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What exactly is CFS?
Chronic Fatigue Syndrome, also known as Myalgic Encephalopathy, Post Viral Fatigue Syndrome, Chronic Fatigue and Immune Dysfunction Syndrome, is a poorly understood condition that is characterised by profound fatigue and exhaustion, loss of muscle power, pain and tenderness following normal physical or mental activity and a range of neurological, endocrine and cognitive disturbances. CFS is classified as a neurological disorder by the World Health Organisation (International Classification of Disease 10: G93.3).
Affecting all social classes and ethnic backgrounds, it is estimated that between 0.2% and 0.4% of the population have the illness. It can occur at any age with the greatest incidence being between the early twenties and mid forties. Women are most commonly affected.
Often sufferers are unable to work with 25% severely disabled. It has a huge impact on the lives of sufferers and carers. Very little support is available and isolation and loss of hope often follow years of suffering.
It most commonly occurs in a sporadic form but there have been epidemic cases, such as the outbreak in the Royal Free Hospital, London, 1955.
Very little is known or understood about the illness and its causes and as yet no cure or treatment has been found.
Affecting all social classes and ethnic backgrounds, it is estimated that between 0.2% and 0.4% of the population have the illness. It can occur at any age with the greatest incidence being between the early twenties and mid forties. Women are most commonly affected.
Often sufferers are unable to work with 25% severely disabled. It has a huge impact on the lives of sufferers and carers. Very little support is available and isolation and loss of hope often follow years of suffering.
It most commonly occurs in a sporadic form but there have been epidemic cases, such as the outbreak in the Royal Free Hospital, London, 1955.
Very little is known or understood about the illness and its causes and as yet no cure or treatment has been found.
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M.E. / Chronic Fatigue Syndrome - Sleepydust Video
The video aims to help the friends and family of ME/CFS (including Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), and Post Viral Fatigue Syndrome) sufferers understand the illness and what their loved ones are going through. To view a clearer, larger version of the video, visit: http://www.sleepydust.net/me-cfs-chronic-fatigue-syndrome-video.html
Runtime: 9:16
44717 views
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The Features of ME/CFS
Commonly, a previously fit and active person becomes ill after a sudden infection. Other triggers include vaccinations, surgery, organophosphate pesticides, toxins, major trauma, stress, severe emotional upset and pregnancy. Sometimes a person will gradually decline in health with no precipitating event. In these cases the individual may experience a slow decline in health over a period of months or years and may indeed find it difficult to remember a time of well-being.
The most prominent symptom is severe fatigue and malaise following physical or mental activity. Often the exhaustion is delayed and does not show itself until 24 to 48 hours after the activity. This is a profound fatigue and must not be confused with the tiredness associated with a busy lifestyle which will likely clear up after a good nights sleep. Unfortunately, with ME/CFS this is not the case.
According to the ME Association of the UK other main symptoms are:
* Muscle symptoms include exercise intolerance and post-exertional malaise (i.e. feeling shattered the day after undue physical activity), pain/myalgia (present in around 75% of people) and fasciculations (visible twitching of the muscles which sometimes includes blepharospasm/eyelid twitching).
* Brain and Central Nervous System symptoms include cognitive dysfunction (problems with short-term memory, concentration and maintaining attention), clumsiness, disequilibrium likened to 'walking on rubber', and word finding abilities. Problems with control of the autonomic nervous system results in palpitations, sweating episodes and symptoms associated with low blood pressure/postural hypotension (e.g. fainting).
* Symptoms which suggest on-going abnormalities in immune system function include sore throats, enlarged glands, joint pains, headaches, problems with temperature control and intermittent flu-like feelings.
* Other symptoms which frequently occur in ME/CFS include sleep disturbances (often increased requirements at the onset followed by an inability to maintain a full night's sleep), alcohol intolerance (a very characteristic feature, particularly in the early period of illness) and irritable bowel symptomatology.
* Some people also develop emotional lability or mood swings and features of clinical depression as time goes on.
* Besides these more obvious and wide-spread symptoms there is also a myriad of "minor" ones.
The most prominent symptom is severe fatigue and malaise following physical or mental activity. Often the exhaustion is delayed and does not show itself until 24 to 48 hours after the activity. This is a profound fatigue and must not be confused with the tiredness associated with a busy lifestyle which will likely clear up after a good nights sleep. Unfortunately, with ME/CFS this is not the case.
According to the ME Association of the UK other main symptoms are:
* Muscle symptoms include exercise intolerance and post-exertional malaise (i.e. feeling shattered the day after undue physical activity), pain/myalgia (present in around 75% of people) and fasciculations (visible twitching of the muscles which sometimes includes blepharospasm/eyelid twitching).
* Brain and Central Nervous System symptoms include cognitive dysfunction (problems with short-term memory, concentration and maintaining attention), clumsiness, disequilibrium likened to 'walking on rubber', and word finding abilities. Problems with control of the autonomic nervous system results in palpitations, sweating episodes and symptoms associated with low blood pressure/postural hypotension (e.g. fainting).
* Symptoms which suggest on-going abnormalities in immune system function include sore throats, enlarged glands, joint pains, headaches, problems with temperature control and intermittent flu-like feelings.
* Other symptoms which frequently occur in ME/CFS include sleep disturbances (often increased requirements at the onset followed by an inability to maintain a full night's sleep), alcohol intolerance (a very characteristic feature, particularly in the early period of illness) and irritable bowel symptomatology.
* Some people also develop emotional lability or mood swings and features of clinical depression as time goes on.
* Besides these more obvious and wide-spread symptoms there is also a myriad of "minor" ones.
Diagnosis
There are a number of scoring systems used to quantify symptoms for research and diagnosis purposes. One such system devised is 'The Clinical Working Case Definition of ME/CFS' and it cites that:
"A patient with ME/CFs will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories or autonomic, neuroendocrine, and immune manifestations." Carruthers BM, Jain AK, De Meirleir KL, Petersn DL, Klimas MD, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles ACP, Sherkey JA, van de Sande MI (2003). "Myalgic encephalomyelitis.chronic fatigue syndrome: Clinical working definition, diagnostic and treatment protocols". Journal of Chronic Fatigue Syndrome 11 (1): 7-36.
