Tuesday, December 23, 2008

The cost of a bath...

Or rather, the extra cost of taking a hot bath..

I need to turn on my boiler for another 1 hour. That equals to 3 units of electricity!

Gosh! what a luxury...

Tuesday, December 09, 2008

Fibroaction UK

I have added the link to a new patient support group for fibromyalgia based in UK: http://www.fibroaction.org/Default.aspx

The support group was founded by Linsay Middlemiss, who had been blogging for years.  This is my favourite website so far for fibro support - it has such a positive vibe there! Plenty of information and actions to raise fibro awareness! 

Check out their events section too. 

Monday, December 08, 2008

Pay people who are ill to stay at home please, would you?

At home today... with an stomach flattening cough, sticky sputum and a nose that can put Rudolf to shame. 

The URTI  infection had triggered my RA and fibro symptoms. I am sore all over the place.  My right wrist is swollen. Last night, my thumb and index finger was numb, and weak, ie pretty useless. thank goodness my left hand is still doing fine. so, dinner was prepared with my left hand, so is this post. 

Did I mentioned about taking care, not to get sick?

Yes I did.  And I took some pretty extreme measures.
  •  i kept myself warm.
  • I avoid the peak hour bus/train. I have resorted to taking an earlier bus, and a later train so that I can avoid crowded carriages. 
  • I have been religious in my rest time.
  • I ate healthity.

And so far it worked. Until a colleague fell sick. 

The poor girl is new and had not passed her probation. Some intelligent person devised the rule that you dont get paid if you take sick leave while on probation. So this girl braved the commute and cold, came to the office every day despite being really sick. On some days she  just tried to stay awake. She was just too busy blowing her nose and coughing to really do anything.  We have tried to persuade her to rest at home, but once she said, "who is going to pay me if I stay at home?" , we all kept quiet. With Christmas around the corner and the economy in shatters, who would want to have less pay? Worse still, we all understand how anxious she must be in passing her probation

She had been sick for a more than one week. Within a week of her illness, the colleague sitting next to her fell ill, and he had to take 2 days off.  Then the colleague next to him fell sick.. and the domino effect passed on. Almost 2 weeks later, it reached me.  Last week, she finaly took sick leave, because her probation period is just over!!! By this time, everyone who sat near her or had frequent work contact with her had already taken at least 2-3 days off.  

I wonder who came out with the idea of not paying people who are sick to stay at home. False economy!

Sunday, October 26, 2008

I had this comment for my post about keeping warm while at home.

"I can't believe you. You are very lucky to be able to do what you can. Some of us fibromites as you call us do not have the luxury of not working. I get my self out of bed every weekday and go to work no matter what pain level or fibrofog level. If I didn't work, I wouldn't have a home, healthcare, or food. If you are going to hurt lying around the house in your toasty socks under a lapquilt, why don't you experience the same pain at a job. My job is very taxing for anyone with fibro, I teach full day Kindergarten in public school in a very low economic area.
Get over yourself. The rest of us are just a bad, if not worse."
Can someone pls explain to me what "get over yourself" means, in this context?  I can't quite understand what Martha wanted to say. 

Did she say I whine too much? I am sure I do - whine a lot. Where else can I whine if not on this blog? This is where I do my whining and crying.

While I do admire Martha's strength to work through all fogs and pain, I would not expect it from everyone. I am not sure what people mean by "fogs". The worst period for me was when I crossed roads and almost hit by car, just couldn't remember to turn the stove off, and could not copy down a series of 6-8 numbers (ie bank account) from one page to another. Walk to work? There were times I walked to the nearby store to get a carton of milk but forgot halfway why I was there, and where I was supposed to walk to. 

I dont believe that you CAN work because you NEED to work. I had been there. When you really can't it means you really can't. Insisting in doing so only put yourself in danger, and you may endanger others too. But I do believe, given the right treatment

Thanks for leaving comments in this blog, and I always look forward to receive your comments, especially if it is someone with fibromyalgia, or living with other chronic conditions.  However, some comments do puzzle me, and cause me to read it over and over again - what are they trying to say? Or perhaps should I suspect that they did not really read by blog? 

Saturday, October 18, 2008

Slow cooker meal : Caribean Chicken

Caribbean Chicken

3 tbsp veg oil
2 large onions, chopped
4 sticks celery, chopped
3 carrots, sliced
500g mushrooms, sliced
2 red peppers, sliced
8 chicken joints, skinned
400g can sliced peaches
400g can pineapple chunks
10 tbsp cornflour
3 tsp paprika
3 tbsp soy sauce
3 tbsp worcestershire sauce
8 tbsp malt/wine vinegar
1 litre boiling water
salt & pepper

Fry onions, celery, carrot, mushroom and pepper in a pan.

Add chicken joints and fry until browned all over.

Drain peaches and pineapple, reserving juice, and add to pan.

To make sauce blend cornflour and paprika with soy sauce, worcestershire sauce, vinegar and reserved juice, add seasoning, boiling water and pour into pan.

Bring sauce to boil, stirring continuously.

Transfer all ingredients to slow-cooker, cover and cook 5-7 hours.

Friday, October 17, 2008

Autumn food - curry

Kicked off the autumn winter food yesterday with curry!!

I was really tired yesterday, and don't even feel like doing my simple (cheat's) curry.  
I decided to make something that is more easy that the simple curry - testing out cooking curry in my slow cooker!

I tried a brand new recipe - with lots of lentils. Food price is going up, honey. At the rate this is going, some adjustments need to be made in terms of food!

These were the  ingredients for a healthy SLOW cooker chicken curry:
  1. 3 teaspoonful of curry paste (I prefer the Thai version)   £ 0.30? from a big packet which cost around £2.5
  2. 3 table spoons of curry power for chicken (negligible cost! - £0.10-0.20)
  3. about 6 drumsticks (or 1 chicken, whichever is cheaper) £1.60 - supermarket's own brand
  4. 6-7 small potatoes (used new potatoes, so that I did not have to peel) - cut them into quarters - 1/3 of a 1 kg pack  which I bought for 50p -£ 0.20?
  5. 3 onions - cut into 8 pieces - £0.20
  6. 300g of dried split yellow peas (this is really really cheap, and a good source of protein. Howver, it might make you more "gassy" - soak in water first if you have the time!) -£0.40
  7. 1 can of chopped tomatoes (because this is cheaper than the fresh ones!) £0.16
  8. 1/2 teaspoon of salt
[Total cost; a maximum of £3.00, I overestimated the cost of the ingredients like split yellow peas etc. I bought a 1 kg packet for probably around 60p when on offer]

  1. Dump everything into slow cooker.
  2. Add enough water to cover ingredients.
  3. Cook on low heat for about 6 hours.

great! Although it is much less oily. 
You could use a preset timer, or cook just before you sleep. 

  1. Using cheap electricity at night!
  2. No sweat at all!
  3. Healthy! This method means no oil for coconut cream, or even milk! Also no oil used to fry the paste.
  4. Kitchen, or wherever you left the pot, would be warm! (Save on heating)
  5. Lentils = cheap protein
  6. Could add more tumeric power - anti - inflammatory!
  7. Could add winter vege like curry and pumpkin.
  1. The curry smell could be pungent! Make sure you leave the pot in kitchen if you do not like it!

Serve with bread or rice!  This pot of curry lasts for at least 3 meals for 2 persons!

Check out other curry recipes on the web!

Wednesday, October 15, 2008

Keeping warm - while at home

Here are some tried and tested way to keep myself warm while at home. 

