Saturday, 31 October 2009

Patients' 'right' to private care

image "Patients in England will be guaranteed NHS treatment within 18 weeks, with the legal right to private care paid for by the state if that deadline is missed.", report the BBC.

OMFG! They have truly gone nuts this time.

It sounds excellent, of course, but I cannot, honestly, imagine a more worrying piece of news for the sick in this country, other than, perhaps the reintroduction of the workhouse.

On the surface, we're guaranteed not to have to wait for treatment - which is fine until you realise this is NOT done for your personal comfort, but just to get you back into the workforce. A.S.A.P. and, by any means. Just look at NHS food to understand their attitude to cost cutting.

And the Gestapo you have to deal with in order to prove you're ill and get benefits.

Now, suddenly, we're promised all that super-duper royal treatment in private hospitals ...

No, really? Do they honestly think we're that daft as to fall for it? 

See where they say, "this will give greater incentive to those within the NHS to deliver on their responsibilities". That's mumbo-jumbo speak for there will be ever more impossibly stringent targets that medical staff have to meet. This is not a carrot for patients: it's a bloody great stick for doctors, whose very jobs will depend on treating unsuspecting patients within the time limits, so as to avoid those extra costs. Even if that means measures like bringing in the dubiously qualified to deal with backlogs and treating us no better than cattle on a milking conveyor belt.

"Patient power" my arse! It's all spin; all image and no substance. And typical.

Today's pain menu

imageLaying awake this morning (hungry cats staring at me earnestly), for ages I couldn't move because my limbs felt as if they were made of lead, however, if you're looking for pain in any of the following areas, I haz dem:

  1. Head - that sort of feverish fluey headache.
  2. Sore throat.
  3. Neck - still, again, ad nauseum.
  4. Shoulder - joints stiff, achy and clunky.
  5. Upper arms - burning ache and heaviness.
  6. Lower arms and wrists - carpal tunnel.
  7. Hands - stabbing pain in palms like crucifixion.
  8. Upper back beneath shoulder blades - dull ache.
  9. Lower back - just excruciating pain.
  10. Both hip joints - gnawing pain like toothache. The right is the one I fell on 8 1/2 years ago. Pain in the left is a new development.
  11. Thigh muscles - cold, contracted, solid and yet burning.
  12. Knees - tear-inducingly painful and more so to put weight on.
  13. Shins - feel like they've been bruised and beaten with a baseball bat.
  14. Ankles - clunking, sore, achy joints.
  15. Feet - all manner of aches, pains, sores and burning.

Let me reiterate that this was the selection of symptoms I could already feel when I woke up and was still lying in my comfortable bed (thanks to this natural latex mattress.) I hadn't even had the chance to get up and hurt myself and, this general selection is nothing at all unusual.

When I do get up, I feel fluey, weak, lightheaded and my legs start to give way, so for most of the day, yet again (as in 6 days out of 7), I could do no more than an impression of the dog pictured!

Interesting aside: When my mother was waiting at her outpatients appointment the other day, she said she sat next to a man who was going "Oh and ah" in pain. The nurses, you know medically trained professionals, she said, had asked him if he was alright - they could obviously see for themselves that he was in pain - and asked him if he wanted any painkillers.

He declined the drugs, saying that, mostly, they didn't work.

Whenever I've been to any of the many hospital appointments recently, even when I don't notice it myself, doctors, nurses, radiologists, etc., alike all notice that I am breathless and showing visible signs of being in pain. They always ask me if I'm OK and if I need anything too. Mostly this takes me by surprise and I just tell them I have fibromyalgia and ME and that it's "normal" for me.

This man had fibromyalgia too. So mother asks him, "Where does it hurt?"

And (unsurprisingly) his reply was, "Tell me where it doesn't hurt!"

I keep stressing this to her: fibromyalgia hurts anywhere and everywhere.

And that it is possible to tell when someone is in pain.

And that drugs do not kill fibromyalgia pain.

It's like beating my head against a brick wall, because she seems to understand the words, but has no concept of their meaning and implications. Learning what fibromyalgia is and knowing that I have it, provokes no reaction. It's like, "the lights are on, but nobody's home."

(No, she isn't stupid, she totally lacks empathy and is far too engrossed in herself. And yes, my critics will be foaming at the mouth now. The difference is, she just says what she thinks about me. I can back my comments up with solid research, written evidence and witnesses.)

The doctors apparently want this man to lose weight. They do this to me too. First fact, the ONLY reason I have put on this much weight (it's been many years since I was able to do an impression of a stick insect, if I ever did and the fibromyalgia itself caused some increase, but not all) in the first place is because the first thing I was prescribed was 'effin Amitriptyline (for every one person this has helped, I've read 1000 reports of people who would rather die than take it.)

One of the known side-effects for this drug is excessive weight gain.

But it's cheap, so the NHS pops it out like Smarties.

Then they bitch at us about getting exercise and losing weight - when you can hardly move, let alone exercise and with ME/CFS too, shouldn't do so. I know there's no cure, but you'd think there was something they could offer us (other than pseudo-psychology) and this broken record!

Friday, 30 October 2009

I'm Not Overweight, I'm Undertall

What's a healthy weight for me?

Your weight range is 113 to 141 pounds.

But it's 176 lbs (80 kilos / 12.5 stone, a.k.a. obese.) This would, of course, be OK if I were 5 ft 11 in tall, so, since losing weight doesn't seem to be working, I need to find someone who can stretch me by about 8 inches. 

