My profile picture.

I think this picture represents me best. Two happy pigs. A picture says a thousand words. Too bad they only allow 50 kb max for profile pic. I wonder if I could get something nice from online or some soft ware to make the size smaller fro this graphics.

Depression is nearer.... I know

I know depression is creeping in now. Last night I cried while bathing. Tears just welled up. All it took to trigger it was my husband visited a university which my sister was accepted into. It is a very prestigious university, and I always felt responsible for it, for her to end up this way, stuck in a course that she did not enjoy in a mediocre university. Her grades in her year one pulled her averages down badly, and she had not managed to catch up since. I could not imagine that she would be graduating with this kind of grades. After all, she was a top student then. Her peers go to the best universities in the world. She only ended up where she was, because I failed to support her. Without my financial backing, she was stuck.

I was also probably affected by the fact that I could not fit into a size 14 jeans easily. My weigh creep up, despite my efforts to lose them. So last night, I just sat there. I wanted to fish out my lap top and start blogging, but I could not. At the end, I just took my most despised medication- the amitryptiline. I was totally knocked out. I woke up at 1.00 pm this morning. I was groggy for more than half day. My mouth stank to high heavens.

A sad thought about fibromyalgia

It is sad, isn’t it? All the weapon that is available against fibromyalgia is just that amitriptyline? Does it work? I don’t know. I think it is mode of action is just to knock you out. This “treatment” probably originated from the days that people like us are referred to psychiatric units.

Now they try to have pregabalin indicated for fibromyalgia as well. But does it work? Will it work at all? Instead of trying to really fund research to understand the pathology- they hows and whys these conditions CFS, ME, fibromyalgia occurs, drug companies would rather fund trials to proof their drugs (which had been developed for other conditions, but they found that these drugs did not work as well as they hoped for the conditions they were designed for) “happen” to work real for fibromyalgia etc.

Doctors are guilty, very guilty in fact. Where do you think the 11 out of 18 tender spots come from? It was just a screening criteria for fibromyalgia trials, because they did not know who should be considered as having fibromyalgia which is severe enough to warrant getting enrolled into trials.

Pathetic, isn’t it? No disrespect to the guys who can’t get up in bed, but what is the world becoming when these guys get more attention and research $$ to treat them than people who can’t even get up from bed?

The reason in the difference is plain simple. Guys who can’t get up in bed earns $$, and could pay to get it up. People who can’t get up from bed, can’t work, and don’t even have enough energy to protest.

I know that all these sounds terribly bleak, but I am nursing a depression, remember? I know that my main reason for this current episode is my inability to work hard, hard enough to complete my thesis soon. The only thing that I can do now is no matter how tired I am; I do a little bit, so that at the end of the day, I can tell myself that I have been moving, although it is just snail pace.

Technorati Tags:
chronic pain; fibromyalgia; chronic fatigue

The signs of depression- got to fight it away

I was awake very early Wednesday morning, around six plus? Perhaps it is the early lights of spring, perhaps it is the noise that my housemates make. But my main concern was;

Is this another sign of depression creeping in?

I had battled depression before. I battled this “demon”, that almost took my life. At the “height” of the fight with my depression, every window seemed to be telling me that I would end all pains by turning open the lock, push the grills aside, and climb over. Every window in my 12th floor flat would be inviting me. When I walk along the corridor, the temptation could get really strong, particularly when I was waiting for the lift on the 12th floor lobby. It was really scary what creeps in when you lose hope. There seem to be an invisible pair of hands which just want to pull you down.

I had since learned to recognise the first signs of depression-Waking up earlier than usual. If you wake up before the alarm clock rings, even though you are tired, it is a warning. It is one of the first signs of depression.

The scary thing about depression is many people are not aware that they are depressed. They just thought that they are maybe bugged with something recently, not in a best mood, that is all. That is when it is most dangerous.

Recognising early awakening as a symptom is very important. Once, my friend who is a senior registered nurse was just telling me about her early get-ups, and she did not know what to do. What she desperately wanted was more sleep. I did not suspect depression, but just told her matter of factly that this happened to be a sign of depression.

Later that day, she told me that I was spot on. She could be in depression, and “silly things” like crossing the road when the red man is on floated through her mind recently. She managed to get out of it, slowly, after we sat down and identified all the problems, and things that could be done to help her.

Recognise early signs of depression, it helps you get out of it before it is too late.

