Fibromyalgia and Me(Repeat for April)
Fibromyalgia and Me
This is my story of developing Fibromyalgia, and how my life is now.I was working at a large insurance company in the claims office. We handled accident reports etc, and I did mostly clerical work, as well as mail & file duties. I was on my way to work one morning, and at a stop sign, only a few blocks from where I lived, I was rear ended by another car. Having been in previous rear end accidents, I knew I was going to have some pain, and I did. I went to my Doctor who sent me to physical therapy. After doing this for a few weeks I went to a Chiropractor, and then tried massage therapy. None of these helped me get back to normal. I continued to have pain. My primary care doctor then referred me onto a Rheumatologist. I was lucky, as she was able to diagnose me quickly with Fibromyalgia, and I know it takes many people years to get this diagnosis. Even though I know what I have, it hasn’t been very easy. I spent most of my time in the beginning in denial. I would have the flare ups, and when they were over and I was back to work, in my mind I would say, ok, I am getting better now, and it’s not coming back. However after several months of going through this, getting progressively worse, and more symptoms coming out. I had to quit my job from the pain and other symptoms, and for not performing my job well. I had to finally accept that I have it. It would take me a long time to get through a task that before would take only minutes. My brain didn’t want to function, it wanted to just sit in my head, and do nothing. It was difficult to concentrate and to stay focused on a task. I would perform the same task everyday, and then poof it was gone. How did I do this yesterday? Some days I don’t even remember getting to work. I was in a fog of pain, just moving through the motions, and then I was at my desk. I would ask myself, how did I get here? Waking up in the morning was so agonizing, just to move. The saying “feeling like a Mack truck hit you” applies well. But I was trying desperately to hold on to my job. I even went under the FMLA (Family Medical Leave Act) program at work to protect myself from having to many absences. It didn’t however protect me from harassment from my Supervisor for the absences, or for my performance issues. I was under so much stress everyday at work, which did not help at all. Finally my Doctor and I agreed (with me in tears) it was time to leave my job for my own health.I began having really bad migraines that would last for days. I developed irritable bowel syndrome. The pain is so bad that on many days I can’t even get out of bed. I have flare-ups of pain, and flare ups of the overwhelming fatigue. I spend a lot of time in bed, only getting up for the bathroom, or to get the next ice pack. My doctor prescribed Ultram for the pain, and it does help some. In the morning, I wake up and have a glass of water by my bed. I take the pain medication, and lie back down for at least 1-2 hours for it to work. Then I get up and try to determine what I will feel like that day. Many days the fatigue/pain puts me back to bed. I get about 1-2 days a week that I would call functional. Even on ok days, I still need rest periods.I used to be so active. I walked 12 miles a week, I went dancing, I traveled when I could, and I went out with friends and family on outings and visits. I was actively dating also. Now I do none of these things. I have no social life. My biggest hobby is reading, which I do enjoy, but I want to do the things I used to do. I feel my muscles atrophying, and it really bothers me. My body is loosing this battle, and I think about how my leg muscles used to be so hard from the dancing, and ice-skating. It is very disheartening.After being in another car accident, the Fibromyalgia moved into my right hip, and leg. I have recently taken up pool walking on my good days to try to work on that area, and to get some exercise for my leg muscles. My membership is over and I can’t afford another one. I was only able to go 1-2 days a week at most. I used to be size 7-8, now I am stable at size 16. I do not diet cause I do not want to yo yo, and that’s all diets do. However, I do try to eat healthy foods, when I even feel like eating. Most days I eat nothing till evening.There are a lot of persons with Fibromyalgia, but many are worse than others. Some can continue to work and carry on almost normal lives, but I am one of the more severe cases, and I am unable to work. I have tried to consider many different ways to earn an income, but I come up empty handed. On the day I am to deliver, or be somewhere, or do something, etc.. I would be in bed. To see me on one of my 1-2 days a week, where I can go to the store, and run a couple errands, no one would know what I have to live with on my other days. I hide my pain well. My car will sit for days in the driveway, and anyone waiting on a response from me, would have to just wait. I have filed for Social Security and that is a very long process. They deny everyone on the first time. Is that fair? I don’t think so. I have filed again, and I have gone to their doctor, and they have my Doctor’s notes. But the Social Security system is so poor, that it takes years to obtain a decision. People loose their lives, their cars, their homes, their spouses, and the list goes on. I am lucky; I can live with my mother. I am not proud of this. I am a very independent person, and have lived on my own all my life since I was 17 years old. I am now 46. But I am still lucky to have a kind and understanding Mother who is there for me. This Social Security system is in urgent need of work, and I mean urgent, emergency, right away work. Get it straightened out one way or another for Disabled Americans who have paid their money into it.I also have filed under my Long Term Disability insurance that I paid for through my job. It is just as bad. They don’t want to pay, they don’t want to acknowledge that a person could be in a situation and not be able to work. This is Cigna, but I think they are all about the same. There should be laws against them doing this. My doctor supports me in not being able to work. She wouldn’t do that if it weren’t true, and they know it. But still they say no. They cause people to get lawyers who expect you to pay thousands of dollars to get help from them, and I