I'm Not Overweight, I'm Undertall

A right royal pain in the neck


One of the many, many reasons I had to give up driving a few years ago was the pain and loss of movement in my neck (this was also noted and confirmed by my Rheumatologist.) For one thing, I could no longer look over my shoulder for merging into traffic. Secondly, if I tried to do so, the pain and spasms were too much to bear and could easily have caused me to lose control of the vehicle and cause an accident.

This is something that's been affecting me, to some degree, for years, since I suffered a whiplash injury in a head-on collision in the 80s (I was only a passenger), but like all my other symptoms has grown with the fibromyalgia and, has worsened several-fold since I've been forced to put up with conditions in the UK. For a while this year, I had it under some control, but coinciding roughly with the onset of autumn this month, the pain came back again with a vengeance.

Apart from the restricted movement and the pain - movement itself is painful - the worst of it is a horrible bone-on-bone grinding noise in my cervical vertebra whenever I move my head. 

What started it off again was something so seemingly innocuous too: I went to the monthly self-help meeting of our local pain group (ironically). Previously, we've sat around a circular table, so one can see and interact with most of the people quite easily. This time, a long rectangular arrangement had been set out using two tables and so, to talk to people to my left and right, required a good degree of movement. I was only there for an hour or so and, I was careful to move my whole torso and not just my neck as often as I could, but the damage was done.

imageThere was about a week or so before my next outing (this time to the gynaecologist), so I set to work to try to relieve it as best I could. I have special neck pillows, a TENS machine (which I'll be laying off for a while), specific exercises I learned at pilates class, relaxation techniques and a Neck Warmer Wrap Lavender Fleece Wheat Bag Heat Pack. (Which is great, but only affords temporary relief.)

The pain had just subsided enough to get below the category of *excruciating* the day before I was due to go out again and, taking the bus rather than walk the mile + to the station, the second the bus moved, I heard the "crack" in my neck and was in agony again. A week later I had to go back to the same hospital (same floor too and no, they couldn't do it on the same day) and the day before, I'd merely leaned on the kitchen work surface (because I was having trouble standing unaided) and looked up everso slightly. Bang, crack, agony in my neck once more, not helped by outing. Now the pain seems to have taken up (probably winter) residence.

Unrecognised ramblings

image Since I was feeling pretty crap yesterday (understatement), but wanted to make a note of what had happened - if only because I shall need to recount it all to my GP in case there is a problem with my heart and to talk to them about how I get urgent help if I should need it - I thought I'd give Windows Vista Speech Recognition another try.

Because of the terrible pain I've been getting, specifically in my wrists, but also in my neck, shoulders and back and, difficulty sitting up for any length of time anyway in the last year or so, I'd had a couple of goes at this tool before, but I just can't get on with it.

For a start, brain fog is preventing me from memorizing the list of commands. If I try to get it to control the computer, it generally runs amok. In any case, talking at it - constantly repeating the word "cancel" - makes me cough, gives me a sore throat and generally drives me barmy.

Yesterday, I tried to get it to take dictation. I don't think it gets my accent either:

For "TENS machine" it typed "tries to eat the machine."

Anyone got any tips for taming it?

Return of the chest pains

Whether this was exacerbated by the other day's increase in brain fog and this is part of the crash I was suspecting might occur, I don't know, but on Wednesday night, after not having used it for some time, I used my TENS machine as I'd been having a lot of extra pain and stiffness in my neck and shoulders over the last couple of weeks (another long story for later).

On a few occasions before, I've had chest pains after using the TENS machine, but when one gets chest pains regularly and they're part of the fibromyalgia anyway and are only one of far too many other aches and pains to count, one never quite knows what is causing them, or whether to worry. Instinctively, I probably should.

Immediately after using the machine I felt a tightness in my chest. Shortly after that I went to sleep, but yesterday morning I woke up with notable tightness around my chest, pain and numbness down my left arm and a feeling like I'd been kicked and winded in the centre of my back between my shoulder blades. My throat and chest tightened more if I tried to take a deep breath.

Nevertheless, I dragged my sorry fat arse out of bed to feed the hungry cats then get my own breakfast. I'd got as far as getting myself water for taking medication, had warmed up my wheat bag in the microwave to hopefully help with the neck and shoulder pain and made my coffee, so I took the drinks to the bedroom while my porridge was cooking in the microwave.

On the way back to the kitchen, I was waylaid by the furball formerly known as "the baby who refuses to be put down", weaving in front of me and shaking his ample butt and tail in my direction, whilst looking up at me with sad eyes and crying plaintively. So I picked him up and snuggled him, turning on the baby talk - this quickly embarrasses him into shutting up - put him down, made my way back to the kitchen (this is all of a few paces): in all, hardly major exertions.

On my way up the kitchen towards the microwave, I grabbed a spoon from the draw with which to eat my boring breakfast gruel, but I only got half way there when I suddenly felt as if I'd been kicked by a mule in the solar plexus - so severely that my legs involuntarily buckled and twisted beneath me. It completely winded me and the pain around my chest increased 1000-fold. I grabbed hold of the work surface and slid myself down onto the floor to sit with my back against the wall.

There was also the incident with the nicotine patches when I gave up smoking 2 years ago and yesterday morning's episode was startlingly similar. So repeating myself based on my qualification as a first-aider, "... I put myself in the recommended half-sitting position with knees bent, tried not to panic and eventually the pain and constriction subsided and breathing became easier."

And yes, once again, it was bloody scary for a while there.

But that's not the end of the story ...

So, there I am, writhing on the kitchen floor - not something I do frequently, just for "fun" - trying to regain control of my basic functions, clearly having trouble breathing. I'm certain any reasonably compus-mentis person would have assumed from my appearance that I was in severe pain and in need of help. I couldn't even speak. Once I could speak, it was in breathless panting.