The type of fatigue described should be of new or definite onset (therefore not since birth); be unexplained by other causes; last for at least six months (from onset); and is not improved by rest.
For more information check out:
a b Carruthers BM, Jain AK, De Meirleir KL, Petersn DL, Klimas MD, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles ACP, Sherkey JA, van de Sande MI (2003). "Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working definition, diagnostic and treatment protocols". Journal of Chronic Fatigue Syndrome 11 (1): 7-36.
Other scoring systems
· Oxford criteria (1991)
· Holmes et al (1988)
· Carruthers et al (2003) Canadian Case definition for ME/CFS
· Australian Guidelines (2004)
"A patient with ME/CFs will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories or autonomic, neuroendocrine, and immune manifestations." Carruthers BM, Jain AK, De Meirleir KL, Petersn DL, Klimas MD, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles ACP, Sherkey JA, van de Sande MI (2003). "Myalgic encephalomyelitis.chronic fatigue syndrome: Clinical working definition, diagnostic and treatment protocols". Journal of Chronic Fatigue Syndrome 11 (1): 7-36.
The type of fatigue described should be of new or definite onset (therefore not since birth); be unexplained by other causes; last for at least six months (from onset); and is not improved by rest.
For more information check out:
a b Carruthers BM, Jain AK, De Meirleir KL, Petersn DL, Klimas MD, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles ACP, Sherkey JA, van de Sande MI (2003). "Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working definition, diagnostic and treatment protocols". Journal of Chronic Fatigue Syndrome 11 (1): 7-36.
Other scoring systems
· Oxford criteria (1991)
· Holmes et al (1988)
· Carruthers et al (2003) Canadian Case definition for ME/CFS
· Australian Guidelines (2004)
What Exactly Are The Symptoms Of CFS?
and how are they evaluated for diagnosis?
The CDC (Centers for Disease Control) has an official list of symptoms for medical practitioners to use when diagnosing CFS. There are two criteria:
1) Clinically evaluated, unexplained, persistent, or relapsing fatigue for at least six months that is: Of new or definite onset; not the result of ongoing exertion; not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities
2) Four or more of the following concurrent symptoms on a persistent or recurrent basis during six or more consecutive months of illness, none of which may predate the fatigue: Self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities; sore throat; tender cervical or axillary lymph nodes; muscle pain; multi-joint pain without joint swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and postexertional malaise lasting more than 24 hours.
(From "Chronic Fatigue Syndrome: New Insights Into An Enigmatic Illness," by Capt. Ceabert J. Griffith, PA-C, Physician Assistant Journal, February 1996 issue)
To Clarify:
In addition to fatigue (of the type described above) a minimum of 4 should be met:
· Cognitive impairment, manifested in short-term memory and concentration problems
· Sore throats
· Tender lymph nodes
· Muscle pain
· Joint pain
· Headaches
· Insomnia and/or unrefreshing sleep
· Post-exertional malaise/fatigue lasting for more than 24 hours after exertion
Anyone suffering with CFS will likely say that the symptoms used for diagnosis are only a small part of the illness - there are countless other horrendous symptoms involved. Please see My Own Symptom List to see the range of symptoms I suffer.
1) Clinically evaluated, unexplained, persistent, or relapsing fatigue for at least six months that is: Of new or definite onset; not the result of ongoing exertion; not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities
2) Four or more of the following concurrent symptoms on a persistent or recurrent basis during six or more consecutive months of illness, none of which may predate the fatigue: Self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities; sore throat; tender cervical or axillary lymph nodes; muscle pain; multi-joint pain without joint swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and postexertional malaise lasting more than 24 hours.
(From "Chronic Fatigue Syndrome: New Insights Into An Enigmatic Illness," by Capt. Ceabert J. Griffith, PA-C, Physician Assistant Journal, February 1996 issue)
To Clarify:
In addition to fatigue (of the type described above) a minimum of 4 should be met:
· Cognitive impairment, manifested in short-term memory and concentration problems
· Sore throats
· Tender lymph nodes
· Muscle pain
· Joint pain
· Headaches
· Insomnia and/or unrefreshing sleep
· Post-exertional malaise/fatigue lasting for more than 24 hours after exertion
Anyone suffering with CFS will likely say that the symptoms used for diagnosis are only a small part of the illness - there are countless other horrendous symptoms involved. Please see My Own Symptom List to see the range of symptoms I suffer.
Categories of ME/CFS
Not everyone with ME is affected the same way or to the same extent. Sufferers can be catergorised under one of three levels - mild, moderate or severe.
Anyone suffering with the mild form may still be able to work. However, some area of their life will suffer as a result of doing so. Perhaps their social life will be drastically reduced or their home chores will be neglected. Maybe they will come home after work and immediately crash on the sofa or in bed; unable to continue with anything else until they've had a few hours of sleep. Their weekends may be spent resting in front of the television or in bed. They will likely feel that something is 'not quite right'. They will probably have had every test known to man but have been told that they are completely healthy. Still they feel that something just doesn't sit right.
The mild sufferer may experience episodes of weakness and dizziness, low blood sugar, nausea, headaches or IBS (to name but a few symptoms). They are likely to have to make adjustments to daily living. There will be periods when they feel perfectly well, but any emotional, mental of physical stressors are likely to bring on another episode of poor health.
The moderate sufferer is probably unable to work and will often be confined to the home. Any activity is likely to bring on an attack and may result in leaving the sufferer bedridden for days or weeks if frequent rest breaks are not taken. Some moderate sufferers are unable to walk unaided.
Severely affected sufferers are generally bedridden for a large part of the time. They will be completely incapable of performing even the simplest of tasks, such as washing and preparing meals. They are likely to be reliant on a carer and will probably require a wheelchair to get about. The most severest will be unable to swallow or feed themselves and will probably require tube-feeding.
The following extract is useful for gauging levels of disability and often sufferers use scales such as these to measure improvement or degeneration of symptoms. I developed a scale to include my own circumstances and have used it diligently to record my own condition changes.