don’t have it. The insurance companies know this, so they say no, and they know that you are trapped, stuck, even though you paid for the coverage. There are persons who have committed suicide over this. If they have nowhere to go, and no way to support them selves, they’ve lost everything, house, car, what do they have left.I haven’t the money to see Doctors outside my HMO. It alone is 200.00 plus a month plus the medications. I can see why people with chronic pain are committing suicide; it’s like what’s the point. Nowhere to turn, no one to listen, no one to believe you, just more pain, every day. On days when I am in a flare up I have thought that I would be better off dead, not to feel the pain, and not to feel so worthless. And to know it will be days till I feel better again. I have had migraines that last for 2 weeks, it’s insane.I am praying every night to God to get better, and I have stopped feeling guilty that other people are worse off. This is my pain, and I have a right to pray for relief, but I pray for them too. I would not wish this on my worst enemy. Never. I have wasted so much of my life doing nothing, and it drives me crazy. In my mind there are so many things I want to get done, and do, and my body says “oh no you don’t, not today, not tomorrow, maybe next week sometime”. At night while my brain forbids sleep, these are the things that fill my head. What I should be doing, what I want to do, and maybe tomorrow I can get some things done. But then tomorrow comes and I am let down once again.It’s very frustrating, very discouraging, and I can’t imagine anyone not getting depressed from it. I see and read articles that say things like, take control of your pain, don’t let it run your life, and I just have to laugh, and know they have no idea what it is like.I hear others say I need to exercise, and they have no idea how a body with Fibromyalgia reacts to exercise. No matter how many times I stretch, or move, it never goes away and it never gets better.I have hope that in the future, and through research there will be more medication(s) to treat the symptoms of pain and fatigue. A cure would be nice, but for now just relief, and being able to work again would be great. I loved working, and I loved my job, and I miss it a lot. I’ve always been a hard worker and many times worked 2-3 jobs at a time. I went back to college and got my Associates degree when I was in my 30”s, and that was while I worked also. Lazy is not in my make-up, but that is how anyone who knows me now would label me.Thanks for taking the time to read this article, and I am hoping more people will understand what life with severe Fibromyalgia is like. I am hoping that more can be done, and that Social Security, and the Insurance Companies will recognize it for the disability that it is.Here are some helpful websites for those who need them.National Fibromyalgia Association:http://www.fmaware.org/Online support group (lots of good answers here)http://www.ezboard.com/(Click on find your board, then under what is your interest, enter social security, and scroll down till you see Clouds online support group, click on this and you can go from there).
This is my story of developing Fibromyalgia, and how my life is now.I was working at a large insurance company in the claims office. We handled accident reports etc, and I did mostly clerical work, as well as mail & file duties. I was on my way to work one morning, and at a stop sign, only a few blocks from where I lived, I was rear ended by another car. Having been in previous rear end accidents, I knew I was going to have some pain, and I did. I went to my Doctor who sent me to physical therapy. After doing this for a few weeks I went to a Chiropractor, and then tried massage therapy. None of these helped me get back to normal. I continued to have pain. My primary care doctor then referred me onto a Rheumatologist. I was lucky, as she was able to diagnose me quickly with Fibromyalgia, and I know it takes many people years to get this diagnosis. Even though I know what I have, it hasn’t been very easy. I spent most of my time in the beginning in denial. I would have the flare ups, and when they were over and I was back to work, in my mind I would say, ok, I am getting better now, and it’s not coming back. However after several months of going through this, getting progressively worse, and more symptoms coming out. I had to quit my job from the pain and other symptoms, and for not performing my job well. I had to finally accept that I have it. It would take me a long time to get through a task that before would take only minutes. My brain didn’t want to function, it wanted to just sit in my head, and do nothing. It was difficult to concentrate and to stay focused on a task. I would perform the same task everyday, and then poof it was gone. How did I do this yesterday? Some days I don’t even remember getting to work. I was in a fog of pain, just moving through the motions, and then I was at my desk. I would ask myself, how did I get here? Waking up in the morning was so agonizing, just to move. The saying “feeling like a Mack truck hit you” applies well. But I was trying desperately to hold on to my job. I even went under the FMLA (Family Medical Leave Act) program at work to protect myself from having to many absences. It didn’t however protect me from harassment from my Supervisor for the absences, or for my performance issues. I was under so much stress everyday at work, which did not help at all. Finally my Doctor and I agreed (with me in tears) it was time to leave my job for my own health.I began having really bad migraines that would last for days. I developed irritable bowel syndrome. The pain is so bad that on many days I can’t even get out of bed. I have flare-ups of pain, and flare ups of the overwhelming fatigue. I spend a lot of time in bed, only getting up for the bathroom, or to get the next ice pack. My doctor prescribed Ultram for the pain, and it does help some. In the morning, I wake up and have a glass of water by my bed. I take the pain medication, and lie back down for at least 1-2 hours for it to work. Then I get up and try to determine what I will feel like that day. Many days the fatigue/pain puts me back to bed. I get about 1-2 days a week that I would call functional. Even on ok days, I still need rest periods.I used to be so active. I