Keeping the whole house warm is going to cost most that just keeping one or two rooms warm, we all know that.  So, one of the key things that I do is decide where I want to be most of the time, and keep that room warm and toasty.  

In my first winter as a fibromite, I noticed that it did not take too much effort from my small kitchen warm. I guess it is because of all the cooking - making stews, using the oven and boiling water. However, the kitchen was not the most comfortable place to stay for a whole day!

 Therefore, I made these simple changes which helped me to stay warm and not burst the heating bills: 
  1. Bought a slow Cooker , made soups/stews (and also roasts!) in the living room. It made a difference to my small living room. Days with slow cooker around need less "boost" for my storage heaters. The photo in the link is how my slow cooker looked like. You might get it cheaper from a local store!
  2. Boil water in the living room! I brought my kettle into my living room, and make coffee and tea from a small table! Cozy! The warmth from a hot kettle of water helps!
  3. Keep feet warm. This made a lot of difference. I prefer to wear those fleecy socks. Allow my feet total freedom - important for an arthritic patient
  4. Fleece blanket/throws. I put a throw over my shoulder/on my laps when I am sitting down to read etc. I guess it is an old trick which everyone knows.
  5. Yoga Mat - good insulator for non-carpeted floor, and the perfect place to stretch!
  6. To get those cold feet warm-- dance!!! Put on some nice CDs, DVDs and get moving! It is easy to forget moving. No matter how tired, painful, put on some nice, groovy entertainig stuff and just move! - even if it is only for a minute.
  7. The hot towels always worked. particularly useful when you just come in from outside, or when there are sore muscles. I have describedy this before.
  8. Windows, doors - draught excluders etc. There are plenty of these advice about keeping your house warm, and it is useful to check and see what could be implemented.

 these two are ultimate partners

Tuesday, October 14, 2008

Keeping warm in winter- handy tips

Keeping warm in winter is essential. Big temperature changes do seem to cause my arthritis and fibro to flare up.

However, keeping the heating bill down is a challenge. Therefore, I am trying to come up with ways to keep warm this winter!

Sunday, October 12, 2008

Winter 2008 for a fibromite and RA patient

Winter is coming! 

I try my best to sound cheerful about this. In reality, I know that this is going to be a tough winter for most of us. Fuel poverty is going to be a problem for many. Keeping warm. Keeping warm in the face of electricity and gas bill increase. 

As for myself, I am faced with a 50% price hike. If it had cost me$100 per month in winter last year, it will be $150 this year. Factor in the increase in food prices and no increase in income, it will be a tough one. I know I am still fortunate. The economic crisis had hit my family, but one of us is still working now - me. I know this is a pretty unreliable source of income. I just need a bad flare, and that is it!

Ahhh, haven't you heard that opportunities come to those who are prepared for it? Let me rephrase it and say that "Full blown crisis will (hopefully) avoid the well prepared"?

I need to:
  1. secure my income! - ie dun get it flare!
  2. cut my expenses, or at least not let it soar.
  3. get extra income
I need to keep warm, rest enough, and yet not fall sick and have the energy to get extra income. 

Tough, but i have been through worst times! Just look at my 2005 postings!  No reason not to keep my chin up.

Obama for health care? This is what a rheumatoid arthritis patient thinks!

There are many analysis of the pro and cons of the Obama vs McCain healthcare plans, and there is no need for me to even bother to analyse them. Lots of analysis that is pro-Obama and pro McCain

But how about from the perspective of someone who had a chronic, recurrent illness?

How is it like for us?

McCain's plan is no good fo us -people with pre-existing illnesses! No good for people who have recurrent and remitting illnesses. For people like us,  holding down a job is not a permanent feature we can choose to have, it is a priviledge whenever our condition improves or in a remission!

Why do we need a healthcare plan in the first place? It is to provide a safety net when we fall ill. It is not for those times when pa and ma, are both bringing in a decent wage, and all the kids are happy and healthy. The situation now is when you really NEED health coverage, you are not qualified for it, or you cannot afford it anymore.
I almost fell in love with him when he said that health care is a right. I knew that he knows what he is talking about when the talked about his mum haggling over insurance bills and rights on her death bed, while fighting for her life. 

Mc Cain? Give a tax credit? USD5000? Shop your own plans? Giving you choice? Well, that is all great for the educated people with a decent earning. How about those people who are not working? How about those people who are not able to have a full time, permanent job? How about those who already have health problems? Where do you want us to go, Senator McCain? 

I know that by choosing Obama, we are offered a safety net. When ill, we know that we will not completely drop out of the system. We can focus on doing our best to lead a normal life. We want to be well and working. We need a system which allow people to get the health care needed in the most difficult times, and could get back on our feet as soon as possible. Working, leading a normal, purposeful life. 

Vote for Obama? You bet. Let no one drop behind. 

Wednesday, October 01, 2008

Back from back packing!

Yes, I survived the trip, and lived to tell the tale!!

RA patient back packing - woahhhh

Fibromite back packing - this is a small personal victory for me!

I managed to survive with only a 20L back packing for a 10 day trip. My bag weighted about 7 kg, on the days I did not wear my jeans and had damp clothing. Otherwise, it was less than that. Not bad right? Take into account that the places I visited ranged from 25C to 5C! I must tell you that I mastered the art of layering. The art of choosing what clothes to bring, and keeping warm and cozy with a minimal weight of luggage is worth a post itself!

Some days were quite challenging, to be honest. I noticed swellings after a few days of wurst. Red meat spells trouble for me, but at some places, the cheapest, most convenient food (not to mention "safe" ie hot and low chances of contamination!) available is simply wurst or hot dogs, sausages and their cousins. On other occasions, the local food is simply very porky or beefy! This proved to be difficult for me and I ended up eating lots of bread. 

My schedule was planned with discipline. You might argue that that it takes some fun out of backpacking, but I would argue that the challenge makes my trip more fun. 

Any problems? Yes! I had my period. Yucks. Lots of cramps. I felt faint at one point, and so tired that I noticed I fibrofog striked! I simply had to tell my sister that my mind had switched off and she had to read the maps! 

Thursday, September 04, 2008


This will be my first real travel in 6 years and my second attempt to back pack after my rheumatoid arthritis started. This would be the first trip since my fibromyalgia began.

I look forward to the trip with both excitement and worry. Excited, because I will be back packing with my sister, and yet at the same time, I worry about a relapse. Without hubby around, there will be no one to help me carry my bags!

A lot of planning had been put in, so that I alternate hectic and "train" times. Hopefully, those train rides would provide a rest day.

Since a few days ago, my palms have also swollen up and this made work really difficult. Typing and using the mouse had been really uncomfortable and sore. The sad news is I seemed to have put back all the weight I lost in the past month or so. I had been having hunger attacks with will popping those NSAID pills like candies. I hope everything turn up right for the trip

Stiff fingers

My MCP and PIP of my right hand ( and now my left too!) were swollen painful and stiff as soon as hubby went away for a few days for a meeting.

I have left home without a warm breakfast these two chilling mornings. Soaking in hot water seems to help, but I am no where good enough to handle a kettle.

Soldier on. To my colleagues, I am normal. Thank goodness I have always made it a point to be slightly ahead in my work and now I hope no one notices I have to slack a bit these two days.

Tuesday, September 02, 2008

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.