Meanwhile, mother was waiting for her lift to take her to a hospital outpatients checkup. She was hovering around the kitchen door, so there's a chance she saw the whole incident, but she could certainly see me in trouble on the floor. All I could hear, while I'm down there thinking there's a chance I could die here, was "I hope this woman [the lift] hasn't forgotten me."

Ignoring me, mother went outside to look, came back in, then she thought / worried other things out loud, then she called the woman up to see if she was coming, then she announces she doesn't know what she was going to do. Still completely failing to acknowledge my predicament - I couldn't see her, but I knew she was approaching the kitchen - she asks, "What am I going to do?"

By this time, I could, just, wheeze out a few words. I told her she would have to call herself a taxi.
Well, actually, first I told her not to worry, because I might need an ambulance first, then I told her to get the 'kin taxi and get out of my sight, because I really could not believe that she was wittering on about her own non-urgent needs while I was laying on the floor in trouble.

Know what she said? In whining tone, "Well, I can't lift you. I can't do anything."

So the first is true. The second NEVER is and, even if it were, deciding to ignore the problem and pretend it isn't there, definitely is not the answer. Not if you're sane human anyway.

And this is, by no means, an isolated incident.

By that time I could feel my heart pounding in my chest like it was hammering on my sternum to be let out. Involuntarily, I pushed my hand against my chest to *hold* it in. Even without my hand there, I could feel my pulse thudding up through my esophagus, throat, neck and left arm, but I wasn't really sure what was causing it most; the original problem, or utter rage that my own mother could so totally, seemingly knowingly and willfully, absolutely fail to react in any way to a genuine emergency. If I hadn't been there myself, I really would not have believed this had happened.

(And, no doubt there will be people who still don't believe me and will probably try to bully me into silence again because they think I shouldn't tell the truth publicly. They will be the same ones who do believe my mother portraying herself as the "victim". They don't know the half.)

Mother got her taxi, I stayed down until I got my breath back, then I crawled to bed and stayed there most of the day. I did my best to switch my brain off and relax and even managed to sleep on and off, but the pounding pulse didn't subside until evening. Mother got me some water, only because I asked, but otherwise left me (without food) all day. I still had to do most of the work to cook dinner later, even though I could bearly stand up. The severity of the chest pains has subsided now, but they return to some degree every time I get up today. I feel like I've done 10 rounds with Ali, been kicked and punched all over and feel absolutely washed out with zero energy.

It used to concern me a bit about having such an emergency when I lived on my own out in the wilds of Tenerife, but clearly, those circumstances did not increase the danger at all and, as usual, by the time I would have been capable of getting to a phone to get help myself, the emergency didn't seem so pressing, but I shall bring all of this up with my doctors at the next visit.

Factors: viral heart damage could be linked to me/cfs. Warnings: "Before you use any brand of nicotine patch, make sure your doctor knows if you have, or have ever had, any of the following: chest pain from a heart condition (angina); diabetes requiring insulin injections; heart attack; high blood pressure (severe); irregular heartbeat (arrhythmia); kidney disease; liver disease; overactive thyroid; skin disease; ulcers; or any other serious illness." (And more). In addition, although TENS machines are supposedly virtually side-effect free, they should not be used by people with "... certain types of heart disease." Given all of those, one has to wonder.

Annette Whittemore's CFSAC Testimony

Via: ME/CFS Warrior

Wednesday, 28 October 2009

Another foggy day


You know, with fibromyalgia, some days the pain is the worst symptom, other days it's the fatigue and on yet others, it's the fogginess.

Each and every one on it's own is enough to hamper functioning as a human being and I really couldn't say which is the worst, but the fog certainly gets top marks for frustration.

All day today, I've found myself - more than usual - going to another room and forgetting why I was there. I've had real problems concentrating on anything. And despite knowing I'm doing this, I've been unable to shake it.

Worse yet, I'll be doing something in one tab of the browser, switch tabs and wonder WFT I went there for! I'll be doing something like saving a link and a nano-second later, I can't remember if I have saved it yet or not. I'll think of the next thing I want to do, click through to my bookmarks or startpage or wherever from where I can access it directly (and do so regularly) and, once again, in the split second it took me to click there, have forgotten what the hell I wanted to do!

The sheer frustration of having to backtrack and search the brain cells for such simple information, so frequently, is so hard to describe. Wanting to do something that should be super easy, but not being able to will myself forward towards achieving it is immense.

Yet I'm doing most of what's recommended on this list already - or at least all that I can.

What worries me is that when I've had frustrating bouts like this before, just as overdoing physical exercise does not gradually increase tolerance but causes me to hit the brick wall earlier and harder, so trying to think beyond the fog's limited visibility tends to cause a brain crash, where thinking ceases up. I hope this does not imply an impending bad crash / relapse.

Foggy Day Horses Wallpapers

Wind breakers


Of course, I've forgotten what / where it was now but I read / watched something not long ago that claimed pigs fart 50 times per day.

Now whether it's the accountant in me, or a more worrying mental affliction, but the calculation ran through my head that if said pig were awake for 12.5 hours per day (conservatively), then that's 4 times per hour, or in other words, roughly once every 15 minutes.

That doesn't sound so improbable really, does it?

What I was also absolutely certain of, given that long interval - with the serious amount of gas and bloating I suffer with IBS - is that I could out-fart yer average pig any day of the week. :)

And yet, for all his letting rip, ol' piggy there only emits a mere 1.5 kg of methane per year, compared to the stunning total of 120 kg coming from your average western cow.

