What is Fibromyalgia?
Fibromyalgia (FM) is an increasingly recognized chronic pain illness characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle and hands, but any body part can be involved. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time.
Who is affected?
It is estimated that approximately 3-6% of the U.S. population has FM. Although a higher percentage of women of all ages and races are affected, it does strike men and children. Because of its debilitating nature, Fibromyalgia has a serious impact on patients' families, friends and employers, as well as society at large.
What are the symptoms?
FM is characterized by the presence of multiple tender points and a constellation of symptoms.
Pain:
The pain of FM is profound, widespread and chronic. It knows no boundaries, migrating to all parts of the body and varying in intensity. FM pain has been described as deep muscular aching, throbbing, twitching, stabbing and shooting pain that defines the very existence of the Fibromyalgia patient. Neurological complaints such as numbness, tingling and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning. Aggravating factors that affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.
Fatigue:
In today's world many people complain of fatigue; however, the fatigue of FM is much more than being tired. It is an all-encompassing exhaustion that interferes with even the simplest daily activities. It feels like every drop of energy has been drained from the body, which at times can leave the patient with a limited ability to function both mentally and physically.
Sleep Problems:
Many Fibromyalgia patients have an associated sleep disorder that prevents them from getting deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in the stage 4 deep sleep of FM patients. During sleep, individuals with FM are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep.
Other Symptoms:
Additional symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms and impaired coordination.
Monday, April 24, 2006
Thursday, April 20, 2006
The Voices of UC research study
This study was interesting to read. In many ways it confirmed my feelings that few people other than those of us with UC actually "get it". I often feel like my dr's don't really understand how damaging this condition is to my ability to function. The results of this survey are quite disturbing. It reminds me that for most people, life with UC really sucks!
Voices of UC — Key Findings
According to the newest survey of people living with ulcerative colitis (UC), Voices of UC, nearly 40% of respondents experienced symptoms at least 180 days per year. Yet people living with UC still feel that the impact of the disease is underestimated by families, friends, and employers. The survey was conducted by telephone with more than 1,000 patients with UC.
The survey, conducted by Manhattan Research on behalf of the Crohn’s & Colitis Foundation of America (CCFA) and sponsored by Centocor, Inc., also revealed that the symptoms of UC — including severe abdominal cramping and pain, the sudden, uncontrollable urge for bowel movements, and fatigue — impact the physical, social, and emotional well-being of those living with the disease. A subanalysis of the survey focused specifically on how UC affects the social, familial, and professional aspects of people’s lives.
Impact on social life
More than 60% of respondents stated that their friends’ understanding of UC was limited to what they told them; 10% reported that their friends knew absolutely nothing about UC, and only 1% felt that their friends were experts on the disease.
55% of those surveyed reported avoiding social engagements due to symptoms, while 37% found that their UC made it difficult to make and keep social engagements with friends.
51% reported that stress about their social life has a medium or high impact on their UC symptoms.
Nearly half of respondents reported that the disease was most limiting in the following social situations: eating what they want, engaging in certain physical activities, and planning vacations and weekend trips.
Impact on family life
Approximately half of people surveyed said that their families were well-informed about UC, while only 5% would categorize their family members as experts.
Among those with children living at home, close to 70% of those surveyed reported the disease had an impact on their relationship with their children.
74% of people surveyed reported that they have experienced less sleep than desired, 41% have avoided intimate situations with a spouse or partner, and 24% have had trouble maintaining a relationship with a spouse or partner due to UC.
31% of people surveyed reported that they turn to their families as a resource when actively seeking information about UC.
Impact on work life
Based on reporting from survey respondents, it is estimated that the loss of productivity due to UC may cost employers more than $431 million per year.
The estimated impact on productivity takes into account the more than 500,000 people currently diagnosed with UC and the finding that approximately 22% of those people missed an average of 16.8 days of work per year.
Of those surveyed between the ages of 18 and 34, 40% feel that UC limits their ability to plan their work schedule, 30% have avoided taking a job or promotion as a direct result of the disease, and 25% reported that their disease is very or extremely limiting to their work life.