Wednesday, August 27, 2008

New study on alexander technique for back pain - BMJ report

What is already known on this topic
Combined manipulation and physiotherapy-supervised strengthening exercises helps functioning moderately (1-2 activities no longer limited by back pain)
Preliminary evidence suggests that massage and lessons in the Alexander technique might help in the short term

What this study adds

Six sessions of massage, prescription for exercise and nurse counselling, six lessons in the Alexander technique, and 24 lessons helped with back pain and functioning at three months
Lessons in the Alexander technique still had a beneficial effect on pain and functioning after 12 months
Six lessons in the Alexander technique followed by exercise prescription are nearly as effective as 24 lessons

Wednesday, August 13, 2008

I am tired.

This is how I feel, except that I am not so cute.

RA party is in town again.

Enough said.

Saturday, July 26, 2008

Recovery- post massage

I blew some real money on a good massage, and now I ache less, and feel more energetic. A throat infection had thrown things off balance, leaving me totally drained and in pain.

Weekend is my recovery time. There is lots of work to catch up with, I brought home my work.

Wednesday, July 23, 2008

Sardine curry: Very simple and cheap curry recipe

This is what I cooked for lunch. It is a perfect flare day food.

Curry and sardine is a delicious combination and provide two great ingredients for RA patients like me. It is particularly useful when I have a flare, and too tired to cook.

Here is another recipe of cheat's curry - sardine curry

Here is what you need:
1 table spoon of tom yam/ Thai curry paste (see my chicken curry page for photo)
1 can of sardine (or mackerel). It is alright to use whether in brine, sunflower oil or tomato sauce. Personally I prefer in brine/sunflower oil.
Milk - about 50 ml- 100 ml, depending on whether you want it dry or hot
1 small onion-sliced into rings, or diced (optional)

  1. Heat a small non-stick pan, turn to medium heat.
  2. Add a few drops of oil- i normally use the sunflower oil from the canned fish
  3. Brown onion, until it is soft.
  4. Scoop in 1 tsp of curry paste, fry it for 2-3 minutes, until fragrant
  5. Add fish. Fry for less than a minute. Mash it with fork/spatula.
  6. Add milk.
  7. Bring it to boil.
How to eat
  • With BREAD: If dry, (use less milk), this will be a good consistency as a sandwich filler. Add a few slices of cucumber if you like.
  • with rice or pasta: If more wet, it will be perfect as a pasta sauce. Can also scoop this over a plate of rice and serve with a few pieced of cucumber. Perfect.
Time taken: Less than 5 minutes if no onions are used.
Cost: REALLY really cheap!!! A can of supermarket brand sardine is probably the cheapest item in the kitchen cupboard.
Nutrition: High in omega-3 (anti-inflammatory), and contains lots of turmeric. Perfect food for those RA flares.
Challenge:Cutting and peeling the onion. Opening the can of sardine.

RA/fibro tips: I like to use it as a sandwich filler, with sliced bread. I cook more and eat this over two or three meals. Keep in fridge and reheat before eating. 1 can of sardine fills about 3 sandwiches nicely.

What to do when you have a fibromyalgia/rheumatoid arthritis flare?

A flare is not fun. No, there is nothing much you could do. You are sore and painful in many places, fatigue, and perhaps even having some brain fogs. Typing, like what I am doing now, may be quite limited too.

For me, a flare days means I move from bed- sleep or trying to sleep, to getting up to make myself some food (important - hunger creates more fatigue and fog, in my experience), doing something to kill the boredom - read, watch television etc and most importantly, my self-healing rituals. I call them rituals, as there are no scientific basis to most of these. This is the list of things I do

  1. Take my medications - NSAIDS. This helps to lessen the pain and swelling.
  2. Rest a lot - sleep.
  3. Keep comfortably warm/cool. Sometimes I feel very hot during flares, and I will try to keep cool.
  4. Take a hot bath/shower. The hot water relieve the stiffness.
  5. Use hot towels - put it at places where there are taut bands/points. See my earlier post for details.
  6. Acupressure and massage. I usually DIY, if my fingers are alright. I also use other objects to help. I find that the acupressure points are remarkably similar to trigger points. Acupressure is Eastern, while trigger point therapy was developed by Western trained doctor. I found this book by Clair and Amber Davies helpful: The Trigger Point Therapy Workbook: Your Self-Treatment for Pain Relief (Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief). It is less than £10 from Amazon UK, a very good investment.
7. Stretch. This keeps you supple and relieve the stiffness. I normally only do this late morning, after the hot bath, and start with simple moves.
8. Eat well. This can be difficult sometimes- loss of appetite or no energy to prepare food. I eat lots of fruits (get it delivered, or get someone to buy it), or at least drink a lot of fresh fruit juices. I know how difficult this is, especially when the flare is prolonged. Fruits are really heavy and expensive if it is delivered. I also try to make sure I maintain my omega-3 intake- through pills or those tinned mackerels!

(Note...it takes a long time to put this post together. In between, I slept, ate, stretched, and soaked my fingers in hot water. I hope it is of use to others.)

Tuesday, July 22, 2008

Down time

After more than 1 month of this continuous low level flare, my body finally can't take it anymore. I woke up this morning, felling much more stiff, sore and tired than in the past few weeks. I am also coming down with some throat infection. I know this is my body telling me - you to rest.

The warning signs are all there. I won't want to trigger a big one!

So today, i rest at home. Slept. Totally bored. Uncomfortable. I don't have real rest when I am sore all over. Sigh.

I hope I am well soon.

Saturday, July 19, 2008

Fog, fog stay away

Just half an hour ago, I found myself analysing a scientific paper, and developing a structured argument and commentary about it.

It is so late at night, I am awfully tired after a long day, but still, my brain worked! I am a scientist. Yes, I am a scientist. This should be normal??

Yes, and No!

I had this sudden sense of "Hallelujah", "thank God", "Amitaba" "Insya Allah". Awww.. I just wished to say thank goodness/Thank God in all the manners available to the major religions on earth. That is how grateful I am.

I suddenly realised that although I have not been that well these few weeks, and fatigue is affecting my concentration, my brains are still still working! My fingers are swollen (enough to get my physiotherapist who saw me today really concerned and strongly suggested I get a proper occupational evaluation and told me my legal entitlements).

Compare my life now to the days when I faught fibro fogs daily- this is still heaven despite the pain and fatigue. Fibro fogs is the most difficult part of fibromyalgia! That is true, at least for me!

If you are some foggy brain stumbling onto my blog, do not ever give up. There is hope at the end of the tunnel. Or should I say, the sun will shine and drive the fogs away one day?

.. and ahem.. can it say it again? "I am amazing"!!

Thursday, July 17, 2008

Are you well?

This question goes to other fibro and RA bloggers, whose blogs I regularly read, whenever they stop blogging for a while.

I would wonder, are they well? What kept them away from blogging?

Felt better? Discovered more energy and therefore enjoying life?
Felt worse? And therefore desperate for energy, and sanity to blog?

I hope you all are well. I regularly read some of your blogs, and let me let you know that I think of you. Sarakastic mentioned that perhaps not many people read. Well, honestly, I don't expect many people read my blog. I only find time and energy to check others' perhaps once or twice a month? That is already "as much as I can". It all really depends on my energy level.

If you happen to be down.. rest a while my friend. But remember, get well soon and come back!

Yes, I am not feeling well. My RA have been flaring for a while, making me permanently tired. Now my fibro is in town too - keeping me in pain and awake.

Thursday, July 03, 2008

Bruises - is it the RA or fibromyalgia?

Before I my swelling starts, I would notice bruises on my arms and legs. Sometimes they even appear on the thighs.

What cause the bruising? Is it linked to my fibromyalgia or rheumatoid arthritis? 

