Recently I have been diagnosed with Myalgic Encephalomyletis or M.E. for short. Many years ago this was called the yuppy flu and lazyitis. Not much is understood about M.E. at present. So what is it?
Myalgia means muscle pain and Encephalomyelitis means inflammation of the brain and spinal cord. The cause of M.E. is not currently known. There are various theories - but none has been proved. A popular theory is that a viral infection may trigger the condition. It is well-known that fatigue is a symptom that can persist for a short time after having certain viral infections. For example, infection with the glandular fever virus or the influenza virus can cause fatigue for several weeks after other symptoms have gone. However, most people recover within a few weeks from the fatigue that follows known viral infections.
Even if a viral infection is a trigger of M.E., it is not clear why symptoms persist when there is no evidence of persisting infection. Also, the symptoms of many people with M.E. do not start with a viral infection.
It is estimated that
M.E. affects about 1 in 300 people in the UK, possibly more. It is about three times as common in women as in men. The most common age for it to develop is in the early twenties to mid-forties..
There is no test that proves that you have M.E. A doctor will usually diagnose
M.E. based on your symptoms. Some tests are usually done to rule out other causes of your fatigue or other symptoms. For example, blood tests may be done to rule out anaemia, an underactive thyroid gland, and liver and kidney problems. All these tests are normal in people with
M.E.
The medical definition of M.E. states that symptoms should have lasted for at least four months in adults and three months in children and young adults.
The medical definition of M.E. states that symptoms should have lasted for at least four months in adults and three months in children and young adults.
It may pass after a few months or years, or in many cases may never pass but has periods of remission and relapses, often exasperated by stress, poor sleep and periods of illness.
What are the symptoms you may well ask. Mine include:
Hypersomnia: This is the need to sleep prolonged periods during a 24 hour cycle, extreme constant exhaustion with unrefreshing sleep. No, not like pulling an all nighter and being tired all day. Since December, no matter how long or deep I sleep I feel just as tired as when I went to sleep. Every day for 9 months I have constantly felt like this.
Memory loss: I used to have a great memory and could recall conversations word-for-word years after they occurred. Now I struggle to remember what I boiled the kettle for, despite there being a mug with a teabag in it right next to it.
Poor concentration and attention span: Films and tv programmes are now out of the question, as is reading paragraphs. This blog will not be proof read, but please don't bother pointing out the mistakes in it.
Joint and muscle pain: This is unlike: I went to the gym for 2 hours but haven't been for 6 months and may have overdone it. This is random with no signs of inflammation or cause. I have had days where even my eyelids ache. Random places ache for no apparent reason, and can be triggered even whilst doing even the simplest of jobs. Often muscle spasms can occur with no release, and some people have found even cortisone injections do not help.
Headaches: Over the last 9 months, I have spent around 6 months with a headache. This is with me when I wake, and until I sleep. Painkillers do not help. Sitting in a dark and quiet room, compresses and massage do not help.
Reoccurring sore throat: There is no obvious sign of infection or inflammation, however a sore throat is present. For some people, tenderness of nearby lymph nodes may occur without pathological enlargement.
Dizziness (neurally mediated hypotension on tilting): Random bouts of dizziness can occur, the room around me goes back and I can't hear what is going on until it clears.
Nausea: This can be present from waking up all throughout the day, often triggering people to ask me if I am pregnant. This is irritating.
Food intolerance: I now have to be careful eating various foods as I can now get agonising stomach cramps and bloating to foods such as dairy, meat, grains and some fruit and vegetables such as potatoes, tomatoes, peppers and citrus fruits.
Alcohol intolerance: I have gone from being able to enjoy several pints and been slightly merry, to one double vodka leaving me drunk for 24 hours at a time. This may sound like a cheap night, but the following day as you are trying to explain to people it is 11am and you haven't had a single drop of alcohol in 12 hours as you are not an alcoholic and they look at you with pity in their eyes as you stagger around trying to just stand up straight, this wears thin quickly.
Chest pain and shortness of breath: I go through phases of the muscles in my chest and around my lungs being fatigued and painful that medical professionals have thought I was having a heart attack. Just breathing becomes a lot of effort and painful. Palpitations are often very common and can be unnerving.
Anxiety and panic attacks: This was discussed in a previous blog but is also a characteristic of M.E. This often has no obvious trigger.
Depression: This may be because you have spent months exhausted, dizzy and in pain, or a symptom in its own right.
Other symptoms listed that however I do not have personal experience include: difficulty sleeping, insomnia, disturbed sleeping patterns
People with M.E. find that many activities leave them fatigued such as shopping, going to work, even domestic cleaning. One 2 hour shopping trip left me unable to function for 3 days afterwards. I also find that after half hour at work I am physically unable to stay awake, and need to sleep for several hours when I return home. I only work two hours a day. I have often found myself unable to complete tasks as simple as cooking.
In severe cases, simple tasks such as brushing teeth can leave the patient exhausted and needing prolonged time in bed to recover. These cases often leave the patient bedbound.
