by Jeanne Hambleton © 2007
NFA Leader Against Pain-Advocate
Dear lori763 from Florida
It was difficult to reply to your comments in that tiny box so I decided to put my thoughts down in a follow up article. Thanks for your support and for the link to Jill Atwood‘s article to be found on the above link. Your comment said:
I have compassion for your desire to help so many people who are afflicted with so much pain. I have the same desire. But I have a very different orientation towards solving the pain problem. I am in the U.S. and just responded to the “call” to use the drug lyrica by ABCNews4. I will enclose my response and their link for info. purposes.
I am wondering if Jill Atwood is a spokesperson for the pharmaceutical industry. Under the guise of factual reporting, she summarily dismisses herbal and alternative remedies for fibromyalgia found on the web “if they are for profit” – what may I ask are the drug companies in it for? Charity? She concludes – “Ask your doctor” – who is from the very same community that could not find anything wrong. Suddenly everything is changed because a drug from big business is available? I am not disputing whether this drug helps some people but didn’t she offhandedly mention a minor detail a.k.a. “side effects”? Also, she failed to mention that this drug is simply treating the symptoms and does not address the cause of fibro.
Isn’t this so typical? Find a drug with lots of side effects that treats the symptoms and forget about the source of the problem? I suggest that we all wonder just why are there millions of people suffering so? I would also ask why is it that so many different remedies get some results? What is the common thing they all address – I have looked into it and they all reduce stress (nutrition, massage, exercise etc.)
I know someone who has great success in eliminating fibro pain for people – but his message will never be heard when reporters brainwash people into believing that the only legitimate way to treat a problem is through the medical community and with drugs.
Before you say something about all journalists sticking together – what Jill Atwood has to say about fibromyalgia is all very true and given the press release from Pfizer who make lyrica I might have written the same story. There are perhaps two exceptions. The Pfizer Company does confirm that this drug does not suit everyone; I feel Jill’s report is fair as she does quote patients as saying this. Lyrica had been used earlier for other health problems and was not a ‘new’ drug in the true sense of the word.
But I guess the comments you are referring to are those made by Jill Atwood which said: “Also there is another warning about all those herbal remedies and ‘cure-alls’ you find on the Internet for fibromyalgia and CFS. If they are tied to profit, be leary.”
I think she means leery (cautious) unless the American spelling is different.
I might have said, “SOME of those herbal remedies” but in the heat of the moment – given the pressure of deadlines and all that – it is easy to make a slip. If no one made mistakes what would we have to talk about. I have made mistakes in papers – followed by apologies in print. My fibro fingers often misspell a word although I know perfectly well how to spell in the cold light of day. What is more soul destroying is that you read and miss your own mistakes. You must have seen some of those silly road signs and stupid posters with errors. Later you think – if only…..I could be perfect.
Back to the plot – the feed back I have received was that in general the UK fibromites were delighted that lyrica had been given recognition for FMS albeit by the America FDA, as the FIRST drug to be prescribed for fibromyalgia. It was also felt that this would open the floodgates and that other researchers and manufacturers might follow and offer additional medication for fibromyalgia. If you look at ‘fibromyalgia drugs’ on the Internet you would be amazed at how many drugs are available to treat different symptoms of FMS – but none to cure so far.
I had heard it said that while fibromyalgia remained relatively unknown and doctors could not diagnose FMS, it was not financially viable to introduce a new FMS drug. I suppose some may ask am I working or speaking for a drug company while trying to raise awareness. The answer is no. I am anxious to educate our doctors, medical students and the public about the problems we suffer while enduring fibromyalgia with no cure. The lack of recognition given by the UK Government who fail to provide funding for research is another bone of contention with me. I could go on and on about the ‘corridors of power’ but I won’t.
As you say manufacturers are obviously in business to make a profit. So are people who make cars, sell clothes and supermarkets. But whether it is herbal remedies or an approved FDA drug you would not expect them to make a product, which will not meet the claims they make to sell the product.
Many months ago I wrote a story about someone who had taken lyrica before it was an approved fibromyalgia drug. She moved from being in a wheelchair with deep depression, and not talking to anyone to cycling and dancing weekly as well as coping with her housework and enjoying life. It took a while to find the dosage that suited her but it was a success in the end. Lyrica worked for her but I have also heard from others, in the wake of that story, who said it did nothing for them.