Anyone suffering with the mild form may still be able to work. However, some area of their life will suffer as a result of doing so. Perhaps their social life will be drastically reduced or their home chores will be neglected. Maybe they will come home after work and immediately crash on the sofa or in bed; unable to continue with anything else until they've had a few hours of sleep. Their weekends may be spent resting in front of the television or in bed. They will likely feel that something is 'not quite right'. They will probably have had every test known to man but have been told that they are completely healthy. Still they feel that something just doesn't sit right.
The mild sufferer may experience episodes of weakness and dizziness, low blood sugar, nausea, headaches or IBS (to name but a few symptoms). They are likely to have to make adjustments to daily living. There will be periods when they feel perfectly well, but any emotional, mental of physical stressors are likely to bring on another episode of poor health.
The moderate sufferer is probably unable to work and will often be confined to the home. Any activity is likely to bring on an attack and may result in leaving the sufferer bedridden for days or weeks if frequent rest breaks are not taken. Some moderate sufferers are unable to walk unaided.
Severely affected sufferers are generally bedridden for a large part of the time. They will be completely incapable of performing even the simplest of tasks, such as washing and preparing meals. They are likely to be reliant on a carer and will probably require a wheelchair to get about. The most severest will be unable to swallow or feed themselves and will probably require tube-feeding.
The following extract is useful for gauging levels of disability and often sufferers use scales such as these to measure improvement or degeneration of symptoms. I developed a scale to include my own circumstances and have used it diligently to record my own condition changes.
M.E/C.F.S Disability Scale
Extract taken from Dr Charles Sheppard's book "Living with M.E.."
0% Fit and well for at least the past three months. No symptoms at rest or following activity. Capable of full-time employment.
10% Generally well. No symptoms at rest. Occasional mild symptoms may follow activity. Capable of most forms of full-time employment.
20% Occasional mild symptoms at rest. More noticeable symptoms following activity. Some restriction of capabilities which require physical exertion. Able to work full-time but difficulty with work that requires physical exertion.
30% Mild symptoms at rest. Limited ability to carry out some tasks which require physical exertion. May be able to work full-time.
40% Mild or moderate symptoms at rest. Variable ability to carry out tasks associated with normal daily living. Unable to work part-time in a job involving frequent physical exertion. May be able to work. May be able to work part-time in other types of employment.
50% Mild to moderate symptoms at rest. Moderate to more severe exacerbation of symptoms following physical and/or mental exertion. Unable to carry out strenuous physical tasks. Able to perform light duties or desk work for several hours a day, provided adequate rest periods are provided.
60% Moderate symptoms at rest. Moderate to sever symptoms following any form of physical or mental exertion. Unable to carry out strenuous duties. Able to carry out light duties/desk work for one to three hours a day, provided adequate rest periods are available. Generally not confined to the house.
70% Moderate to severe symptoms at rest. Severe symptoms follow any physical or mental activity. Able to perform desk work or light duties for one or two hours during the day. Often confined to the house and may require wheelchair assistance at times.
80% Moderate to severe symptoms at rest. May only be able to carry out a minimal range of physical activities relating to personal care (e.g. washing, bathing) Frequently unable to leave the house and may be confined to a wheelchair or bed for much of the day. Unable to concentrate for more than short periods of time.
90% Severe symptoms at rest. Bedridden and housebound for much of the time. Experiences considerable difficulties with many aspects of personal care. Marked problems with mental functioning (e.g. memory, concentration). Requires a great deal of practical support.
100% Severe symptoms on a continual basis. Bedridden and incapable of living independently. Requires a great deal of practical social support.
10% Generally well. No symptoms at rest. Occasional mild symptoms may follow activity. Capable of most forms of full-time employment.
20% Occasional mild symptoms at rest. More noticeable symptoms following activity. Some restriction of capabilities which require physical exertion. Able to work full-time but difficulty with work that requires physical exertion.
30% Mild symptoms at rest. Limited ability to carry out some tasks which require physical exertion. May be able to work full-time.
40% Mild or moderate symptoms at rest. Variable ability to carry out tasks associated with normal daily living. Unable to work part-time in a job involving frequent physical exertion. May be able to work. May be able to work part-time in other types of employment.
50% Mild to moderate symptoms at rest. Moderate to more severe exacerbation of symptoms following physical and/or mental exertion. Unable to carry out strenuous physical tasks. Able to perform light duties or desk work for several hours a day, provided adequate rest periods are provided.
60% Moderate symptoms at rest. Moderate to sever symptoms following any form of physical or mental exertion. Unable to carry out strenuous duties. Able to carry out light duties/desk work for one to three hours a day, provided adequate rest periods are available. Generally not confined to the house.
70% Moderate to severe symptoms at rest. Severe symptoms follow any physical or mental activity. Able to perform desk work or light duties for one or two hours during the day. Often confined to the house and may require wheelchair assistance at times.
80% Moderate to severe symptoms at rest. May only be able to carry out a minimal range of physical activities relating to personal care (e.g. washing, bathing) Frequently unable to leave the house and may be confined to a wheelchair or bed for much of the day. Unable to concentrate for more than short periods of time.
90% Severe symptoms at rest. Bedridden and housebound for much of the time. Experiences considerable difficulties with many aspects of personal care. Marked problems with mental functioning (e.g. memory, concentration). Requires a great deal of practical support.
100% Severe symptoms on a continual basis. Bedridden and incapable of living independently. Requires a great deal of practical social support.
Prognosis
Because of the complexity of Chronic Fatigue Syndrome and the fact that it is not fully understood, prognosis is difficult to predict.
A good prognosis is more likely, however when there is:
- a definite history of acute viral illness (eg glandular fever), early diagnosis, gradual symptom improvement, a good management regime that deals with the physical, psychological and social factors and in effect tackles lifestyle changes, seeks to achieve a balance between overactivity and body deconditioning and deals with any depression or sleep disturbance issues.
A poor prognosis is more likely when:
- symptoms develop slowly over time, the illness begins after a particularly severe infective illness such as meningitis, patients do not get an early diagnosis or diagnose themselves, individuals experience severe and unrelenting symptoms for more than four years, there is a management regime that concentrates on too much rest or pressurises a patient to build activity levels too quickly, or fails to deal with any depression and/or sleep disturbance.