walked 12 miles a week, I went dancing, I traveled when I could, and I went out with friends and family on outings and visits. I was actively dating also. Now I do none of these things. I have no social life. My biggest hobby is reading, which I do enjoy, but I want to do the things I used to do. I feel my muscles atrophying, and it really bothers me. My body is loosing this battle, and I think about how my leg muscles used to be so hard from the dancing, and ice-skating. It is very disheartening.After being in another car accident, the Fibromyalgia moved into my right hip, and leg. I have recently taken up pool walking on my good days to try to work on that area, and to get some exercise for my leg muscles. My membership is over and I can’t afford another one. I was only able to go 1-2 days a week at most. I used to be size 7-8, now I am stable at size 16. I do not diet cause I do not want to yo yo, and that’s all diets do. However, I do try to eat healthy foods, when I even feel like eating. Most days I eat nothing till evening.There are a lot of persons with Fibromyalgia, but many are worse than others. Some can continue to work and carry on almost normal lives, but I am one of the more severe cases, and I am unable to work. I have tried to consider many different ways to earn an income, but I come up empty handed. On the day I am to deliver, or be somewhere, or do something, etc.. I would be in bed. To see me on one of my 1-2 days a week, where I can go to the store, and run a couple errands, no one would know what I have to live with on my other days. I hide my pain well. My car will sit for days in the driveway, and anyone waiting on a response from me, would have to just wait. I have filed for Social Security and that is a very long process. They deny everyone on the first time. Is that fair? I don’t think so. I have filed again, and I have gone to their doctor, and they have my Doctor’s notes. But the Social Security system is so poor, that it takes years to obtain a decision. People loose their lives, their cars, their homes, their spouses, and the list goes on. I am lucky; I can live with my mother. I am not proud of this. I am a very independent person, and have lived on my own all my life since I was 17 years old. I am now 46. But I am still lucky to have a kind and understanding Mother who is there for me. This Social Security system is in urgent need of work, and I mean urgent, emergency, right away work. Get it straightened out one way or another for Disabled Americans who have paid their money into it.I also have filed under my Long Term Disability insurance that I paid for through my job. It is just as bad. They don’t want to pay, they don’t want to acknowledge that a person could be in a situation and not be able to work. This is Cigna, but I think they are all about the same. There should be laws against them doing this. My doctor supports me in not being able to work. She wouldn’t do that if it weren’t true, and they know it. But still they say no. They cause people to get lawyers who expect you to pay thousands of dollars to get help from them, and I don’t have it. The insurance companies know this, so they say no, and they know that you are trapped, stuck, even though you paid for the coverage. There are persons who have committed suicide over this. If they have nowhere to go, and no way to support them selves, they’ve lost everything, house, car, what do they have left.I haven’t the money to see Doctors outside my HMO. It alone is 200.00 plus a month plus the medications. I can see why people with chronic pain are committing suicide; it’s like what’s the point. Nowhere to turn, no one to listen, no one to believe you, just more pain, every day. On days when I am in a flare up I have thought that I would be better off dead, not to feel the pain, and not to feel so worthless. And to know it will be days till I feel better again. I have had migraines that last for 2 weeks, it’s insane.I am praying every night to God to get better, and I have stopped feeling guilty that other people are worse off. This is my pain, and I have a right to pray for relief, but I pray for them too. I would not wish this on my worst enemy. Never. I have wasted so much of my life doing nothing, and it drives me crazy. In my mind there are so many things I want to get done, and do, and my body says “oh no you don’t, not today, not tomorrow, maybe next week sometime”. At night while my brain forbids sleep, these are the things that fill my head. What I should be doing, what I want to do, and maybe tomorrow I can get some things done. But then tomorrow comes and I am let down once again.It’s very frustrating, very discouraging, and I can’t imagine anyone not getting depressed from it. I see and read articles that say things like, take control of your pain, don’t let it run your life, and I just have to laugh, and know they have no idea what it is like.I hear others say I need to exercise, and they have no idea how a body with Fibromyalgia reacts to exercise. No matter how many times I stretch, or move, it never goes away and it never gets better.I have hope that in the future, and through research there will be more medication(s) to treat the symptoms of pain and fatigue. A cure would be nice, but for now just relief, and being able to work again would be great. I loved working, and I loved my job, and I miss it a lot. I’ve always been a hard worker and many times worked 2-3 jobs at a time. I went back to college and got my Associates degree when I was in my 30”s, and that was while I worked also. Lazy is not in my make-up, but that is how anyone who knows me now would label me.Thanks for taking the time to read this article, and I am hoping more people will understand what life with severe Fibromyalgia is like. I am hoping that more can be done, and that Social Security, and the Insurance Companies will recognize it for the disability that it is.Here are some helpful websites for those who need them.National Fibromyalgia Association:http://www.fmaware.org/Online support group (lots of good answers here)http://www.ezboard.com/(Click on find your board, then under what is your interest, enter social security, and scroll down till you see Clouds online support group, click on this and you can go from there).
posted by wildblue01 @ 6:02 PM
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