When you ask how are you, do you really want to know? It is such a difficult question to answer when you have so many symptoms. It seems that people are so disappointed that you are not well, this leaves the ill person feeling guilty. It is often asssumed you were well before, when you weren't, just had not listened to you.
People often tell you to trust God, and scold you for feeling sorry for yourself, they tell you about someone who has cancer and how positive they are, and they know someone who had CFS who is now well and assume you should be too. Ill people enter a world that healthy people know nothing about, it is even more difficult to have an illness that not many people know much about, one that has not even been named properly. It is made worse when they assume you are just really tired or stressed, when nothing could be further from the truth. I have never known tiredness to stop people from doing things they want to do. Where as CFS stops sufferers from doing quite a lot of enjoyable activities. It is such an insult to ask people with CFS if they are still feeling tired. Whilst it is true that some people do need to sleep 16-21 hours a day, it is also common to find people who suffer from insomnia. Tiredness is not a bad feeling; CFS feels awful. Not a week would go by without someone telling me they think they have CFS, because they are also tired, they don't realise that you just don't 'think' you have CFS and then go on with life and go off and play tennis, go to school, or work etc. They don't realise that your life comes to a stand still, and that it is a frightening experience having CFS. Surely you cannot feel like this and live! Don't be fooled by the name, Chronic Fatigue Syndrome, also know as Myalgic Encephalomyelitis, (M.E.) Low natural killer cell syndrome, Chronic Fatigue Immune Dysfunction, amongst other names; is a seriously debilitating, neurological/immunological illness, similar to M.S. or Polio. CFS produces disturbances in the brain/central nervous system, and muscles in varying degrees in different people, it also has remissions and relapses (as does MS) there is also a waxing and waning of symptoms which relates to the amount of activity expended. I have also met people who have been diagnosed with ME/CFS by doctors who do not understand this illness, who do not have ME/CFS.
I have never really read an article that described CFS well, perhaps it is indescribable.
When I first became sick with CFS in 1992, I kept saying to the doctor, "I feel weird". He would ask me if I felt tired, I would answer, no! However i was laying on the couch all day and not long after that, I started sleeping for 16 hours a day. Eight years down the track, suffering from my 4th bout of CFS I am able to describe the symptoms a little clearer, but still with some confusion.
If someone asks me how I am feeling, they usually haven't got the time to listen to my list of symptoms, and they change the conversation before I warm up. It is easier to answer,OK.
For me starting with a virus,( there appears to be an error in the antiviral pathway), there is a starting to get well period and then wham, it is there, sudden in onset, stuffing up every part of your body.
BRAINFOG feeling spaced out, not feeling connected to your brain, feeling like you have the flu, fuzzy headed, like being drugged, like having cotton wool for a brain, feeling drunk . Makes driving and moving around in busy places a bit scary. This could be interpreted as fatigue.
COGNITIVE DYSFUNCTION..makes writing an article like this difficult...woozy headed, with difficulty concentrating, feels like you have had a stroke, or someone has snipped a wire to your brain. A page of writing becomes a blurred jumble, and looks faded, and takes effort to read, print looks faded. Not being able to remember words, or put a name to objects, you may remember the beginning letter of a word, saying the opposite word.Confusion. You may get letters mixed up, someone may tell you C and you will write S, not being able to follow a conversation, (embarrassing) making errors in banking, writing may not make sense, writing words back to front. not being able to spell simple words. Thinking becomes exhausting. Having a brain that does not work properly is extremely disturbing
EYE PROBLEMS...blurred vision, not being able to track moving objects, (going to the movies is difficult early in the illness or during a relapse). Eye pain, (muscles) make watching t.v. and reading difficult.Early in the illness or in a relapse. Tired sore eyes that feel like they have been crying. Puffy eyes, and a glazed, spaced out look are common.
PALLOR...CFS sufferers are usually extremely pale or grey, the look that appears before someone faints
FEELING FAINT... Known as neurally mediated hypotension is a heady feeling like you are going to faint or go through the floor as you stand and walk around, is really disgusting, and makes life difficult... is worse when standing still. This has got to do with low blood volume to the brain.Your body becomes orthstatic intolerant....does not want to be upright.
DIZZINESS...is so severe, it can even be felt when laying down, you cannot move your head from side to side on a bad day. Cannot stand the head being touched.
LOSS OF BALANCE / ATAXIA....a feeling of walking on rubber, feeling like walking on a ship in rough sea, feeling like you should hang onto the rails when you walk.Like being drunk.Slurred speech. Staggered gait, caused by not having balance, having to walk slowly, walking into people.
MUSCLE WEAKNESS..walking on weak, shaky, jelly-legs,feeling like they will go from under you at any minute. too weak to hold a pen , too weak to speak or swallow.(especially in a relapse) There is no mucle wasting. Weakness can be so severe, that people are bedbound or use wheel chairs but are too weak to wheel them selves.
