What is ME .. More than feeling tired

What are the symptoms of ME?

Well this is a tough one! There is no rhyme or reason to ME and its symptoms. Some people purely suffer fatigue and head ache ... others suffer everything!!

Here is a list i put together from a few web sites .. its quite long but remember not every one gets all of them.

A-specific complaints;

Breathing problems

Lack of appetite

Change of bodyweight

Sciatica

Freakish course of the disease; sudden relapse and short recovery

Hair loss and/or changes of the hair

Palpitations, spasms of the heart etc.

Short of breath

Abnormal position of the body while standing or walking

Premenstrual Syndrome (PMS)

Wrong reaction of medicine and food/ Chemical sencivitys

Endometriosis

Decrease or disappearing of fingerprints

Flu like symptoms;

Coifing

Hungry feeling

Always feeling sick

Fast pulse

Chilling

Red cheeks or pail face

Sweating and night sweat

Temperature raise (also temperature fluctuations and feeling feverish)

A cold

(Auto)Immune problems;

Allergies

Pain in the Achilles tendon

Tongue rashes

Inflammation of bind texture

Burning feeling in and dry throat, mouth, nose and eyes

Thirst

Dry vagina

Skin rashes, skin irritations and suddenly appearing of brushes, itching, tinkling and prickling skin

Infections

Gout

Ammonia

Presence of foreign body protein

Mucus in the longs

Painful and/or swollen lymph knots (neck, armpit, crotch)

Nose allergies, nose mucous membrane inflammation and sinusitis

Sticky and/or inflamed eyelids

Ear infection

Thyroid inflammation

Running nose

Painful saliva knots

Boils

Gum infection and root infection

Abnormal T4/T8 relation

Food allergies

Decrease of white blood cells

Sand feeling in eyes

Intestines;

Stomach complains (constipation and/or diarrhoea)

Stomach each and Irritated Bowel Syndrome (IBS)

Incontinent

Alcohol intolerance

Stomach (mucous membrane) inflammation

Nausea and vomiting

Often and/or burning feeling when urinating (irritated bladder)

Gassy

Laboratory tests;

Anaemia

Abnormal creatinin-levels, liver enzymes, urine acid

Mental problems;

Not being able to focus

Agoraphobia (not daring to go out by yourself)

Fear- and panic attacks

Apathy and lack of initiative

Angriness and aggression

Emotional liability

Concentration problems

Decrease thinking

Disorientation and flowing feeling

Dyslogia (speaking and thinking)

Memory lapses (especially short term memory)

Hallucinations

Depression or euphoria

Flushes

Personality changes

Irritated

Difficulty with math

Not able to find the right word (aphasia)

Not able to understand what is been said to you or what you read

Neurological and mycological complains;

Blackouts

Not able to find the words

Brain fog

Dyslexia

Balance problems

Feeling of fainting

Stiff, tinkling or burning feeling in hands, feet and/or face

Hormone disorder

Hypotension or hypertension

Cold hands and feet

Decrease of libido

Microcirculation disorder

Breaking down and deforming of mitochondria

Clumsiness

Sleep disorder (hypersomnia or insomnia, sleepiness, not-refreshing sleep and sleep apnea, vivid and nightmarish dreams and live-like dreams)

Muscle weakness

Stiffness of the tongue

Neurological phenomenon's

Over sensibility of temperature changes

Paralytic seizures

Over sensibility for weather changes

Twitching of the muscle nerves

Pain;

Chronic background pain

Chest pain

Joint pain

Headache

Pain at the junction places between upper- and under jaw

Pain in lymph knots

Neck pain

Pain in the eyeball en eye muscles

Back pain

Chronic tension and/or oppressed feeling in the muscles

Muscle pain (especially in limbs) en fibromyalgia (burning, radiating and gnawing feeling, sensitive, stiffness and/or itchiness)

Muscle spasms

Muscle stiffness and muscle weakness in limbs

Stinging pain (in chest, hands and feet, eyes, wrist, forehead, stomach)

Tiredness;

Exhaustion

Fast tiredness and lack of stamina

Extreme tiredness

Relapse after exertions (exertion-intolerance)

Senses;

Balance disorder (dizziness, Romberg positive)

Photophobia (intolerance of bright light)

Loss of hearing in one ear

Over sensibility for noise

Pain in ear

Tinnitus (ear rustling, hearing a buzzer, yell of clicking noises)

Smell hallucinations

Changes of smelling, hearing and tasting

Seeing little twinkling stars

Reduced touch

Blurry and/or double vision

Hypersensitivity (not able to make distinctions)

The ability scale

The ability scale is used as a rough glide line for what a person is able to do before the require a fest and so on.