Any other patients/doctors noticed the same signs ?

Will someone please do the research?

Saturday, June 28, 2008

I am amazing

Yes I am. I am amazing. I have to remember that. This had been such a hectic week at work.

I pulled myself out of bed every morning, and took the pain on my swollen feet with a grimace. It really helped. It really helped that the workplace allow people to start work as late as 10 am.

I timed myself to get on a train which is empty and got myself a seat - to rest my feet before torturing it during the short walk. And as usual, God loved to have fun with me. So, he gave us a fire drill. I had to walk up and down 5 floors worth of stairs, trying to keep pace with my colleagues. Trying not to limp.

I typed until my fingers were so painful, that my words began to look jumbled up because the fingers were so tired, and and fatigued to respond properly.

And yes... i made mistakes. I was so tired that I made mistake. A colleague noticed it and not too pleased and made some comments which really hurt me. I almost felt that I lost this battle However, I could put myself in his shoe and think that is a fair comment. He did not know I had RA. He did not know how unwell I had been.

So, I deserve this post... to remind myself. I put in a lot just to do the usual normal things that adults do, and to let others know. It takes a lot for someone with RA to live normally, but we can live a life as full as we could if given just some small allowances to make adjustments.

Thank God it is friday, and I can now have a good rest to fight on next week.

Still swollen..........

and painful.

Reward? Any rewards for this?

Yes, an excuse to buy shoes. No one would have the hear to tell a women with swollen legs, and feet of changing sizes she had too many pairs of shoes.

It is summer, it is the sales, so pluck up all your energy and get something!

Wednesday, June 18, 2008

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!

Thursday, June 12, 2008

Living with Arthritis

I was pleasantly suprised by the booklets published by Arthritis Care, UK.


Check it out :)

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.

Friday, May 30, 2008

New fibro support forum (UK)

There is a new fibromyalgia support forum for UK.


Hope this forum flies. Good luck. UK patients will need all the info/help in getting help from the NHS system, and understanding their rights.

Tuesday, May 13, 2008

A fogged moment!

It was just another day at work. My manager was going to go through with me how data could be analysed with a new software.

The alarm bells started to rang when I realised I had "blank" moments about what she said 5 seconds ago. Therefore, I tried to write down "notes", so that I could refer to it when I became blank again. I tried my best to listen, asked questions, get confirmation, and write down immediately, but there were still so many missing "gaps". It was horrible. I was so worried that I might be "found out". She must have thought that it was weird for me to write down every single instruction she gave!

The acid test happened when she asked me to give it a go-enter some data and tried a new analyses. Good grief!! So many mistakes. I could only joke about hypoglycaemia, low blood sugar and hoped that she would half believe it. When the session was over, I immediately declared lunch and hoped that the brain fog would go away!! Thankfully, I was much better after lunch.

That was a really narrow escape. I have some RA symptoms recently, swellings in the morning, and I guess the fog was part of the package. Wish me luck!!!!

Research- Fatigue(felt) related to heart functioning!

A new research published in the very respectable annals of internal Medicine showed that fatigue is related to cardiac functioning yesterday.

Basically, it showed that the amount of blood pumped out by the heart is lower among individuals with high reported fatigue, both at rest and in response to stress compared to low or moderate fatigue people.

The authors concluded:
"This study demonstrates that fatigue complaints may have hemodynamic correlates even in ostensibly healthy individuals".

Those were just nice and intellectual sounding stuff which means:
"There is some sort of link between the heart and blood dynamics in people who said they are fatigued! It is not all in the mind!"
I cant blame any ME, CFS or RA patients who have deal with fatigue almost on a daily basis feeling vindicated. I did!

Exercise made 1/3 of Chronic Fatigue Syndrome patients feel worse..

Saw the report about exercises prescribed for CFS patients made 1/3 of them felt worse, and resulted in some of them to be bed bound for the next couple of days.

I certainly feel a lot worse after a "good work out". The kind of fatigue and soreness, the flares in my joints I experience is not just plain after excercise sort of tiredness. I make no mistake about that. The jury is still really out there about how much is too much and how much is enough. Until then, we just got to listen to out body and get up and do as much as we possibly could. Exercises and activities, is definitely a good thing, but the amount required is really depending on the individual. That stays, until some solid research have came out we good data.

At the same time, some researchers had worked out that people who complained of high "fatigue" has hemodynamic differences compared to those arent (when they looked into the blood flow and pressure)

Wednesday, April 30, 2008

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.

Tuesday, April 29, 2008

How frequently do I blog?


Someone left a comment, wondering why I do not blog EVERYDAY. This person is starting a blog about rheumatoid arthritis (cures!) and wonder why I don't blog everyday.

Hmmm... if you truly understand RA and FMS, you probably won't expect the patient to blog every single day? Only those who are very well controlled could probably do that!

I hardly have the energy to blog after a full day's work.

Keeping myself in a condition where I could just do what everyone is doing requires great efforts and discipline. Not to mention that i can only blog when hubby is not around me. That is another great effort. Today is a rare day he sleeps before me.

I have been feeling really tired after work each day. Had this "small" flare going on. So, I just have to focus on rest, and "functioning" for the time being.

Friday, April 25, 2008


Thank God It's Friday!

Although I love my job, it had been a stretch this week! I have not been feeling well, and had been sleeping late!

The boiler had broken down too. It is amazing how many days it takes to "cure" a boiler.

Sunday, April 13, 2008


I am scared. ...

I am scared i am onto a big flare...I have had a sore throat last week, i got better, but my joints get more active, and i am really getting more tired each day.

But hubby cant get it... he is fighting about he being more tired than I am this week, since he did the cooking and quite abit of the washing.

When is he going the get it? I am tired beyong words. I am simply fatigued and in pain.

Thursday, April 03, 2008

Alternative therapies-on BBC

BBC is running a series about alternative therapies, investigated by the very good looking Professor Kathy Sykes. You could view them at this link.


Just need to search "alternative therapies".

Last week was about reflexlogy. (This week was about meditation, but I have not viewed yet)

Although they found no solid "evidence" to show how reflexology could work and therefore could be useful, an investigator in the series from LA had said that people with fibromyalgia had been reported to benefit from massage.

"Benefit from it?" Yeah! I can vouch for that! Give me massage over NSAIDs anytime for my fibro! And mind you, I mean deep massage which tackles my trigger points. Not just gentle stroke for relaxation.

The end of another work day

Yes, I made it to the end of another work day. And goodness, it is only Wednesday!

The week felt extremely long, since the RA is having a party right now.

The good news is my GP could finally refer me to rheumatologist, after my former rheumatologist wrote a long letter that I really had RA! Bless that good man. And bless my new GP who was willing to listen and did what was needed to get pass the red tape and get me a referal.

If I have the power, I would make it a sin not to allow patients with RA and FMS get properly followed up by specialists!

Tuesday, April 01, 2008

Too hard to understand?

I survived 4 full weeks for full time work. Amazing?

Yup, I did it. Despite a bit of flare and bad stiffness in the mornings, I braved myself to work. It helps that the new place practice flexi hours, so you could go in anytime you want to before 10 am. No one bats an eye lid.

The spring is here, and I am eyeing some long weekends away- a host trip will really be good for me. It is some sort of reward for enduring the pain. Try standing 1/2 hour ankle swollen, toes screaming in a train- as your body sway when the train accelerates and decellerates, you feel your weight shifting between your legs. It is obvious- when it is painful.

