If the patients say it is good....

.. it is good!?

It is interesting how the BMJ article on Alexander technique generated so much discussions both on the internet from medical communities and at work.

There are the people who call it another crappy research, and another demanding that it needs to be proven scientifically. Does the current science knowledge base knows everything there is to know? Can't people have a little humility and accept they may not know all yet?

While this study is not perfect and not the final proof that Alexander technique may be beneficial for patients with back pain, it is a small step forward. I find it really a case of double standard when criticisms such as lack of double blinding came into play. How many surgical procedure studies have been conducted as double blinded studies? It is not a case of being lax with evidence based standards of complementary medicine, it is a case of comparing the evidence standards for interventions of different nature and make a sensible judgment out of it.

Declaration of interest: A rheumatoid arthritis and fibromyalgia patient who had benefited from Alexander technique.

14 days since the DIP started to swell..

It had been 14 days since my DIP on my ring finger started to swell. I remember really "noticing" it on Thursday, 5th June, when it became painful at work.I was probably there since Wednesday. As usual, before any "symptoms" started, I was drinking like a parched camel finding an Oasis. When I weight myself that day, I noticed I "put" on 2.5 kg in 2 days. Clothes seemed tighter, and shoes - i need to get my "big" shoes. (I keep shoes of a few sizes. Yes, RA is a perfect excuse to buy shoes).

It was a pain. I ran out of diclofenac. My rheumatologist refused to prescribe me new ones- she said "I did not need them"- that was what the nurse told me. Well, she is the doctor, therefore she was always right. My standby supply of ibuprofen ran out on Sat and I had to go and get it from teh supermarket!

Added a "subscribe" button

I have added a button for Google feed, so that any publishing from this site could appear on your Google page. I know a couple of you do pop by regularly. Thanks for your support.

I must apologise that I do not write as often as I wish. There is a great deal of energy preservation going on :) Hopefully, the button is useful.

Getting up is hard to do..getting to work is a military plan

Getting up in the morning is not easy.

That is an understatement for someone with rheumatoid arthritis.

How would you feel, if you wake up every morning feeling stiff and sore all over the place? You might also feel like you need a few more hours of sleep. That sense of "tiredness" is completely different from the "tiredness" that most people have.

The first step of the day for someone like me is most likely greeted by pain.

Quite often it takes me a good 1/2 hour before I could take my "first step" in the morning. A good one hour or more before I could walk to the bus-stop. And I have to plan. Plan such that I could avoid the peak rush hour. Either go slightly earlier than everyone, or later. AVoid the trains which would reach the central business district between 830 to 9 am. Avoid the buses which would take people to the trains station so that they could catch these trains. Plan. Plan. Plan.

Perhaps why that is why I was awake at 5 in the morning. I woke up before the alarms rang. Probably worried about getting to work. I have an important meeting at 10 today, and I must not must not be late. I am thankful that the current employer really enforce the flexi time policy, and respect the core hours stated. No important meetings before 10 am! Hurray.

If I am stressed enough to get up at 5 for a meeting at 10, imagine what my life was when my former employer liked to have meetings at 830am, and thought a 9 am meeting a big compromise for my sake? And I remembered when traveling with her, she was unhappy that I was down for breakfast only at 7.15 am, when I should have been there at 7 (but really only need to be there at 8am?)

I believe I am not alone. As I type this, there must be thousands of others people with RA, making significant but understated efforts just to get to work. Just to work like a "normal" person. Out of all these people who made the efforts, there may be many who still could not get to work "on time", simply because the stiffness decided to last longer than usual on a particular day, or limitations in the mode of transport.

The governments should look at ways to allow some leeway for patients like me to do what we want to do. Getting to work. Most patients with RA want to work- if only we could, we would.

Two days after another gym session

I spent another 45 minutes in the gym 2 days ago.

Now I see "results" of my workout:

Joints: swollen.
Muscles: sore.

Sigh. Sigh. The body is broken but the soul is not. I will have another gym session tonight! Perhaps all I need is just a little sports massage.

What keeps you awake at night?

As I am preparing for another interview, and struggling with " to tell or not to tell", I also had to prepare for some answers to questions like "why do you want to do this"?

