Sunday, 27 February 2011

Signs and Symptoms of Autonomic Dysfunction

imageAn interesting, if long – but this merely reflects the number and complexity of symptoms we suffer – list of signs and symptoms of Autonomic Dysfunction (a.k.a. Dysautonomia). If you read through them, you’ll recognise many that you probably associate with your fibromyalgia, ME/CFS and even IBS, multiple chemical sensitivity and other related and overlapping conditions.

For my own purposes, I’ve stuck through the very few symptoms that I don’t get on this list. Honestly, seeing them all listed like this, even I don’t know how we manage to put up with them and function on any level at all.

Some of the listed symptoms are always present while others occur when a person with Autonomic Dysfunction has been standing or sitting too long:



-Vertigo (room spinning or the sensation of spinning)

-Feeling faint (pre-syncope)

-Fainting (syncope)

-Chest pain or pressure

-Excessive fatigue

-Rapid heart rate (tachycardia)

-Stomach pain

-Intestinal cramping




-Exercise Intolerance: becoming short of breath on mild exertion,
having chest pain or palpitations on mild exertion. Having excessive
heart rate during or immediately after exercise. Leg cramps or
numbness of arms and legs during or after mild exercise.

-Visible pooling in arms and legs: Deep purple-red colour in fingers
and toes.

-White appearance of fingers. Some present with white patches of skin
on arms and legs.

-Extremely cold hands and feet.

-Numbness of hands and feet.

-Muscle weakness

-Muscle and joint pain

-Tremors or mild shaking of hands

-Frequent headaches or migraine headaches

-Irritability due to decreased blood flow to the brain

-Feeling anxious/Having panic attacks due to increased production of

-Mood changes


-Inability to concentrate or remember (frequently referred to
as "brain fog")

-Inability to tolerate changes in temperature

-Decreased sweating or excessive sweating

-Abnormal deep tendon reflexes may or may not be present.

-Basic neurological exam is normal.

-Intelligence normal when receiving adequate cerebral perfusion.

Less frequently recognized signs and symptoms:


-Disruption of sleep/wake cycle usually consisting of increased
energy late in the evening and lowest energy level in the morning
regardless of amount or quality of sleep.

-Central sleep apnea

-Need to sleep 12-14 hours in order to complete simple activities of
daily living.

-Anoxic or convulsive seizures that are not epileptic.

-Frequent need to urinate at night.

-Upon standing feels head is "heavy". This resolves with lying down
or with walking around.

-Decrease in (or absence of) lubricating tears in the eye.

-Sensitivity to bright, florescent light and bright sunlight. Many patients report feeling pre-syncopal in large grocery stores and department stores that use excessive florescent lighting. Flashing lights and multi-coloured lighting can also produce symptoms.

-Visual distortion: Television screens and computer screens can appear distorted, especially post-syncopal or pre-syncopal episode. Flat screens are recommended.

-Distorted depth perception resulting in a feeling of unsteadiness. Often appears to be "clumsy" or excessively cautious when climbing stairs, reaching for an object, etc.

-Other visual disturbances include a greying out or blacking out of the visual field; either partially or completely.

-Decreased awareness of what is in the peripheral visual field. This often causes the patient to startle because they did not perceive anyone or anything next to them.

-Frequent "bumping into things". Attributed to a combination of visual and depth perception deficits.

-Noise sensitivity. Loud or beating sounds can cause pre-syncopal episodes. Difficulty filtering out sounds. Easily distracted by sounds.

-Sensitivity to odours, even pleasant smelling chemicals such as perfume. Odours such as cleaning products, gasoline, strong foods, etc. may cause extreme nausea, retching, vomiting, dizziness and headache.

-Decrease production of saliva or excessive production of saliva.

-Severe constipation and decreased gut motility.

-Weight gain regardless of diet modifications.

-Overall slowing of metabolism is common.

-Increased metabolism (rare)

-Excessive gut motility leading to chronic diarrhoea and weight loss.
(less common)

-Sensitivity to touch. Mild pat on the arm or squeeze of the hand can cause excruciating pain especially right after an episode or if the patient has not had enough sleep.