And I always wondered why I felt right at home at those animal fair fiestas in Tenerife.

Saturday, 24 October 2009

Feed the Birds Day

image The RSPB's Feed the Birds Day, across the UK over the weekend of 24-25 October, reminds us about all the things we can do to help birds and other garden wildlife through the winter.

Feed the Birds Day

Tuesday, 20 October 2009

Turmeric Capsules


Given the choice, I would much rather find  natural remedies that may be able to help my symptoms, instead of loading myself up with yet more chemical drugs. To this end, I have been researching and trying various things lately, among them turmeric. If you read the various claims online, you'd believe that this spice is the magic cure for all ills. In particular turmeric has been implicated in relieving muscular pain in fibromyalgia (in my experience, it doesn't) and in treating the symptoms of Irritable Bowel Syndrome, where I have found it helpful in reducing (not curing, sadly) abdominal pain, bloating and flatulence.

Most people who feel at home in the kitchen with the assorted spices from around the world know perfectly well what turmeric is. They know how constructive it is when assembling a curry recipe and of its widespread use in Indian cuisine. If you are not so familiar with it please let me introduce you to turmeric at this time.

Turmeric is a yellow color spice which is predominantly used in the creation of curry and mustard recipes. It is widely employed within the Indian Ayurvedic medicine for use as a cleansing tonic. Those areas of India that consist of diets high in Turmeric use appear to have significantly reduced incidents of breast cancer, lung cancer, prostate cancer and colon cancer. This close relative of ginger root is considered to be an effective agent towards dispelling arthritis and its associated inflammation. All this new research and interest in this herb is providing some very interesting scientific data to herb's already vast storehouse of health benefits.

In Houston at the Andrews Cancer Center turmeric was recently cited in a released report which stated that it was instrumental in stopping the metastasis associated with breast cancer progression, benefits relating to ones lungs and finally those progressive improvements found within the lymph nodes. The herbal doctor and writer Andrew Weil has stated that those people whose diet is extremely rich in the use of turmeric generally have the lower rate found of breast, prostate, colon and lung cancers. He further states that the herbal remedy is an excellent product for any inflammatory disorder and improves one immune system greatly. He is a firm believer that there are potential benefits for those patients who are currently suffering from Alzheimer's.

Curcumin which is the active ingredient of turmeric has been proclaimed by researchers in Japan as a wide spectrum anticancer agent. They insinuate that the herbs ability to produce detoxifying enzymes seems to indicate its possible value as a protection generating agent against any sort of chemical carcinogenesis. One can easily realize and appreciate the significance of these particular results.

If you are considering the use of turmeric capsules as a health additive there are several hints that you should follow closely. You will want to ensure that you are obtaining a pure turmeric capsule. You don't want one which is plastered with fillers or unnecessary additives. You want one that is merely pure and quality tested. In the event that you are of the Jewish faith you can readily find some of the capsules that are certified as Kosher as well as those which are created from organically grown herbs.

Within a short time of taking these capsules you will experience many healthful changes occurring within your system. The capsules are geared towards people who may be suffering from diverse diseases and conditions such as arthritis, pain associated with Alzheimer's disease, inflammation or rheumatoid arthritis, as well as several forms of cancer. This list could go on and on as we recount such benefits as liver protection or bile stimulation within the human body. Various digestion difficulties are also addressed by this herb such as intestinal gas reduction and gallbladder simulation. It is truly a beneficial herb al capsule that will improve your overall health tremendously.

Copyright @ 2009 Joseph Parish

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Monday, 19 October 2009

What is Fibro Fog?

image While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening.

Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. While research on fibro fog is scarce, experts agree that it is not the result of Alzheimer’s disease, dementia, or other brain function deterioration condition. Of utmost importance is recognizing that fibro fog can be managed and with the reduction of fibromyalgia’s other symptoms, the cloud of fibro fog will also fade away.

Symptoms of Fibro Fog

Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including:

· Mental confusion
· Fuzzy thinking
· Short-term memory loss
· Inability to concentrate or pay attention
· Language lapses

Fibro Fog Causes

The same lack of information as to fibromyalgia’s origin also surrounds fibro fog. While a variety of causes have been proposed, including depression, decreased oxygen flow to the brain, certain medications, poor nutrition, and changes to the Central Nervous System (CNS), most experts agree that sleep deprivation is the primary culprit of fibro fog.

Occurring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person’s mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.

Physical Link

Temporal lobe brain abnormalities appear to mimic the presentation of fibro fog.

According to Dr. Jay Seastrunk, a psychiatrist specializing in fibromyalgia, if the temporal lobes are mismatched, there will be trouble with memory, recall and concentration. “Cognitive dysfunction is a right temporal lobe phenomena. Multiple mood swings, trouble sleeping are all temporal lobe abnormalities. Temporal lobe is responsible for understanding what we hear, retrieving and restoring our memories even though the patient may feel they have difficulty with their memory. The problem is actually the retrieval of this information. Not being able to find the word or you forget what you are going to do, or blocking, is a left temporal lobe phenomena.”

Dr. Muhammad B. Yunus, a leading chronic fatigue syndrome and fibromyalgia researcher, suggests that SPECT (single photon emission computerized tomography), PET (positron emission tomography) and BEAM (brain electrical activity mapping) scans of the brain demonstrate that fibro fog is a physical anomaly. According to Dr. Yunus, “Cerebral blood flow imaging by SPECT, PET and BEAM have been reported to be abnormal in a large majority of patients with CFS (Chronic Fatigue Syndrome), showing a pattern different from normal controls and those with depression. Results of SPECT, PET or BEAM studies specifically in fibromyalgia have not been reported, but a good number of patients with CFS who had these tests carried out with abnormal results also had fibromyalgia.”