Technorati tags:
fibromyalgia, stress, coping, CFS, Chronic fatigue syndrome, depression

Badly needing a good Tui Na massage

I woke up at dawn, and probably because of tiredness, managed to lie down and drifted in and out of sleep. On Tuesday afternoon, I was still sore and tired. I called my clinic where my therapist worked. I was badly disappointed. She had been transferred to another branch! It took me months to find a decent Tui Na massage therapist, and now she is transferred away. I did not took up the offer for other therapists.

Out of my desperation, I decided to try another clinic. The doctor said, she herself performs the Tui Na massage. Hmm I though that is a safe option, as that cant go wrong. However, I had my reservations as these doctors will usually prefer to give acupuncture or herbal prescriptions- the reason is simple. You can perform acupuncture in 2-3 patients in half an hour, and you don’t sweat a bit. But for Tui Na, real Tui Na, you literally push and pull the patient. The good Tui Na therapists I know usually have really strong arm muscles, and work out a sweat!

I was really sceptical about whether she would be good, but tried anyway. Only got an appointment for Wednesday. Terrible. Got to wait another day.

Technorati Tags:
massage; chronic pain; fibromyalgia; chronic fatigue

Pain is bringin in the depression

I have been unwell for the past few days. I woke up on Monday morning feeling warm and achy all over, worn out even before I crawled out of bed. I spent the who day doing nothing, except trying to rub the sore spots a little with Tiger Balm. Massage was not an option as the therapist does not work on Monday. After a long hot bath, I tried to sleep, but I felt so feverish. I woke up in the middle of the night in pain.

I tried to do what I usually do, massage all the tight, sore spots, and press on the acupoints which I knew always helped me the pain. But that night was different. I could not! I could not do anything as my hands and fingers were all sore as well. When you hand is sore, how do you massage the rest of your body? I just sat there, unsure what else to be done. The medicines had been taken, the balms all applied and gently rubbed on. What else could I do?

Somehow my husband woke up, and sleepily rubbed a few of the really sore areas. I fell back asleep, still in pain and feeling warm, but I guess I was just too tired.

Paying for someone to write your thesis. Would you do it???

My well connected friends are telling that he gets “offers” from some rich undergraduates, offering to pay him $$$ to write-up their assignments.

I am disgusted, really, really disgusted. Some rich students never hand in any single assignment which is their own blood and sweat from day one. The only stuff they write is probably cheques! And these brats go to good schools, and thought of doing post-grads!!! That is an insult to post-graduate education!

Well, perhaps there is some truth in what they say. These rich brats do not need to learn to write, they just need to know how to read. After all, when they graduate, they have millions or even billion worth of business to inherit. All they need to do is read reports submitted by subordinates, and decide whether to approve it or not.

The don’t need to be bothered with writing reports, assignments. And when they do higher degree, they probably will not write their own thesis as well. This thesis writing stuff is fast becoming an industry. Is this the end of real academic education?

Pressing on with my thesis writing

Just keep those fingers moving, and moving. Write and write on! I am trying my best, as the pressure on me finish up that thesis writing business is mounting. Another day pass by, another notch my pressure barometer shoots up.

I am fighting pains all over me. At this point, as I am spouting nonsense here in my blog…my shoulders are killing me, I am having this tension headache. And my fingers are struggling to push on. My wrists are in pain.

But I don’t care! I must, I must get my PhD, and I am refusing to cut any corners about it.

The river is wide, but I must still press on with my thesis writing.

My fibro and the doctor

(image placeholder)After being influenced by Devin’s works,(Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual) I set about trying to distinguish whether I had Fibromylagia or just chronic myofascial pain.  When I say the doctor last week, I tried my best to get the referrals. I must say it is not too bad, I got referred to an Alexandra Technique practitioner for a start, to try to identify whether there are any irregularities in the way I work. I really hoped to see a physiotherapist or another body worker who might be able to sort out these muscles stuff.
I know that it is going to be an uphill battle. My doctor repeatedly told me my blood tests came back normal, only my ESR was slightly elevated. He thought the main problem should be my weight, with my BMI reaching 32!!! I know that I am huge, and I struggle keep it off. It is an uphill battle. What I got was a referral to see a dietician instead. I really wanted to tell him, this is not really what I need now. I need to sort out those cramps. Exercise was suggested. I told him I walk a great deal. No that was not enough; I needed to go to a gym, he said.
I did not argue with him, though I long to tell him that it was what I tried to do, and I always get worse because of it. I cannot afford to keep on getting flares, one after another because of gym work!
Technorati tags:Health,medical research, fibromyalgia, chronic pain