But that got hubby all angry. Angry that I wanted a break, wanted a holidays, when i am just so new in my work, and have a bit of income. Can't I wait?

Wait? Until when? There will never be a good time. And dont tell me about "post-retirement". If my bone creaks and screams when I take take short holidays now, how do you want me to imagine myself glob trotting in my old age? And damn in, retirement is now 67? 69? It is no longer 55! I don't hve the luxury of leavin things into future.I am not sure what teh future holds. All I know is I want my life-now! Sorry for being selfish!

Tuesday, March 18, 2008

I am fine...

Just a note to say,


It has been tough... but I am ok. I braved myself and pushed myself out of my bed to work.
Hanging on.

The goings gets tough.. so the tough cookie gets going.

Friday, February 29, 2008

At the supermarket- can you pack your bags?

If yes, you lucky fella.

Two nights ago, I was a the checkout counter at the local supermart. I had a friend coming over, and wanted to buy some stuff, before picking him up from the station. My time was a bit tight.

I went to the shortest queue. 2 persons in front of me. I saw another customer left the queue, and I was the next customer.

The man had trouble packing his grocery. It took him a few attempts to get each item into his plastic bag. And after filling 1 bag, he struggled to open the next plastic bag. He had tremors, and poor coordination.

No wonder the guy in front of me left!!! It took him a long time to fill up the bags, and the cashier did not help at all! He would rather stare into space.

My first instinct was to help the man, but then I thought.. no, maybe not. This guy is really really young. Younger than me, perhaps. Twenties? Early thirties?

Whatever his problem, give him a chance to complete a simple task without help. Poor guy. I feel for him. I have been in his position. "Clogging up" people.

He is putting in a lot of effort, and conscious that customers behind him had been leaving the queue. He kept on looking at me from the corner of his eyes. Wondering if I was getting impatient? Wondering if I minded? Wondering why I did not help? I did not know. I am not sure if i did teh right thing? I actually took out my phone to try to look busy. What it the thing to do? I had no idea.

I only remember how happy I felt when i could bring back a few bags of groceries without help. Yes, it was a lot of effort, but I could do it on my own without help. I did it.

What would have made his day? getting help to pack groceries? Or buying, packing and carrying home the groceries to feed his family, all by himself?

I lost 1 kg!

Nothing to shout about?

For someone with RA, fibro and PCOS, that had been pure hard work (and pain). And I have been trying to do it in such a way which will not trigger my fibro or RA. Previous plans have been foiled whenever too much exercise or too low calories caused RA flares.

GYM=FLARE for me. I have to be very very careful about how much I do, type of activities and the sequence. I have not been able to follow the plan suggested by the trainer. It is simply not workable because my pain and strength at different joints/muscles varies each day! I know myself better, and I have decided to follow my own gym strategy. Don't think they will be happy when they see my records, but well, a woman has to do what a woman got to do! :P

More details of my small weight loss progress here.

And I must honestly admit: I ache all over the place, but the sauna helps. Massage would be fantastic, but it is $$$$

Saturday, February 23, 2008

God.. in times of despair?

Perhaps people turn to God in times of despair?

I have been thinking of God, and talking about God, and used the word God, both privately and to myself many times recently.

But which God I am refering to?

Thursday, February 21, 2008

I want to smile but could only sigh........

I want to just concentrate on what I CAN do now.. concentrate. Yes, concentrate.

Job offer- jeopardised

After happily telling me she will provide me a reference, and asked my future employer to approach her, she now emailed me the she cannot do so without jeopardizing my job. She asked me to tell her what to write and she "might consider" it. She "has a duty" to tell my future employer " the truth", and "telling the truth will jeopardize my job".

How mean can a person be? I did not need her reference for this job- and I made it explicit. If she was going to give me a reference which will "jeopardize my chance", why did she tell me she will be very happy to provide a reference?? ?

My stand is I will be happy for her to tell the truth, the whole truth, and not partial truth. No matter what her stand is, I am in no position to influence what she says about me in my reference. That is dodgy.

What will you do, if you are in my position? Give me advice!
I have an illness, but I am coping quite well, and I already make concessions about my jobs to make sure I get a job where I am more than able to cope. Most of the time- more than 95% of the time, I can happily work 8 hours a day, or even more! I am already going for easier, lower paid jobs.

Wednesday, February 20, 2008

Another short gym session Plus massage

I did only about 20 minutes worth of gym.

Couldn't finish the 10 minutes stationary bike. after 5-6 minutes, could see my knees hurt. I can tell you that I am scared of triggering another "full blown" flare. I cannot afford it.
So, I tried to rotate the joints used. I dont think the "trainer" understood what i meant, or he had his own ideas. I dont think i could do what he recommended- it used the same joints, although different muscles. My joints hurt.

So, this is my plan...
Bike: knee, some hips + ankle
Chest press -shoulder, elbow plus some wrist
Abdominal crunch machine - i dont feel any joints screaming! This is becoming my fav. Washboard abs soon???
..... and i tried to ensure i rotate ...

I think it seems to work better this time. Joints are sore, and extremely tired. Could only wake up at 11 am. I was suprised to see a number of missed calls on my mobile. Surely as sign of how fatigued I was. Howevr, this was better than my last gym attempt, no where as sore as before. Perhaps this is a good strategy for my gym? Instead of just focusing on muscles worked-which my trainer is doing, i also need to look at the joints used, and angle used?

Sigh, everyone is telling me to exercise, and make it sound so easy. I was totally pissed off when a "friend"asked me if I knew I should warm up, and I know how to do warm up or not. If I warm up probably, I would not have a problem. It is may be just my lazy excuse.

What makes her think she has the right to be so condescending? She has no idea how fit I was, and how much exercise I did before RA and fibro hit me, and have been saying things which sound like I got all these health problems because I do not exercise. She has been annoying me for sometime-so I had no hesitation telling her off. Tribe cleansing, you may call it.

Monday, February 18, 2008

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.

Thursday, February 14, 2008

Hurt by peanuts

I love peanuts-In fact I love any type of NUTS!

But nuts are a luxury nowadays-Many types are expensive. Because of the health benefits, nuts are increasingly treated like health food. I eat them because I love it.

However in the recent years, eating nuts could be tough. No, I still have my teeth intact. It is just that my jaw joints would hurt. Yup, that is fibromyalgia plus Rheumatoid Arthritis. Even peanuts could hurt. My jaw joints HURT when I chew them. They feel sore!

I am a HAPPY survivor

Yes I am. Yes I have to be.

No matter what fate is written
No matter what shit or dirt is hurled
No matter what people say
No matter what people do
I know life is about choices
And everyone will have a choice
In the worst of situations
You either smile or cry
You cant prevent death
You cant stop the pain
But you can still decide
To smile or to cry

I decide to add another "column". A column "called inspiration". And I got to start this column with my favourite story: The donkey.

Monday, February 11, 2008

50% of rheumatoid arthritis patients give up work within ten years, says new study

Are you still in employment? How long have you been having RA?

This "headline" certainly spell trouble for RA patients who are looking for a job!
Fifty per cent of rheumatoid arthritis patients give up work within ten years, says new study A new study into the costs associated with rheumatoid arthritis (RA) has shown that many people with the disease are forced to retire early.

Researchers from Sweden published their findings in the European Journal of Health Economics.

The team found that 65 per cent of the costs associated with RA were outside the health care sector and that these included productivity losses, patient out-of-pocket costs and informal care.

The researchers also suggested that around 50 per cent of all people with RA were forced to leave their workplace and either retire or apply for a disability pension within ten years of disease onset.