My two previous jobs were more in the commercial side, and people are often skeptical why you would give up jobs with more earning potential and "glamour" factor for less glamorous ones. And bear in mind, the person sitting across the table, who is fielding you the question, may have been trying to break into where you came from-unsuccessfully. In sort, there are skeptics out there who need to be convinced that you are sincere.

Why do I want to make this move? It is difficult to describe. It is a kind of feeling that I have to do something more "meaningful"? Something more meaningful, esp when it may benefit other people with various types of illnesses? If you know that I had been really ill, and I am still not feeling my best, you may "understand". If you are like me- been through hell , you will think what my career choice now is perfectly natural. But how would you know if I can't tell you about my colourful medical records?

How do I describe?

What keeps me awake.

Yes, I think I have to make a move, because I did not like what kept me awake. Apart from the aches, pains, and "ouch, I/he-hit-my-badly-inflamed-joint(s) moments", things at work could keep people awake.

While I was doing a job which directly impact the patients, my worries were where can I find the support ie money to do it. I would toss and turn, trying to find ways to make things work better etc.

While I was at the commercial sector, after proposing or doing something which I am sure benefit other patients, I had to ensure what I do would have some commercial benefits (anything without commercial interest should be aborted asap- no hope!). I would also be awake wondering whether my "great" idea is congruent to the objectives of the person(s) making the decision. You got to know their "personalities", their personal priorities aka agenda. Being kept awake by these things is totally worthless and useless.

I did not like what kept me awake at the commercial sector. I did not like lying awake wondering about meeting people's or a company's money making or a person's career boosting objectives. If I were to stay awake, I would prefer being stressed about how to benefit the patients. As an "old woman", I would not allow my beauty sleep being taken away by concerns about lining people's pocket.

Will a normal, healthy person understand my "what kept me awake" argument?

Fibro---> Bruises?

The cold had probably brought on my fibro. Now I have about 15 painful points, at least. My forearms are bruised, after I tried to massage myself. The bruising seems to be part of my fibro.

If I dun massage, I feel that my muscles are tight and tender. If I massage I look like a battered wife.

This much energy........

I only have <-this-> much energy.

Abide says she is the queen of denial.
So am I.

Sometimes I refuse to admit that I am sick. That managing 3 full hectic days of work a week is a miracle. Completing my PhD is a miracle. What more should I ask. I should stop all these denials, and perhaps admit that I am sick. Defeated.

But it is difficult to do less, when statistically you know you will probably live shorter number of years than most people. The respected journal, Rheumatology has a debate on What kills RA patients? in its editorial.

I have long known that normal life expectancy numbers don't hold true for me. If life gotta be short, why not let it be a burst of brilliant firework?

But fatigue brings me down to earth again. If I overspend, I will pay for it, with interests. True for credit cards. True for energy for a fibromite cum RA patient like me.

I dont care about debates of "cure" for RA. My question is, "is there a cure for fatigue"??

What works for my FIBROMYALGIA.. so far?-Dec 2006 update

I am updating this from my June 2006 List.
After more than 1.5 years since my diagnosis, I am getting my hang of managing my fibro.
I used to think that my education is wasted, since fibro, ra and all these health problems prevented me from working full-time, let alone in my trained profession. 1.5 years later, I realise how lucky I am. It is almost I am trained to handle my own conditions, as doctors (except a few angels), have failed me desperately.

Things that make me feel good, or help to stop an flare in its tracks...

1) Avoid beef and red meat like hell
Of course this has no "scientific prove". I was a non-believer in food-RA/FMS link when I noticed that I get flares after taking beef, or lots of pork. No more whole Big-Mac for me, just a small bite now. The pain I get is not worth the bite.

2)MASSAGE, especially Tui Na or acupressure
I have since heard from others that deep tissue massage works well too. A good acupressure or Tui Na practitioner is really hard to find in Europe/US. I will try out deep tissue massage and compare how it goes.

I have also purchased a "massage belt"-which is essentially one vibrating thing (image from osim.com). I bought one from OTO (another brand). These are hugely popular in asia now for "slimming", but I have since found better use for it. I use it on my thighs, calves, bums-places which are "fleshy" enough. I slap on my NSAID or Tiger Balm on those sore/painful/tight areas and run the machine. It works pretty well, and save me many trips for a massage!