Tuina for my fibromyalgia

I hope that I am doing the right thing for my fibromyalgia or chronic myofascial pain, whatever it is. Next week, I hope to find some $$ for a good old deep tissue massage, Chinese style- Tuina. I believe in Tuina more than any other forms, as Tuina work on exactly the same points that are sore for fibromyalgia. Who knows, the Chinese might already know about all  these tender points, which corresponds with the acupoints in Chinese medicine. Tuina sessions can be painful, but it works fine!
My only complain about Tuina is the difficulty of finding a good, properly qualified practioners. As Tuina works on acupoints, I want someone who has a good understanding in the Chinese system of acupoints, and work towards balancing the system. The so called acupressure practitioners trained in many western countries, only know very little about these, having attending a few weeks of courses and so on. I am lucky to get one that was trained as a TCM doctor in China, and specialise in Tuina now. It is Expensive, as much as my one weeks’s grocery bill for a 45 minute session, but it is the kind of money that I would part with.
If I get to go next week, I hope that the Tuina therapist would find less tender spots during the massage. To me, that is a great indicator of my progress in fibromyalgia.
Between amitryptiline and Tuina to treat fibromyalgia, Tuina wins hands down!

Stretching works for my fibromyalgia... I think.

Meanwhile, I must say the stretches works. I can gradually feel less strain and pains when I extend it to the max range of motion. I begin to be able to hold it for a longer time, and cramps are getting less. I stretch based on what I had learned in my pilates class, and I know I need to know more. I am gonna to get a good book for this. Getting personal trainers or joining another class is not an option- I am $$$$ drained.

I just do simple stretches first thing in the morning, for at least 15 minutes. I stretch, then snooze a bit, then stretch again. This gentle way of waking up seems to be doing me good! Lots of good. If I find tight or crampy muscles, I just give them a massage. I finished my body butter and lavender oil in 2 weeks.
Before I sleep, another 10-15 minutes again, depending on how much I can manage, ie how tired I am.

Related post:
Fibromyalgia and Chronic Myofascial Pain: A Must read!!!

Technorati Tags:
Stretching;Coping strategies ; chronic pain; fibromyalgia; chronic fatigue

More on disease mongering and drug discovery

An article entitled “Drug firms accused of turning healthy people into patients” in Guardian talked about “disease mongering” tactics used by the pharmaceutical companies. How much do you think they do “disease mongering”?

I have previously wrote about these issues, which really concerns me in a previous entry: The story of drug discovery(ies) . I am concerned because this “disease mongering” thing turn sympathetic people into sceptics, and make people turn a blind eye to genuine diseases which need real attention!!!

The Guardian news report also talked about the tactics used by drug companies to create diseases like erectile dysfunction, restless leg syndrome and bipolar disorders, diseases which are currently “ mongered”.

These are excerpts from the article:
“Disease mongering exploits the deepest atavistic fears of suffering and death," said Iona Heath, a general practitioner at the Caversham Practice in London who contributed to the journal. She added: "It is in the interests of pharmaceutical companies to extend the range of the abnormal so that the market for treatments is proportionately enlarged."
… "Informal alliances of pharmaceutical corporations, public relations firms, doctors' groups and patient advocates promote these ideas to the public and policy makers, often using mass media to push a certain view of a particular health problem."
In one of the reports, Dr Joel Lexchin, a drug safety expert at York University in Toronto, alleges that Pfizer, the maker of Viagra, devised ways to "ensure that the drug was seen as a legitimate therapy for almost any man", and "took steps to make sure Viagra was not relegated to a niche role of just treating men with [erectile dysfunction] due to organic causes, such as diabetes or prostate surgery".
The message from adverts and Pfizer's website, "is that everyone, whatever their age, at one time or another, can use a little enhancement," he claims.
In a statement, Pfizer said it "only promotes prescription medicines to healthcare professionals and only in line with its licensed indications. Pfizer does not promote any of its prescription medicines to the general public and does not recommend, or promote the use of Viagra, outside of its licensed indications."

YOU got think your way out to wealth again!

I used to view my own humble background with a little bit of self-pride, and never ever saw it as a stumbling block. I have grown up thinking that as poor as you are, you can still live with dignity, your hard work with be eventually rewarded. How naïve I was. That might be still true in many parts of the world, particularly in the academia, and when you are still a student. But if you are working in a competitive industry, you are in for trouble by exposing your weaknesses.