-Decrease sensitivity to pain/touch in certain areas. If standing or sitting too long causes hands and feet to turn cold and blue, patient will have decreased sensation in these areas due to poor blood flow.

-Taste and appetite changes. Fruits and other acidic foods may taste extremely acidic. Foods may taste differently if patient is tired, stressed, or post-syncopal episode.

-Hair loss due to decreased blood supply to hair follicles.

-Speech disturbances: Inability to finish an expressed thought, loss of train of thought, "spoonerisms", especially if up and about for 2 hours or more without lying flat and resting.

-Comprehension difficulties. Inability to follow a conversation. May hear words but is unable to understand their context in the sentence. Cannot focus on more than one activity at a time. May not realize they are being addressed. Losses conversation focus when topic is changed. Is easily distracted from the conversation focus by any environmental stimuli.

-Memory recall deficits in long and short term memory. Improves with lying down and resting.

-Abdominal migraines. Severe stomach pain triggered by large meal or by sitting or standing too long. Usually resolves if patient lies quietly.

-Drifting to the right or left when walking. Most commonly patients report drifting to the left. Many patients report always fainting to the left as well. Appears to be unrelated to hand-dominance, but further research is needed.

-Tend to have mild symptoms of Ehlers-Danlos, but do not necessarily
test positive for the disease. This includes hypermobile joints, double joints, and soft, velvet-like skin that has little or no texture.

-Often has another auto-immune disorder.

-Family History of auto-immune disorder or symptoms that resemble
autonomic dysfunction.

-Appears to have more viral illnesses than general population. Often
diagnosed with Chronic Fatigue Immune Dysfunction Syndrome.

(Via: Signs and Symptoms of Autonomic Dysfunction)

Saturday, 26 February 2011

Fasolada (Greek Bean Soup) Recipe

image1 cup haricot or navy beans
3 cups water
1 medium onion, chopped
2 cloves garlic, chopped
2 carrots, peeled and chopped
2 celery stalks, peeled and chopped
1 cup canned, crushed or diced tomatoes
1 tablespoon tomato paste
3 vegetable stock cubes
1 teaspoon oregano or Greek oregano if you can find it
¼ cup fresh, chopped parsley
Salt and pepper to taste

Soak beans in three cups water overnight (at least eight hours). You can soak them for longer, but you may need to change the water. Simmer beans on medium-low heat in 2.5 quarts of water for thirty minutes. Add onion, garlic, carrots, and celery. Simmer for one hour. Add tomatoes, tomato paste, vegetable stock cubes, oregano, salt, and pepper. Simmer on low heat an additional forty five minutes to one hour, or until the beans are tender. Add chopped parsley just before serving.

Fasolada (Greek Bean Soup) Recipe

Chronic Fatigue Syndrome & Fibromyalgia Global Map

View Chronic Fatigue Syndrome & Fibromyalgia Global Map in a larger map

We’ve mentioned this map before, when it was new, but I thought I’d pop back to have a look at how it has progressed.

It asks for those who are actually diagnosed with Chronic Fatigue Syndrome, Fibromyalgia or both and, I feel, we have to assume that people have been honest about their diagnosis, just as we must assume that their doctors’ diagnostic capacity was working correctly in the first place.

The map has the limitations that it can only display those people who are online and have heard of and registered on the map and, then it would appear skewed to include only those patients for whom English is a 1st or 2nd language.

But all that notwithstanding, there are a LOT of pins on that map and, if you take nothing else away from it, it has to be patently obvious that it simply cannot be within the realms of any logic or possibility for that many people to independently “imagine” their illness symptoms and, as prevalent (and real) as psychological disorders are, I feel the weight of this evidence alone – the sheer numbers – also makes it impossible for these to be psychological in nature either. “Mass hysteria” on this scale? No, it’s way beyond reason.

And, thankfully, scientific evidence is beginning to prove it.

Friday, 25 February 2011

Post-Exertional Malaise

imageHere are three articles on Post-Exertional Malaise from the CFIDS Association of America, which I think everyone should read. Not just ME/CFS/CFIDS sufferers, but those who aren’t too. (Perhaps especially the doubters and the ones with vested psycho interests.)