"Of all the chronic diseases, rheumatoid arthritis has one of the biggest impacts on the quality of life of patients," commented Professor Josef Smolen.

"I am confident that this study will contribute to the discussion on the importance of RA from a societal perspective and not just a health care perspective.

"Patient access to good care and treatment including thorough follow-up examinations and access to innovative drug therapies, where indicated, are critical elements that will benefit all of society."

An Arthritis Research Campaign spokeswoman said: "It is very disappointing that so many RA patients have to give up work within ten years of developing the disease, despite huge advances in treatment. It may be that anti-TNF therapy, given early in the course of disease may help keep people in employment for longer, in future years."

article form ARC website

Lack of confidence

At job my interview last week, I was able to "psych" myself up. I was feeling really sick, worried about my joints etc, but I was able to "psych" myself up to be positive and upbeat, between coughs and deafening sneezes. I hardly had good sleep because I was sick, but I went in to the interview feeling that I had a chance and have to fight for it. I did not get the job offer, but I knew I put in my best and have nothing to regret.

Yet today, I am not even putting in my best to prepare for the next job interview tomorrow. Sigh. I have been feeling really tired and warm and in pain since my RA flared up again last week. I tried to lose weight so that I would look more decent at the interview. Instead, I triggered a flare. And more than a week "resting" makes me look more flabby than ever. As usual, another 1 kg of weight gain due to lack of activity.

Despite all the difficult things that have happened recently, I have been trying so hard to maintain an up beat mood. I have not been complaining about how horrible I feel, and what severe blow that is to my confidence. Here I am applying for jobs that require you to be "dynamic" and able to meet "tight deadlines", and here I am, hardly able to get out of bed before 10 am. Here I am tired, by 10 pm. Here I am trying to attend interviews, and trying to make myself look the best I could, despite another kg of flab.

But I guess the "balloon" was really deflated by people around me. Totally able bodied people telling me they cannot do this and cannot that. Totally able bodied, intelligent young people telling they have no hope of doing a long list of things. They have been telling me that they have achieved nothing, and can't achieve anything. Things are too difficult. And they regret A-Z. Life is hopeless.

Frankly, I am sick being the cheerleader. I just want to ask them to scram.

Can't they have some mercy on me? Can't they show me some mercy? Why do they need to behave this way now? Why?When I look at them, I told them"if you have no hope, what do I have??" Or perhaps they wanted to compliment me? They wanted to tell me I actually did many of their so called "the impossibles", while I was sick, tired, in pain and sometimes foggy? Life have not been fair to them? Tell me about it.

I am being totally fed up with all the men around me. Damn it. If they can't distinguish between "can't do it" and "won't do it", get out of my way. And let me use the little energy I have to prepare and do my best for tomorrow's interview. I know I am not in a state where I could do well enough to succeed. Ill prepared and all, but I just want to do my best, no matter how "hopeless" it is. So, stop telling me why the things they do are "hopeless". Stop telling me things which make me feel my efforts are even "more hopeless" than yours. Stop telling me that you can't do a good job because you don't LOVE what you do, and although you do not HATE it, you do not ENJOY it very much. I can tell you that I do not ENJOY going to work. I don't ENJOY getting out of bed early in the morning, sore all over the place, and get into that ICY car, or walk 1/2 mile in my swollen feet to the nearest station. I don't ENJOY walking when my feet are swollen, I don't ENJOY driving with painful ankles. I don't ENJOY spending 10 hours a day typing- that makes my fingers and wrist really painful-my neck and shoulders sore and painful even to light touches (that is the fibromyalgia component, FYI.). I don't ENJOY staring at the screen for a long time, cos my eyes are really dry (That is Sjogren's syndrome), I don't ENJOY long presentations too. If I am the speaker, my dry mouth becomes really uncomfortable, and people wonder why I sip water so much (if water is available). As the listener, I would squirm in my seat, because my joints would "frozen" or let out some cracking sounds. And I also don't ENJOY doing the housework, not when I am already dead tired and in pain after a long day at work.

And yet despite all the shit which is showered on to me, I am just like the little donkey. I shake my head, sigh, take a step and move on. Perhaps that is why I am surviving. I am just a little foggy brained donkey now, unlike all these intelligent people around me. They have a lot more brain cells and energy to complain than I do.

Sunday, February 10, 2008

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?

Friday, February 08, 2008

To tell or not to tell

Perhaps it is a consolation that every CV I sent out returned an interview.

However, ,I flopped at the spot where I had to account for the "gap". More than 1.5 years away from the workforce. Young professional. How do I account for that? I am bad at telling lies, but if I tell the truth... well. I have had enough of prejudice.

TO tell or not to tell?

Monday, January 28, 2008

Not telling the whole truth

I chickened out from telling the whole truth. I did not tell them I have RA and fibro.

I have a bad feeling I performed badly. It is so difficult to not tell the truth. IT holds me back in many ways.

Sunday, January 27, 2008

New York Times Article: Drug Approved. Is disease real?

I saw this article which is upset many fibromyalgia patients, after reading some discussions in other blogs about it.

This is a clear example of irresponsible reporting. I can't believe that we are going "backwards" again, and this article was published in the front page of NYT.

What motivates the publication of articles which questions the "realness" of illnesses? Pharma bashing? It seems so easy for other to downplay the suffering of others. A while ago, Consumerreports.org's video about RLS has cause much unhappiness among RLS patients.

The latest report from NYT is an example of pseudo-objective, pseudo-scientific report. Some journos quote a few "experts" who cite "non-evidence" as evidence that a disease is unreal.

Forgivable? If you are a fibro patient and you have friends/neighbours saying "oh, apparently FMS is not real, it is all in your head. Did you see the article in NYT?", you will want to strangle those people who publish it.


THE NYT article

January 14, 2008

Drug Approved. Is Disease Real?

Fibromyalgia is a real disease. Or so says Pfizer in a new television advertising campaign for Lyrica, the first medicine approved to treat the pain condition, whose very existence is questioned by some doctors.

For patient advocacy groups and doctors who specialize in fibromyalgia, the Lyrica approval is a milestone. They say they hope Lyrica and two other drugs that may be approved this year will legitimize fibromyalgia, just as Prozac brought depression into the mainstream.

But other doctors — including the one who wrote the 1990 paper that defined fibromyalgia but who has since changed his mind — say that the disease does not exist and that Lyrica and the other drugs will be taken by millions of people who do not need them.

As diagnosed, fibromyalgia primarily affects middle-aged women and is characterized by chronic, widespread pain of unknown origin. Many of its sufferers are afflicted by other similarly nebulous conditions, like irritable bowel syndrome.

Because fibromyalgia patients typically do not respond to conventional painkillers like aspirin, drug makers are focusing on medicines like Lyrica that affect the brain and the perception of pain.

Advocacy groups and doctors who treat fibromyalgia estimate that 2 to 4 percent of adult Americans, as many as 10 million people, suffer from the disorder.

Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate. Further, they warn that Lyrica’s side effects, which include severe weight gain, dizziness and edema, are very real, even if fibromyalgia is not.

Despite the controversy, the American College of Rheumatology, the Food and Drug Administration and insurers recognize fibromyalgia as a diagnosable disease. And drug companies are aggressively pursuing fibromyalgia treatments, seeing the potential for a major new market.

Hoping to follow Pfizer’s lead, two other big drug companies, Eli Lilly and Forest Laboratories, have asked the F.D.A. to let them market drugs for fibromyalgia. Approval for both is likely later this year, analysts say.