There are good bosses and bad bosses, good colleagues and also those that must have originated from hell. Expose your financial burden and weaknesses, and soon you will find yourself landing those tasks that nobody wants to do. You are chosen because simply, they don’t think you can afford to walk out of the door. Your study loans, mortgage etc etc ties you down.  They know that you will be able to take more before calling it quits.

You can say you are poor (but please do in a joking manner), but never say your family is poor. They are seen as your potential supporters! What will they do to a soldier in a battle ground when they know that the general and the battalion is weak? You will not be shown any mercy. And instead of spending time checking the internet to compare prices and see how you can save some pennies; check recruitment agencies, training and business opportunities and things related to your work instead.

The sooner you climb your career ladder, the better off you will be! Those pennies that you save can easily be made in less than hour in your new job or business.  

And on the day you submit your thesis, remember; stop thinking how you can save the pennies, and think how you can make more money! Focus on the big issues!
    

The story of drug discovery(ies)…

Ever wonder how drugs are always discovered in a timely manner these days, ie people NEEEEEDDDD them most? It almost seem like when you need a drug to treat a disease, a drug or treatment would some up with just a snap of the fingers.

When those big boys know that they are very near to finding a new “cure” or treatment, a new disease will be “highlighted” (I am “polite”, broke and don’t want to be sued. Some brave and cynical souls would just say “CREATED”). They got the $$$, well-oiled PR “machines” (“factory” would be a more appropriate word?) and are veterans when it comes to lobbying, or “bring to attention” , “raise the awareness” (whatever you call it) about “important cause”.

Of course, these are done discreetly. Reports will pop out one by one in the papers (Is it always a coincidence that journalists are suddenly so passionate about a disease???), highlighting the patients’ suffering and how their quality of life would be impacted. There will be stories on the economic impact, the social burden etc etc etc.


Patients and families will talk (and cry) about it on tv…Experts will come forward and talk about it.. etc etc etc. And when we are all sympathetic to these poor people who have to suffer from such a terrible, unforgiving disease, suddenly, very suddenly… surprise, surprise! There is good news!

Oh, thank goodness, some brilliant “scientists” announced a new breakthrough! Now, if you have that horrible disease, there is hope! Thank God! (If you don’t believe in God, thank those great scientists!) They have just announced in a conference (the “scientific paper” will appear in a “top medical journal” soon, shhhh… “after the agreement” about distribution and reproduction costs etc), that they found a miracle drug, a very effective treatment which works for this horrible disease!!! This treatment might be available for all, to all you poor sufferers; very, very soon; IF, only if those guys in the agencies are not sleeping on their job or creating unnecessary red tapes. Bureaucracy! Ahhhhh, this is what preventing people from accessing these miracle drugs and suffers unnecessarily.


Shoot those guys. Write to papers and demand for it! Talk to your MPs! YOU, deserve it.Politicians (I wonder if they understand what “statistical significance” is, and if they even read the abstracts of medical papers) won’t be left out. Very soon, they will issue statements etc etc etc…After all the hoo-hoo and hah-hahs, some chap, usually the fella who happens to pocket one of the biggest pay cheque in these agencies, will announce that they will “expedite” this process. Patients, doctors (Hurray, one more group of patients to see and prescribe for!) and the big guys will wait for the drug to come to market.

After some waiting, and there is still no drug in the market, the patients will ask “Why? What happened?” Fingers will be pointed. That fella who announced that he would “expedite” the thing, will be called again to answer. Somehow, somehow everyone will get the conclusion that it was just another big fat lie.

They were slow! Maybe they were plain stingy. Approving may mean that the government might have to pay for one more drug! (Err, why don’t people question the quality of the evidence?) The big guys and the patients are the victims. No sale, no $$ to put out more trials! How to get conclusive results if you don’t let more people “use” it? (It is a perfect world, isn’t it? When guinea pigs pay to be tested?)

More reports on papers, more meetings between that fella’s dept and the big guys. Patient groups join in. Doctors won’t be left out, too! This goes on and on for a while….In the mean time, something else caught our interest. Maybe it is another “Paris” thing, or may be someone is “cruise-ing” to another woman and baby. (Anyway, we all still wish these poor patients well, and curse those guys who are sleeping on their jobs.)