3)Alexander Technique lessons and "practice" at home
AT is probably one of the MOST USEFUL thing I have done for my fibro!

4)Stretching!
Done every morning, without fail. It can be painful, especially when my RA flares. I use my massage belt to warm up my muscles before I stretch.

5) SLEEP
The most important thing to have, but the most easily affected/least controllable factor for me. When fibro is hitting, everything becomes painful and deep sleep is really a luxury. Sounds familiar to you?

6) Take lots of fish and omega 3 oils, antioxidants when it flares
I suppose it works for me because my fibro almost always come with my RA?

7) Ginseng and Gingko (for my brain fogs and speech slurs)


8) Muscle rubs-esp Tiger Muscle rub or Tiger Balm
Great with massages, and the massage devices to "heat up" and loosen those painful knots/trigger points.

9) Hot bath! (with Lavender essential oil)


10) NSAIDS...
The issues surronding side effect of NSAIDs, or painkillers as a whole has prevented many people from actively managing their pain.


11) Avoid using a LAPTOP!!!! (NEW! Dec 2006)
I am not kidding you! I have resumed working part time, and use a PC in office. It is a REAL difference! A few hours spent on my laptop on my "off days" is frequently more tiring than a full day with the PC in office. I think the way laptops are made and used encourages poor posture. My neck, shoulder, hands and upper back takes the brunt of it. The painful areas around my elbows, shoulder joints and upper next area quickly develop more hard painful "lumps" (as I call them). These are bad enough to cause me to feel dizzy sometimes. After the massage belt, a home PC will be my next investment.

(I took a short break at this point of writing... to do the following...)

12) HOT towels!!(NEW! Dec 2006)
My dear rheumatologist was so kind to check out what works for winter for me. He told me a simple quickie to "defrost" my stiff feet and hands in winter is a hot basin of water. All I need is a kettle, (and someone to help with kettle sometimes ) and a basin. I have since modified it. I use hot water from the tap, and run it into my wash basin. (No kettle, no danger of scalding). Then I soak my hands there. I use a small face towel to soak up some hot water, and put in in other painful areas like my neck, knees, shoulders, elbows etc. Works fine. Only "side-effect" is I find it rather drying to the skin. That is not a problem as I apply Tiger Balm/Bengay Gel/NSAID gel after the hot towels. The heat from the towels increased the blood circulation to the area, and gels get absorbed quickly and works better. Just becareful not to overdo the NSAID gels, as the NSAIDs do get absorbed quite a lot this way. The advantage of this method is you literally have some relief on the tap. You can even do it in your office pantry or toilets.


Others:
Amitriptyline ease a lot of the pains, but I am so fatigued and knock out by it that I will end up able to do nothing but sleeping. I try to stay away from it.

Beware of many things peddled in the internet. Many of these "cures" tried to sound scientific, but provides me with nothing more than a good laugh. Please also beware of people advertising their credential as "Dr" so and so. I know that you could pay US1-2k, and get a PhD in 6 months from some dubious "universities". Some people are out there to make a quick buck out of our pain . And anyone, including myself, would be tempted to "try things out" when we are really really desperate for some escape or route out of the misery FMS and RA could bring.

Technorati Tags:
chronic pain; fibromyalgia; chronic fatigue

Alexander Technique lessons, what if you can't afford?

I think Alexander Technique has helped my fibromyalgia.
And I really hope others will get a go at it. However, lessons are so expensive, and you need quite a number of lessons before correcting yourself properly!

Is it possible to not go for lessons and learn from videos or books?
I think that would be tough, expecially for those muscles and positions that are really bad. I think it is helpful to have someone guide you.

But what if, like many of us,(me included) we are jobless and broke?
We got to start somewhere. Even if we go for lessons, probably we need to learn "fast", as we dont have that kind of money to go for 20 sessions or 40 sessions!

What would help the student to learn Alexander Technique??
I think reading the relevant books help. While arranging a stack of books in the charity shop I am volunteering, I came across and old copy of "The Alexander Principle " by Wilfred Barlow. (Amazon Link)



It has words, words and more words, but I still bought it.

Last few nights, I began to really read it, and started to link what I am taught during lessons and the principles behind it.