One in four of the people surveyed between the ages of 18 and 34 said that their employer was not aware of their disease. One in four patients surveyed also reported hiding their disease from their fellow employees, and one in five reported hiding their disease from employers.
The challenges in the diagnosis of UC
73% of people with UC surveyed visited two or more doctors before receiving a definitive UC diagnosis, and more than 30% had to wait more than one year. On average, patients visited 3.2 physicians and waited 18.3 months for a diagnosis; 47% visited at least three physicians, and 17% visited five or more.
Bridging the gap between patients and physicians
Half of all the survey respondents believe that physicians tend to underestimate the impact of UC on their patients.
72% of people with UC surveyed believe that there is a need for increased awareness of UC among physicians.
71% of people with UC surveyed who actively seek information about their disease get the information from their physician.
Educational needs: Many gaps remain
Half of the survey respondents believe that their friends, family, and employers underestimate the impact of UC.
76% of survey respondents reported that there is a need for increased awareness of UC among the general public.
General findings about UC
47% of those surveyed reported that they have been hospitalized for an average of 22 days in the past five years; 37% have been to the emergency room.
In the past five years, 20% of respondents underwent an average of 2.3 surgeries. 37% of surgeries consisted of removing the entire colon.
Survey respondents were identified through an opt-in database of U.S. consumers who requested health information based on their condition profile; people within this list, who had UC, were randomized to be included as part of the survey group. The population was wholly examined and further sub-segmented into the following age groups: 18-34 years of age, 35 to 54 years of age and 55+ years of age.
Voices of UC — Key Findings
According to the newest survey of people living with ulcerative colitis (UC), Voices of UC, nearly 40% of respondents experienced symptoms at least 180 days per year. Yet people living with UC still feel that the impact of the disease is underestimated by families, friends, and employers. The survey was conducted by telephone with more than 1,000 patients with UC.
The survey, conducted by Manhattan Research on behalf of the Crohn’s & Colitis Foundation of America (CCFA) and sponsored by Centocor, Inc., also revealed that the symptoms of UC — including severe abdominal cramping and pain, the sudden, uncontrollable urge for bowel movements, and fatigue — impact the physical, social, and emotional well-being of those living with the disease. A subanalysis of the survey focused specifically on how UC affects the social, familial, and professional aspects of people’s lives.
Impact on social life
More than 60% of respondents stated that their friends’ understanding of UC was limited to what they told them; 10% reported that their friends knew absolutely nothing about UC, and only 1% felt that their friends were experts on the disease.
55% of those surveyed reported avoiding social engagements due to symptoms, while 37% found that their UC made it difficult to make and keep social engagements with friends.
51% reported that stress about their social life has a medium or high impact on their UC symptoms.
Nearly half of respondents reported that the disease was most limiting in the following social situations: eating what they want, engaging in certain physical activities, and planning vacations and weekend trips.
Impact on family life
Approximately half of people surveyed said that their families were well-informed about UC, while only 5% would categorize their family members as experts.
Among those with children living at home, close to 70% of those surveyed reported the disease had an impact on their relationship with their children.
74% of people surveyed reported that they have experienced less sleep than desired, 41% have avoided intimate situations with a spouse or partner, and 24% have had trouble maintaining a relationship with a spouse or partner due to UC.
31% of people surveyed reported that they turn to their families as a resource when actively seeking information about UC.
Impact on work life
Based on reporting from survey respondents, it is estimated that the loss of productivity due to UC may cost employers more than $431 million per year.
The estimated impact on productivity takes into account the more than 500,000 people currently diagnosed with UC and the finding that approximately 22% of those people missed an average of 16.8 days of work per year.
Of those surveyed between the ages of 18 and 34, 40% feel that UC limits their ability to plan their work schedule, 30% have avoided taking a job or promotion as a direct result of the disease, and 25% reported that their disease is very or extremely limiting to their work life.
