Wednesday, May 31, 2006

Food list to beat the fibromyalgia brain fogs!

Eating healthily is just one way we could help ourselves, coupled by exercises! (That is something that everyone knows right?) However, sometimes we forget what are the goodies for the brain, and I am doing a “revision” here to ensure it would be taken into account in my shopping list.

Bs for the BRAIN!

Bs might spell trouble in your school grade, but it is good for your brain. There is a list of vitamin Bs, and the alternative names for these would be really confusing!

B1 (Thiamine)Thiamine (vitamin B-1) helps the body cells convert carbohydrates into energy. It is also essential for the functioning of the heart, muscles, and nervous system.

B6 (Pyridoxine) A study King’s College, London had found that vitamin-B status in patients with CFS is lower than normal subjects, particularly vitamin B6.

“Vitamin B-dependent activities--aspartate aminotransferase (AST) for pyridoxine, glutathione reductase (GTR) for riboflavin, transketolase (TK) for thiamine--were measured in erythrocyte haemolysates before and after in-vitro addition of the relevant vitamin. For all three enzymes basal activity (U/g Hb) was lower in CFS patients than in controls”.

The Wikipedia provides a great write-up on Vitamin B6

B9 (Folic acid): This is the famous vitamin for pregnant women, as it prevents spina bifida in the child. It helps lower blood levels of the amino acid homocysteine that is known to damage brain cells, and increase risk of heart diseases.

B12 (Cyanocobalamin) One of Vitamin B12’s role is in the formation of myelin, the sheaths which covers the nerve cells and plays a role in the transmission of “messages” between the cells. Deficiency could lead to nerve damage, memory loss, low moods, and mental slowness. It had to been drilled into us that this is one of the most common vitamins where people are deficient. Suspects include people who had done some stomach stapling surgeries, vegans (almost exclusively from meat sources!), and guess what, people on long-term acid suppressants for the hyperacidity of the stomach. If you are taking ranitidine, cimetidine, omeprazole etc etc to counteract the stomach trouble the NSAIDs give you, watch out.

Vitamin C

Vitamin C is an efficient anti-oxidant that mops up free radicals. Most of us have some conditions which had long term on going inflammation. These inflammatory processes generates lots of free radicals, which is suspected to be the reason that people with rheumatoid arthritis and other inflammatory conditions seems to be more prone to heart diseases etc.

Vitamin E

There has always been a debate about the alpha tocopherol and another form called gamma tocopherol. Let those scientist debate all the want, what is certain is vitamin E is good for your brains and your heart, not to mention your skin!! I rather play safe and increase intake of food rich in vitamin E, including almost (the Chinese have always used this for great skin and great brains!), green leafy vegetables, sunflower oil or seeds, hazelnuts, and whole-grain flour. Like vitamin A and C, vitamin E is one of the “ACE” vitamins” which are antioxidants and protect our foggy brains from the attack of free radicals. If some research thinks that it prevents Alzheimer’s disease, surely this would be doing something good for us!


Some of the fibromyalgia symptoms seems so much like magnesium deficiency. Muscle cramps, fatigue, irritability?, etc. This is more like a safety net sort of thing. Although lots have been said about magnesium, I can’t seem to find something that is linked to fibromyalgia’s brain fogs.

For more good information check out NIH’s site on drugs and supplements!

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Tuesday, May 30, 2006

Returning to work after fibromyalgia-is it time yet?

I feel so compelled to go back to work now.

No, my body is not ready for it, I know. However, the urgency to return to work seems to grow each day, like a bell in my head which grows bigger and louder each date. I try to keep it silent, but every now and then something would hit it, and there I go again,

The latest trigger of this bell is the state of my siblings.

I feel indirectly responsible for their fear to work, to find a job.

Prior to my fall, I was the poster girl of hard work in my family. I work hard, I never give up, I was determined and can be very persistent. Those were the years my siblings had been inspired by me.

“Why do people ever need a life coach, and job coach etc?” I had asked. At this state, when I am failing, and seeing that people who had me as a role model going down as well, I realise in life, we do need a life coach!

Most of us had one somewhere in our life. Nudging us, inspiring us or even pushing us to a certain direction. There is someone, near or distant, whose success story and philosophy we subconsciously hope to replicate and outdo. That person is our “light”. Many people are lucky, with plenty of examples around them – father, mother, grandmas, grandpas, aunts, cousins, older friends.

I have been that light to my siblings. In me, they saw and example, or maybe a target to overtake. Now that I failed, the effect is terrible.

They are not sure what has happened to me. The workaholic suddenly sat at home, slept and slept and slept. My words have been unreliable. One moment was it was just going to be a 3 month break to work on my thesis. And then the 3 months went to on 6 months and now more than a year has passed.

Both of them seemed so lost, and there is no one at home, no one near who understands their situation and could motivate them. People would not understand the contradictions in our lives.

Fibromyalgia not only takes us, the so called “fibromites” down. Look around, look harder and you will realise that many of us had been the pillar of strength in our families. Although it is common that life had been stressful to us, we had managed to cope well, exceptionally well until fibro or CFS strike. To dismiss these conditions as psychosomatic and trying to dose us with anti-depressants or anti-anxiety medications is a crime!!!