It is important that sufferers remain positive and remember that some will make a complete recovery, others will remain at a reduced level of activity and a minority will worsen.
References:
Alward, M. (1996) 'Government's expert group has reached consensus on prognosis of chronic fatigue syndrome,' British Medical Journal, 313:885.
Aylward, M. (1996) 'Government's expert group has reached consensus on prognosis of chronic fatigue syndrome,' British Medical Journal, 313:885.
Web Reference:
www.supportme.co.uk/prognosis.htm#_ftnref1
A good prognosis is more likely, however when there is:
- a definite history of acute viral illness (eg glandular fever), early diagnosis, gradual symptom improvement, a good management regime that deals with the physical, psychological and social factors and in effect tackles lifestyle changes, seeks to achieve a balance between overactivity and body deconditioning and deals with any depression or sleep disturbance issues.
A poor prognosis is more likely when:
- symptoms develop slowly over time, the illness begins after a particularly severe infective illness such as meningitis, patients do not get an early diagnosis or diagnose themselves, individuals experience severe and unrelenting symptoms for more than four years, there is a management regime that concentrates on too much rest or pressurises a patient to build activity levels too quickly, or fails to deal with any depression and/or sleep disturbance.
It is important that sufferers remain positive and remember that some will make a complete recovery, others will remain at a reduced level of activity and a minority will worsen.
References:
Alward, M. (1996) 'Government's expert group has reached consensus on prognosis of chronic fatigue syndrome,' British Medical Journal, 313:885.
Aylward, M. (1996) 'Government's expert group has reached consensus on prognosis of chronic fatigue syndrome,' British Medical Journal, 313:885.
Web Reference:
www.supportme.co.uk/prognosis.htm#_ftnref1
GETTING A DIAGNOSIS
Step One - Writing a Narrative
I can't emphasise enough the importance of writing an honest narrative when it comes to securing a diagnosis.
Start by writing down everything you have experienced, even the small details like headaches, cold hands and feet or restless legs. Jot all the symptoms down first then lay your narrative out as if you are talking to a trusted friend. Include the dates that you first experienced the symptoms, what preceded them and how long they lasted. If you need to get a clearer idea of a successful narrative then look at MY OWN DANCE WITH THE SANDMAN in the blog archive.
A narrative puts the symptoms in context and helps inform the doctor. Avoid handing over a simple list of symptoms as this can irritate the practitioner and possibly confuse him as the list is likely to be long. Don't bombard him with the narrative as soon as you enter his room, instead explain what you have been experiencing in your own words then offer to leave your narrative with him.
Start by writing down everything you have experienced, even the small details like headaches, cold hands and feet or restless legs. Jot all the symptoms down first then lay your narrative out as if you are talking to a trusted friend. Include the dates that you first experienced the symptoms, what preceded them and how long they lasted. If you need to get a clearer idea of a successful narrative then look at MY OWN DANCE WITH THE SANDMAN in the blog archive.
A narrative puts the symptoms in context and helps inform the doctor. Avoid handing over a simple list of symptoms as this can irritate the practitioner and possibly confuse him as the list is likely to be long. Don't bombard him with the narrative as soon as you enter his room, instead explain what you have been experiencing in your own words then offer to leave your narrative with him.
Public Service Announcement for the US Department of Health
CFS/ME CDC "Missing My Life"
Video by the American Centre for Disease Control and Prevention about the condition Chronic Fatigue Syndrome/Myalgic Encephalopathy, titled "Missing My Life".
Runtime: 0:30
11819 views
10 Comments:
Informative Videos About ME/CFS
This is not fatigue by Linda Crowhurst
ME is a complex mis of neurological symptoms
Runtime: 3:38
1739 views
10 Comments:
A Plea For More Support
When will ME be treated as the physical illness it is ?
A plea to Me Blair to fund physical research into Myalgic Encephalomyelitis (ME).
Runtime: 5:15
1314 views
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TEN WAYS SUFFERERS CAN HELP THEMSELVES
1. Try to eat a balanced diet and include plenty of slow-release carbs such as vegetables, pasta, and bread. Eat small meals often to prevent hypoglycemic slumps.
2. Keep a daily diary to identify times when you have the most energy. Note what precedes a change in your condition. Use a Personal Ability Scale to keep track of the changes in your health. See my post on Categories of ME/CFS dated August 26, 2007.
3. Try to do small activities for your brain and body. Always stick to the 70% RULE - only do 70% of what you assume you can. Think of it as keeping 30% back for recovery.
4. PACE yourself. Take frequent rest breaks between activities. Rest can mean sleep, meditation, or lying down and closing your eyes - NOT sitting and watching the television, as this requires a lot more energy than you think.
5. Plan your activities for a time when you are likely to have the most energy and give yourself plenty of time to complete them. Don't beat yourself up if you can't finish a task - just put it down and return to it when your batteries are fully charged.
6. Don't be afraid to ask family and friends for help.
7. Seek the help of local and national support groups.
8. Keep lists and make notes to help jog your memory on 'brain-fog' days.
9. Try to nurture a healthy sleep regime - learn the art of unwinding before bed and stick to a consistent sleep schedule:
~ Start by switching off the television and computer. Avoid any unnecessary stimuli.
~ Avoid caffeine after 6:00 p.m.
~ Avoid alcohol and sugar.
~ Take a warm bath filled with essential oils ...and soak.
~ Make yourself a cup of herbal tea, hot chocolate or malt drink just before you are about to retire to bed.
~ Limit your food intake prior to bed as a heavy meal may interfere with your sleep.
~ Listen to soft music or meditate.
~ Take a book to bed with you - preferably a boring one!
10. NEVER push yourself beyond your own limit or you may find your overall condition worsens.
2. Keep a daily diary to identify times when you have the most energy. Note what precedes a change in your condition. Use a Personal Ability Scale to keep track of the changes in your health. See my post on Categories of ME/CFS dated August 26, 2007.