One in four of the people surveyed between the ages of 18 and 34 said that their employer was not aware of their disease. One in four patients surveyed also reported hiding their disease from their fellow employees, and one in five reported hiding their disease from employers.
The challenges in the diagnosis of UC
73% of people with UC surveyed visited two or more doctors before receiving a definitive UC diagnosis, and more than 30% had to wait more than one year. On average, patients visited 3.2 physicians and waited 18.3 months for a diagnosis; 47% visited at least three physicians, and 17% visited five or more.
Bridging the gap between patients and physicians
Half of all the survey respondents believe that physicians tend to underestimate the impact of UC on their patients.
72% of people with UC surveyed believe that there is a need for increased awareness of UC among physicians.
71% of people with UC surveyed who actively seek information about their disease get the information from their physician.
Educational needs: Many gaps remain
Half of the survey respondents believe that their friends, family, and employers underestimate the impact of UC.
76% of survey respondents reported that there is a need for increased awareness of UC among the general public.
General findings about UC
47% of those surveyed reported that they have been hospitalized for an average of 22 days in the past five years; 37% have been to the emergency room.
In the past five years, 20% of respondents underwent an average of 2.3 surgeries. 37% of surgeries consisted of removing the entire colon.
Survey respondents were identified through an opt-in database of U.S. consumers who requested health information based on their condition profile; people within this list, who had UC, were randomized to be included as part of the survey group. The population was wholly examined and further sub-segmented into the following age groups: 18-34 years of age, 35 to 54 years of age and 55+ years of age.
Just what is Ulcerative Colitis?? UC defined
What is UC?
UC is a chronic disease of the colon, or large intestine, affecting approximately 500,000 people in the United States. It can cause such symptoms as severe abdominal cramping and pain, the sudden, uncontrollable urge for bowel movements, and fatigue. UC and Crohn’s disease (CD) are the two main disease categories that belong to a larger group of illnesses called Inflammatory Bowel Disease (IBD). These illnesses are marked by an abnormal response by the body's immune system that typically develops in people between the ages of 15 and 35. However, anyone at any age can develop CD or UC, from infants to the elderly.
What causes UC?
Although considerable progress has been made in IBD research, investigators do not yet know what causes UC. Studies indicate that the inflammation in UC involves a complex interaction of issues: genetic predisposition, the state of the immune system and environmental factors. Researchers believe that once the UC patient's immune system is "turned on," it does not know how to properly "turn off" at the right time.
UC can tend to run in families. Studies have shown that up to 10% of people with UC will have a close relative with either UC or CD.
What are the symptoms?
UC causes tiny open sores, or ulcers, to form on the surface of the lining of the colon, where they bleed and produce pus and mucus. Because the inflammation makes the colon empty frequently, symptoms typically include bloody stools, severe diarrhea, and sudden urges for bowel movements, often leading to unwanted weight loss, blood loss, and a host of secondary complications.
Can it be cured?
Currently, there is no medicinal cure for UC, and 25% to 40% of UC patients will eventually have their colons removed because of severe illness, risk of cancer, massive bleeding, or rupture of the colon.
Additional Resources
Crohn’s & Colitis Foundation of America The Crohn's & Colitis Foundation of America (CCFA) is dedicated to its mission to cure and prevent Crohn's disease and ulcerative colitis through research, and to improve the quality of life of children and adults affected by these digestive diseases through education and support. In addition to funding outstanding research worldwide, CCFA offers a wide range of programs and services for patients and medical professionals, including Webcasts, live education seminars, publications, and support groups. For more information, contact CCFA at (800) 932-2423 or visit www.ccfa.org.
UC is a chronic disease of the colon, or large intestine, affecting approximately 500,000 people in the United States. It can cause such symptoms as severe abdominal cramping and pain, the sudden, uncontrollable urge for bowel movements, and fatigue. UC and Crohn’s disease (CD) are the two main disease categories that belong to a larger group of illnesses called Inflammatory Bowel Disease (IBD). These illnesses are marked by an abnormal response by the body's immune system that typically develops in people between the ages of 15 and 35. However, anyone at any age can develop CD or UC, from infants to the elderly.
