I wanted to do a post Thursday for Fibromyalgia Awareness Day, which was May 12th. Blogger was not available though, so I am having to do it a couple days late. The purpose, I'm sure you figured it out, is to raise awareness for fibromyalgia. It's a newly recognized syndrome that is not recognized throughout all medical communities. Those of us that have it would love for it to be recognized by all medical professionals as the chronic disorder that it is. Hopefully then, insurance companies will be a little more sympathetic and cover more of the recommended treatments!! I thought I'd share with you a little today about what fibromyalgia is, what causes it, and how it's treated. I thought I'd tell you a little bit of my story too!!
What is it?
Fibromyalgia (pronounced fy-bro-my-AL-ja) is a complex, chronic pain disorder that affects people physically, mentally, and socially. Fibromyalgia is not a disease (which is a medical condition with a specific cause and recognizable signs/symptoms). It is a syndrome - a collection of signs, symptoms, and medical problems that occur together but are not related to a specific, identifiable cause. (CAN YOU SAY FRUSTRATING?!?!?!?!!) It's characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue, and psychological distress. Other symptoms that vary from person to person include problems with cognitive functioning, IBS, headaches/migraines, anxiety/depression, and environmental sensitivities.
What causes it?
Recent research is pointing to a genetic component. It is often seen passed down in families. Fibromyalgia often develops after it is "triggered" by a physical trauma, like an illness or injury. As of now, the medical community is drawing increasing attention to the central nervous system being the underlying problem of fibromyalgia. Recent studies suggest that fibromyalgia patients have a disturbance in pain processing and an amplified response to stimuli that would not ordinarily be painful in healthy individuals.
What's the treatment?
Since there is no known cure for fibromyalgia, treatment focuses on relieving symptoms and improving function. Many prescription medications have been approved by the FDA over the past several years to reduce pain levels and improve sleep. (Problem with this route is they tend to be very expensive...even with insurance coverage.) Massage, acupuncture, chiropractic, and yoga have also shown promise in helping to relieve pain. The best treatment though is to increase rest, pace activities, reduce stress, practice relaxation, and improve nutrition to minimize symptoms and improve quality of life.
My story:
This is difficult for me to put myself out there. You can ask my husband...he knows that I will not ask for help because I don't like fibro to "get the best of me". I keep reminding myself that I've go to do it to raise awareness...rather than feeling people will feel sorry for me.
I have had numbness in my arms on and off growing up. I saw a doctor for it once and he told my mom it was a mild case of carpal tunnel syndrome. At the time he told me as long as it wasn't constant numbness and it didn't bother me, it would be ok. As I got older, I started going through phases of my hands swelling and hurting so badly. Every time it happened I was out shopping. The nurse in me blew it off and I just figured it was fluid build up from having my arms at my sides while I was shopping all day. It was not until September 2007 (3 months before I got married, and a month after starting a new job) that I realized something more was going on.
My husband (fiance at the time) and I had gone to his best friend's birthday party. Afterward we had gone shopping at Walmart. As we walked around the store, my hands did the weird swelling/hurting thing. I told my husband that I needed to sit down for a minute to make it stop. We sat down for 30 minutes and it didn't go away. I went home, took some Tylenol, and went to sleep thinking I had just over done it. When I woke up the next day the swelling had gone down, but the pain continued. As the days went on, the pain moved up my arm to my elbows and eventually up to my shoulders.
To make the story a little bit shorter I'm going to skip all the frustrating, waste of time, waste of money doctor visits I had in the following months. I can tell you though, from October until December I saw 5 different doctors/specialists. They kept referring me on to someone else, trying out different medications, running all kinds of tests...just to tell me everything always came back normal. During these months I was stressed...learning a new job, planning a wedding, buying a house, starting a life with my husband, and on top of it all I then had to deal with constant, daily pain in both arms and now in both legs.
It was really hard emotionally to deal with the happiness and excitement of learning new things at work and planning my wedding and going house shopping on the weekends...while at the same time dealing with the frustration of doctors "blowing me off", constant pain, and being angry at God for letting this happen at this time in my life. I felt that it was not fair to Justin...he proposed to a girl that was healthy and normal, and 2 months later she's in constant pain and cranky because of it. He didn't sign up for that!!
The closer to December 29th (our wedding) we got, the more I pushed the pain to the back of my mind. I had other things that were more important and I couldn't let that get in my way. This is where I decided that I was not going to let whatever was wrong with me beat me. We had a beautiful wedding...I don't remember a lot of the small details. I can tell you that I remember seeing my husband's face at the end of the aisle when the doors opened and thinking that whatever had happened the previous few months did not matter in that moment. That he loved me for who I was, who I had become, and for me...and he was not going to let the stupid health issues get in the way. I will tell you now that it's not always easy, and it's sometimes hard for him to understand...but he has been amazing in helping me through it. Justin is my rock, my biggest supporter, understanding, and above all my best friend. I could not have made it to where I am today without his love.