3. Try to do small activities for your brain and body. Always stick to the 70% RULE - only do 70% of what you assume you can. Think of it as keeping 30% back for recovery.
4. PACE yourself. Take frequent rest breaks between activities. Rest can mean sleep, meditation, or lying down and closing your eyes - NOT sitting and watching the television, as this requires a lot more energy than you think.
5. Plan your activities for a time when you are likely to have the most energy and give yourself plenty of time to complete them. Don't beat yourself up if you can't finish a task - just put it down and return to it when your batteries are fully charged.
6. Don't be afraid to ask family and friends for help.
7. Seek the help of local and national support groups.
8. Keep lists and make notes to help jog your memory on 'brain-fog' days.
9. Try to nurture a healthy sleep regime - learn the art of unwinding before bed and stick to a consistent sleep schedule:
~ Start by switching off the television and computer. Avoid any unnecessary stimuli.
~ Avoid caffeine after 6:00 p.m.
~ Avoid alcohol and sugar.
~ Take a warm bath filled with essential oils ...and soak.
~ Make yourself a cup of herbal tea, hot chocolate or malt drink just before you are about to retire to bed.
~ Limit your food intake prior to bed as a heavy meal may interfere with your sleep.
~ Listen to soft music or meditate.
~ Take a book to bed with you - preferably a boring one!
10. NEVER push yourself beyond your own limit or you may find your overall condition worsens.
Coping with the disability associated with ME/CFS
The ' Props' Of Disability
I talk about the different 'props' that those of us who are disabled have to use, and about coming to terms with using them.
Runtime: 7:01
360 views
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Journeys to Recovery
Freedom From ME: Journeys to Recovery (Part 1)
Freedom from M.E. tells the emotional and inspirational stories of Lindsey, Alison and Phill, all of whom suffered from M.E. for a number of years. In frank, raw, and touchingly honest interviews, these three people describe their extraordinary healing journeys. They talk about life before M.E., the devastating circumstances of their initial symptoms, their response to being diagnosed, the numerous treatments they tried, ultimately what worked for them, and what life is like now they are fully recovered. To find out more and to get a copy of the full film, please visit http://www.FreedomFromME.co.uk/
Runtime: 4:43
3244 views
4 Comments:
Journeys to Recovery
Freedom From ME: Journeys to Recovery (Part 2)
Freedom from M.E. tells the emotional and inspirational stories of Lindsey, Alison and Phill, all of whom suffered from M.E. for a number of years. In frank, raw, and touchingly honest interviews, these three people describe their extraordinary healing journeys. They talk about life before M.E., the devastating circumstances of their initial symptoms, their response to being diagnosed, the numerous treatments they tried, ultimately what worked for them, and what life is like now they are fully recovered. To find out more and to get a copy of the full film, please visit http://www.FreedomFromME.co.uk/
Runtime: 6:53
2197 views
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My Own Story
WHAT IS WRONG WITH ME?
I began to feel ill in December 2004 after a particularly bad dose of flu. It failed to follow the usual course of events and I became progressively worse. I was unable to speak, or wash myself and my husband had to do everything for me. I was extremely ill for over 6 weeks and consequently lost a lot of time from my new teaching job.
I finally returned to work at the end of January 2005. I was told at the time, that my chances of contracting a similar virus were very slim. Although I was able to maintain the job, I was not well. There were days when it was a real struggle to get through the day; I suffered with exhaustion, weakness, nausea, upset bowel and headaches. I could fall asleep easily at night but woke up every couple of hours, with my nightclothes drenched in sweat and my limbs aching and weak. My skin would itch, almost as if there was something crawling over it.
Some mornings I would cry as I dragged myself out of bed and into the shower. I would always turn up at school with a smile on my face; I didn't want the Head to suspect that I felt ill; he might have considered me unfit for the job.
On the days that I felt fine I would work late at school, sometimes not leaving until 9:30 pm (my working day began at 7:45 am). I was constantly being told by the Head and the senior management team that I should slow down and not leave so late, but when the energy was there I would use it. I wanted to progress and do well. I would always suffer a day or two later with exhaustion and headaches.
I was plagued with a succession of viral illnesses and stomach bugs. I consulted a Nutritional Therapist/Iridologist about my tiredness and stomach problems. She suggested that I stop taking wheat, yeast and diary products and reduce sugar. I had to take high doses of Evening Primrose Oil, strong Aloe Vera Juice and probiotics. For a while it did seem to help with the stomach problems but then the inevitable happened - I picked up another virus. Eventually the symptoms came back. Most days I found myself falling asleep in the car on the way home, unable to do anything in the evening but crash on the couch or go straight to bed. I would usually have to force myself to wake up so that I could prepare more work for the next day or complete my marking. Weekends were spent on the couch or in bed with a laptop on my stomach in order to complete the paperwork required for my job. My social life came to an abrupt end.
I finally returned to work at the end of January 2005. I was told at the time, that my chances of contracting a similar virus were very slim. Although I was able to maintain the job, I was not well. There were days when it was a real struggle to get through the day; I suffered with exhaustion, weakness, nausea, upset bowel and headaches. I could fall asleep easily at night but woke up every couple of hours, with my nightclothes drenched in sweat and my limbs aching and weak. My skin would itch, almost as if there was something crawling over it.
Some mornings I would cry as I dragged myself out of bed and into the shower. I would always turn up at school with a smile on my face; I didn't want the Head to suspect that I felt ill; he might have considered me unfit for the job.
On the days that I felt fine I would work late at school, sometimes not leaving until 9:30 pm (my working day began at 7:45 am). I was constantly being told by the Head and the senior management team that I should slow down and not leave so late, but when the energy was there I would use it. I wanted to progress and do well. I would always suffer a day or two later with exhaustion and headaches.
I was plagued with a succession of viral illnesses and stomach bugs. I consulted a Nutritional Therapist/Iridologist about my tiredness and stomach problems. She suggested that I stop taking wheat, yeast and diary products and reduce sugar. I had to take high doses of Evening Primrose Oil, strong Aloe Vera Juice and probiotics. For a while it did seem to help with the stomach problems but then the inevitable happened - I picked up another virus. Eventually the symptoms came back. Most days I found myself falling asleep in the car on the way home, unable to do anything in the evening but crash on the couch or go straight to bed. I would usually have to force myself to wake up so that I could prepare more work for the next day or complete my marking. Weekends were spent on the couch or in bed with a laptop on my stomach in order to complete the paperwork required for my job. My social life came to an abrupt end.