Anyway, the three articles; Unraveling Post-exertional Malaise talks about how post-exertional malaise is defined and what it feels like:

A physician with CFS says, “My PEM feels like a worsening of my baseline CFS symptoms – more fatigue, headaches, neck/back muscle achiness (but not outright pain), problems concentrating/reading. My insomnia also sometimes increases temporarily and at its worse, my throat hurts and my lymph nodes feel more tender.” Andrew, a person with CFS (PWC) says, “I can’t focus enough to watch TV. Conversation becomes difficult. Any kind of stimulation feels like an assault on my senses.”

In Post-Exertional Malaise: Cause and Effect, those of the “Wesley School”, would be particularly recommended to read the section which explains what PEM is NOT. And it gives clear evidence for why it’s not, Kinesiophobia, defined as “an excessive, irrational, and debilitating fear of physical movement and activity resulting from a feeling of vulnerability to painful injury or reinjury.”

As I think we’d all conclude from listening to our own bodies, the more likely causes demonstrated by CFS patients are abnormalities in the central nervous system, cardiovascular and energy metabolism system, and immune system.

And in Post-Exertional Malaise: Perception and Reality, you start to get a much clearer, measurable, idea of just how severe PEM really is:

In the test/re-test protocol used by VanNess and colleagues, the 20 percent decrease in cardiopulmonary function in CFS patients during the second [maximum exercise] test is unique. Variation in cardiopulmonary function has been measured in people with pulmonary hypotension, end-stage renal disease, cardiac problems and cystic fibrosis; none of these patient groups exhibit more than a 7 percent variation in function.

That seems to suggest we are almost 3 times more incapacitated than people with those diseases. ‘Bout time this was properly recognised, isn’t it?

Thursday, 17 February 2011

Brain storm

imageAt one point during the night, I was lying with my eyes closed and could feel, very markedly, every pulsation, in time with my heart beat, running up through my neck and head.

You know the images you see when your eyes are closed, well those were “jumping” in time with the pulsations, just like the picture of an old analogue TV, when the horizontal and/or vertical hold went squiffy.

In addition, I felt dizzy and nauseous. You know the sort of dizzy and nauseous that you normally lie down to escape from … except, of course, I was already lying down, so there was no means of escape from it until I fell asleep again.

This morning I woke with a stabbing headache and felt sick and shaky as soon as I moved. I have sensations of “brain shakes” often, but never quite this bad.

Tuesday, 15 February 2011

On being a domestic goddess

imageYesterday, while steaming a bit of fish for lunch (smoked haddock, if you must know, with mash thanks to Aunt Bessie), I slung the ingredients for a fresh Potaje de Berros (watercress soup, Canarian style) into a saucepan to simmer for supper.

After lunch, I rustled up a batch of Vegan Blueberry Muffins, which, to be fair, didn’t rise that well and the fruit exploded into purple pools, but they still taste OK for an afternoon tea treat.

At the same time, the bread machine was busying itself making dough, which I subsequently split into a dozen rolls, put two by the warm oven to rise and baked  them just in time for super-fresh, warm bread for tea and later with the soup.

(The real test for the rolls will be today when I attempt to bake two more. The house is too cold to encourage them to rise. They were probably warmer in the ‘fridge.)

Otherwise, it’s an almost cuddly image of perfect domestic blissyness isn’t it?

imageAll I need is boobs like Nigella Lawson’s for the image to be absolutely complete. Winking smile

Nothing could be further from the truth in reality (especially about the boobs) and I can only do this stuff at all by using lots of shortcuts and by only doing one small task at a time before taking a rest.

Funnily enough, it was the muffins that caused me the most trouble. I took the laptop to the kitchen so that I could follow the recipe – can’t remember more than 3 –4 ingredients otherwise – but it was still too much for me to cope with getting all the ingredients together from various parts of the kitchen and then standing to mix.

Actually, I couldn’t stand and I’d had to crouch down on the floor when the power in my legs had become exhausted and could no longer hold me up, whilst at the same time my head had gone all swimmy. The dreaded orthostatic intolerance again.