One morning, or one night, when you tune-in to the news:“Breaking news! Drug XYZ is finally approved by agency ABC for disease X, thanks to the relentless lobbying of patient groups, doctors and the big guys”.Hallelujah! (The Christians say!) Oh-mi-tho-futt! (The Buddhists chanted..) Insya- Allah! (The Muslims cried!). People with disease X now can get XYZ from the docs!If you have disease X, you shed tears of joy.

If disease X happens to be restless legs syndrome, I would be calling my husband (never mind if he has it, or he doesn’t).I will ask him to make an appointment to see our doc, get examined and get put on drug ABC! Since it is “too new” (and too damn ex!) to be covered by medical insurance (damn those guys), I would scrimp and save so that he could have this latest medical treatment. In the mean time, I will bombard the insurance guys and newspapers, demanding for it to be covered.

Hmmm… am I dreaming too much? I am sleepy again? Must be the medicines I have taken…I know from the amount of attention given to fibromyalgia or chronic fatigue syndrome in the medical journals that there isn’t going to be a big thing soon.

Maybe, just maybe, they would find a treatment for something else (eg; RLS), and who knows, they might tell you that if you treat this, then your FMS will be better.And when that happens, let’s rejoice and herald the new dawn of “family medicine”. By treating my husband’s RLS, or whatever else that makes him move or make noise when sleeping, I would sleep better. When I sleep better, my fibromyalgia will be better! Hallelujah! Oh-mi-tho-futt!p/s: Somebody please, please e-mail to tell me how to say “thank God” in various languages. When the “new dawn” comes, I would be sooo soooo sooooooo grateful, that I would want to cite “Thank God” in every available language, to thank “The God” of every existing religion on earth.

Technorati tags:Health, Drug discovery ,Drug, medical research, fibromyalgia,    

Fibromyalgia and Chronic Myofascial Pain: A Must read!!!

Excerpts from an article by Devin J. Starlanyl © 2004

Title of article: Fibromyalgia and Chronic Myofascial Pain: A patient review

Isn't the following familiar?

in page 8,

"Some patients with multiple myofascial TrPs were denied any treatment or adequate treatment for pain because they did not have 11 of 18 tender points indicative of FMS. Their doctors did not recognize myofascial TrPs. They thought erroneously that trigger points were part of fibromyalgia, and much of the literature reflects that lack of knowledge. Research indicates that patients who do not yet have the 11 of 18 tender points may benefit from aggressive pain control to prevent further central sensitization. Some of these patients developed FMS that might have been prevented had they only received adequate care. Some doctors tested for pain on areas that were not part of the accepted FMS tender point diagram and pressed myofascial TrPs instead. When the patients reacted, they were accused of malingering."

And this the following is kind of like "darn! Why I suffered needlessly?" I was so "hardworking" is doing exercises, and I felt terrible after all those efforts. Exercise! Lose weight! No one, including my family members were sympathetic with me, when I thought those excercises I did was killing me. Just look at what it says here...

"One doctor had noted that the patient required a physical therapy stretching and strengthening exercise program. A later comment indicated that the patient reported that the patient had given the physical therapy program her best effort but it did not give her the anticipated help. Some patients dropped out when work hardening and strength training programs caused extreme worsening of undiagnosed TrPs. They were then called noncompliant and in some cases their insurance companies refused to pay for the program, so they went back. They became disabled. Delayed reactions to overworking stressed muscles were common. One patient stated “If I overdo it I pay for it for four days, and the second is the worst.”

I really recommend the article to anyone which the nagging suspicion or have been diagnosed as a possible FMS patient. There is so much that you could identify with (and with -not). I think it is crucial we distinguish clearly between CMP and FMS. These two spells a very different approach in management and also the prognosis. My doctor is going to get a copy tomorrow!

Technorati tags:
Health,medical research, fibromyalgia,
chronic pain

I found a good Fibromyalgia book! (Finally)

I have been doing quite a number of readings since a year ago, when fibromyalgia is not just a myth, but a reality. I have borrowed so many books from the libraries. At first, almost anybook with Chronic Fatigue Syndrome or Fibromyalgia written on in would be brought home, nevermind how "predatory" the title sounds.

Many of these books are so "predatory", that I gave up picking up any book related to FMS after a while, prefering to turn into WWW instead. If I dislike what I read, I just need to click a button.

I call them "predatory";on the pretext of "informing", and helping us, lots of advice and rules are spouted out. I cannot imagine why so much rubbish could be shoved down our throat. I stopped reading. ENERGY IS A RARE AND PRECIOUS thing for us, not to be wasted on people who write to earn out of our misery!