What causes UC?
Although considerable progress has been made in IBD research, investigators do not yet know what causes UC. Studies indicate that the inflammation in UC involves a complex interaction of issues: genetic predisposition, the state of the immune system and environmental factors. Researchers believe that once the UC patient's immune system is "turned on," it does not know how to properly "turn off" at the right time.
UC can tend to run in families. Studies have shown that up to 10% of people with UC will have a close relative with either UC or CD.
What are the symptoms?
UC causes tiny open sores, or ulcers, to form on the surface of the lining of the colon, where they bleed and produce pus and mucus. Because the inflammation makes the colon empty frequently, symptoms typically include bloody stools, severe diarrhea, and sudden urges for bowel movements, often leading to unwanted weight loss, blood loss, and a host of secondary complications.
Can it be cured?
Currently, there is no medicinal cure for UC, and 25% to 40% of UC patients will eventually have their colons removed because of severe illness, risk of cancer, massive bleeding, or rupture of the colon.
Additional Resources
Crohn’s & Colitis Foundation of America The Crohn's & Colitis Foundation of America (CCFA) is dedicated to its mission to cure and prevent Crohn's disease and ulcerative colitis through research, and to improve the quality of life of children and adults affected by these digestive diseases through education and support. In addition to funding outstanding research worldwide, CCFA offers a wide range of programs and services for patients and medical professionals, including Webcasts, live education seminars, publications, and support groups. For more information, contact CCFA at (800) 932-2423 or visit www.ccfa.org.
Monday, April 17, 2006
The Life of Sick
Sick. Tired of it really. But sick I am. Not your average cold or flu sick. Long term, chronically annoying, this is a way of life now sick.
I was first diagnosed with Ulcerative Colitis over 15 years ago. In 2003 I got the lovely confirmed addition of Fibromyalgia after years of wondering why I hurt all the time and in late 2004 I was granted the trifecta... Diabetes.
Yup, 3. I have never been one to do things 1/2 assed. Now many of you may be thinking oh wow, Diabetes, that is a bummer. And yes I suppose it is.
The real bummer is that on any given day I am either running to the "loo" a minimum of 6 to 10 painful times, feeling like I have been pummeled all over by something that hurts enough to make me hurt but not enough to leave a bruise... feels like a bruise but looks fine. Invisible bruises. That is what I feel like I have all over me on most days. How many times have I asked someone, "when you push on your skin does it hurt?".
Oh and did I mention the fatigue? I have been clean and sober since June 1992 and yet on many days in a month I feel like one serious party has taken place in my head. Some days I am literally not sure if I am awake or dreaming. Are you reading this? Am I typing this?
The past few months the life of sick has meant that on most nights I don't sleep. Literally. I have become intimate with Alton Brown, Rachel Ray on $40 a day, the Iron Chefs, the chicks at HGTV, the Designer Guys, various artists profiled on PBS and almost suckered into a variety of bullshit scams such as air filled mattresses, supplements that clean your body, detox your car engine and wash your clothes all in one bottle... THE Amazing number of obesity curing products that apparantly only work for a handful of Americans....
Yea I have drank the warm milk, eaten lots of Turkey, taken hot showers, exercised, overeaten, undereaten, avoided any form of cafeinne, taken pain medication, tylenol PM, Lunesta, you name it. Don't sleep. Well... eventually, maybe around 6am... or 9am or 11am I fall asleep for 3 hours or 5 hours. But I never really really sleep. The phone rings, the neighors yell, the trash trucks come, (recycled, green and then regular) children play and sometimes I just have to wake up to you know, pee.
Sick. No one knows it. I can't park in the handicapped sections at the malls or the grocery store. Yet without notice I often have seconds (and yes I am being brutally frank here) to find the nearest restroom because if I don't rest will definately be stolen from my sanity for the rest of the day. Such a sexy disease... no I don't have breast cancer, but if I leave the house I do risk having an accident in my pants. # 1 or #2 take your pick. Sympathy anyone?