I have spent the last five years (since my diagnosis with FMS/CFS in 2002) doing research into this invisible disability. I believed FMS/CFS took my life away. I was angry. I truly believed I would never walk again. But within a year, without drugs, I was back at work, albeit part-time, had my self-respect and confidence back and was living with my disability. I sound like “a testimonial” but it is true.
During my research I must admit I do find it very frustrating when I am led onto a site with promises of this and that – not only to do with FMS/C FS – but all things – only to get to the small print and BUY ME. Even so I do manage to get some free advice and I do sometimes learn something.
WHY DO I DO IT?
For 1,211,740 UK fibromites (2% of the UK population and mainly ladies) and other fibromites in the world– that is why I am writing these articles. Not sure if they are all reading them – certainly not all at once – but I sure hope so.
But let me reassure you, I am here with my weblog as a labour of love, self-preservation and for my heath. I love to write – I hate fibromyalgia and the chronic fatigue which stops me half way up the stairs – and I have a passion to raise awareness when folk say ‘Fibro what?” Also I am being driven by my passion to finish this self-help book and publish it to enable the sales money to go to research. See:
I have said I am working with this book to help find a cure. But someone asked me what part of the syndrome would I cure if I could? That was a loaded question as there must be at least a dozen different kinds of pains and symptoms, which we all suffer.
Apart from the FMS pain, the fatigue of CFS/ME, the brain fade, myofascial pain, sleeplessness, headaches, backache, tingling, dizziness, stiffness, difficulty walking, irritable bowel syndrome, TMJ (jaw problems), restless leg syndrome, and some have lupus, Lyme disease, cystitis. I am sure I have missed some. Sorry am I boring you – of course you know all this. Hopefully your family might read this and understand just what disabilities you are really living with – why you cannot just run the cleaner round, quickly run upstairs for something, why it pains you to wash up, the problems with trying to get to the shops, doing the washing, why you stay upstairs, and more.
There are so many symptoms and pains that I decided the book should be called Pain 24/7 The Fibromyalgia Jigsaw © and you would be amazed just how many pieces there are in this book jigsaw. Lots of jigsaws have 100 or more pieces not that I am aiming for that many, but you would be surprised. I started out with one topic – fibromyalgia – now I have dozens of problems that live with FMS that I am writing about.
When I wrote the recent article about the UK debate on the withdrawal of co-proxamol, I really had no axe to grin with the manufacturers of this drug, or taking medication or herbal remedies.
It is not because co-proxamol cures anything and everything that I wrote the article, but because it makes living with pain a lot easier. Especially for me with my added problems of 4 fractures. The 72,000 people, who it is said use co-proxamol in the UK, should be reminded they are about to lose this 50-year-old painkiller if they do nothing about it.
It may already be too late. Our newspapers and TV news channels are full of mistakes made by our Government and the political health of our Prime Minister, so what chance does co-proxamol have of getting into the headlines or even into the House of Commons…certainly not this week. These are not a good days to get into print with more bad news… I know how it works. A big story is a wipe out for every other hopeful … and the next day it is yesterday’s news … old hat.
TRYING TO LIVE WITH IT
But truthfully we are all trying to find a way to live with our fibromyalgia and long-term pain, whatever way you look at.
With regard to ‘other’ remedies, some folk believe nutrition is the answer – what we eat is what we are. They claim you can change your lifestyle and avoid this and that and have little or no pain. Others talk about getting rid of your stress overload – which is a major problem and is responsible for a lot of sickness. There are fibromites who believe that low-grade aerobic exercises and walking will help. Some people write to me and say they are taking a cocktail of medication.
You must consider that if you go to a dentist with toothache you expect him to fill it or take it out to stop the pain. If you go to a doctor with aches and pains, he knows you expect him to alleviate your problems, and he will give you medication. It really is your choice if he says the cause is fibromyalgia. You can take the drugs he offers to relieve the pain, which is not a cure FMS, or live with. How you choose to deal with your FMS/CFS/ME or pain must be your choice. Your must have faith and trust in whatever you are doing to feel better.
THE WAY IT IS
In the past when doctors have said fibromyalgia is imaginary and it is all in your head – they were half right. It is no longer thought to be a problem for muscles and joints. It is well known that part of the problem with diagnosis is that blood tests show no markers. Also x-rays and scans reveal no inflammation where it hurts.