It is through the internet, I found out about Devin J. Starlanyl's works. There is a website; www.sover.net/~devstar which provides the information-FREE, although you got to need the book if you want to find out more. She wrote an excellent book called Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual. When I read this, I was like " yes, this is me", "yes, she is correct", "oh, I should have checked this out". Because of her, I am moving in a new direction, and looking into chronic myofascial pain.

I must say, I had printed those information out and chucked it aside for a long long while. I did not expect much to gain from it. It was one of those terrible nights, a week ago, when I was wide awake in pain that I read the print out from the web again.

What is the impact so far??

There is lots to do, and lots to explore. I definitely need to get CMP vs FMS sorted out! The prognosis, or future which holds for me would be soooo different! However, I can only have baby steps now.. (cos my energy is so low!!!)

The first step I do now is stretch , stretch and stretch! And I think it helps!!! It helps tremendously. I stretch the first thing I wake up, and before I sleep, on top of those little stretches here and there. The "wetsuit" feeling and pains has lessened, that is for sure.

There is lots more for me to learn about her points.I got to read and reread those stuff a few more times! Her book is a worthy investment.

Not having fibro? Hmm......I thought of Viagra...

When I was newly diagnosed with fibromyalgia, I had an interesting conversation. But considering that I am so broke now [i.e. I don’t have $$ to hire lawyer if sued], maybe I imagined it all.

Someone: I think you should join the trial.

Me: Me? Why? No thanks. I don’t think it would work for me. I don’t have that kind of pain.

Someone: [A little irritated]. You have pain all over the place right? It is supposed to work. The preliminary results suggest that it works very well for fibro, you know?

Me: [“Very well?” Oh, come on, I read those…] Well, maybe it works for other people. I know the difference between these two types of pains, and I read up on the mechanism of action of X, and some other reports. Don’t think it is for me, thanks anyway.

Someone: [Getting irritated] It should work if you REALLY have fibro. If it does not work, then you do not have fibromyalgia. Maybe you are just stressed-up.

Me: Oh? Really? [^*&+@%*^&!!!!! If Cialis or Viagra does not work for you, congratulations! You might be just stressed-up, and have no impotence. Just loosen-up, and it will STAND-UP!]

Errr… I am not a dirty-minded or foul mouthed kind of person, but the conversation with that person (and the settings at that time) really made me thought of these things that, luckily I did not say aloud. Or maybe, I should have given that fella a piece of my mind.

Drug, fibromyalgia,

Down time… again.

If I were a computer system, I would be considered terrible unreliable, cursed by all who use.

Since yesterday, I am down, again. Perhaps I am paying back for my over enthusiasm, for working on a Sunday. Or is it because I went for a trip last weekend, and did not recharge properly as a result? Is it the beef? That little piece of minced beef in the half-priced lasagne which was on offer on Saturday?

Whatever it is, I am trying to pin-point a reason, looking for a fault. (I have to, because people will ask me WHY I am triggered this time, better have some reason handy..) I even suspect that it was my husband’s terrible snoring and restless legs, which kept waking me up in the past few days. I really suspect that he has restless leg syndrome. Restless leg syndrome is no joke. It had been reported to be associated with sleep apnoea, fibromyalgia or even chronic fatigue syndrome. I won’t be surprised if it is the “next big thing”, in fact, as there are pharmaceutical companies who are actively testing a “cure”.

Hmmm... I am in a sarcastic mood. Suddenly feel like writing about this restless leg syndrome (RLS) thing, or rather the story of the “discovery” of the drug for it. I suspect that in the next two years, you will hear more about it than fibromyalgia (shhhh….insider news say that they are v.v.close to something for RLS), unless they found that pregabalin would work for the “neuropathic pain” (what makes these intelligent people think that it is neuropathic??!!!) of fibromyalgia as well. Hmmm….


Technorati tags:
Drug, fibromyalgia,

The story of drug discovery(ies)…

Ever wonder how drugs are always discovered in a timely manner these days, ie people NEEEEEDDDD them most? It almost seem like when you need a drug for a disease, a drug would some up with just a snap of the fingers.

When those big boys know that they are very near to finding a new “cure”, a new disease will be “highlighted” (I am “polite”, broke and don’t want to be sued. Some brave and cynical souls would just say “CREATED”). They got the $$$, well-oiled PR “machines” (“factory” would be a more appropriate word?) and are veterans when it comes to lobbying, or “bring to attention” , “raise the awareness” (whatever you call it) about “important cause”. Of course, these are done discreetly.