And then I shook from head to foot from the “exertion” of it all!

But, of course, I can’t take that many short cuts that would help – if I do opt for any packaged items I have to watch the ingredients carefully - because I have to maintain this wheat-free, gluten-free, meat-free, dairy-free diet if I’m to keep my symptoms from food intolerances, IBS, fibromyalgia pain and ME fatigue in check.

Though I know, it’s hard to imagine how much worse I could be, I do know that all of my symptoms are greatly exacerbated if I ever eat “naughty food”.

What we’re talking here is getting out of bed for around a minute or two (a little longer for the muffins) about half a dozen times during the day. And yet, at the end of the day I was utterly exhausted, with nausea, headache, the pain in my hip and legs increasing, a pain in my chest, and, then I fell asleep in the early evening.

This morning I woke with the classic symptoms that follow such exercise intolerance; sore throat, snuffly and achy, just as if I was coming down with flu. My hip is crying out in pain. My legs hurt. My neck feels broken – the pain is truly excruciating - and I can only manage to recline with my head and neck supported and immobilized.

It’s good that I prepared food, some of which will last the week, yesterday, but it’s at a rather a high cost. What I really need is more help to avoid these crashes.

136381874_oDomesticity is hardly my style anyway. My attitude to cleaning, for instance, coincides most closely with that of the late Quentin Crisp who said, “There is no need to do any housework at all. After the first four years the dirt doesn't get any worse.”

But I guess it has to be done, eventually (not today, that’s for sure) and the more so in a house with carpets. (I so miss the tiled floors in Tenerife that could be swept with a broom and wiped over with a mop, neither of which tools were too heavy to manage.)

Actually, after getting used to those for so many years, I rather feel that carpets are filthy, dirty things. They certainly cause me more allergy symptoms, either from the fibres and chemicals in them or the dust, dirt and hair that they harbour.

But, at the same time, I really can’t manage to man-handle a standard vacuum cleaner, so cleaning was getting “swept under the carpet”, so to speak.

However, recently, I came across this Gtech Cordless Carpet and Floor Sweeper and I thought I’d mention it here for anyone else who suffers from any form of disability or is elderly and finds the hoover a bit of a job to use these days, because this is light enough to manage – without causing pain or too much exhaustion - and is actually far more efficient at picking up cat hair than the “big hoover” ever was. A result.

Thursday, 10 February 2011

Service with a sullen

imageBugger me, what happened to service in this third-world shit-hole of a country?

I’ve been putting off going to the Post Office all week because I was too ill, even to get out of bed, but today it had to be done and I staggered round there in the rain. I wish I hadn’t bothered.

I had a small parcel to pay for and send and I had a letter, that was stamped for 1st class, but for which I required some sort of receipt.

I merely said that I would like a receipt as I passed over the letter.

The snotty, bitchy, sullen response I got barked back at me was:

You can’t have a receipt, because you haven’t paid any extra for it.”

WTF did she think I’d brought it to the Post Office counter for then?

How ‘effin difficult would it have been for her to say, “Certainly, you can have a receipt, that’ll be however much …” which I’d have gladly paid?

Friday, 4 February 2011

I’m sick of not being understood


Nuff said? Via: Bits and Pieces

Scarecity vs Abundance

People with an abundance mentality have an internal security based on a principled centered living. Their value system is self-anchored. They are not too worried of saying/doing the wrong thing because they ordinarily talk from a point of truth. This frees their mind to bigger/better thoughts because they have nothing to cover. What they said yesterday is what they will repeat today without contradiction. This internal security enhances their humility. It allows them to enjoy professional freedom. They can choose what they want to do. By contrast people with a scarcity mentality seek their validation from groups. They will rarely want to take action on their own. The group must validate what they do.

Read more …

Thursday, 3 February 2011

Severe heart and brain abnormalities in ME

This news video reports that there is now hard evidence that ME is a real illness. As Prof. Newton says, "The abnormalities we're finding couldn't possibly be faked."

Let’s hope that, finally, these facts will be universally accepted, putting an end to the cruelty, neglect and bullying we’ve been forced to endure for years.



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