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Monday, May 29, 2006

a foggy foggy day

Today had been an extremely foggy day. It is supposed to be my happy day, my volunteer day at the local charity.

It must be the amitriptyline I toke it last night!

Twice I caught myself entering the wrong amounts into the cash machine and finding myself counting everything a few times when I gave the change. I was just watching the clock, hoping to get off soon.

Sunday, May 28, 2006

Fog-proof recipe-Chocolate and Bananas muffins!

Chocolate and Bananas muffins!

I don’t know how to bake, and has no energy for all those whisking and rolling. But the last few days, I have been in a baking frenzy after discovering a baking recipe that takes up less than 30 minutes from start to mouth!!! And look at the ingredients! Magic numbers of 2 and 125 that my foggy brain can immediately register! Bananas (high Mg and potassium), chocolates (makes us happy: D). I just feel that I have to share this with others. The joy of doing some baking ... could mean alot to us!


Wet ingredients

2 big and ripe bananas

2 eggs

125 ml vegetable oil *

Dry ingredients:

125 g (4 oz) wholemeal flour**

125 g (4 oz) white flour

125 g (4 oz) caster sugar

125 g (4 oz) baking chocolate chips***

3 teaspoon baking powder

125 g


  1. Heat up oven to 180C.
  2. Measure out the dry ingredients, and give them a quick stir to mix well.
  3. Roughly chop the bananas and the chocolates (separately)
  4. Beat eggs. Add in the oil to the eggs. Mix well. Add bananas.
  5. Pour in the wet ingredients (eggs mix) to the dry ingredients. Mix quickly, just enough to “wet” the flour. Mixture may be lumpy, but it is ok.
  6. Pour into greased muffin tins or muffin cases.
  7. Put in the middle shelve of oven at 180C. Bake for 12-15 minutes.

(Makes 8 large muffins or 12 cupcake sized muffins)

Is it yummy? Yes!! Very! You can add in some chopped walnuts too!

Is it fool proof? Yes. The only time I get funny tasting muffin is when my friend followed the recipe we saw in the magazine accurately and put in 3 tablespoons of baking powder! The foggy me did not see the 3 tablespoons, and happily used 3 tsp correctly! Finally there is some “benefit” of being foggy.

Possible variations:

* If you want it to be less oily, use 75 ml oil, and top it up with double cream. I have also tried using 100ml oil, 25 ml milk.

** If you want something more healthy, use 150mg wholemeal floor and 100 mg plain flour, but add another small pinch of baking powder.

*** Chocolate chips are easy to use. If it is too pricy for you, use a usual bar of milk or dark chocolate, and chop with roughly with food processor or get someone to cut it a little with a knife. Just leave it at room temperature before you do, so that it is softer!

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My limpy fibro progress-My 3rd Alexander Technique lesson

Despite my initial disappointment about my 2nd Alexander technique lesson, I realized that today's lesson has been the most meaningful thing I have learned so far.

Lesson started late, and ended early. There had been a two week break between the lessons, and I sorely (both meaning applies!) need some pointers again.

I had been walking really fast and running at times, in the rain for it. When I arrived I was wet and tired, and was actually glad that the "Student" before me finished late, which means I could start late and did not have to make the "teacher wait".

The take home point of this Alexander Technique lesson?

These would be my

"tips to get the most out of your Alexander Technique lesson".

Make sure you are calm and rested before starting a session. Messy thoughts, pent up anger and tired muscles isn’t going to help you to release the muscles!

Having it later in the day, when you are less sore and stiff. Scheduling it in the earlier part of the morning was a big mistake. All night I was a little worried about whether I would be stiff in the morning. As a result I did not sleep well. The price of it? More stiffness! Today is Sunday, and I am still recovering from Friday’s lack of sleep.

Don’t judge! I have been “practising hard”, and was anxious to hear feedback (ie positive ones) from my teacher. To my surprise and enlightenment, I was told that I should not “judge” my progress, and focus on “releasing” and “undoing” as much as I can! If I were to apply this to other aspects in my life, wouldn’t life be less stressful?

Alexander Technique is a philosophy! Why? Just see the above part about “Don’t judge!” If I stop counting how many times I was “fogged” into doing or saying something outright “stupid” and hilarious and focus on beating it and living a full life, life would seem to be better, isn’t it?

I think I am loving these lessons. Despite entering feeling very flustered, I was a calm, and as cool as a cucumber when I walked out.

Related posts:
Alexandra technique, a new hope for my fibromyalgia
Alexander Technique- feeling benefits after one lesson?
Alexander Technique-second lesson
Make sure the Bra fits!
Alexander Technique;4th and 5th lesson
Alexander Technique-a new hope for my fibromyalgia (why I chose to do AT)

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Thursday, May 25, 2006

Inadequate sleep linked to weight gain - May 25, 2006 - Study: Inadequate sleep linked to weight gain - May 25, 2006: "Women who fail to get enough shut-eye each night risk gaining weight, a researcher reports."

And if you look at that article carefully, it is actually weight gain despite similar activity level and eating less!!

Does this account to why it is so hard for me to lose weight?

People always tell me that sleeping more aka laziness= weight gain.

If the study is right, forcing us to eat less, move more would no do good, other than flare, flare flare!!!