Wilfred Barlow is a medical doctor by training, (and from Oxford !!!), so don't expect glossy, "reader friendly" stuff. The approach to this book is a little clinical, ie dry. I could barely go through more than 10 pages at a go(that is for someone who gobble up whole novels at one sitting). It reminds me abit of my student days, mugging my anatomy and physiology books. But somehow, I went on reading it, because it the examples and information is so relevant!!!

The charts and diagrams in the book points out obviously the difference between correct use, and misuse of the body. I also like illustrations on the problems with diagrams of the relevant muscles, as it helps me to visualise acurately which muscle had gone wrong and pay attention to it.

I suggest people reading it before starting lessons, as you will learn more quickly that way. Lessons are not cheap if you need to pay. Or just read it to find out if we are really misusing or bodies. Get someone to take your photos and compare with what you see in the books. May be that is a cheaper way to get something off, before proceeding to lessons.


P/S: Try to get from your local library- My local library has a copy. Or check out Amazon. If you are buying from Amazon, please do consider clicking my link above, as I will get a 5% commission from it, which would help me pay the bills. Thanks!

Related posts:
Make sure the Bra fits!
Alexander Technique-new hope for my fibromyalgia
Alexander technique- feeling benefits after one lesson?
Alexander Technique-second lesson
My limpy fibro progress-My 3rd Alexander Technique lesson

Technorati Tags:
Alexander technique;Coping strategies ; chronic pain; fibromyalgia; chronic fatigue

What works for my FIBROMYALGIA.. so far?

Things that make me feel good?
1) Avoid beef and red meat like hell
2)MASSAGE, especially Tui Na or acupressure
3)Alexander Technique lessons and "practice" at home
4)Stretching!
5) SLEEP
6) Take lots of fish and omega 3 oils, antioxidants when it flares
7) Ginseng and Gingko (for my brain fogs and speech slurs)
8) Muscle rubs-esp Tiger Muscle rub or Tiger Balm (Got to ask around to get it, or get someone to buy back boxed when they go to Asian countries!)
9) Hot bath! (with Lavender essential oil)
10) NSAIDS...

Amitriptyline ease a lot of the pains, but I am so fatigued and knock out by it that I will end up able to do nothing but sleeping. I try to stay away from it.

Technorati Tags:
chronic pain; fibromyalgia; chronic fatigue

Make sure the BRA fits!

After my 4th Alexander Technique lesson, I noticed how strain my neck and upper back muscles were always are. I had always thought the culprit was my laptop. However, in these lessons, you have the luxury to stand for 15 minutes or so, thinking and doing nothing except being aware of your body. I begin to suspect my breasts might be a problem, as the strain was still there while I was standing, and the "heaviness" was there.

By then I learned to be quite "aware" of my body positions, and always felt a certain tightness around my neck, no matter how I "release" it! I am a little too embarassed to ask the AT teacher about my "assets", but decided to check out some new bras, since the bras I have are more than 1-year-old, at least.

I decided to get a new bra, and get a proper fitiing!!

Fitting my bra was tough.

Most women have asymmetrical breasts, and recent studies have pointed out that the more asymetrical your breasts are, the higher risk you have of getting breast cancer!!

Mine was REALLY asymetric! I have only used a professional bra-fitter once; for my wedding dress, and was very embrassed about it. But this time, I knew I needed help!

To my suprise, thanks to the weight gain, I am not a 38D! WOW! I thought! 38D is just what you need to get more backaches and neck aches!

Having to stare at myself at the mirror for 1/2 hour and having problems with bras fitting both breasts properly made me realised that my right breast is much smaller than the left one, and guess what;

My right arm is always in a more " forward" position than the left one, and impinging/indenting/whatever on my right breast.

In other words, maybe my right breast did not have as much space to "grow" as the left one! My shoulders were not "open" enough!

Lots of women may have that problem, the arms, the asymmetry. These could have been aggravated as we pile on more weight after getting these niceties like rheumatoid arthritis and fibromyalgia. Maybe, part of fibromyalgia treatment should include a bra-fitting session!

Related posts:
Alexander 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


Technorati Tags:
alexander technique; chronic pain; fibromyalgia; chronic fatigue