Sick. I don't really make the effort to make new friends. So much work and effort to vet them. Hi, my name is Julia are you willing to be friends with someone who may leave you sitting in a restaurant whilst I fly madly towards the bathroom? Or, do you mind constantly being stood up because I didn't fall asleep until 10am and well need to sleep a bit and oh by the way when I wake up I might not be able to walk... How godawful pathetic. Who needs this? I don't want a friend like this. I don't want to be my own friend! Don't worry. I still am.
Sick. Fuck sick. I'm not a sick person. I mean that is not my way. I don't like to complain. I don't like to whine. I don't want my business to have to be your business. I, yes here it comes, the awful word I am trying to accept. To swallow. I "was" a doer. I was active. I was busy. A creator. A leader. I was on my way. was...
Sick. Does this sound like pity? This isn't about pity. This about facts. My facts. My husband wants to cure me. Yea him and a gazillion doctors and pill manufacturers. May the best man win. For better or worse we are walking two separate paths side by side. How do I help him understand that I didn't mean for this to happen? The old lady that sits on the couch watching life go by on TV. My life, his life, other people's lifes. Going by. I have become a spectator wife and my sport is life.
Sick. Pills, doctors. Doctors who listen, doctors who don't. Pill pushers. Massagers, Bowen techniquers, energy swirlers, alternative health please pull me back from what feels like the alternative universe I have fallen into these past years. New meds, no meds, liquid meds, enemas every night for months on end... my end. Lovely treatment that one. Quit it all on my own after months of torture. You see for it to work you must hold it the WHOLE NIGHT LONG. Oh and guess who had to administer it each night. Lucky hubby! Damn right I quit it. Saw no difference and this was supposed to be the best treatment available. Called it quality of life choice and my gastro ended up agreeing. Gastroentologist, rheumatologists, diabetes specialists, nutrionists, primary care doctor, nurses, massage therapists, my co-pays at one time were worth a monthly car payment for a mercedes. I had 14 medication options at any given day. I eventually threw many of them out. Now I take 5 daily.
The life of sick. Who wants to know the truth. The pain. The suffering. Oh but it could be worse. You could have a fatal disease. Where's the gratitude? At least you know what you have. What do I want from the people I know? What do they want from me? Peace and quiet. To remember all the amazing things I have done. (was, done - really pisser words those) To understand that I am not lazy. That I am not a new amalgamation of the trifecta. A blob of sick.
I'm still here. Bruised without the colors. Sad without the tears. Awake without sleep. Brain fog in the sunshine. Trapped with no cage. Handicapped with no blue sign. Disabled because I am poor.
And yet I laugh. Humor is my madness and my saviour. My sanity and my release. I am the comedy. However, I am ready to sit down now. Relinquish the stand up job.
This is who I am. How I feel. What I have become. The life of Sick.
And I haven't even scratched the surface...
Ps. I don't want your pity but I will gladly take your health.
I was first diagnosed with Ulcerative Colitis over 15 years ago. In 2003 I got the lovely confirmed addition of Fibromyalgia after years of wondering why I hurt all the time and in late 2004 I was granted the trifecta... Diabetes.
Yup, 3. I have never been one to do things 1/2 assed. Now many of you may be thinking oh wow, Diabetes, that is a bummer. And yes I suppose it is.
The real bummer is that on any given day I am either running to the "loo" a minimum of 6 to 10 painful times, feeling like I have been pummeled all over by something that hurts enough to make me hurt but not enough to leave a bruise... feels like a bruise but looks fine. Invisible bruises. That is what I feel like I have all over me on most days. How many times have I asked someone, "when you push on your skin does it hurt?".
Oh and did I mention the fatigue? I have been clean and sober since June 1992 and yet on many days in a month I feel like one serious party has taken place in my head. Some days I am literally not sure if I am awake or dreaming. Are you reading this? Am I typing this?
