Not just tiered all the time.

[PurplySparkleyJoey]

A few people lately have been talking to me about my ME and saying 'so your just tiered all the time' ... including Frans dad!
So i thought i would tell you a bit about ME, what it is and how it affects me.

Here we gooooo ... ;D

What is ME?[/b]

M.E. Stands for Myalgic Encephalo myelitis

Myalgic - means muscle - indicating the pain involved in the muscles.

Encephalo - means brain - indicating that the brain functioning is involved.

myelitis - means inflammation of the spinal cord and does not occur in M.E. so 'pathy' ( Myalgic Encephalopathy ) is now being used instead which means 'sickness' or 'illness'.

M.E. (myalgic encephalomyelitis) is a potentially chronic and disabling neurological disorder, which causes profound exhaustion, muscle pain and cognitive problems such as memory loss and concentration. Other symptoms that are common include sensitivity to light, noise and smell, disturbed sleep patterns and persistent headaches [/color]

[PurplySparkleyJoey]

What are the symptoms of ME?[/b]

Well this is a tough one! There is no ryme or reason to ME and its symptoms. Some people purly suffer fatuige 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

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 girly bits

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

Over sensibility for chemicals

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) [/color]

[PurplySparkleyJoey]

How do you get diognosed?[/b]

Wel, you have to have had the symptoms for at least 6 months. On a constant basis. You MUST have both fatuige and head ache as 100% of ME suffers have this ... although they do not have to be your worst symptom.
Forinstance, you might be bed bound though feeling sick becasue if you more your sick .. although you might feel very *awake*
You really should be seen by a consoltant, but it depends what your symptoms are like. Its if nurological then see a nurologist ... if its maily gastro then see a tummy man and so on.
Although once diognosed its likaly they will let you go and your care will be continued by the GP

who gets ME?

Any one and every one, although it seems higher in people with more *active* lives, teachers, nurses and so on.
Kids can get it from a very young age although there are 'prime' groups who are more severly affected. Forinstance 13 to18 then again 27 to 32 and so on.
[/color]

[PurplySparkleyJoey]

The ability scale[/b]

There isnt enough room in one post for the ability scale so if you would like to read it you can do here purplyjoey.proboards12.com/index.cgi?board=Disabilitys&action=display&thread=1021747242&start=0 My ability at the moment is about 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!!

What is the treatment?

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

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

2) CBT - Cogntive behaviorl theripy .. this is where you make a record of everything you do. Then you will work out a program. Forinstance ... 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 severly 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 lenghts .. then again to week you would make it 6 lengths and so on.
Most people i know who have tryed this became severy ill after a few weeks.*

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

4) Rest - and plenrty 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 bodys 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 mimimum.
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[PurplySparkleyJoey]

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 relase later, spending the rest of there life relaping 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 sepnding 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 severly 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![/b]

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 strugle 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[/color]

[Scrumpy]

Very well written Hun.. Dr Sparkley

Scrumpy xxx

[PurplySparkleyJoey]

Aw thank you petal!! You know if you want to add anything or dont agree with everything then let me know cos im always making sure i get it all right!!

Lots of love your way

[Scrumpy]

Nope , I think you covered everything!..lol
I totally agree about the graded exercise though ....it made me soooooooo much worse....the pysiotherapist was a right old bag too! Insisting she was right and sayin i didnt know anything about my own illness....Deserves a good kneecappin if ya ask me!

Scrumpy ;D OOOOOOoooooooo Painful