So what are the treatments? Well, at current these involve taking antidepressants, regular gentle exercise, physiotherapy, cognitive behaviour therapy, improvements to diet and REST!
So please excuse my break from the blogging world recently.... I have been a little tired.... and after reading this, I think I need a nap.
What are the symptoms you may well ask. Mine include:
Hypersomnia: This is the need to sleep prolonged periods during a 24 hour cycle, extreme constant exhaustion with unrefreshing sleep. No, not like pulling an all nighter and being tired all day. Since December, no matter how long or deep I sleep I feel just as tired as when I went to sleep. Every day for 9 months I have constantly felt like this.
Memory loss: I used to have a great memory and could recall conversations word-for-word years after they occurred. Now I struggle to remember what I boiled the kettle for, despite there being a mug with a teabag in it right next to it.
Poor concentration and attention span: Films and tv programmes are now out of the question, as is reading paragraphs. This blog will not be proof read, but please don't bother pointing out the mistakes in it.
Joint and muscle pain: This is unlike: I went to the gym for 2 hours but haven't been for 6 months and may have overdone it. This is random with no signs of inflammation or cause. I have had days where even my eyelids ache. Random places ache for no apparent reason, and can be triggered even whilst doing even the simplest of jobs. Often muscle spasms can occur with no release, and some people have found even cortisone injections do not help.
Headaches: Over the last 9 months, I have spent around 6 months with a headache. This is with me when I wake, and until I sleep. Painkillers do not help. Sitting in a dark and quiet room, compresses and massage do not help.
Reoccurring sore throat: There is no obvious sign of infection or inflammation, however a sore throat is present. For some people, tenderness of nearby lymph nodes may occur without pathological enlargement.
Dizziness (neurally mediated hypotension on tilting): Random bouts of dizziness can occur, the room around me goes back and I can't hear what is going on until it clears.
Nausea: This can be present from waking up all throughout the day, often triggering people to ask me if I am pregnant. This is irritating.
Food intolerance: I now have to be careful eating various foods as I can now get agonising stomach cramps and bloating to foods such as dairy, meat, grains and some fruit and vegetables such as potatoes, tomatoes, peppers and citrus fruits.
Alcohol intolerance: I have gone from being able to enjoy several pints and been slightly merry, to one double vodka leaving me drunk for 24 hours at a time. This may sound like a cheap night, but the following day as you are trying to explain to people it is 11am and you haven't had a single drop of alcohol in 12 hours as you are not an alcoholic and they look at you with pity in their eyes as you stagger around trying to just stand up straight, this wears thin quickly.
Chest pain and shortness of breath: I go through phases of the muscles in my chest and around my lungs being fatigued and painful that medical professionals have thought I was having a heart attack. Just breathing becomes a lot of effort and painful. Palpitations are often very common and can be unnerving.
Anxiety and panic attacks: This was discussed in a previous blog but is also a characteristic of M.E. This often has no obvious trigger.
Depression: This may be because you have spent months exhausted, dizzy and in pain, or a symptom in its own right.
Other symptoms listed that however I do not have personal experience include: difficulty sleeping, insomnia, disturbed sleeping patterns
People with M.E. find that many activities leave them fatigued such as shopping, going to work, even domestic cleaning. One 2 hour shopping trip left me unable to function for 3 days afterwards. I also find that after half hour at work I am physically unable to stay awake, and need to sleep for several hours when I return home. I only work two hours a day. I have often found myself unable to complete tasks as simple as cooking.
In severe cases, simple tasks such as brushing teeth can leave the patient exhausted and needing prolonged time in bed to recover. These cases often leave the patient bedbound.
So what are the treatments? Well, at current these involve taking antidepressants, regular gentle exercise, physiotherapy, cognitive behaviour therapy, improvements to diet and REST!
So please excuse my break from the blogging world recently.... I have been a little tired.... and after reading this, I think I need a nap.
Further information and support
ME Association
7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF
Tel: 0844 576 5326 Web: www.meassociation.org.uk
Tel: 0844 576 5326 Web: www.meassociation.org.uk
Action for ME
PO Box 2778, Bristol, BS1 9DJ
Tel: 0845 123 2314 Web: www.afme.org.uk
Tel: 0845 123 2314 Web: www.afme.org.uk
Association of Young People with ME (AYME)
9A Vermont Place, Tongwell, Milton Keynes MK15 8JA
Tel: 08451 232389 Web: www.ayme.org.uk
Tel: 08451 232389 Web: www.ayme.org.uk
Tymes Trust (The Young ME Sufferers Trust)
PO Box 4347, Stock, Ingatestone, CM4 9TE
Tel: 0845 003 9002 Web: www.tymestrust.org
A national UK service for children and young people with ME, and for their families.
Tel: 0845 003 9002 Web: www.tymestrust.org
A national UK service for children and young people with ME, and for their families.
The 25% ME Group
21 Church Street, Troon, Ayrshire KA10 6HT
Tel: 01292 318611 Web: www.25megroup.org
Support for people who have the severe form of CFS/ME.
Tel: 01292 318611 Web: www.25megroup.org
Support for people who have the severe form of CFS/ME.