I wonder if other fibromyalgia and rheumatoid arthritis patients experience what I do. DIET big time, and you will trigger a flare.

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The river is even wider..... Life is a pile of Sh** now

Life has been hard these two days.

No, not that I had a big flare. I am just a little bit low in energy- relatively well.

Just that i am in an uphill battle with my fogs, and also my relationship.

Years of chronic illness had put a big strain, and put a big drift between us. Can't help but feel that we are drifting apart, and I feel it.

It it my weight gain? Is it my PCOS? In a way, I am "turning into a man", as he jokes. I am not an obese woman with bad skin, and bad breath (dry mouth- either due to Sjogren's or those drugs). I am not even thirty, and yet I have not been having any normal menses. Technically, I can be considered as having a menopause. He is now no longer worried that I have to walk home alone at night, as i am considered "safe". He is no longer worried about my safety as he did, when he felt that people would look at me when I walk down the street.

It is an irony isn't it? I did not have a problem getting lost last time! And yet, just yesterday, I spent an entire hour getting lost, and missing my appointment.

The fire has died out. All is left is his effort to remain loyal and do his "duty". How long could this last? Last night we had a "fight". And the sign of me letting go? I did not bother to argue. I wanted to, but I did not have the energy for it. Instead, I treid to sleep. When that failed, I plucked all my energy to get out of bed, and did some work on my thesis, only to find a lot of spelling mistakes and errors everywhere in the papers. How did I get the errors there? I had not a clue. Should I laugh? Should I cry?

At the end, I chosed sleep. I had no energy to laugh or to cry...

When life gets to this stage, is it enlightenment? Or is it depression?

Life had been sh**

Wednesday, May 24, 2006

Fibromyalgia's "brain fogs"; the most cripling, disabling part........

How do I cope with fibro-fogs?

Fibro-fog is the second most crippling aspect in my illness. The champion crippler is of course...fatigue!!

Fibro fog is the most "invisible" aspect in the "illness" I have. No one can see and notice it, let alone understand it. It is the thing that force me to retreat into a very lonely world.

Before fibromyalgia, I had been known as careless or forgetful in my daily life, due to my happy go lucky nature. I did not pay attention to small things, and can't be bothered to double-check things. However, my attitude towards work had always been different - the playful side of me gets really serious. Anyway, as a whole, my attitude to life is the cup was always half-full, and a pitcher was coming to top it up.

I guess my carelessness history adds to my pain now. My husband still can't comprehend what is a fog vs plain carelessness. Maybe, he just tries to avoid facing the facts. This strains our relationship, and pushed me over the brink to depression sometimes.

Other than straining my relationship, it is also taking away my identity: who I am. Just a couple of months ago, a friend told me he is keen to meet my husband- the man who married the smartest girl in class. I laughed! And I almost cried!

I have been academically inclined all my life. Ask any of my friends to describe me, and you can't escape from something related to "smart" or "intelligent".

But look at me now!!!

I can't even copy out my bank account number correctly onto the back of a "quick cheque deposit" envelope within 2 attempts.

I often lose my way when I am in an unfamiliar area, even if I had been there before. This was not something that could have happened. I had a very good sense of direction since I was a kid. I would not even lose my way in a big foreign city, and yet yesterday, I was lost on the way to work. I almost broke down on the streets!

How distressing is this? You imagine. You just imagine.

Fibro-fog is my the biggest enemy. I am not too sure if I will ever lose this fibro-fog thing, but I know I have to cope with it. I have to devise ways to cope with this invisible enemy. I hope to make this fog thingy just another "inconvenience" of life, akin to hailstorms and foggy misty mornings.

This would only be possible if I could recognise the warning signs of a heavy fog day coming on (yeah, developing my own "weather forecasts" system), and having effective ways to deal with it.

Fog sucks. But after all it is just a fog!!!

Related posts:

Fibromyalgia's Fibrofogs: How does one cope with it?

Tuesday, May 23, 2006

It went well.............

For the good 4 hours that I was working on my part-time voluntary work, I had only ONE slip-a momentary fibro-fog which I hoped that no one would notice.

As it was Monday, the charity shop was relatively empty, and it was not really a stressful start. As I have till experience, I quickly learned how to do it again. Within two hours, the manager was happy to leave me alone on the shop floor, which really trilled me. Wow, I was thinking, the former best check out girl in a superstore havent lose it all yeah!!! :D I felt my confidence oozing back again. Of course, I was scared too-worried that I would suddenly be foggy again. I took each transaction really carefully, in case I made a mistake.

I came home dead tired, as if I worked 12 hours. Today I woke up late, still recovering from the “work”. Hmmm…. Looks like there is a long way to go, but I guess I am on my way…

Perhaps, someone did pray for me.....

Monday, May 22, 2006

Pray for me: No fibro-fogs coming my way in my first part time job since fibromyalgia!!!

I am not religious, I don’t pray. But today, can someone please please pray for me?

In 1.5 hours, I will start my very first job that needs be to be alert for 4 good hours in a row. This is the first time I am doing something like this since fibromyalgia struck.

What is the big deal, only “4 straight hours”!

Well, it is, it is a BIG deal for me, even when this is non-paid, voluntary work. I have been hoping and hoping that fibro-fog won’t strike me later. This is where I will get the CONFIDENCE to face working world again. 4 hours is a great start for me!

