy to help. Those endorphins also drive down my pain levels. Try doing something good for another person and see how you feel. Especially if you are having a particularly painful day and watch your pain levels drop.
That's my advice for now. I hope you all have a pain free day and THANK YOU for reading my little blog!
I was talking to my husband tonight about the pitfalls that those who are newly diagnosed with fibromyalgia face. I have been doing my best to help those people pick their way through the maze of doctors and tests and management and the emotional toll that being diagnosed with a incurable disease takes.
Fibromyalgia is both a giver and a taker. It takes your good health and gives you levels of pain that you never thought possible. It takes your freedom of movement and gives you stiff, painful muscles. It takes your self esteem and gives you fear, panic and depression. It takes away the people who you thought were friends because they lack understanding but it will give you people who do understand and truly care for you.
Chronic illness is understandably viewed as an enemy but I believe it can also be viewed as a friend. It can tear down the illusion of who you thought you were and show you who you really are inside. It can show you just how strong you really are and can help you to grow emotionally and, if you let it, physically stronger.
In my own experience, I have found that having a chronic pain illness has made me a stronger person. I will not let these diseases beat me down. I am not ready to give up on life. I will always get back up after a bad flare. Where I used to feel insecure in who I was, concerned about what other people thought of me, I have found that I no longer worry what anyone thinks of me. They don't live my life, nor do they face my challenges and in the end, I am the only person who will have to answer for my life. So what do I care what they think?
I have educated myself about my illnesses and I am able to have honest conversations with my doctors in 'their own language' (medical terminology) and while I have encountered doctors who are surprised and even a little bothered by my knowledge of my own body, others appreciate that I am able to communicate with them in a clear, concise manner. I like those guys!
I have lost people who I thought were friends because they didn't want to understand but I have gained a whole host of friends who not only understand, but care about me and do not define me by my illness.
You can allow chronic illness to knock you down and you can stay down. I have seen it happen much too often. People who, rather than fight back, languish in their beds or on their couches, gaining weight and feeling sorry for themselves, their favorite thing to say is "I can't". Just laying there, day after day, watching life pass them by while becoming more and more apathetic.
I chose another path. I have been knocked down but I get back up. I refuse to give into depression over the things that I can no longer do. I would rather focus on the things that I can do and then find new things to add to that list. I have days when I have to take it easy and lay down but I never allow myself to stay down for more than one day. I get up and stretch. I take a walk.
I do not want anyone to think that I have a problem with those who are over weight. I used to be over weight. I found that the pain was worse while I was over weight because my body had to work harder to support that weight, So I lost fifty pounds. It took a while but I did it. I educated myself about proper nutrition. I found the better the food that I put in my body, the better I feel.
The more that we can do to give our bodies the ammunition to fight back, the better our quality of life. It is so important to educate yourself on your illness. Keep up with the latest research, learn what exercise you can do without hurting yourself, learn about nutrition and how to read labels. Chronic illness is a whole body problem. The whole body must be treated. Including the spirit. Take time for you each day. It doesn't matter if it is prayer, meditation, yoga or just sitting quietly looking out of a window. 'You time' matters in your health program.
I go on a few different fibromyalgia facebook pages and offer advice to the newly diagnosed. I am no expert but I am more experienced than I would like to be. The thing that truly troubles me is the sheer volume of newly diagnosed people. What is happening? I have a pretty good idea and I will write about it in my next post but for now my point is, these people are scared. It breaks my heart so I do my best to help. I get a benefit from offering help too. When I help someone or compliment a total stranger (something that I make a point of doing every time I leave our home), I get a rush of endorphins because it makes me happy to help. Those endorphins also drive down my pain levels. Try doing something good for another person and see how you feel. Especially if you are having a particularly painful day and watch your pain levels drop.
That's my advice for now. I hope you all have a pain free day and THANK YOU for reading my little blog!
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