Worldwide sales of Lyrica, which is also used to treat diabetic nerve pain and seizures and which received F.D.A. approval in June for fibromyalgia, reached $1.8 billion in 2007, up 50 percent from 2006. Analysts predict sales will rise an additional 30 percent this year, helped by consumer advertising.

In November, Pfizer began a television ad campaign for Lyrica that features a middle-aged woman who appears to be reading from her diary. “Today I struggled with my fibromyalgia; I had pain all over,” she says, before turning to the camera and adding, “Fibromyalgia is a real, widespread pain condition.”

Doctors who specialize in treating fibromyalgia say that the disorder is undertreated and that its sufferers have been stigmatized as chronic complainers. The new drugs will encourage doctors to treat fibromyalgia patients, said Dr. Dan Clauw, a professor of medicine at the University of Michigan who has consulted with Pfizer, Lilly and Forest.

“What’s going to happen with fibromyalgia is going to be the exact thing that happened to depression with Prozac,” Dr. Clauw said. “These are legitimate problems that need treatments.”

Dr. Clauw said that brain scans of people who have fibromyalgia reveal differences in the way they process pain, although the doctors acknowledge that they cannot determine who will report having fibromyalgia by looking at a scan.

Lynne Matallana, president of the National Fibromyalgia Association, a patients’ advocacy group that receives some of its financing from drug companies, said the new drugs would help people accept the existence of fibromyalgia. “The day that the F.D.A. approved a drug and we had a public service announcement, my pain became real to people,” Ms. Matallana said.

Ms. Matallana said she had suffered from fibromyalgia since 1993. At one point, the pain kept her bedridden for two years, she said. Today she still has pain, but a mix of drug and nondrug treatments — as well as support from her family and her desire to run the National Fibromyalgia Association — has enabled her to improve her health, she said. She declined to say whether she takes Lyrica.

“I just got to a point where I felt, I have pain but I’m going to have to figure out how to live with it,” she said. “I absolutely still have fibromyalgia.”

But doctors who are skeptical of fibromyalgia say vague complaints of chronic pain do not add up to a disease. No biological tests exist to diagnose fibromyalgia, and the condition cannot be linked to any environmental or biological causes.

The diagnosis of fibromyalgia itself worsens the condition by encouraging people to think of themselves as sick and catalog their pain, said Dr. Nortin Hadler, a rheumatologist and professor of medicine at the University of North Carolina who has written extensively about fibromyalgia.

“These people live under a cloud,” he said. “And the more they seem to be around the medical establishment, the sicker they get.”

Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.

“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”

In general, fibromyalgia patients complain not just of chronic pain but of many other symptoms, Dr. Wolfe said. A survey of 2,500 fibromyalgia patients published in 2007 by the National Fibromyalgia Association indicated that 63 percent reported suffering from back pain, 40 percent from chronic fatigue syndrome, and 30 percent from ringing in the ears, among other conditions. Many also reported that fibromyalgia interfered with their daily lives, with activities like walking or climbing stairs.

Most people “manage to get through life with some vicissitudes, but we adapt,” said Dr. George Ehrlich, a rheumatologist and an adjunct professor at the University of Pennsylvania. “People with fibromyalgia do not adapt.”

Both sides agree that people who are identified as having fibromyalgia do not get much relief from traditional pain medicines, whether anti-inflammatory drugs like ibuprofen — sold as Advil, among other brands — or prescription opiates like Vicodin. So drug companies have sought other ways to reduce pain.

Pfizer’s Lyrica, known generically as pregabalin, binds to receptors in the brain and spinal cord and seems to reduce activity in the central nervous system.

Exactly why and how Lyrica reduces pain is unclear. In clinical trials, patients taking the drug reported that their pain — whether from fibromyalgia, shingles or diabetic nerve damage — fell on average about 2 points on a 10-point scale, compared with 1 point for patients taking a placebo. About 30 percent of patients said their pain fell by at least half, compared with 15 percent taking placebos.

The F.D.A. reviewers who initially examined Pfizer’s application for Lyrica in 2004 for diabetic nerve pain found those results unimpressive, especially in comparison to Lyrica’s side effects. The reviewers recommended against approving the drug, citing its side effects.

In many patients, Lyrica causes weight gain and edema, or swelling, as well as dizziness and sleepiness. In 12-week trials, 9 percent of patients saw their weight rise more than 7 percent, and the weight gain appeared to continue over time. The potential for weight gain is a special concern because many fibromyalgia patients are already overweight: the average fibromyalgia patient in the 2007 survey reported weighing 180 pounds and standing 5 feet 4 inches.

But senior F.D.A. officials overruled the initial reviewers, noting that severe pain can be incapacitating. “While pregabalin does present a number of concerns related to its potential for toxicity, the overall risk-to-benefit ratio supports the approval of this product,” Dr. Bob Rappaport, the director of the F.D.A. division reviewing the drug, wrote in June 2004.

Pfizer began selling Lyrica in the United States in 2005. The next year the company asked for F.D.A. approval to market the drug as a fibromyalgia treatment. The F.D.A. granted that request in June 2007.

Pfizer has steadily ramped up consumer advertising of Lyrica. During the first nine months of 2007, it spent $46 million on ads, compared with $33 million in 2006, according to TNS Media Intelligence.

Dr. Steve Romano, a psychiatrist and a Pfizer vice president who oversees Lyrica, says the company expects that Lyrica will be prescribed for fibromyalgia both by specialists like neurologists and by primary care doctors. As doctors see that the drug helps control pain, they will be more willing to use it, he said.

“When you help physicians to recognize the condition and you give them treatments that are well tolerated, you overcome their reluctance,” he said.

Both the Lilly and Forest drugs being proposed for fibromyalgia were originally developed as antidepressants, and both work by increasing levels of serotonin and norepinephrine, brain transmitters that affect mood. The Lilly drug, Cymbalta, is already available in the United States, while the Forest drug, milnacipran, is sold in many countries, though not the United States.

Dr. Amy Chappell, a medical fellow at Lilly, said that even though Cymbalta is an antidepressant, its effects on fibromyalgia pain are independent of its antidepressant effects. In clinical trials, she said, even fibromyalgia patients who are not depressed report relief from their pain on Cymbalta.

The overall efficacy of Cymbalta and milnacipran is similar to that of Lyrica. Analysts and the companies expect that the drugs will probably be used together.

“There’s definitely room for several drugs,” Dr. Chappell said.

But physicians who are opposed to the fibromyalgia diagnosis say the new drugs will probably do little for patients. Over time, fibromyalgia patients tend to cycle among many different painkillers, sleep medicines and antidepressants, using each for a while until its benefit fades, Dr. Wolfe said.

“The fundamental problem is that the improvement that you see, which is not really great in clinical trials, is not maintained,” Dr. Wolfe said.

Still, Dr. Wolfe expects the drugs will be widely used. The companies, he said, are “going to make a fortune.”

Saturday, January 26, 2008

under payment

just as I thought I have put behind all the problems with the previous job and moved on, I received my final pay statement.

"mistakes" here and there. I get paid less that I deserve.Payment in lieu of annual leave less than it should, reimbursements lumped into "salary" and therefore taxed, etc etc. I was really angry when i punch the calculator to check the weird amounts. This is really annoying. I am glad I left

Friday, January 25, 2008

What happens if your landlord do not provide the heating and water supply?

What does the law say about provision of water and electricity? In this case, the tenants have just move in.
The landlord need to do the "repair" within "reasonable" time.