I have not been feeling very well, after struggling to meet deadlines for my job applications, and using up all my energy “reserves” on Saturday.

Job applications… well that had been a struggle. It did not help that my husband has not been understanding about it either; he still can’t accept that I am always that “sharp” anymore, and I am no longer as independent as I was. (Perhaps he is thinking that if he doesn’t help me at all, I will learn to regain my independence??)But well, I better stop mentioning something that is so heart breaking, when I am going to embark in my first part-time job, which I had been trying to get since January!

It is for a voluntary group that I like, and I am very happy that they have accepted me. Just hope that I got enough energy, and stay alert on it!


Friday, May 19, 2006

No Alexander Technique lesson this week

Sorry, there wont be any update about my Alexander technique lesson this week. I am not able to attend the lesson.

So far, I have been practising at home. That is the perfect thing to do on those nights that you cant fall asleep.

Find myself paying more attention to my postures now.

Shall post the updates next Friday!

Thursday, May 18, 2006

Energy saving tricks 101-Drying the dishes!

What do you do when you have less, limited and unpreditable level of energy?

You try your best to preserve it, and literally do all you can to not waste energy.

Here is a trick I just learned.

I use the oven a lot to cook, as it is easy, and quick. With a timer, you are at no risk fo fibro-fogging your food to charcoal looking things.

One day, after all those entertaing that we did, I was just dead tired, and chuck all the dishes into the owen. I turned the temperature dial off, and just let the fans run. Within 1-2 minutes, my dishes were dried. And did I tell you the wine glasses were spotless!!! It is as if I wiped them dry one by one!
Try this at home!!

It is perfect when the oven is in a semi cooled state, lower than 70C, whereby I could chuck in all those plastic plates that I have acquired since fibromyalgia and arthritis entered my life.

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Wednesday, May 17, 2006

Google unveils new applications - Software - Answering the prayers of Fibromyalgia sufferer's foggy brains

Google unveils new applications - Software - News - ZDNet Asia:


I think Google is listening to fibro-fogged people like us. It is coming up with Google Notebook, just what is needed to bust the fibro fogs!!! No more forgetting what you have just read on the net, cos with one click, you would have noted it down!

Google new "notebook" is just so wonderful!

According to ZD Net:

"Notebook is designed to let people click a 'note this' link in the last line of a particular search result and save the result information to a virtual notebook in a pop-up window.

People can also grab text and pictures from Web sites and paste them into Google Notebook, as well as make the notebook full-screen size, drag and drop items to reorganize them, and e-mail the notebook to others. The program requires a plug-in and a Google account."

Again, typically Google style, it is so easy to use and download. As I am using Firefox already, I just had to click download, and it is installed when I reopen my browser again.

I am already using this feature to blog for this entry, and I must say it is God sent to scatter brains like us.

You can find it here :

Another great feature is you could make you notebook public! Is this going to replace blogging? I think I might use this feature in the future, for share what I find about fibromyalgia and rhematoid arthritis with others? That would be great isn't it? Fibro babes unite!

Hmmm... There goes my Foggy Brain excuses! No more achy fingers from noting things down!

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Tuesday, May 16, 2006

Being newly diagnosed with fibromyalgia is difficult, yeah?

My dear newly diagnosed friend,

Being newly diagnosed with fibromyalgia is difficult, yeah?

What does the future hold???

For a long time (it takes a long time, for most of us), you longed to get diagnosed. And now that you have it....It seemed like the whole world has just collapsed on you, and you don’t have your usual level of energy (or any energy, in fact) to fight it back or escape from it. On certain days, you don’t even have the energy to ponder about the consequences of having these condition or syndromes.

I have been through it, and thousands, if not millions of people with fibromyalgia and CFS went through it. (I know that fact offered no comfort to you). Some of us might have suspected that we got it. But like everyone else, we still craved to hang on to that ounce of normality and hope, preferring to find some other reasons for the unprecedented or abnormal level of fatigue we experience.

We are desperate to find out if there is some “organic”(is something the doctor could measure or test) reasons for the pain.

I thought I might have been happier if someone were to tell me that I have cancer or some other more “normal” diseases - that means there are drugs, treatments and stuff that could be done to “restore” myself to health one day. Having a typical life-threatening disease would mean I will have one of two possible outcomes: survivor-restored to “health” and normal life again vs. death. Because my “track record” as a human being and as a patient shows that I am pretty hardy, I knew I would win “another battle”- if it is cancer or something else. In other words, these still have some sort of HOPE!

But what do you do if you have fibromyalgia or CFS??? These two are different stuff, but you have one thing in common—ENERGY crisis!!! ( pardon the pun)

Is there anything that could be done for you?
They might offer to prescribe tricyclic antidepressants for you; eg amitryptiline to relieve some pains. For many newbies, finding out that you have been given an anti-depressant itself could depress and upset you and sap your energy enough. Why do they give you an antidepressant?!!

I was shocked. My knowledge of drugs meant it was a really hard blow to me then. I remember as an undergrad, when I first read the side-effect profiles of these drugs, I was totally sympathetic with mental patients. I thought no wonder many patients were “non-compliant”!!!. I wouldn’t mind being “depressed” or “mad”, if these drugs give so many problems.