As the married months passed, the pain began to creep back in to constant mode. I put it off and put it off and finally had to go find another new doctor. In June of 2008 I had hit rock bottom and was at a breaking point. I feel so bad for the doctor I saw, but I can honestly say he has been a God send. The moment he walked into the exam room that day, I burst into tears and cried the entire time I was meeting with him. He was very comforting and promised me he would get to the bottom of what was going on. He had a feeling it was fibro, but wanted me to meet with a rheumatologist in his office to have a couple tests run to rule out arthritis/lupus/etc. As usual, all came back normal. I did have enough tender points for them to diagnose me with fibro...and so the treatment began.
I was first stated out on Cymbalta. It worked well and helped me learn to cope with my disorder. Over the next few months I did a lot of research on fibro and learned all I could. Not every day was a good day, but I know I had more good days than bad. About a year after starting on Cymbalta I began to have really bad side effects. I got off the Cymbalta and went through many more cycles of flare ups than I had been experiencing. Over that summer I did a lot of research on fibro studies. I came up with many interesting thoughts on diet that increases pain sensation in fibro patients. One particular study linked gluten to increased pain response.
In August 2009 I decided to begin a gluten free diet. What did I have to lose? I will be the first to admit that it was not easy. It's really hard to give up bread, pasta, and cookies when those are your favorite things to eat!! I did it though and I cannot tell you the difference it made in how I felt. I thought it was normal to be lethargic and bloated, with a cramping stomach after eating pasta or breads. Apparently it's not and I had been living my entire life that way. Once I cut gluten out of my diet the stomach issues stopped, and the fibro flare ups were few and far between.
I have now been on a gluten free diet for a year and 9 months and it is the best health decision I have ever made. I do not ever want to go back on a gluten full diet. There have been times I haven't been as good as I should have...sometimes a cookie or roll gets the best of me. It's never worth it or as good as I remember it being!! When I have the indulgence, I do pay for it later with a fibro relapse. For the most part though I have gotten used to the daily pain and am able to cope. I still go through periods of frustration with God, and I'm constantly asking "why me?" I'm content right now knowing that when the time is right, God will show me why He's taken me down this path.
I know you have been asking yourself this whole time, what does she mean she has pain all the time? The best way I know to describe it where everyone can relate is it's like growing pains we all had while growing up. Except multiply the growing pains in your arms and legs x10 and make it in both arms all the way up and down and both legs. That's just the tip of the ice burg on how I feel on good days. I go through phases of feeling like I'm in a mental fog (AKA "fibro fog"). Those times are frustrating because I just forget everything and don't have a reason for it!! With the help of medicine, I'm not always "down" on how fibro makes me feel. I typically have more good days than bad!! I do have tender points. Grabbing my elbow/knee or poking me in the back/stomach hurts really bad. Most of the time it doesn't take much pressure to bring tears to my eyes.
I'm telling you this to make you aware of fibromyalgia...not for you to feel bad for me or sad. This is a way of life for me and I really feel that learning to cope with it has made me a better, more sympathetic nurse. It has also changed the person I am for the better. My case of fibro is not nearly as severe as some people out there. I'm soooo blessed to be able to work, hang out with family and friends, and still be able to keep my house in order. There are many people out there that are unable to function and do not receive disability because of their diagnosis. Those are the people I've written for today. Those are the people that awareness will really make a difference for. Those are the people that really need our prayers.
My husband (fiance at the time) and I had gone to his best friend's birthday party. Afterward we had gone shopping at Walmart. As we walked around the store, my hands did the weird swelling/hurting thing. I told my husband that I needed to sit down for a minute to make it stop. We sat down for 30 minutes and it didn't go away. I went home, took some Tylenol, and went to sleep thinking I had just over done it. When I woke up the next day the swelling had gone down, but the pain continued. As the days went on, the pain moved up my arm to my elbows and eventually up to my shoulders.
To make the story a little bit shorter I'm going to skip all the frustrating, waste of time, waste of money doctor visits I had in the following months. I can tell you though, from October until December I saw 5 different doctors/specialists. They kept referring me on to someone else, trying out different medications, running all kinds of tests...just to tell me everything always came back normal. During these months I was stressed...learning a new job, planning a wedding, buying a house, starting a life with my husband, and on top of it all I then had to deal with constant, daily pain in both arms and now in both legs.