My ability at the moment is about 40%/50% ... although that does not mean i can do half of what you can do!! ... i was about 10% when first affected .. and at one point i made it to about 80% before relapsing again.

I change ability daily although less so now i am more of an old timer at the condition!!

Here is the FULL ability scale

FULLY RECOVERED
100%	No symptoms even following physical or mental activity. Able to study and work full time without difficulty, plus enjoy a social life.
VIRTUALLY RECOVERED
95%	No symptoms at rest. Mild symptoms following physical or mental activity - tire rather easily but fully recovered next day. Able to study or work full time without difficulty but a slight restriction on social life.
MILDLY AFFECTED
90%	No symptoms at rest. Mild symptoms following physical or mental activity - tire easily. Study/work full time with some difficulty. Social life rather restricted with gradual recovery over 2/3 days.

80%	Mild symptoms at rest, worsened to moderate by physical or mental activity. Full time study at school/ college is difficult, as is full-time work, especially if it is a crowded, noisy or busy environment. Home tuition or part-time study without difficulty.
MODERATELY AFFECTED
70%	Mild symptoms at rest, worsened to severe by physical or mental activity. Daily activity limited. Part time study at school/college is very tiring, and may be restricting social life. Part time work may be possible for a few hours in the day. With careful pacing out of activities and rest periods, one may discover windows of time during the day when one feels significantly better. Gentle walking or swimming can be beneficial.

60%	Mild to moderate symptoms at rest. Increasing symptoms following physical or mental activity. Daily activity very limited. Study with others or work outside the home very difficult unless additional support is available, e.g. use of a wheelchair/quiet room for a rest period. Short (I-2 hours) daily home study/work may be possible on good days. Quiet, non-active social life possible.
MODERATE TO SEVERELY AFFECTED
50%	Moderate symptoms at rest. Increasing symptoms following physical or mental activity. Mid-day rest may still be needed. Simple, short (1hr) home study/home activity possible, when alternated with quiet, non-active social life. Concentration is limited. Not confined to the house but may be unable to walk without support, much beyond 100/200m. May manage a trip to the shops in the wheelchair.

40%	Moderate to severe symptoms following any activity. Care must be taken not to over-do one's life style at this stage. Not con-fined to the house but unable to walk much more than 50/I00m, usually requiring aids such as walking stick/crutches. May manage a wheelchair trip to the shops on a quiet day. Requires 3 or 4 regular rest periods during the day. Only one 'large' activity possible per day - friend dropping by or doctor's visit or short home study (half hour at a time) etc - with space usually requiring rest day/s between.
SEVERELY AFFECTED
30%	Moderate to severe symptoms at rest. Severe symptoms following any physical or mental activity. Usually confined to the house but may occasionally take a quiet wheelchair ride or very short, gentle walk in the fresh air. Most of the day resting. Very small tasks possible but mental concentration poor and home study difficult. As mentioned in the report on ME to the Chief Medical Officer, (20024) and the DfES report on education for children with medical needs (20015), children may be too ill to access any education at all. This should be respected and kept under review.

20%	Fairly severe symptoms at rest. Weakness in hands, arms or legs may be restricting movement. Unable to leave the house except very rarely. Confined to bed/settee most of the day but able to sit in a chair for a few, short periods. Unable to concentrate for more than one hour a day but can read for about 5-10 minutes at a time.
VERY SEVERELY AFFECTED
10%	Severe symptoms following any activity. Weakness and pain in arms or legs. In bed the majority of the time but feeling more stable and less dizzy. No travel outside the house. Concentration very difficult indeed. A friend can be seen for ten minutes or so.