It does work well for some people; but for me, I feel more fatigued than already fatigued. The side-effect profile of these drugs mirror so much of what we are already having, I wondered why we are given this! Was there nothing else?? The reason is simple, there is really nothing else in the medical artillery to tackle what we got.

To cut the long story short, there is no really effective medical treatment for us. The only stuff that seemed to have “some evidence” is the tricyclic antidepressants eg amitryptiline (fantastic, just as these drugs are no longer preferred by mental patients, we can keep the business going), and some other stuff for neuropathic pain (gabapentin and pregabalin- again stuff that did not “take off” in the marketing sense, for diabetic patients). Everything else is either non-evidence based (ie have not been shown to work well in a well designed clinical trials), or non-conventional and alternative medicine (again, more anecdotal evidence from users rather than proper trial.)

Feel a certain level of hopelessness?(Or fell asleep....?) I remember feeling that time, “there is no obvious treatment for me, and I don’t have the energy to sieve through all these to find out what might actually works! Oh yeah. I was broke too. I had to let go of my job, and used up all my savings for blood tests etc etc. At that place where I was, there is no disability benefits etc, and there was no FREE treatments, even for conventional, proven medicine unless you don’t have a penny to your name and absolutely pathetic! As my husband was still working- no chance!!! If you want to try unproven stuff, good luck!!

My only “treatment” then was sleep, and massage (which used up the rest of my savings).

Only months later, I started to slowly find some energy to do something again. Until today, more than one year later, I am still unable to work. I am desperate to go back to work now, but I know I can't hold a job down. I just don’t have the energy to survive working for 8 hours, much less the 14 hour days my job required.

So, how am I now?

Am I happy? Yes!! Generally. In fact I think I am happier as a person than I was.

Am I satisfied in my life? Yes, I am, despite all these struggles with energy crises (I struggle on two levels, to keep warm on a cold day- gas bills going up, and also my own energy level).

Do I see a future? Yes and No. The future I see is definitely different front the future I saw. It was to be a picture of a happy family- two kids, two jobs, and relatively rich in monetary sense. I had lots of “potential” in terms of my career then. Now, I don’t see myself holding a great career etc etc. I don't dare to wish to have kids, because by the end of last year I had PCOS. In fact, I know I have to give up some “high maintenance” “friendships”- no energy amd $$ to maintain.

What I have is a more compact life. Smaller circle of friends. MUCH MUCH less money to spend. Much less energy to do lots of things-including getting angry or upset or unhappy.

I just expect a simple life, a happy life. I just wish for enough energy to take care of myself and my family. If taking care then meant good allowances for my parents and siblings who are still in school, taking care now means talking to them, making sure they are well, don't worry too much about me, and motivating and emotionally supporting my younger siblings, who now have to juggle part-time work and university to support themselves and my elderly parents. It is very very hard on them. They get lots of difficulty applying student bursaries for poor students, as my story as a well-educated woman sitting at home was not acceptable. At times I cry to think that they go through all these because of what I am going through. I feel that I failed. I FAILED as a daughter, as a sister. I failed.

However, it is not all sad soppy outcomes!

There is always a blessing in disguise, in every situation. I believe.

My brother particularly, seemed to have "benefited" from this sudden change of responsibilities. Somehow he feels that he is the “man of the house” now, and works really hard. Whereas I used to worry about him (the least hard working among us), he now seems so sensible and work hard on whatever chances thrown at him!! He used to think that our parents would live well in their old age because of me, now he knows that he got to do it! He needs a good job, and a good income one day, to support them. He no longer can say, “Don’t worry, my sis is super-capable!” What a change!

So, what does the future hold for me? I am not sure.. What will be will be, que sera, sera!

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Monday, May 15, 2006

Happy first anniversary of having fibro!!!

This should be my first aniversary of having fibromyalgia!!! (if i remember correctly).

Here is how it came about.....

A year ago, we (hubby and I) flew ALLLLL the way to Bangkok, to get a second opinion.

We could no longer afford to see another rheumatologist, endocrinologist etc etc, so we went all the way for it.

Actually I was badly in need of cheap massages. I could not afford the massages in my country.

I was aching all over, stiff all over every morning. It took HUGE efforts to pull myself out of bed, book a cab, get into the cab, and walk from the cab to the lift. At times, I would call my kind boss, and told him, there is no way I can come in straightaway, if there are no urgent meetings, please let me detour to my massuer and get an hour of massages to free up the stiffness and soem of the pains.

I felt well after massages, and Thai massages and Tui Na which worked on acupoints worked best for me. I decided to take leave and have a whole week of Thai massages! It would come up to be cheaper to fly to BKK to have it at the Wat Po or other shops there (only 200-400B /hour!!) , and have a "rest", since massages are so expensive.

I went there as I knew the massages were cheap and good, and hoped that it would help. As one of my professors told me how impressed he was with the private medical sector there- so cheap and so good, I felt I just had to give it a try. I thought that there was no harm trying, since the rheumatologist and doctors I had been seeing did not help much and did not know what was wrong with me.

I booked an appointment through the internet. Chose a rheumatologist who just had training in Mayo Clinic and worked with young women with automimmune disease (I did not want another rheumy who deals mainly with elderly!!!), cos I knew I have something more than RA.

