Well I have made it through the Christmas holiday and for the most part it was a really good one. Lots of time with family and seeing my girls growing up. Holidays also bring around a lot of mental, as well as increased physical, pain that cannot be explained. I had several anxiety attacks over the holiday season. I can't even say what really brought them on but most likely they were because of the stressful year that I have had Losing many loved ones take a toll, as does the first holiday without them.
I met with my pain management doctor and she is trying me on a new medicine. It's not really new but it is very new to me. It is called nucynta. So far it seems to help but as all pain meds go it is addictive and doctors just don't want to be responsible for addiction. It seems ironic to even develop pain medication if one can't use it. I understand addiction but much research shows that when pain medication is effective and used correctly the risk of addiction is very small if at all. I am one of the good patients that never asks for refills early and takes my medications as I am told. I know so many people who do not do that and they are the reason that people with pain like myself can't get help. The doctors and the public remember the BAD patients and hold the rest of us in that same image. Especially people with pain like mine that doesn't "look" like it hurts! Just because one cannot see my pain as a scar, a wound, a burn, a surgery, or other imags of pain doesn't mean that I and people like me do not hurt.
Part of my treatment plan is to exercise. If you are reading and you have chronic pain, you already know how hard that can be. It is an endless cycle of not feeling good enough to drag yourself out of bed and then do something you already know is going to cause you pain. However if I don't get out of bed and DO something then the pain is even worse. I am trying to lose weight to take pressure off of the joints that hurt. This is supposed to help me. I need to lose a good 50 pounds to be around the size that I should be a lot closer to! That is code for I probably need to lose more then that but well... I have successfully lost about 12 pounds so far but I really don't feel any better. As a matter of fact my joints hurt worse if anything. This causes the me to wonder if anyone really knows what they are talking about. I KNOW that losing weight will help in the long run but today...I feel as if it is a pointless waste of energy that I just can't seem to drag out of myself. I continue on but it is a hard decision and many days my body and mind are at war trying to decide what I am going to do. I have until the first of the year to get my act in gear. Starting January first I will be walking on the treadmill every day. I am already dreading weekend but I know that helping my body exercise will be better in the long run. I know the arguments inside and out but it is still a hard decision. So my readers what do you do for exercise? How do you make yourself do something you don't want to do?
Thursday, December 29, 2011
Wednesday, December 14, 2011
A Start...
Pain- something a person feels that makes him/her uncomfortable or crazy that not everyone understands, something people cannot always see
This is MY defination of pain. I am sure that I will add to it many times over the days , months, or years that I write this blog. Pain is unique and individual as each of us are. Some have never really had pain (be very happy for this), many suffer in silence, many are just whiners, many can't show their pain, and to each of us it can be impossible to describe. I fall into many of these catagories. I have pain that cannot be seen by others and am often judged by this by the very people that took a vow to help me over come this unexplainable thing I call pain. Many days I just suffer in silence because a person on the outside cannot see what I am FEELING. Many days I can be the whiner who just wants a hug and her own pity party. I am officially diagnosed with fibromyalgia. Fibro and mya mean muscle and joint while algia is code for pain. Worse yet it is pain that cannot be seen or felt by any tests or labs. It has been around for decades but no one knows what causes it, why, or why women are the most diagnosed. Fibro, for short, is a disease that no one but the person that has it and the people that have been diagnosed with it can come to terms with. I don't LOOK sick...My joints are not red or swollen but PLEASE don't touch me cause it hurts. I can't explain that. My doctors and research that I have done say that it is because I have overly sensitive pain receptors. There is no cure and treatment is different for every person. Pain medication is not recommended and nothing really stops the pain so it is a constant battle of will. Me against my body against too many doctors to count. I know what I have and knowledge is power but not really.
I hate that I can't force myself to work 40+ hours a week any more. I don't provide for my family like I need to or want to because some days it just hurts too much to get out of bed. Pain makes it hard to not call in sick to work, get dressed, run errands, or just crawl out of bed some days. To make matters worse, most like me that have fibro not only have fibro but many other chronic problems. Who can sleep when all I can think about is how bad I am hurting and my muscles and joints are loudly telling me that they are there, as if I didn't already know that. I suffer from chronic migraines, cluster headaches, and insomnia. I am told constantly that I need to lose weight, eat healthy, avoid sugar, trigger foods, certain meds, and above all get exercise. I can't even crawl out of bed some days much less think about walking around a country block in the cold. Do more! Funny thing about that is I know what I used to be able to do and then I do too much and I am back in bed praying that I will be able to get back out sooner rather then later cause my bladder needs to empty but the thought of the bathroom, that is less then twenty feet away, seems like miles. What is a sane person to do? I don't know because I am beginning to think that I am NOT very sane.