Reports will pop out one by one in the papers (Is it always a coincidence that journalists are suddenly so passionate about a disease???), highlighting the patients’ suffering and how their quality of life would be impacted. There will be stories on the economic impact, the social burden etc etc etc. Patients and families will talk (and cry) about it on tv…Experts will come forward and talk about it.. etc etc etc.

And when we are all sympathetic to these poor people who have to suffer from such a terrible, unforgiving disease, suddenly, very suddenly… surprise, surprise! There is good news! Oh, thank goodness, some brilliant “scientists” announced a new breakthrough! Now, if you have that horrible disease, there is hope! Thank God! (If you don’t believe in God, thank those great scientists!) They have just announced in a conference (the “scientific paper” will appear in a “top medical journal” soon, shhhh… “after the agreement” about distribution and reproduction costs etc), that they found a miracle drug which works for this horrible disease!!!

It might be available for all, to all you poor sufferers; very, very soon; IF, only if those guys in the agencies are not sleeping on their job or creating unnecessary red tapes. Bureaucracy! Ahhhhh, this is what preventing people from accessing these miracle drugs and suffers unnecessarily. Shoot those guys. Write to papers and demand for it! Talk to your MPs! YOU, deserve it.

Politicians (I wonder if they understand what “statistical significance” is, and if they even read the abstracts of medical papers) won’t be left out. Very soon, they will issue statements etc etc etc…

After all the hoo-hoo and hah-hahs, some chap, usually the fella who happens to pocket one of the biggest pay cheque in these agencies, will announce that they will “expedite” this process. Patients, doctors (Hurray, one more group of patients to see and prescribe for!) and the big guys will wait for the drug to come to market. After some waiting, and there is still no drug in the market, the patients will ask “Why? What happened?” Fingers will be pointed. That fella who announced that he would “expedite” the thing, will be called again to answer.

Somehow, somehow everyone will get the conclusion that it was just another big fat lie. They were slow! Maybe they were plain stingy. Approving may mean that the government might have to pay for one more drug! (Err, why don’t people question the quality of the evidence?) The big guys and the patients are the victims. No sale, no $$ to put out more trials! How to get conclusive results if you don’t let more people “use” it? (It is a perfect world, isn’t it? When guinea pigs pay to be tested?)

More reports on papers, more meetings between that fella’s dept and the big guys. Patient groups join in. Doctors won’t be left out, too! This goes on and on for a while….

In the mean time, something else caught our interest. Maybe it is another “Paris” thing, or may be someone is “cruise-ing” to another woman and baby. (Anyway, we all still wish these poor patients well, and curse those guys who are sleeping on their jobs.)

One morning, or one night, when you tune-in to the news:

“Breaking news! Drug XYZ is finally approved by agency ABC for disease X, thanks to the relentless lobbying of patient groups, doctors and the big guys”.

Hallelujah! (The Christians say!) Oh-mi-tho-futt! (The Buddhists chanted..) Insya- Allah! (The Muslims cried!). People with disease X now can get XYZ from the docs!

If you have disease X, you shed tears of joy. If disease X happens to be restless legs syndrome, I would be calling my husband (never mind if he has it, or he doesn’t).

I will ask him to make an appointment to see our doc, get examined and get put on drug ABC! Since it is “too new” (and too damn ex!) to be covered by medical insurance (damn those guys), I would scrimp and save so that he could have it. In the mean time, I will bombard the insurance guys and newspapers, demanding for it to be covered.

Hmmm… am I dreaming too much? I am sleepy again? Must be the medicines I have taken…

I know from the amount of attention given to fibromyalgia or chronic fatigue syndrome in the medical journals that there isn’t going to be a big thing soon. Maybe, just maybe, they would find a treatment for something else (eg; RLS), and who knows, they might tell you that if you treat this, then your FMS will be better.

And when that happens, let’s rejoice and herald the new dawn of “family medicine”. By treating my husband’s RLS, or whatever else that makes him move or make noise when sleeping, I would sleep better. When I sleep better, my fibromyalgia will be better! Hallelujah! Oh-mi-tho-futt!

p/s: Somebody please, please e-mail to tell me how to say “thank God” in various languages. When the “new dawn” comes, I would be sooo soooo sooooooo grateful, that I would want to cite “Thank God” in every available language, to thank “The God” of every existing religion on earth.

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Health,Drug discovery ,Drug, medical research, fibromyalgia,

The four seasons of my life

It is not sunny, breezy warm day, every single day. There is the much anticipated spring, the warm and sunny summer, the retiring autumn and the chilly, sleepy winter.