Oh my God. My husband was shocked. She spent more than 2 hours checking me and talking to us that day!!! (In between, I saw her making phone calls and checking pubmed, haha. She was doing her best!!). What I usually get is 10 minutes from my doctors.

After seeing me, she sent me for blood tests, and sent me to see an endocrinologist(Boston trained), and another gastroenterologist. We were worried with the bills but went ahead.
After everything had been eliminated and testing me for my tender points, she told me that she "suspected" it. She could not confirm on the spot, but she wrote back to my regular rheumy about it.

That was how I got a "suspected" fibro....

Was it a terrible blow? Yes, it was. I wished I had cancer instead at that time.

Was it a relief? Sort of. Having another medical professional agreeing with my own suspicion means that I could direct more energy to understanding and coping with it. I also felt more equiped to deal with the pressure of people suspecting that I was depressed or having mental illness.

Sunday, May 14, 2006

First entertaining since my FMS

I survived many hours of entertaining, including shopping for food and preparing some of them.

To make it easier for me, hubby asked his friends to cook a dish each, so that we could sample a variety of food.

My main job was making sure every one had what they needed, and baked some drumsticks and fish fillets for them.

I had a great time, and for a few hours, I thought I had my life back.

As soon as the guest left, and I finished some tidying, I took a quick shower. While waiting for my husband to finish showering and give my painful thighs a quick rub, i fell asleep, hair still wet in the towel.

Back to reality, I just dont have that much energy now. However, this is a first step to tell myself that I am getting back some of my social life!

This morning I made some lovely bananas and choolate muffins. I am supposed to post the recipe here, but my brain cant remember that simple recipe!!! So much for being brainy. Should have been born a bimbo and being labelled as the big busted airhead who knows nothing than being brainy. It still hurts a bit to realise that when the fog comes... it does not matter whether you are brainy or not!

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Friday, May 12, 2006

Alexander Technique-second lesson

Today is my second lesson.

The biggest take home point I have today is : It is not easy to do it, when you have an actively inflamed, and painful joints!!!

Compared to last week- my first lesson; which was held on a "good day", my muscles just refused to release!!! My poor muscles.

Is it easy for Fibro patients?
Not that easy. Will take lot's of commitment from patient's side. Sometimes, our body just refused to listen to whatever our brains are telling them todo, esp when they are already in pain. It can be very frustrating, and mentally draining to keep on telling the muscles to "release", and it refused! After a while, in my foggy brain jsut did not know what to tell the muscles. Oh ya? Did I tell you that when I "practised" at home, I was tired, and foggy--->>> and fell asleep.

Will Alenander Technique help ME?
Mes??? Yes, definitely. As of today, I genuinely believe that if I can master it, it will help me tremendously. I had a few peaceful night of heavenly sleep after my thigh muscles were relieved. In just 2 lessons, I can really see what damage have been made and why I am permanently in pain.

So it helps all fibro patients?
I am not sure. Is there something like ALL fibro patients? We dont understand enough about the disease yet- there maybe different groups of people with different reasons of having similar symptoms.

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Today is May 12, Fibromyalgia Day: And I am taking on a challenge!

Happy Fibromyalgia Awareness Day!!!.. [ you can find out more info from National Fibromyalgia Foundation]

My husband had been conned to bring home some friends to our cramped room, to have a simple dinner tomorrow, not knowing what occasion it is actually for.

Well, it is to celebrate despite the fact that I have fibromyalgia, and so far, I am keeping the faith and the fight. My joints celebrated too, by being swollen this morning, and stiff-totally refusing to co-operate with attempts to “release” during my Alexandra Technique lessons.

I celebrate the day by doing the following:

* Shopping lots of food for the mini “party” tomorrow.

* Signing up as volunteer in a charity shop- will use 4 hours/week of my precious “energetic time” to do some good work.

* Going for my second lesson of Alexander Technique – will write the “progress report” later. I am dead tired now.

* Made some muffins!!! This is my second muffin making attempt (first one was a “cheat”- good old Betty Crocker blueberry muffins). I will share the simple recipe-because it only takes 20 minutes of our concentration and time to make- from measure to out of oven. It is a GOOD recipe in that sense.

* Washed the laundry-although it is still in the machine, waiting for me to find energy for it.

* Filed my mystery shopper report-ate dinner outside yesterday to avoid cooking.

Wow, what a day!

Ok, got to admit it was not all well.

* Knees painful, struggled to change into a pair of shorts before my AT lesson.

* Uncooperative muscles, just refusing to release during lesson!! And my joints “exploded” instead of just “crackling”, it gave the teacher a shock!

* Forgot to call my doctor to get a prescription, and it is a FRIDAY!!!! I hope that I am well enough for tomorrow’s party!

* My laundry still sitting in machine. I got clothes strewn all over the place.

* My knees still painful. My thighs better than yesterday, but still painful.

* Ops, forgot to post my free exercise access forms! I am desperate to get reduced/free gym or swimming pool entry! I better remember, or it will be forfeited.

* Foggy brains. Bought 2 super expensive peppers, cos I mistook the price/pepper for the price per kilo. There goes my veggie budget for 1 week! And I can’t even eat the peppers cos it triggers my RA!!!