My Own Story
A CASE OF THE FLU?
In late December of 2005 I developed a stomach bug that was particularly bad (simultaneous vomiting and diarrhoea over 2 days); I was left with stomach pain and lack of appetite for weeks afterwards. Then in January I got another cold virus. I struggled on at work with the stomach problem and exhaustion but found it increasingly difficult. The slightest adrenalin rush (caused by anything and everything; from the telephone ringing to a clatter of saucepans) would cause the weakness and exhaustion to immediately descend on me. The joints in my hands and feet would ache and felt like blocks of ice. I would alternate between feeling cold one minute to excessive sweating (which was often embarrassing) the next.
Then in late January I was sent home from school after feeling very dizzy and strange during one of my classes. The movement of the trees swaying outside the classroom played with the sunlight entering the room and made me feel disorientated and confused and I began to suffer the symptoms of vertigo - although I had no idea what it was at the time. I tried to ignore it as I didn't want the children to become alarmed and I only had another twenty minutes to work, but eventually I had to send for another member of staff. My husband left his work took me straight to the doctor's surgery. Blood tests were done but nothing was found.
The Monday morning found me weak, but I struggled in to work trying to ignore the nausea and excruciating bowel pain. As the week went on I became more and more anxious and jittery. I was racked with incomprehensible sweats that plagued both my waking and sleeping hours. Several times during the night I would drag myself up out of bed to change my nightclothes.
Then I was struck with another viral illness - the third one in the space of a month. This one seemed different, more potent, as if I had been poisoned. I was left completely fatigued; sick with nausea and weakness. I continually tried to get myself up and out of bed but would immediately feel tired, weak and dizzy, so would return to the sanctuary of my bedroom, shaking and indignant.
The virus dragged on for weeks. The episodes of dizziness continued on a daily basis and I was often awoken by the sensation. I experienced a constant barrage of twitching and muscle jerks, vibration-like sensations in my arms, legs and stomach, as well as pins and needles and uncontrollable itching; as if I my whole body was covered in insect bites.
Then in late January I was sent home from school after feeling very dizzy and strange during one of my classes. The movement of the trees swaying outside the classroom played with the sunlight entering the room and made me feel disorientated and confused and I began to suffer the symptoms of vertigo - although I had no idea what it was at the time. I tried to ignore it as I didn't want the children to become alarmed and I only had another twenty minutes to work, but eventually I had to send for another member of staff. My husband left his work took me straight to the doctor's surgery. Blood tests were done but nothing was found.
The Monday morning found me weak, but I struggled in to work trying to ignore the nausea and excruciating bowel pain. As the week went on I became more and more anxious and jittery. I was racked with incomprehensible sweats that plagued both my waking and sleeping hours. Several times during the night I would drag myself up out of bed to change my nightclothes.
Then I was struck with another viral illness - the third one in the space of a month. This one seemed different, more potent, as if I had been poisoned. I was left completely fatigued; sick with nausea and weakness. I continually tried to get myself up and out of bed but would immediately feel tired, weak and dizzy, so would return to the sanctuary of my bedroom, shaking and indignant.
The virus dragged on for weeks. The episodes of dizziness continued on a daily basis and I was often awoken by the sensation. I experienced a constant barrage of twitching and muscle jerks, vibration-like sensations in my arms, legs and stomach, as well as pins and needles and uncontrollable itching; as if I my whole body was covered in insect bites.
My Own Story
THE WAITING GAME
I began to become truly convinced that I was experiencing something more than influenza, when objects in my peripheral vision began to shake and move about. Then I started to drop things - a glass here, a cup there - they would just slip through my fingers spilling their contents everywhere. It was difficult to tell whether I was just being clumsy or something more insidious was happening - but I couldn't remember accidents occurring so frequently before. Several times I slipped and fell down the stairs; landing in a bruised heap at the bottom. I began to fear taking a shower as I experienced episodes of disequilibrium that would often lead to a fall. Frequently my mouth and tongue would not work properly and my speech became slow and slurred. Even the very act of chewing food caused me pain, as my jaw muscles spasmed with every small movement
As the weeks dragged on into months, the profound fatigue episodes continued until I rarely left the house. My muscles would become weak after only a few steps, leaving my whole body shaking with the effort. Yet some days I could manage a little housework. On those days I desperately tried to make up for lost time but would invariably suffer with the effort, days later. My sleep became badly affected; with a complete reversal of my normal pattern. I would often remain awake until the morning hours only to spend the whole day asleep. Other times I would find it difficult to stay asleep and would wake every couple hours.
I tried to explain the symptoms to my doctor, but there were so many of them that I feared she would think I was exaggerating, attention-seeking, or worse, an out-and-out hypochondriac. I tried to find the right words but the more I tried, the more muddled I became.
The months went on and blood test after blood test came back normal. I began to sink into a deep depression. In desperation, I started researching on the internet and eventually contacted a local chronic fatigue support group and told them my story. I was given details of a new service that the local health authority had just set up for people suffering with Myalgic Encephalopathy/Chronic Fatigue Syndrome (M.E/CFS)/Post Viral Fatigue Syndrome. I was told to call my doctor and give them the details as I couldn't be screened until I was officially referred by my general practitioner. My doctor agreed that I could be suffering with M.E. and sent off the paperwork.
As the weeks dragged on into months, the profound fatigue episodes continued until I rarely left the house. My muscles would become weak after only a few steps, leaving my whole body shaking with the effort. Yet some days I could manage a little housework. On those days I desperately tried to make up for lost time but would invariably suffer with the effort, days later. My sleep became badly affected; with a complete reversal of my normal pattern. I would often remain awake until the morning hours only to spend the whole day asleep. Other times I would find it difficult to stay asleep and would wake every couple hours.