If I see my life as having four seasons, then I can be confident, as confident as Maria when she sings “I have confidence that spring will come again!”. I will no longer dread the “winters” so much anymore, no matter how long or chilly they are.

My mum, although not very educated, read very little and never stepped out of her country of birth, have this surprising believe that if you live in a country with four seasons, you will be more creative. Temperate countries produce more creative thinkers, writers and artists. She thinks that people will be affected by the change of season, the scenery, the temperature and conditions, and be inspired to think more diversely and creatively as a results.

So, should I rejoice that I have “four seasons” in me?

Maybe it is somewhat true, when I am confined to my room. This room has a view of the sky (my previous room has no view of the sky, I could only see my neighbours) and the birds flying across the sky. Words, new thoughts, everything… they just flood in. like a dam that has been breached.

It is when I am not supposed to write, to use the computer so much (It hurts!!!!) that these words and thoughts will flood in. Most of the time, I would let them drift about in my mind, like the mist in a foggy day while I lie in bed, drifting between consciousness and the relief offered by sleep.

Of course, I do feel that these are wasted, since it is not captured. I can’t recall all that I thought of when I am well again. At best, I have just a very faint idea of what I had thought, like I imagined I might be famous one day, if all these creative juices are put up in my blog and get spotted by some publisher last night. This morning, I remember seeing my own reflection in the hand-held mirror and was shocked about how ugly I looked. I wondered if my husband regrets marrying me. The girl whom he had known and fell in love with was pretty, witty and intelligent. He had fought off at least three or four suitors to win her heart. But now… Ahh.. the “rain” is here…

I managed to chase the “rain” away, thanks to the internal “sunshine” that I am born with.

I have drifted away from what I want to write. Now I must come back.

Back to the seasons. I know that in a few days, (or a few weeks) I will be better again. Fibromyalgia is not progressive. So, “Spring” will come again.

Out of a sudden, a strong wind appears from nowhere, and brought a fresh splash of rain. The rain was heavy but short. Thanks again to internal sunshine. (I hope that it never runs out)

Through the rain, I see how people with fibromyalgia, rheumatoid arthritis and all these recurring and relapsing diseases could be “associated” with depression. (Nothing new, I understood already). I saw a limping man walking pass. And suddenly, I strongly understand why these people receiving social security or “benefits” and behave so “shameslessly”, so demanding. As if they deserve, it is their right to receive money and all the charity of good hearted people. Many of them don’t even thank others who help them, as if the world owed it to them.

I understand now. I strongly understand now. They are no aliens, weirdos or ungrateful scums. Just like you and me, they have pride, they have a sense of self-pride. I am sure most of them would like to be self reliant, have a job, and hold responsibilities like everyone else. But when fate decides other way (no, I am not finding excuse for myself), when you find yourself, no longer able, like everyone else, work, be dependable, be reliable and contributing to something (other than statistics of jobless or sick people), the sense of uselessness in just so crushing, and humiliating. It would crush even the most confident, self reliant people on earth.

Now at this stage of my thesis, I would really want to apply for a job, but I hesitate. One, I don’t know how to ask my supervisor and thesis committee to be my referees, to vouch for me, when I am always falling behind in my work. I don’t think they will support me applying at this stage, considering the rate I work. Secondly, I don’t think they can support my application without lying. The big fat fact is I am unreliable. I am forgetful. I can’t cope with the stress which the positions requiring my qualifications or experience would require. Thirdly, I also can’t simply apply for a position that is way too much lower. People will definitely be very suspicious. Will you still hire me? If I tell you that I may need a few days off with just a day’s notice? What kind of job would allow me to come and go, as and when “I like”, and allows me to take days off? Forth? The most negative thought is if I hold a job, and get fired because of my health, will I ever find the confidence to stand up again? Will I still believe that spring would come again?

Accepting your lot, (if you believe) as allocated by fate is not going to be easy, when you have worked so hard all your life. Even though I come from a family where I have always been taught to accept what Fate has arranged, I find it difficult. In fact, “very difficult” would have been an understatement.

I am not sure what kind of other things will convert people from my stage, trying hard to figure out how to fit in and be self reliant, to thinking that is a “right” to receive and receive. Anyway, I can’t think, or type anymore. I am getting foggy (again) and my hands hurt…

Time to accept that this is “winter”, and time to “rejuvenate”!