It is just 6:15 pm now. I am getting fatigued (totally forgot about the laundry).

Gosh, I am slumping on the table now. I don’t think I have energy to cook dinner. I will just stuff my hubby with Chocolates and Bananas muffin later!

6:25 pm now. The fact that I took 10 minutes from that sentence to here, means, it is time to sleep. Tomorrow I got to cook!!!! I hope things goes well.

Cheerios! Happy Fibromyalgia Day!

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Monday, May 08, 2006 Support fibromyalgia sufferers by listening to their concerns

Let's not let May 12 go unnoticed this year. Please put up a sign in your waiting room supporting World Fibromyalgia Awareness Day. If party hats and balloons won't work, then make sure your fibromyalgia patients know that May 12 will be their special day, where you will spend time with them—to laugh, to cry, to listen—and to not say, "It's all in your head." Give them the respect they deserve on their designated day. It's no more and no less than your other patients receive from you.

The above was quoted from an article in Fibromyalgia is getting the recognition it needs as "not something in your head" in US, and making inroads in Canada and parts of Europe.

On May 12, remember that fibromyalgia, just like any other chronic diseases, exist everywhere in this world. Everday, potentially thousands of patients around the world, especially where fibromyalgia is not yet recognised, suffer in silence or risk being labelled as a malingerer, psyhotic, depressive all many other terms. Everyday, many medical professionals out there would add salt to the our wounds.

I am glad to see some in the profession, actively urging their peers to take a fresh look at this situation.

May 12, is Fibromyalgia Day. Let this be a step towards better understanding of the disease.

Saturday, May 06, 2006

Alexander technique- feeling benefits after one lesson?

I was lucky enough to get a free Alexander technique lesson this morning!

I was really really skeptical, at first. If you read this and feel skeptical; about Alexander technique, then I must apologise for not doing it any justice.

The " teacher" started by taking down my glorious medical history of pains. After that, she explain briefly what AT is, and asked me to stand up.

Instead of shooting off with a list of my posture problems, she put her hands on my spine, and started to go up and down the spine gently, but quite firmly. Telling me to imagine my spine lengthening, and my head growing, and "undo" and "letting go". I was thinking "great, if I think hard, I will be taller??"

I found myself not able to "lengthen", and closed my eyes to concentrate and and maybe tried to catch 40 winks because I was so tired. Somehow, the process of her gently pushing me here and there seemed relaxing. I was told to keep my eyes open by the AT teacher, cos it "helps you to get better balance and concentrate!"

So, the lesson went on- I was told to concentrate on various muscles, and to "let go", or get it to "smile"- the purpose is to unlearn all the bad habits we have formed. After standing and sitting for a while, we moved on to a firm couch, and a pile of books were used as a pillow.

By that time, i was more cooperative, and seemed to response to her urge to "let go" much better. I did feel some muscles seemed to "open up", as instructed. Mid way in the session, my thigh cramps (which had been ON for more than a month!) was gone!! I realised the muscles were relaxed again!!However, that was only for a while. The moment I take my mind off it, it goes back to the same old cramp.

And the end of the session, she "pushed" me up into a sitting position, and I was told to get on the floor with minimal effort. Guess what, I felt so much weight in the heels!! The weight of my obese body seemed to have moved to the heels (from where?). The toes, did feel less cruched up. At that time I was quite amazed with this 45 minute session of alexander technique had done to me! I never realised that I was literary on my toes all the time!

I obviously saw the benefits of Alexander technique, and was worried about me "forgetting" (like what happened to those thighs) when I go home. However, there is good news!!! She offered me 12 free lessons!!!!! (probably because she pitied my jobless situation.) 12 free lessons!! Oh my GOD! I was so soooo happy.

My next lesson is next friday, and I will definitely put my PROGRESS (hopefully) here.

I did feel very tired by afternoon, but hey, I managed to walk really a lot today! Today had been a really good day.

To find out more about Alexander technique, you can try this website: . You can also get a lot of books from Amazon on this topic. I find helping before deciding whether to give it a go helps.

Related posts:
Alexander Technique-new hope for my fibromyalgia
Alexander Technique-second lesson

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Alexander technique, a new hope for my fibromyalgia

My choice of "approach" to my "health problems" had been raising quite a number of eyebrows. Yes, indeed, I can be considered as a "traitor" by my "medical professional" friends.

I believed in the muscle story. Yes, I do. And I think I should be quite qualified by "experience" and "indirect education" (no, I am no physiotherapist, but I know a a whole damn lot little about human physiology and pathology).

Until this point of time, I cannot say I am 100% certain that what I have is fibromyalgia, I can only suspect. Anyway, fibromyalgia itself if not fully defined, there might be many variations or subsets to the condition. Am I having myofascial pain instead? It seems that myofascial pain also could cause very very similar symptoms to what is attributed to fibromyalgia.

What I know is I have a lot of pains, mostly the muscles and at the tendon areas. What I am certain is I have a LONG history of chronic pain. Thanks to my stubbornness and refusal to rest or "respect" the pain, I have been going on a "Use your muscles!!!" mantra whenever my sciatica or rheumatoid arthritis pains are causing havoc. So, is there any surprise that I have over developed muscles where the joints and discs gave way? Yes, parts of them atrophied, but some of them just seemed to get bigger and harder. All these are just a natural part of pathophysiology of joint or skeletal muscles conditions.