MUSCLE PAIN....for some people this is a real issue, for me, it is only when using muscles, (stairs, driving,lifting etc. ) that I get the burning pain. this pain is in the weight bearing muscles. Flu like achiness. Tender spots to touch and bruising easily On opening the car door and similar efforts I get a pain that feels like broken bones.
MUSCLE FATIGUE, easily fatigued muscles. Tender spots to touch..Limbs feel like lead during a relapse. Muscle twitching.
EXHAUSTION..not to be confused with feeling unmotivated, or selective exhaustion. Most people recover quickly from exhaustion, CFS sufferers, are constantly running out of energy at the cellular level and it does not go away with rest. Having no energy in CFS feels unpleasant. Inability to use arms and legs, feeling too weak, to sit for long periods in a relapse, or walk or stand for long periods. Small movement is exhausting. Holding the telephone and talking are exhausting. Brushing your teeth leaves you feeling like you have run a marathon. Too exhausted to sing! Feeling floppy like a rag doll.
LOSS OF COORDINATION- dropping things, due to muscle weakness, lack of grip. A delay between the brain and the movement, cogwheel movement, spacticity, difficulty in writing. all movement feels strange and is slowed.Looking through a magazine is difficult, and clapping feels strange. Muscle jitter.
ALTERED PERCEPTION- things appear heavier than they are, misjudging doorways, and walking into walls, and people are common, sound is heightened or lowered, a gentle touch can cause pain. Senistivity to light. Gentle touch can cause pain
PARAESTHESIA- a feeling of numbness, in hands and feet, causes an awful feeling through the body during movement, it feels really bad. Feeling cold in the feet and hands.Can also be felt as pins and needles.
SHAKES / TREMORS..a constant shakiness inside, becomes worse with movement, feels awful.Can be seen in hands.
TEMPERATURE, a high temperature can be constant or fluctuating.
SWOLLEN GLANDS....any chemicals can cause glands to enlarge.
SORE THROAT......also can be caused from reactions to chemicals,& toxins. Post nasal drip. These symptoms can also mean that a virus or bacteria is still present or the immune system is stuffed up.
Nausea, weight gain, arthralgia, (joint pain) irritable bowel syndrome, night sweats, heart palpitations, tintinitis, depression, food intolerance, hypoglycemia, candida, headaches, oral problems, secondary infections, shingles, skin, haiar ,nail problems, Urinary tract disorders, weather sensitivity, wieght loss of gain, gastrointitestinal problesm, such as vomiting,panic attacks, anxiety,difficulty swallowing,pounding heart, TMJ, endometriosis, new severe allergic reacations to food and medications, paralysis,nightmares,seizures,mood swings, are all common in CFS.
It is common to find pre-existing ALLERGIES in People with CFS, especially sinus problems. Sleep disorders,such as restless legs syndrome and sleep apnoea, are also found.
The unique thing about CFS is the POST EXERTIONAL MALAISE, any energy spent, has to be counter balanced with rest. This causes people with CFS a great sadness.
FATIGUE.....overwhelming fatigue,as is common in other illness'. Feeling like you have not slept. It is not the same fatigue as found in shift workers, and nursing mothers. This is not chronic fatigue, the word syndrome refers to a collection of other symptoms that must be present
GENERAL ILL-HEALTH, - also known as general malaise, refers to the overall awfulness of this illness, making every part of the body unwell. PWC often refer to feeling like they have been poisoned. PWC have to force themselves to move, this requires courage and says something about the human spirit. Overdoing it, results in relapse, and overdoing it can be doing very little in some cases I often say, it feels like I have been given an anesthetic and been told to, "get going." Immune dysfunction can cause a myriad of problems, as it does in Aids.
Things that PWC should avoid; Anything that will challenge the immune system; Toxins, chemicals. Cigarette smoke, Perfumes, Cleaning products, Sprays, Garden products, Car fumes, Petrol. Virus' will exacberate symptoms as will. physical, mental, and emotional stress. Hot baths and showers, and hot weather also make symptoms worse. Avoid food that may upset the bowel. People who are energy drainers and upset you. Too much activity, even holidays can cause a relapse. Alcohol, makes symptoms worse.
PWC NEED REST- the need to balance activity with rest cannot be over emphasized. These people need the support of family and friends, they also need a doctor who understands. Relaxation, meditation/prayer are also helpful. There is a time to talk about the illness and a time to talk about everything but. There is nothing like a good laugh and a sympathetic ear. Be sensitive, as people with CFS are grieving for the life they have lost. Auto immune diseases , where the immune sytem attacks its own tissue, as in Lupus, Rheumatoid Arthritis, and Underactive thyroid disease,need to be checked for,as they are also common in CFS. Heart problems often appear and need to be monitored Whilst, most of the above symptoms can be explained medically, the cause for CFS is still unknown.
CFS can go into complete remission, and appear again during another virus, however it does have a tendency to become chronic. People don't usually die from CFS, however PWC have commited suicide, and heart problems and complications can occur.
CFS is not simply being tired and exhausted, it is an illness that makes simple tasks really difficult.
You just can't see it!
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