When considering both Dr. Seastrunk and Dr. Yunus’ contributions, it is clear that fibro fog is represented by physically visible brain variances.

Managing fibro fog

Since fibro fog is believed to be directly related to non-restorative sleep, putting all of one’s resources into getting good, quality sleep is crucial. In addition to seeking professional assistance (and possible physician-prescribed sleep medications), the following suggestions may be conducive to getting a quality night’s sleep:

· Adhering to a regular sleep routine – going to sleep and waking at the same time each day
· Providing a relaxing atmosphere prior to and during sleep
· Limiting caffeine and food consumption near bedtime
· Listening to white noise prior to and during sleep
· Sleeping on a high quality mattress
· For pain reduction, using pillows in bed to cushion any sore spots
· Using natural sleep aids (always consult your physician)

In addition to focusing on getting restorative sleep, The Arthritis Foundation® shares nine tips to minimize fibro fog’s impact during the day:

1. Repeat yourself. Repeat things to yourself over and over again. Repetition will keep thoughts fresh in your mind.

2. Write it down. Whether you write in a calendar, in a notebook or on sticky notes, if you’re afraid you won’t remember something, putting pen to paper can help.

3. Pick your best time. If there is something you need to do that requires concentration and memory, such as balancing your checkbook or following a recipe, pick your best time to do it. Many people with fibromyalgia say they perform best early in the day.

4. Get treated. Depression, pain and sleep deprivation can influence your ability to concentrate and remember. Getting your medical problems treated may indirectly help your memory.

5. Engage yourself. Reading a book, seeing a play, or working a complex crossword or jigsaw puzzle can stimulate your brain and your memory.

6. Stay active. Physical activity, in moderation, can increase your energy and help lift your fibro fog. Speak to your doctor or physical therapist about an exercise program that is right for you.

7. Explain yourself. Explain your memory difficulties to family members and close friends. Memory problems often result from stress. Getting a little understanding from the ones you love may help.

8. Keep it quiet. A radio blasting from the next room, a TV competing for your attention, or background conversation can distract your attention from the task at hand. If possible, move to a quiet place and minimize distractions when you are trying to remember.

9. Go slowly. Sometimes memory problems can result from trying to do too much in too short a period of time. Break up tasks, and don’t take on more than you can handle at once. Stress and fatigue will only make the situation worse.

Fibro Fog Hope

As one of fibromyalgia’s most frustrating components, there is hope for fibro fog sufferers. Understanding the following about fibro fog will allay many accompanying fears:

· You are not alone in suffering with fibro fog
· Fibro fog is not a psychological condition
· Fibro fog is likely a result of non-restorative sleep disturbances
· Improving sleep can reduce fibro fog
· There are many ways to reduce fibro fog’s prominence in your life

The best news of all is that many individuals report that being committed to managing their fibromyalgia (by integrating western medicine, alternative medicine and lifestyle changes), has resulted in their fibro fog fading away.


Yunus, MD, Muhammad B., Chronic Fatigue Syndrome and Fibromyalgia Syndrome: Similarities and Differences, University of Illinois College of Medicine at Peoria, Peoria, Illinois., Clearing the Fog, Arthritis Foundation, 2006., Fibromyalgia and Brain Fog or Fibro,, 2006., Clearing the Brain-Fog of Fibromyalgia, The Pain Reliever Corporation, 2006., Neurological Effects of FM and CFS., What is Brainfog and how significant is it?, Marilyn J. Kerr, RN, 2001., Fibromyalgia: Fighting Fibro-Fog, Tamara Peters.

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Sunday, 18 October 2009

The 7 Menopausal Dwarfs

ROFLMAO! Oh boy, do I know these women well! Of course I never know whether it's climate change or the change of life, fibromyalgia or the wind direction  causing my symptoms, but tick all of the above.
Itchy? A flea-bitten moggy scratches less that I do and as for sweaty (also being enhanced by the medication), I like being too hot better than being too cold, but there's a limit, which is definitely exceeded when I'm drowning in a river of sweat despite having stripped down to a strappy top, outdoors, in October, in the UK.
If I go anywhere now, I get so hot that by the time I get home, I have to peel my soggy clothes off and dash for the shower ... and I'm glad of the sweat, because without, I'd worry I might spontaneously combust.
At the moment, these symptoms - especially the hot flushes - are making me feel so ill that travelling anywhere is becoming more and more difficult and unpleasant. I truly don't like going anywhere on my own any more, because, as soon as I do, I get hot flushes and along with them extreme nausea, lightheadedness, dizziness and general spaced-outiness.
On Thursday afternoon, I was coming home from the hospital in Southampton on the train and in near panic - because I honestly didn't know if I was going to make it without either being sick or passing out - was desperately clawing through my travelling pharmacy (a.k.a. backpack) for sea sickness bands, wet wipes, Migrastick and whatever, to try to calm it all and hang on.
The nice gynaecologist I saw at the hospital asked me a slew of questions about menopause symptoms too. On the one hand, I was glad someone cared enough to ask. On the other, as the first question he asked me was my age, it thought it a bit indelicate to sort of take it for granted.
Then again, he could hardly miss Bloaty, Bitchy and Psycho coming his way, I guess! :-)
Sleepy nodded off, involuntarily, no less than three times yesterday, but then that could be the menopause, the fibromyalgia, the CFS, or any number of other reasons.
They could have called Forgetful, Foggy! We [sometimes] remember her, don't we?
Still, if these symptoms do have anything to do with the menopause too, at least there's hope that they might diminish a bit in future. And the sooner, the better. Please.