I tried to explain the symptoms to my doctor, but there were so many of them that I feared she would think I was exaggerating, attention-seeking, or worse, an out-and-out hypochondriac. I tried to find the right words but the more I tried, the more muddled I became.
The months went on and blood test after blood test came back normal. I began to sink into a deep depression. In desperation, I started researching on the internet and eventually contacted a local chronic fatigue support group and told them my story. I was given details of a new service that the local health authority had just set up for people suffering with Myalgic Encephalopathy/Chronic Fatigue Syndrome (M.E/CFS)/Post Viral Fatigue Syndrome. I was told to call my doctor and give them the details as I couldn't be screened until I was officially referred by my general practitioner. My doctor agreed that I could be suffering with M.E. and sent off the paperwork.
My Own Story
FINALLY, A DEFINITIVE DIAGNOSIS!
As I waited to see the M.E. specialist, I began to experience inexplicable noise sensitivity which would lead to severe panic attack, nausea and vertigo. One such episode was precipitated by my husband getting dressed in the morning. The sound of flesh on fabric sent my head spinning and my stomach into convulsions. My short term memory worsened and I struggled to remember the names for common objects. I found it increasingly difficult to remain focused and easily lost track during conversations, with my speech little more than a slur, at times. Episodes of ear and lymph gland pain, tinnitus, tremor, palpitations, shortness of breath, low blood sugar attacks, chills and poor circulation in my feet and hands, filled my every waking moment.
Finally, after dozens of tests and a visit to both a neurologist and ME/CFS specialist, I was given the definitive diagnosis of Chronic Fatigue Syndrome. But this was only the start of my journey as you will see.
Finally, after dozens of tests and a visit to both a neurologist and ME/CFS specialist, I was given the definitive diagnosis of Chronic Fatigue Syndrome. But this was only the start of my journey as you will see.
My Own Symptom List
Many people become confused by the number of different symptoms involved in this illness and indeed when I was researching prior to diagnosis, I found I had many more symptoms than the documents described. I later found that most of my symptoms were experienced by other sufferers - I wasn't going crazy. In view of this and the lack of 'real ' data I have decided to provide my own list of symptoms. Hopefully this may show you the range that can be experienced. However, no two sufferers are alike - some exhibit less or even more symptoms; they may be bedbound, or housebound but able to move about, some may able to do some physical activity, others may even be able to work part or full-time...we are all very different and as such will present different symptoms in differing degrees!
My Personal Symptom List
Extreme Fatigue and exhaustion
No stamina for exertion - weakness and fatigue after normal physical activity (e.g. standing up, brushing hair, taking a shower etc.)
Weakness in limbs - loss of muscle power
Feelings of shakiness
Visible tremors
Dizziness:
Type 1) On standing - Postural Orthostatic Tachycardia
Type 2) Vertigo
Myoclonus - jerking movements
Itching, pins and needles and vibration like sensations particularly in my hands, feet, limbs and stomach.
Headaches
Shooting pains across head and into the back of eyes
Objects in peripheral vision shake and move about
Pain in eyes
Tinnitus
Muffled hearing
Ear pain
Hearing Loss
Noise Sensitivity
Slurred speech
Memory Problems and Forgetfulness
Word-finding Difficulties
Concentration Difficulties
Irritable bowel - diarrhoea, constipation and pain
Stomach pain
Low blood sugar attacks
Nausea
Muscle Pain
Pain in joints of hands and feet
Poor circulation in hands and feet
Disequilibrium - frequent falls
Disorientation
Clumsiness - dropping things. bumping into and tripping over objects
Nightsweats
Hot flushes/ sweats/ chills
Hypersomnia
Insomnia
Sleep reversal
Rosacea
Eczema
Shortness of breath (on exertion)
Palpitations and pain in chest
Pain in the armpits and groin
Jaw pain during the act of chewing
Anxiety
Panic Attacks
Depression
Mood swings
Tearfulness
Frequent viral illnesses/continued flu-like feelings
For more information on the range of symptoms check out my other blog (Dancing with the Sandman) posts titled THE FEATURES OF ME/CFS, LOW-DOWN ON ME/CFS - PARTS 1,2 AND 3 AND MY OWN DANCE WITH THE SANDMAN
My Personal Symptom List
Extreme Fatigue and exhaustion
No stamina for exertion - weakness and fatigue after normal physical activity (e.g. standing up, brushing hair, taking a shower etc.)
Weakness in limbs - loss of muscle power
Feelings of shakiness
Visible tremors
Dizziness:
Type 1) On standing - Postural Orthostatic Tachycardia
Type 2) Vertigo
Myoclonus - jerking movements
Itching, pins and needles and vibration like sensations particularly in my hands, feet, limbs and stomach.