I feel like a pharmaceutical guinea pig! I have been on over fifteen medications at one time, with many of those being several times a day. Finding right medications is a crap shoot for me and the doctor. Almost every medication that I take needs about four to six weeks to start working. That is four to six weeks of hoping that pain lessens or that my mind just learns to accept the level that I am at. More often then not it is a bust or failure and then I have to start a new medication while tapering off the other medication and once again waiting for the medication to build up in my system. Waiting is a hard game for a person with no patience! I want relief and I want it now. I have tried an amazing amount of medications and if you have ever seen a drug reference guide you know that there are lots of medications out there to try. Off-label uses are not listed and many of the medications for fibro are off-label uses. This means that the doctor is thinking or guessing that this might work because generally a side effect of the medication that is used for something else helps a symptom that YOU are experiencing. Have you ever read side effect listings? They are never good and it seems like a million to one chance that it might help. But I try it because I need relief! A few of them have worked but many not. I won't get into the battle of pain medication in this writing tonight. That would be pages and pages of words that would just go on and on. Maybe next time.
I hope that I will reach many people with this blog, not only to tell my story, but to help another patient or their family understand what I go through, and that they are not alone! I hope that you are blessed with many good days and few bad days! I hope that together we can figure out how to fight this, find a treatment, share ideas, stories, and learn from each other! I welcome all comments but no spam please! Feel free to look me up on facebook
This is MY defination of pain. I am sure that I will add to it many times over the days , months, or years that I write this blog. Pain is unique and individual as each of us are. Some have never really had pain (be very happy for this), many suffer in silence, many are just whiners, many can't show their pain, and to each of us it can be impossible to describe. I fall into many of these catagories. I have pain that cannot be seen by others and am often judged by this by the very people that took a vow to help me over come this unexplainable thing I call pain. Many days I just suffer in silence because a person on the outside cannot see what I am FEELING. Many days I can be the whiner who just wants a hug and her own pity party. I am officially diagnosed with fibromyalgia. Fibro and mya mean muscle and joint while algia is code for pain. Worse yet it is pain that cannot be seen or felt by any tests or labs. It has been around for decades but no one knows what causes it, why, or why women are the most diagnosed. Fibro, for short, is a disease that no one but the person that has it and the people that have been diagnosed with it can come to terms with. I don't LOOK sick...My joints are not red or swollen but PLEASE don't touch me cause it hurts. I can't explain that. My doctors and research that I have done say that it is because I have overly sensitive pain receptors. There is no cure and treatment is different for every person. Pain medication is not recommended and nothing really stops the pain so it is a constant battle of will. Me against my body against too many doctors to count. I know what I have and knowledge is power but not really.
I hate that I can't force myself to work 40+ hours a week any more. I don't provide for my family like I need to or want to because some days it just hurts too much to get out of bed. Pain makes it hard to not call in sick to work, get dressed, run errands, or just crawl out of bed some days. To make matters worse, most like me that have fibro not only have fibro but many other chronic problems. Who can sleep when all I can think about is how bad I am hurting and my muscles and joints are loudly telling me that they are there, as if I didn't already know that. I suffer from chronic migraines, cluster headaches, and insomnia. I am told constantly that I need to lose weight, eat healthy, avoid sugar, trigger foods, certain meds, and above all get exercise. I can't even crawl out of bed some days much less think about walking around a country block in the cold. Do more! Funny thing about that is I know what I used to be able to do and then I do too much and I am back in bed praying that I will be able to get back out sooner rather then later cause my bladder needs to empty but the thought of the bathroom, that is less then twenty feet away, seems like miles. What is a sane person to do? I don't know because I am beginning to think that I am NOT very sane.
I feel like a pharmaceutical guinea pig! I have been on over fifteen medications at one time, with many of those being several times a day. Finding right medications is a crap shoot for me and the doctor. Almost every medication that I take needs about four to six weeks to start working. That is four to six weeks of hoping that pain lessens or that my mind just learns to accept the level that I am at. More often then not it is a bust or failure and then I have to start a new medication while tapering off the other medication and once again waiting for the medication to build up in my system. Waiting is a hard game for a person with no patience! I want relief and I want it now. I have tried an amazing amount of medications and if you have ever seen a drug reference guide you know that there are lots of medications out there to try. Off-label uses are not listed and many of the medications for fibro are off-label uses. This means that the doctor is thinking or guessing that this might work because generally a side effect of the medication that is used for something else helps a symptom that YOU are experiencing. Have you ever read side effect listings? They are never good and it seems like a million to one chance that it might help. But I try it because I need relief! A few of them have worked but many not. I won't get into the battle of pain medication in this writing tonight. That would be pages and pages of words that would just go on and on. Maybe next time.
I hope that I will reach many people with this blog, not only to tell my story, but to help another patient or their family understand what I go through, and that they are not alone! I hope that you are blessed with many good days and few bad days! I hope that together we can figure out how to fight this, find a treatment, share ideas, stories, and learn from each other! I welcome all comments but no spam please! Feel free to look me up on facebook
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