The past few months the life of sick has meant that on most nights I don't sleep. Literally. I have become intimate with Alton Brown, Rachel Ray on $40 a day, the Iron Chefs, the chicks at HGTV, the Designer Guys, various artists profiled on PBS and almost suckered into a variety of bullshit scams such as air filled mattresses, supplements that clean your body, detox your car engine and wash your clothes all in one bottle... THE Amazing number of obesity curing products that apparantly only work for a handful of Americans....
Yea I have drank the warm milk, eaten lots of Turkey, taken hot showers, exercised, overeaten, undereaten, avoided any form of cafeinne, taken pain medication, tylenol PM, Lunesta, you name it. Don't sleep. Well... eventually, maybe around 6am... or 9am or 11am I fall asleep for 3 hours or 5 hours. But I never really really sleep. The phone rings, the neighors yell, the trash trucks come, (recycled, green and then regular) children play and sometimes I just have to wake up to you know, pee.
Sick. No one knows it. I can't park in the handicapped sections at the malls or the grocery store. Yet without notice I often have seconds (and yes I am being brutally frank here) to find the nearest restroom because if I don't rest will definately be stolen from my sanity for the rest of the day. Such a sexy disease... no I don't have breast cancer, but if I leave the house I do risk having an accident in my pants. # 1 or #2 take your pick. Sympathy anyone?
Sick. I don't really make the effort to make new friends. So much work and effort to vet them. Hi, my name is Julia are you willing to be friends with someone who may leave you sitting in a restaurant whilst I fly madly towards the bathroom? Or, do you mind constantly being stood up because I didn't fall asleep until 10am and well need to sleep a bit and oh by the way when I wake up I might not be able to walk... How godawful pathetic. Who needs this? I don't want a friend like this. I don't want to be my own friend! Don't worry. I still am.
Sick. Fuck sick. I'm not a sick person. I mean that is not my way. I don't like to complain. I don't like to whine. I don't want my business to have to be your business. I, yes here it comes, the awful word I am trying to accept. To swallow. I "was" a doer. I was active. I was busy. A creator. A leader. I was on my way. was...
Sick. Does this sound like pity? This isn't about pity. This about facts. My facts. My husband wants to cure me. Yea him and a gazillion doctors and pill manufacturers. May the best man win. For better or worse we are walking two separate paths side by side. How do I help him understand that I didn't mean for this to happen? The old lady that sits on the couch watching life go by on TV. My life, his life, other people's lifes. Going by. I have become a spectator wife and my sport is life.
Sick. Pills, doctors. Doctors who listen, doctors who don't. Pill pushers. Massagers, Bowen techniquers, energy swirlers, alternative health please pull me back from what feels like the alternative universe I have fallen into these past years. New meds, no meds, liquid meds, enemas every night for months on end... my end. Lovely treatment that one. Quit it all on my own after months of torture. You see for it to work you must hold it the WHOLE NIGHT LONG. Oh and guess who had to administer it each night. Lucky hubby! Damn right I quit it. Saw no difference and this was supposed to be the best treatment available. Called it quality of life choice and my gastro ended up agreeing. Gastroentologist, rheumatologists, diabetes specialists, nutrionists, primary care doctor, nurses, massage therapists, my co-pays at one time were worth a monthly car payment for a mercedes. I had 14 medication options at any given day. I eventually threw many of them out. Now I take 5 daily.
The life of sick. Who wants to know the truth. The pain. The suffering. Oh but it could be worse. You could have a fatal disease. Where's the gratitude? At least you know what you have. What do I want from the people I know? What do they want from me? Peace and quiet. To remember all the amazing things I have done. (was, done - really pisser words those) To understand that I am not lazy. That I am not a new amalgamation of the trifecta. A blob of sick.
I'm still here. Bruised without the colors. Sad without the tears. Awake without sleep. Brain fog in the sunshine. Trapped with no cage. Handicapped with no blue sign. Disabled because I am poor.
And yet I laugh. Humor is my madness and my saviour. My sanity and my release. I am the comedy. However, I am ready to sit down now. Relinquish the stand up job.
This is who I am. How I feel. What I have become. The life of Sick.
And I haven't even scratched the surface...
Ps. I don't want your pity but I will gladly take your health.
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