Alexander Technique offers a chance to correct those “posture” problems, those years of misuse and abuse of my muscles, which could have contributed to the picture of fibromyalgia I have now. No, I don’t think it is the answer, I think it offers some help to correct one of the contributing factors. And looking at what I felt during and after my first Alexander Technique lesson, I think I should have some reasons to feel optimistic about it.

Related posts:
Alexander Technique- feeling benefits after one lesson?

Wednesday, May 03, 2006

Words can hurt: irritating things that people say

This is my own list, after inspired by Sandy's (of Fighting Fatigue) ;Irritating things that people say and do

1. I think it is due to your weight. I am sure you will be healthy again if you lose the weight.
Shut up. The problems came first, the weight gain came only after my pains started. My BMI was a healthy 20 before my arthritis started. Try having to take lots of NSAIDS for your pain, and try too keep your hunger pangs at bay, and try to have periods where you can't get out of your bed!

2. You sleep too much!
I got this from my housemate. I feel like killing her. All she sees is me getting up past 10am. Did she know that I could be wide awake at 4am??
3. You should see a dietitian and fix your diet.
Come on, I passed my nutrition modules with distinctions. If only it is as simple as eating healthily, I must be at the top 10 percent of the population in terms of health. I am not even eating any red meats!
4. You look OK to me, so what is the problem? (spoken with greattttt authority)
I always feel like gathering all my strength and give these people a black eye, particularly those doctors! I hate meeting up with this group of "friends"-they are so patronising. If they do not know much about an illness, it does not mean that it does not exist.
5. Come on, everyone gets tired!
There is a big difference betwen getting tired, and totally fatigued!

6. Come on, I work longer hours, and I too don't feel like getting up in the morning. All you need is a little discipline and a bit of determination.
Disipline??? Determination? Who are you talking to? If I am a wimp, I wouldn't be walking around! Ask my ex-classmates? Who was the "iron lady" in class? Who is the girl who had a steely determination?
7. You need to excercise more!
Exercise more? What type of excercise are you talking about? How much? Anyone of you do as much walking as I do? (That is the only thing that I could do independently, without aggravating the symptoms.)

8. Walking is not counted as excercise!

This even came from my doctor! so what counts huh?
9. Oh I envy you! You are not working! So you are now one of the ladies who lunch?
Beware of what you wish for!!

10. Oh, stop finding yourself a new excuse!
This is the ultimate. Usually I dont bother to talk to these people anymore.

I am going to post another top ten list one day, given by people who I come across or have to work with, in relation to my PHD work. This group of people are mostly doctors, nurses, healthcare professionals and other PHD students or professors. Their statements are MUCH more "cruel" than the lay people!!

Google marked my blog as a potential spam blog: Is this the ultimate compliment or insult?

Dear Google has marked me.

As a result, I am struggling with the “word verification”, every time I want to try to press the “Publish” button.

And my dear human representative from GOOGLE who will soon visit this site, I hope that you would visit as soon as possible. If you could, make sure my other two blogs : Fibromyalgia connection and PhD Trek would never suffer the same fate.

We, the people with fibromyalgia are fans of blogging, despite the pains which make it difficult for us to use the computer (or anything else!). It is in this blog world that we become “FREE again”. Free to express ourselves, free to share our experience and other information, free to choose when we come and when we go.

Are you guys at Google aware that having fibromyalgia means that we sometimes have “fibro-fogs”? It affects us terribly in many ways. Among others, a PhD candidate like me is having problems spelling correctly without a spell-checker!!! Something just goes wrong sometimes between the coordination of my eyes – fingers and brains. That word verification thing is a torture!!!

Can you ever imagine having to try and retry and retry again to get that word verification thing correct??? The more times I tried and got it incorrectly, the more letters you seem to give me! Which makes it even more difficult for me to “pass”! So, please have some mercy! Don’t use that feature on us! Blogging is the last of many freedoms patients like us lose (and I believe many patients whose sight or coordination is affected). Don’t take it away from us in the name of stopping those horrible spam blogs!

I know that someone from Google would eventually visit my site, and clear my name. But until then, I have to wait, and I am not told how long I have to wait. Waiting is not fun. Do something about it!

And I hope that Google understands a simple philosophy which I use; "Enabled, not disabled".

Tuesday, May 02, 2006

Email posting

I am testing out the email posting feature of this blog, after the fialure of my word publisher to do its job. I still dont have a clue why.
I just wish that these blogging software gets more and more user friendly, and more instinctive!
Having an active fibro episode and after taking amitryptiline means I am foggy now... so spare me those manuals and get me that spell check!

Post emailing comment--- you still got to log in and click the publish thing!
It will only be saved as a draft!

Monday, May 01, 2006

Splitting the posts

At first I thought that it is better to put all my stuff into one blog. Now I think maybe I should get more organised. Seperate my purely PhD suff from my purely Fibromyalgia or arthritis stuff.

I shall attempt to blog more about my PhD theses process in my PHD Trek blog instead. It is a TREK. My PhD experience is no smooth journey.