5%	Severe symptoms almost continuously but may be possible to be propped up in bed for very short periods. Weakness and pain in arms or legs can give rise to paralysis; dizziness and nausea. Small, personal care may be possible (e.g. if washing equipment placed on the bed it may be possible to wash some parts of the body). As with 0%, sudden jerking movements can be a problem and what may be described as panic attacks are felt. No TV is possible but a little quiet music or audio book may be listened to for a few minutes. A friend can be seen for a minute for a hug and a few words.

0%	Severe symptoms on a continuous basis. In bed constantly, feeling extremely ill even with permanent rest. Severe dizziness makes it almost impossible to be propped up in bed for longer than a few minutes at a time. Light and noise are very painful to the eyes and ears - curtains are closed and earplugs are needed. Severe pain almost anywhere in the body with the skin feeling very cold and extremely sensitive to touch. Unable to care for oneself at all; washing needs to be done a tiny bit at times throughout the day. Nausea and severe fatigue make eating extremely difficult. Liquid based food preferred - little and often. Occasionally, nasal feeding tubes are required when the energy to chew is completely spent. Any stimulus worsens the feeling of being severely ill, with no movement in the bedroom preferred. Any visitor to the room is almost impossible. Talking, even to the carer/family, is often impossible. This is often misread as being 'selective mute'. Severe adrenaline rushes felt with heightened sensitivity; jumping and over reacting to doors shutting/door bell ringing, etc. Sleep pattern often completely reversed.

What is the treatment?

There is no cure, not miracle treatment or one program that helps every one. But there are plenty of things you can try.

1) treat your symptoms one by one, pain killers, sleeping pills, anti sickness drugs, anti muscle spasm drugs and so on.

2) CBT - Cognitive behavioural therapy .. this is where you make a record of everything you do. Then you will work out a program. For instance ... you aloud to sit up for 10 mins with a 50 min rest after. Then you my watch telly for 10 mins and have a 50 min rest. That would be for more severely affected people.

Other once might be, go shopping for 1 hour and have a 1 hour rest and so on.

Most people find this helpful in pacing ... but in the long run doesnt have much affect. Also if you are asked to step things up too quickly it could have sever problems later on.*

3) Graded exercise - This is where you would start one week by swimming 2 lengths .. then in 2 weeks you would up it to 4 lengths .. then again to week you would make it 6 lengths and so on.

Most people i know who have tried this became severely ill after a few weeks.*

(* If you are going to try something like this, good luck ... just make sure you have a therapist who UNDERSTAND ME and will listen to you when you say 'no, thats to much')

4) Rest - and plenty of it!! It seems the only real thing people who recover have in common is that they got as much rest as they could. They learned to listen to there bodies and took a rest of a sleep when they needed to. This is v. v. v. hard to do when you want to have a life but its the only way to keep your symptoms down to a minimum.

Prognosis

About 5% of people with ME make a *full recovery* but there are many groups that people fall in to ... i will try and explain it here.

1) people who recover with in 2 years and very get sick again

1a) people who recover with in 2 years then relapse later, spending the rest of there life relapsing and remitting.

1b) People who recover with in 2 years then relapse and stay at that level forever.

2) People who recover in 5 years and never get sick again.

2a) people who recover in 5 years then relapse, spending the rest of there life relapsing and remitting,

2b) people who recover in 5 years then relapse spending the rest of there life at that level

3) People who spend there who life relapsing .. getting better for 6 months to a year then relapsing again.

4) people who make it to a high ability level and stay there for the rest of there lives.

5) people who are severely affected for the rest of there lives.

Obviously there are people who suffer for 10 years then just get better and so on ... but they are they main 5 recovery groups.

Sum up!

Well i think that covers most things!! I hope you have a little more understanding of what happens to people with ME/CFS/PVCFS its more than just feeling tiered!!

Its a very debilitating condition .. even people at a very high ability struggle from day to day.

If you have any questions please E mail me ... and also if you feel there is anything needs to be added to this .. let me know!