Wednesday, 14 October 2009

Some relief for eye irritation

image Amongst the worst of the 1001 symptoms I have to put up with on a daily basis are those relating to my eyes - I think for obvious reasons as sight is so precious.

My eyesight has been changing rapidly and dramatically over the last few years - I'm sure some of that is to do with age - and my prescription for glasses along with it, that I can no longer justify the cost of having it filled.

Currently I'm making do with the cheap reading glasses that can be found all over the high street (which leads me to believe that many people do this in the UK) as in only the last year, I've needed to upgrade from 2x to 3x magnification - which is one of the highest. This is not really the ideal solution, but it's an economic necessity. When the 3x magnification is no longer strong enough, then I shall be well and truly in the proverbial brown and sticky stuff.

At my last eye test here in the UK (at least that was free), glaucoma was ruled out, but I failed the peripheral vision test miserably. My night vision went completely AWOL years ago.

Now I technically need (I don't have) glasses for distance too. TV has become mostly just a moving blur (which I'd say renders it fairly pointless, except I think most of it's fairly pointless anyway) and I would not be able to drive without correction (I don't drive for many, many other reasons.)

In addition to this, however, some days everything remains blurred, even with glasses.

Now I can only read for a certain length of time - which varies daily from a few minutes to a few hours, though the latter is rare - and then only if the light is right. I find reading on screen a lot easier than reading a book. In fact, I've only read three books in the last 15 years because I find it so difficult to find the right light, print size, wind direction, "R" in the month, etc. And, in any case, I find it generally too painful to hold a book for long enough, because of wrist pain.

Then there are the days when any light or moving things (even a scrolling screen) makes me dizzy and nauseous. If that gets as far as a full-blown migraine headache, then I can only lie flat in a darkened, quiet room until it subsides - which can take days.

Other times, I can manage to listen to music or the TV, as long as my eyes are closed.

And on top of this, I often wake up with gritty eyes and my eyes often feel dry and burning - this is made worse by "overwork" (which can mean as little as 15 minutes) - and at some point in every single day (all day, if things are bad), I suffer such pain and discomfort in my eyes that I constantly, involuntarily blink and squint in response to the sensation of a "foreign body" in either or both.

Sufficient quantity and quality of restful sleep - you know how rare that is for us - is probably the best antidote to these symptoms and, wearing sunglasses, avoiding bright light, taking breaks from computer and TV screens ... all help to mitigate their length and severity.

Previously, eye drops made no real improvement to the gritty, dry, painful part of the problem, however, I am pleased to report that these new, thicker consistency Dry & Tired Eyes Lubricant drops from Murine do offer temporary relief. They are available from

Tuesday, 13 October 2009

Chronic Fatigue Syndrome Disability Scale

This is an adaptation of the National Health Service Disability Scale, of which is used throughout the medical profession. You may have seen this scale ‘the other way around’ with 0% referring to severe symptoms, and 100% as fit and well. However this scale is shown in Living with M.E.: The Chronic, Post-viral Fatigue Syndrome By Dr. Charles Shepherd ISBN: 0091816793.

No symptoms at rest or following activity. Capable of full-time employment.
No symptoms at rest. Occasionally mild symptoms may follow activity. Capable of most forms of full-time employment.
More noticeable symptoms following activity. Some restriction of capabilities which require physical exertion. Able to work full-time but difficulty with work that requires physical exertion.
Limited ability to carry out some tasks which require physical exertion. May be able to work full-time.
Variable ability to carry out tasks associated with normal daily activity. Unable to work part-time in a job involving frequent physical exertion. May be able to work part-time in other types of employment.
Moderate to more severe exacerbation of symptoms following physical and/ or mental exertion. Unable to carry out any strenuous physical tasks. Able to perform light duties or deskwork for several hours a day provided adequate rest periods are provided.
Moderate to severe symptoms following any form of physical or mental exertion. Unable to carry out any strenuous duties. Able to carry out light duties/ deskwork for one to three hours per day. Generally not confined to the house.
Severe symptoms follow any physical or mental activity. Able to perform deskwork or light duties for one or two hours during the day. Often confined to the house and may require wheelchair assistance at times.
May only be able to carry out a very minimal range of physical activities relating to personal care (e.g. washing, bathing). Frequently unable to leave the house and may even be confined to wheelchair or bed for much of the day. Unable to concentrate more than short periods of time.
Bedridden and housebound for much of the time. Experiences considerable difficulties with many aspects of personal care. Marked problems with mental function (e.g. memory, concentration). Requires a great deal of practical support.
Bedridden and incapable of living independently. Requires a great deal of practical social support.

Chronic Fatigue Syndrome Disability Scale
[ Source: M.E. Support ]

Top Antiviral Herbs

imageWhether we are heading into a new school year or into the cold & flu season or right smack in the middle of the holiday season, the question of preventing & treating viruses naturally becomes an important issue.

It would be nice if we could start to lessen the chances of contracting these nasty viruses. Luckily, using natural herbs that are easy to incorporate into our diets is an effective way to dodge or treat the common viruses.

Other added benefits to using natural antiviral herbs: no side effects, low cost, safe for children & elderly.

Before getting into specific anti viral herbal remedies, a few words on viruses.
Viruses are infinitesimally small particles that do nothing more than reproduce.
They are the agents that lead to all kinds of health problems including cold, flu & herpes.
Viruses are different from bacteria though the two can be confused by the general public. Medicine has antibiotics which can be effective against bacteria but not against viruses.