How long is reasonable?
It can be days, weeks. It is very difficult to define.

So, what will happen to my friends? Tonight will be particularly cold, and I cannot imagine them living in a house without any heating. They are miles away might need to pop into a B&B/motel if it gets really cold tonight. My friend has health conditions which is particularly intolerable to cold.

Could they get some sort of compensation for the extra expenses incurred? For example, not pay the rental for yesterday and today (the days where they flat is clearly not ready/fit for occupation??) or some sort of compensation for needing to seek alternative accommodation?
No, they law does not have any provision for compensation to tenants (even when repairs are clearly needed). However, the law says that the tenant must continue to pay full rental, and ensure no arrears (even when repairs are not carried out). Otherwise, they are considered defaulting. They can ask the landlord to reduce rental for the period the problems exist, but the landlord have no obligations to fulfill it.

Is there no obligations at all on the landlord's side? Is there no way to claim any compensation? This can be costly if dragged out.
They can try to make a claim a through the small claims court, but will need to seek help from a solicitor. This is no guarantee that they can get something. In addition, they will have to pay fees. May not be worthwhile.

Don't the landlord & management agent have an obligation to ensure that they flat have basic supplies such as water and electricity connected before renting out?

They may claim that they were "not aware" of the situation. It is very difficult to "contest". For example, the water supply might have been cut off because the previous tenant did not pay up, or there is a broken pipe. This will not be considered the landlord's fault.

So, what can the tenants do?
Request the management agent to get it done asap. If they still drag their feet, involve the local council. The local council can act as a "mediator". If all these do not work, and the problem is prolonged, they can speak to the local environment office, who can then look into the matter and have the power to take actions -"ordering" a repair.


?????? Can you believe it??? Gosh, I think i should just get a property and rent it out, since my only obligation seems to be carrying out repair within "reasonable" time whenever my tenants complain. I don't even have an obligation to check that the house is in good condition, with basic things like water and electricity provided!

Tell me, what is "reasonable"?

My faith in "law" is diminishing. Where is the justice?

When two parties are involved, the law always seems to protect the more "powerful" party.

Employment laws: To what extent are employees protected? To what extent are disabled employees, young mothers etc are protected? Although there are "acts" in place, they are pretty useless, as there are so many loop holes. "Reasonable adjustments" for disabled employees. How do you define "reasonable"? It is all up to the employer to define, with so many excuses about hurting the company efficiencies etc.

Housing and tenancy:
I have just called on behalf of my friends to find out about their rights. They have just moved into a new rented flat and found out that there are no water supplies. No water supply= no boiler= no heating. No water supply= no sanitation.

Is this flat fit for occupation?

They called the housing agent who managed their flat immediately, only to be told that the "person in charge" is not around. Call again, and they seemed to drag their feet again. So, where are they going to stay today? It is really cold today, and my friend has health problems- mild lupus and bad peripheral circulation. I have seen her fingers and toes turn blue when she did not keep warm enough in winter. I have seen them bruised, and painful because of exposure to cold.

I called and ask some questions, and was really fuming about the laws of this country.

What does the law say about provision of water and electricity? In this case, the tenants have just move in.
The landlord need to do the "repair" within "reasonable" time.

How long is reasonable?
It can be days, weeks. It is very difficult to define.

So, what will happen to my friends? Tonight will be particularly cold, and I cannot imagine them living there. They are miles away from me, and they might need to pop into a B&B/motel if it gets really cold tonight.

Could they get some sort of compensation for all these problems? For example, not pay the rental for yesterday and today (the days where they flat is clearly not ready/fit for occupation??) or some sort of compensation for needing to seek alternative accommodation?
No, they law does not have any provision for compensation to tenants who are given an accommodation unfit for living. However, the law says that the tenant must pay full rental, and ensure no arrears even when repairs are not carried out, otherwise, they are considered defaulting. They can ask the landlord to reduce rental for the period the problems exist, but the landlord have no obligations to fulfill it.

Don't the landlord & management agent have an obligation to ensure that they flat have basic supplies such as water and electricity connected before renting out?
They may claim that they were "not aware" of the situation. It is very difficult to "contest". For example, the water supply might have been cut off because the previous tenant did not pay up, or there is a broken pipe. This will not be considered the landlord's fault.

So, what can the tenants do?
Negotiate with the management agent to get it done asap. If they still drag their feet, involve the local council. The local council can act as a "mediator". If all these do not work, and the problem is prolonged, they can speak to the local environment office, who can then look into the matter and have the power to take actions -"ordering" a repair.

?????? Can you believe it??? Gosh, I think i should just get a property and rent it out, since my only obligation seems to be carrying out repair within "reasonable" time whenever my tenants complain. I don't even have an obligation to check that the house is in good condition, with basic things like water and electricity provided!

In other words, my friends are on a lose lose situation. They will have to wait for then landlord to carry out the "repair" within "reasonable" time. Days later? A week later, since it is the "weekend now"?

I find that these are all totally ridiculous. If you have no water supply to your house, and you are freezing cold, I bet you will call they plumber immediately. I bet you will try to get someone to repair it within the next couple of hours. I bet you won't think nothing can be done since it is weekend.

Wednesday, January 23, 2008

Life's little achievements.. like baking a cake..

I find "little achievements" in baking. Still out of job, and waiting for responses from a few potentials, life is suddenly "quiet" again.

It is almost a decade ago since RA strike me. It is not the pain which is a pain, it is the fact that it takes a way my energy. And even on days I feel totally energetic, I am still at its' mercy. If I " overdo" things, I get a flare.Full stop. So, energy is a precious commodity which needs to be strictly rationed. And oh, have I forgotten about the fibromyalgia??

Having been active person and a "high achiever" all my life, I find the lack of energy and and all those problems a had really depressive. Gatherings and seasons like Christmas is not easy for me. These are the times I am forced to look at what my my close friends are up to. While I am always so happy to hear their achievements and so proud of my friends= gals who kick asses, sometimes it is quite difficult not to "notice" the GAP! These people are now directors, managers, specialist doctors, assistant professors, consultants etc etc and some juggle a successful careers with kids. They bought swanky houses, drive nice cars, fly around to do business etc.At those times my RA and fibro cause trouble, I can only sit and watch life goes by. Is it a wonder that chronic illness patients like us need to fight depression at all times? Ok.. got to stop here.. this is negative!

Anyway, now that I am a "veteran" in living with RA and fibro, I learn to create my own little achievements- yes, daily achievements! Hmmm.. like baking muffins. I am pleased to announce that I have now progressed to cakes! I should be thankful, as just over 1-2 years ago, I could only do muffins (since they only need to to "mix" dry and wet ingredients together). Now I am onto cakes, which need much more energy!

Today I baked a really yummy blueberry cake! Big deal, yeah? Yes, it is big deal. It is a big deal for someone like me. It is a big deal for people like us. It is a big deal, as it is a way for me cope with my illness, to ensure that I feel that I am still learning something new everyday, I am still "achieving" something daily. It is a big deal, as I did so many things to improve my health, to get myself from a state of "barely having the energy to make muffins" to not being worried at I might fall asleep from fatigue while the cake is baking. These are no tiny feats! Ask any CFS/Fibromyalgia patients! It is big deal, as without these little achievements, it is too easy to fall prey to Depression.

Here are the recipes for the blueberry cakes I made. I have a good day cake and a bad day cake. Go on, try it!
(Try to do the good day recipe when your hands/wrist are fine) No worries about the washing. They are so good that either the dog will lick things clean or the significant half/kids will be willing to wash up.