And yes it is in your head – all to do with a chemical imbalance. I have heard specialists at a conference confirm that the brains of fibromyalgics are wired differently to others and it has everything to do with the release of chemicals in the brain that trigger the pain. You might say too many bad guys and not enough good guys.
Here I feel I must say I have no medical training – this is what I have been told and what I have reported. It may be no use checking this with your own GP as he may still believe it is all in your head and he may be secretly thinking you are a mad malingerer – but I know you are not. I know there is a real pain in your arm, leg or even your butt. Trust me I am a fibromite.
So far I have not taken lyrica and have no wish to. Yes I have pain and days when bed is the only place I can find any comfort – but I am a rub-on-gel-gal. I am told what you rub on skin does not get in your blood stream and I am happy with that. I could be wrong! I have got enough problems without irritating my blood stream. I know the pain relief is only temporary but in reality anything that helps with fibromyalgia and its cohabiting nasties, even for a short time, and does not upset my stomach, is worth a try. I must say that my doctor prescribes my gel. I take co-proxamol when I am in serious pain.
You take an aspirin – or co-proxamol – you need to take another in so many hours. You take a dose of medicine for fibromyalgia – it is the same – repeat the dose. Deep down we all know so far there is no known cure – just medication to fight the pain and help you sleep.
So the truth is we do not know how to cure fibromyalgia, chronic pain, ME or some long term chronic illnesses. We are struggling – looking for a cure. If you find something – a rub, a tablet, a drug and if you and your doctor have agreed this is what you want to take – whether it makes the drug manufacturer wealthy, or the doctors get perks for the surgery from the sales reps if they recommend this drug – who knows and who cares – go for it. As long as it works for you and stops the pain, consider it. This is the way of the world and if it makes you feel better and more able to cope then this is the choice you have to consider. There is no such thing as a free lunch – everything has a price, even good health.
WHAT I DO
How do I live with fibromyalgia – work and positive thinking? I love to write. While sat at a computer I am using just a little energy but lots in the old brain box and this action appears to stop the PAIN GATE opening. If I am stressed, maybe cold or working towards a flare, my brain may send out signals to say ‘Let’s have a pain in the leg today’ – just where there is no inflammation or reasons for a pain in the leg and suddenly the pain gate is open and I feel pain. The problem is controlling the pain gate.
The brain and the pain gate have a lot to answer for. From experience, if I can keep my brain busy and the pain gate closed – this is my theory – I know I will feel a whole lot better. I achieve this by doing something I am capable of and which I enjoy. This keeps the brain busy and occupied. Visualisation and meditation work the same way by keeping the mind busy chasing colours and reliving happy memories.
I have been known to suggest fibromites should look at the children’s joke books, find something to laugh about (yourself in the mirror pulling funny faces), the old wedding photograph, run a favourite film on the video – read your favourite book…anything which will concentrate your brain and help you to close the pain gate. It has to be something you feel good about – forget looking at the bills – that won’t make you want to laugh. Remember think positive.
There are schools of thought who believe you can laugh yourself better – they say laughter is the best medicine. In the States and Australia they have laughter clubs – you go regularly to have a real good laugh which is apparently as good as an aerobic work-out.
Regarding co-proxamol I take them and apparently so do 72,000 others in the UK. I just wanted folk to know they are in danger of losing their supply unless they did something like writing to the Member of Parliament who has the power to reverse that decision.
So yes lori763 from Florida, I hope this explains why I was so passionate about co-proxamol. I had received a number of letters asking me to help save this painkiller, which oddly enough was already on my repeat prescription.
I agree the drug companies are in it for the money, but then so are the folk who manufacture food, clothes, cars, televisions – it is a fact of life. I feel passionate about helping anyone I can with FMS. But I also feel prescribing medicine is for the doctor (not the Internet). He will consider the patient’s other ailments such as`a dodgy heart for example.
I recently heard you can overdose by taking additional vitamins and I know this also applies to some of the complementary herbs. Try the Internet or look at
There is a lot of useful information but there is a small ad suggesting you buy something…but there is no obligation.
You really should seek medical advice at any time you are thinking of making a chance to what you are taking. So yes maybe we should be careful of SOME of these all-singing-all-dancing quick fixes we read about. How do we know the testimonials are true? I leave you with that thought.
Take care and keep well and best of all, think positive and be happy. Log onto the Internet and ask Google for funny jokes. I found 10 pages of them. Have fun. That will help I am sure. You just will not have any time to be ill.