However, there are few medications that deal with viruses. Two of the popular ones are acyclovir for herpes & AZT for AIDS. Luckily, there are many good antiviral herbs. The rest of this page discusses anti viral herbs that have general effects against any number of viruses.

Best natural antiviral herbal remedies

* Echinacea may be the best general herbal remedy against viruses. Echinacea works by destroying viruses & boosting the immune system so that your own body can then eliminate the virus. Especially good for flu viruses. Take supplements as directed, especially right before flu & cold season. Take in cycles of 6 weeks on & 6 weeks off as needed.

* Hypoxis Rooper (African Potato) improves the immune system according to research.

* Astragalus is also one of the valuable antiviral herbs due to its ability to boost the immune system. Take as directed when needed.

* Agathosma Betulina (buchu) is a natural antiviral that has antioxidant & antiseptic activity & helps the body rid itself of toxins. Good as a preventive.

* Mentha peperita better known as peppermint supports the body’s immune system. Scientific studies show peppermint’s is one of the anti viral herbs that shows a good effect on tuberculosis. Using peppermint essential oil or drinking lots of peppermint tea are pleasant, economical ways of using peppermint.

* Dragon’s blood is a lesser known herbal remedy for viruses. Especially useful against herpes virus. May be available in pill form. Take as directed.

* Solidago Virgaurea (Goldenrod) is one of the traditional antiviral herbs, used for hundreds of years. It seems to increase the ability of the body to fight infections.

* What could you say about garlic, an herb that has so many beneficial effects that it is treated with a reverence by many peoples of the world. Most people find garlic to be delicious too. This natural antiviral can be used for flu, cold & any number of viruses. Consume it raw or lightly cooked in any number of dishes including salads, stir frys, soups etc. Take supplements as directed making sure that supplement has active ingredients.

* Onions are also an anti viral herb though not as effective as garlic. Certainly you could come up with many dishes that contain garlic & onion which go together very well.

* Schizandra Sinesis is a powerful Chinese herb, an herbal remedy against viruses that protects against toxins and cell damage.

* Goldenseal is also an immune stimulant. Many supplements pair goldenseal with with other antiviral herbs like echinacea for a 1 - 2 punch against viruses.

* Olea Europea (from olive leaf) is a very valuable herb & natural antiviral. It helps fight numerous germs. The positive effects of Olive leaf have recently been proven in a variety of clinical studies. Olive leaf also stimulates the immune system. It may also help stop the production of enzymes that a retrovirus, such as HIV, needs in order to change the RNA of a healthy cell. I’ve used it in place of root canal surgery to good effect. Take supplements as directed but you may need to double or triple dose the first day you are symptomatic.

* Juniper is also an excellent anti viral herbal remedy, excellent against flu & cold virus. Makes a good cold season tea that could be sipped throughout the day.

* Lemon balm also makes a good anti viral herbal tea & is especially valued as anti-herpes.

* Licorice is yet another herb that makes an excellent tea. Effective anti viral herb against many viruses. Take supplement or make a tea out of licorice root.

* Shiitake mushroom is also one of our favorite antiviral herbs. Consume in various dishes or use supplements as directed.

* Ginger, like garlic is a superb herb with numerous health benefits including its natural antiviral effects. Use as a tea or in numerous dishes. Juice a small slice along with fruits like apples, carrots, celery, [parsley - to taste for a wonderfully healthy concoction.

Other natural anti viral herbs

Some other herbal remedies against viruses are not as well known for that purpose but have been cited as antiviral. They include:

* Boneset

* Cat’s claw

* Chamomile

* Cinnamon

* Ginseng

* St. John’s wort

Salvator Giustra is a NYC Teaching Fellow, health researcher, clinical psychotherapist & computer scientist. He currently runs three websites (Healthy World) that advance the idea that good health is based on simple, traditional, commonsense knowledge which research tends to support repeatedly. For info on how water affects health, visit: Healthy Water For info on using herbal remedies, visit: Article Source:

Once and for all ME/CFS is not a psychological illness

Q: Does this latest information prove once and for all that ME/CFS is not a psychological or psychosomatic illness as described by those who don’t understand the disease?

A: Absolutely! Actually, there are thousands of research articles showing the very real biological problems that ME/CFS patient’s experience such as low NK cell count and function, MRI and SPEC scan changes, and repeated chronic infections, to mention just a few. Only the most stubborn and misinformed individuals refuse to believe that this disease is real and serious.

Read more in the XMRV Q & A on The Whittemore Peterson Institute website here ...

(My emphasis added - for the benefit of the stubborn and misinformed individuals who I know lurk around misinterpreting the words on my blog, as well as much of what they're told.)

Tuesday, 6 October 2009

Contributory factors

It has always been my opinion that chemical and similar exposures such as this have contributed to my situation too. On top of a landlord on the south of Tenerife who once sprayed acid under my door and all over my car (it lifted the paint) - oh, this is the "normal" way for landlords to behave when they want to evict tenants for no other reason than they want to charge someone else more money (ask the police - they hear it frequently) and then being seriously ill for days after being poisoned by chemicals sprayed on a banana plantation where I lived subsequently ... already too ill to work, I moved to cheap accommodation in the hills that had, amongst other serious defects, mould like this.

For over 9 years, I slept with this - it was the wall behind my bed. Is it any wonder I'm ill?

Woman exposed to toxic mold develops Multiple Chemical Sensitivity

Autumnal snuffles ...

image This morning I woke up coughing, snuffling, sneezing and full of catarrh. I ache (more than usual) everywhere, but particularly in my neck and shoulders, upper arms, forearms and wrists, lower back ... My thigh muscles are icy and in spasm as though "frozen solid" (as they always do in winter) and today's totally new symptom was a sharp shooting pain at the top of my lower legs, which gave way (lost power) when I walked to the kitchen.

