Welcome
This site is intended to provide up-to-date, relevant information on the condition Chronic Fatigue Syndrome/Myalgic Encephalopathy and help raise awareness of this debilitating illness. Please help me to do this by sending the link to anyone who is or might be suffering with ME/CFS.
Please note that I am not a medical doctor but a sufferer of ME/CFS; you are advised to contact your own practitioner if you are at all concerned with your health. The information I provide is gathered from my own experience and research and I ask the reader to look into things themselves before embarking on any new regimes. Please be aware that I cannot accept any responsibility for damage arising as a result of readers accessing this website and using the information I provide. Thank you.
If you wish to contact me personally my email address is: wordsworth99@hotmail.com.
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 - with 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% acutely disabled. It impacts severely 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 universal cure or treatment has been found.
As promised here is the story so far.
During the first day of increasing the dose I was very ill. I was shaking, sleepy, confused and could hardly move due to extreme weakness . I normally feel weak but the medication worsened it and almost made me feel as if I were in the early days of my illness again.
After the first day I began to feel a little better. I could move about as before - which is slowly, but that is normal for me - and my speech improved to the same level it was before taking the medicine.
Although I felt no real improvement in terms of the majority of symptoms associated with ME/CFS I have to say that my sleep has improved. I can now sleep at night and have been awake during the day for the full week. This is a big improvement for me, as I struggle with sleep; usually staying awake for days and never awakening during the daylight hours. So, we will see.
I am going to increase the dose tomorrow, as requested by the doctor. My daily dose of Pregabalin will then be 450 mg. I will update you as to my progress.
6 comments:
The adjustment to the medication seems pretty swift - if it helps you get some real refreshing sleep that's a little miracle in itself. Looking forward to the progress reports!
My daughter who is 15 is on 450mg a day for about 1 1/2 months. She is able to sleep better as well, and has finally been able to return to school for 2 classes a day. A homebound tutor is going to start coming to our house 3 times a week for 1 1/2 hours as well. She has good days and bad days, but now the good ones are out numbering the bad. As you know, good just means she can get up around. This disease has a way of humbling those who have it. She never takes anything for granted anymore. She also suffers from Fibromyalgia as well. She was a provincial basketball player as well, and hopes to be again.
Thank you for posting about this, it is a great help. It does sound like you adjusted very quickly, and I am also looking forward to seeing how it is helped.
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I've been taking the pregablin for over 1 yr now and its helped some, but there are days nothing helps..
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