It was really hard emotionally to deal with the happiness and excitement of learning new things at work and planning my wedding and going house shopping on the weekends...while at the same time dealing with the frustration of doctors "blowing me off", constant pain, and being angry at God for letting this happen at this time in my life. I felt that it was not fair to Justin...he proposed to a girl that was healthy and normal, and 2 months later she's in constant pain and cranky because of it. He didn't sign up for that!!
The closer to December 29th (our wedding) we got, the more I pushed the pain to the back of my mind. I had other things that were more important and I couldn't let that get in my way. This is where I decided that I was not going to let whatever was wrong with me beat me. We had a beautiful wedding...I don't remember a lot of the small details. I can tell you that I remember seeing my husband's face at the end of the aisle when the doors opened and thinking that whatever had happened the previous few months did not matter in that moment. That he loved me for who I was, who I had become, and for me...and he was not going to let the stupid health issues get in the way. I will tell you now that it's not always easy, and it's sometimes hard for him to understand...but he has been amazing in helping me through it. Justin is my rock, my biggest supporter, understanding, and above all my best friend. I could not have made it to where I am today without his love.
As the married months passed, the pain began to creep back in to constant mode. I put it off and put it off and finally had to go find another new doctor. In June of 2008 I had hit rock bottom and was at a breaking point. I feel so bad for the doctor I saw, but I can honestly say he has been a God send. The moment he walked into the exam room that day, I burst into tears and cried the entire time I was meeting with him. He was very comforting and promised me he would get to the bottom of what was going on. He had a feeling it was fibro, but wanted me to meet with a rheumatologist in his office to have a couple tests run to rule out arthritis/lupus/etc. As usual, all came back normal. I did have enough tender points for them to diagnose me with fibro...and so the treatment began.
I was first stated out on Cymbalta. It worked well and helped me learn to cope with my disorder. Over the next few months I did a lot of research on fibro and learned all I could. Not every day was a good day, but I know I had more good days than bad. About a year after starting on Cymbalta I began to have really bad side effects. I got off the Cymbalta and went through many more cycles of flare ups than I had been experiencing. Over that summer I did a lot of research on fibro studies. I came up with many interesting thoughts on diet that increases pain sensation in fibro patients. One particular study linked gluten to increased pain response.
In August 2009 I decided to begin a gluten free diet. What did I have to lose? I will be the first to admit that it was not easy. It's really hard to give up bread, pasta, and cookies when those are your favorite things to eat!! I did it though and I cannot tell you the difference it made in how I felt. I thought it was normal to be lethargic and bloated, with a cramping stomach after eating pasta or breads. Apparently it's not and I had been living my entire life that way. Once I cut gluten out of my diet the stomach issues stopped, and the fibro flare ups were few and far between.
I have now been on a gluten free diet for a year and 9 months and it is the best health decision I have ever made. I do not ever want to go back on a gluten full diet. There have been times I haven't been as good as I should have...sometimes a cookie or roll gets the best of me. It's never worth it or as good as I remember it being!! When I have the indulgence, I do pay for it later with a fibro relapse. For the most part though I have gotten used to the daily pain and am able to cope. I still go through periods of frustration with God, and I'm constantly asking "why me?" I'm content right now knowing that when the time is right, God will show me why He's taken me down this path.
I know you have been asking yourself this whole time, what does she mean she has pain all the time? The best way I know to describe it where everyone can relate is it's like growing pains we all had while growing up. Except multiply the growing pains in your arms and legs x10 and make it in both arms all the way up and down and both legs. That's just the tip of the ice burg on how I feel on good days. I go through phases of feeling like I'm in a mental fog (AKA "fibro fog"). Those times are frustrating because I just forget everything and don't have a reason for it!! With the help of medicine, I'm not always "down" on how fibro makes me feel. I typically have more good days than bad!! I do have tender points. Grabbing my elbow/knee or poking me in the back/stomach hurts really bad. Most of the time it doesn't take much pressure to bring tears to my eyes.
I'm telling you this to make you aware of fibromyalgia...not for you to feel bad for me or sad. This is a way of life for me and I really feel that learning to cope with it has made me a better, more sympathetic nurse. It has also changed the person I am for the better. My case of fibro is not nearly as severe as some people out there. I'm soooo blessed to be able to work, hang out with family and friends, and still be able to keep my house in order. There are many people out there that are unable to function and do not receive disability because of their diagnosis. Those are the people I've written for today. Those are the people that awareness will really make a difference for. Those are the people that really need our prayers.
No comments:
Post a Comment