On top of all that, I'm alternating between sweating hot flush and feverish shivering, my eyes are full of granulated muck and occasionally, I have waves of strange malaise: a sort of lightheaded feverishness with nausea, when the room spins even if I'm lying down, just as if I were drunk.

I've only been awake for 2 hours and already I'm beginning to have trouble remaining upright. Well, for upright, read reclining on the bed supported by a cushion mountain, but my back and neck have had enuff already and feel as if they can no longer support me.

The weather outside is being damp and autumnally cool, which I suspect is the reason for this sudden increase in my symptoms. It's either that or swine flu, I guess.

What would you do?

Sunday, 4 October 2009

A Spoonful Of Sugar

image Seems the experts (via the Jobbing Doctor) agree with what I felt were the rather predictable findings of my "one woman trial" on the ineffectiveness of yoghurts that contain probiotics, noting that for the Jobbing Doctor (as was my opinion), "these products are merely sugary Yoghurt."

Despite being pretty cynical about the possibilities, I had, in all fairness, tried these because of reports that they may be beneficial to those of us with Chronic Fatigue Syndrome.

The idea makes some sense and I'm used to probiotics (sold in chemists in powder form, in a small phial), being routinely advocated after any course of antibiotics in Spain.

However, as just about all ME/CFS and / or fibromyalgia sufferer has some gut symptoms, if not full blown Irritable Bowel Syndrome (not to mention weight problems), common sense also dictates that something so full of sugar - Standard Yakult contains 18g of sugar for every 100g - wont be helpful at all.

Indeed, I avoid refined sugars like the plague, which is no easy task when it seems to be added to every single packaged food item sold these days, and doing so seems to assist in reducing bloating, discomfort and flatulence. Surely, the sugary yoghurt hit would make things worse?

In the end, this is probably just a good example of how marketers can so easily persuade us of unreal things. Or maybe we've all just taken as gospel the lesson sung by Mary Poppins, that "a spoonful of sugar helps the medicine go down In a most delightful way". :-)

Thursday, 1 October 2009

2 years smoke-free


Sometimes I find it hard to believe that I've actually achieved this, but today marks the second anniversary of my having given up smoking. Some time before that I'd bought nicotine patches, didn't say a word to anyone, didn't make any promises that I may not have been able to keep - not even to myself - and put them in the bathroom cabinet for "one day", if that day ever came.

It was on September 30th, 2007, when I realised I only had enough cigarettes in the pack to last until the end of the day that I figured either I had to rush out to the shops, or it was about to become a new month and here was an excellent excuse to use those patches.

The patches I've regretted ever since and I still say they caused a mild infarction.

Otherwise, after 2 years, the mixture of negatives and positives from giving up is, frankly confusing and somewhat comical. In a sense, I am very disappointed, because I certainly do not feel any better. For other reasons, actually, my health has seriously deteriorated in the last couple of years, so I suppose have to figure that it would have become MUCH worse, if I'd not given up.

I still get breathless easily, which, curiously never used to happen when I smoked. I still have a spontaneous, hacking, dry cough whenever I try to sing, take a deep breath, etc., that I also never had before. This year, I did volunteer myself for a lung function test because of these things and I was found to be absolutely normal. I'd told the nurse honestly how much I used to smoke and she had said, "Well, you got away with it." Which I figure is a good reason to stay stopped.

How much of my 55 lb weight gain is to do with stopping smoking, I don't know. The after food craving I've managed to lick with mostly only will-power, or substituting with fruit or a glass of water. I've NOT to used extra food and especially not sugar as a substitute.

Two years on, I'm still getting cravings, although they are [too] slowly diminishing. First thing in the mornings is the worst and I still need a "fix" of strong, fresh, black coffee to kill that one, but I've also managed to reduce my coffee intake from 3+ to only 1 or 2 cups per day.

That's probably because the Prozac is helping too!

Worst of all though, is that without the barrier of my own personal "smoke screen", all my other allergies and intolerances have become much more acute. Things I didn't used to have negative reactions to, now bother me terribly. This is, I feel, also worsened by there being more pollution in the UK, closed housing with insulation, heating, synthetic carpets, etc., compared to the tiled floors and open doors and windows I was used to in Tenerife. There's a factor that my fibromyalgia / chronic fatigue syndrome / multiple chemical sensitivity is probably getting worse with time and age, but the worsening did also markedly coincide with smoking cessation.

Whenever I go out and might have to wait around for buses, trains, doctors, etc., I make sure that I have entertainment in the form of music, radio, book, magazines (games might be next, if I can ever figure them out at my age), as well as something healthy to nibble and water to drink. I feel like I'm taking a toddler out with all the supplies I need to drag along, but I still just CAN NOT sit anywhere with nothing whatsoever to do. That is the surest way for me to reach into my bag absent-mindedly, expecting to find a packet of cigarettes and a lighter lurking at the bottom and for me to become exceedingly tetchy when I find that there are not.

On the plus side, I can enjoy other people's cigarettes. I find it strange that this doesn't upset me or cause cravings, but I actually find it "satisfying". It's bloody good value too and I'm making all sorts of friends at bus stops when I sidle up to strangers and ask, "Can I 'ave a whiff of your smoke mate?" :)

Looking back at the progress report I wrote last year, I'm seriously under-impressed to discover that, seemingly, nothing much has really changed or improved in the last year. I'll have to wait until I've had 5 years smoke-free and see if I enjoy a huge improvement by then.

I won't hold my breath!


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