Headaches
Shooting pains across head and into the back of eyes
Objects in peripheral vision shake and move about
Pain in eyes
Tinnitus
Muffled hearing
Ear pain
Hearing Loss
Noise Sensitivity
Slurred speech
Memory Problems and Forgetfulness
Word-finding Difficulties
Concentration Difficulties
Irritable bowel - diarrhoea, constipation and pain
Stomach pain
Low blood sugar attacks
Nausea
Muscle Pain
Pain in joints of hands and feet
Poor circulation in hands and feet
Disequilibrium - frequent falls
Disorientation
Clumsiness - dropping things. bumping into and tripping over objects
Nightsweats
Hot flushes/ sweats/ chills
Hypersomnia
Insomnia
Sleep reversal
Rosacea
Eczema
Shortness of breath (on exertion)
Palpitations and pain in chest
Pain in the armpits and groin
Jaw pain during the act of chewing
Anxiety
Panic Attacks
Depression
Mood swings
Tearfulness
Frequent viral illnesses/continued flu-like feelings
For more information on the range of symptoms check out my other blog (Dancing with the Sandman) posts titled THE FEATURES OF ME/CFS, LOW-DOWN ON ME/CFS - PARTS 1,2 AND 3 AND MY OWN DANCE WITH THE SANDMAN
GOOD SOURCES OF INFORMATION ON ME/CFS
Living Well with Chronic Fatigue Syndrome and Fibromyalgia: What Your Doctor Doesn't Tell You...That You Need to Know (Living Well)
Amazon Price: $10.17 (as of 10/07/2008)
The Doctor's Guide To Chronic Fatigue Syndrome: Understanding, Treating, And Living With Cfids
Amazon Price: $17.05 (as of 10/07/2008)
Chronic Fatigue and its Syndromes
Amazon Price: (as of 10/07/2008)
One & the Same: Connecting Fibromyalgia, Chronic Fatigue Syndrome, Candidiasis & Immune System Dysfunction
Amazon Price: $13.05 (as of 10/07/2008)
DIET
The Chronic Fatigue Syndrome Cookbook: Delicious, Wellness-Enhancing Recipes Created Especially for Cfs Sufferers
Amazon Price: (as of 10/07/2008)
The Chronic Fatigue Healing Diet (Overcoming Common Problems)
Amazon Price: (as of 10/07/2008)
EXERCISE
Exercise - a promising treatment for CFIDS. (chronic fatigue immune dysfunction syndrome): An article from: Medical Update
Amazon Price: $5.95 (as of 10/07/2008)
Chronic Fatigue: Your Complete Exercise Guide (Cooper Clinic and Research Institute Fitness Series)
Amazon Price: (as of 10/07/2008)
Chronic Fatigue: The Complete Mind/Body Solution (The Complete Mind/Body Solution Box Set)
Amazon Price: (as of 10/07/2008)
Chronic fatigue. (how to prevent chronic fatigue in athletes by balancing exercise and rest periods): An article from: Palaestra
Amazon Price: $5.95 (as of 10/07/2008)
ALTERNATIVE WAYS OF COPING
Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome
Amazon Price: $17.95 (as of 10/07/2008)
The Bowersox Protocol for Fibromyalgia and Chronic Fatigue
Amazon Price: $18.96 (as of 10/07/2008)
Chronic Fatigue Syndrome: Your Natural Guide to Healing with Diet, Vitamins, Minerals, Herbs, Exercise, and Other Natural Methods
Amazon Price: $14.92 (as of 10/07/2008)
Breaking Out of Environmental Illness: Essential Reading for People with Chronic Fatigue Syndrome, Allergies, and Chemical Sensitivities
Amazon Price: $12.60 (as of 10/07/2008)
Herbs for Chronic Fatigue
Amazon Price: $4.95 (as of 10/07/2008)
PERSONAL STORIES
Living with Chronic Fatigue Syndrome: A Personal Story of the Struggle for Recovery
Amazon Price: (as of 10/07/2008)
Shattered
Amazon Price: (as of 10/07/2008)
Parting the Fog: The Personal Side of Fibromyalgia/Chronic Fatigue Syndrome
Amazon Price: $12.95 (as of 10/07/2008)
Encounters With the Invisible: Unseen Illness, Controversy, And Chronic Fatigue Syndrome (Medical Humanities)
Amazon Price: $16.88 (as of 10/07/2008)
CFS AND CHILDREN
Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Journeys with the Dragon
Amazon Price: $24.95 (as of 10/07/2008)
Pediatric Chronic Fatigue Syndrome
Amazon Price: $28.44 (as of 10/07/2008)
Madame Squidley and Beanie
Amazon Price: $12.37 (as of 10/07/2008)
Malibu Carmie
Amazon Price: $12.92 (as of 10/07/2008)
Wild Boar Moore and the Four
Amazon Price: $14.61 (as of 10/07/2008)
ME/CFS Stuff on CafePress
Tee-shirts etc.
TIME TO RELAX
Enjoy your relaxation time with some of these great products
Perfect for your bath as part of a hydrotherapy session, but remember never bathe in hot water as this will drain your energy. Instead run a warm bath and pour in some essential oils. Always get out slowly, wrap a big towel around you and lie down for half an hour.
Fetching new data from eBay now... please stand by
Great Stuff on eBay
Fetching new data from eBay now... please stand byTOP ME/CFS LINKS
Some great links that I can recommend - check them out.
The ME Association
The website of The ME Association. A UK organisati more...1 point
Action for M.E.
Action for M.E. is a UK charity working to improve more...1 point
ME Research UK — Home
ME Research UK is a national UK charity funding bi more...1 point
Foggy Friends Where ME/CFS Sufferers Unite - Myalgic Encephalopathy - Chronic Fatigue Syndrome - Post Viral Fatigue Syndrome - Chronic Fatigue Immune Dysfunction Syndrome - Myalgic Encephalomyelitis
Foggy Friends is a support and information website more...1 point
Post Viral Fatigue Syndrome - Myalgic Encephalopathy - Chronic Fatigue Syndrome - Myalgic Encephalomyelitis
Information about Post Viral Fatigue Syndrome, Mya more...1 point
Association of Young People with ME - AYME - ME/CFS Charity
Association of Young People with M.E provides help more...1 point
Insomnia Cures
Insomnia is poor quality and very unsatisfying sle more...1 point
Reflexology Techniques
Reflexology is an ancient healing art which natura more...1 point
CDC - Chronic Fatigue Syndrome
CDC Centers for Disease Control and Prevention Chr more...0 points
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis / M.E.
Resource for Myalgic Encephalomyelitis, Chronic Fa more...0 points
Let me know what you think
Maybe there's something you would like me to add?
Now's your chance to have your say...don't be shy. If you think something is missing and would like to see it added - speak up! Maybe you want to give me a phat thumbs up -- all you have to do is shout...ALL FEEDBACK WILL BE GRATEFULLY RECEIVED (enough of a hint?)!!
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APWearsPink
Hello Sheila, It will be a pleasure adding your book to my lens. Fibromyalgia is a terribly debilitating condition that is not unlike Chronic Fatigue Syndrome. I wish you all the best in your writing endeavours. I also write children's stories, so we have another thing in common. Best wishes - Andie Posted September 01, 2007 |
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SheilaEllis
Hi, I also suffer from fibromyalgia. I hope that this will offer some encouragment: I recently wrote a children's book (illustrated by my learning disabled neice). Never give up! If you want to see the book: http://wildboarmooreandthefour.googlepages.com also on Amazon.com Posted August 29, 2007 |