“Apprehension, uncertainty, waiting, expectation, fear of surprise, do a patient more harm than any exertion” Florence Nightingale
It is with great pleasure and excitement that I have accepted to be the editor of the Florence Nightingale Newsletter. Done by and for fibromyalgia sufferers we all aim to make our life better. You have already met Philippe who makes a sterling job running the site and you have read Dr Susan Wong's comments on the blog. Behind the scenes there are many helpers and doctors who graciously give their free time and even money to keep this website running. Everything we sell through the site goes back in it. Our donors want to be kept anonymous and we thank them for their generosity. Many have retired or not working through disease or age but they still want to be active and this is an opportunity for them. By helping others, they feel better.
But my biggest thanks go to all our readers and visitors. We have had many one-on-one chats through emails and whenever we could help it was uplifting for us.
This is the Florence Nightingale spirit!
Big hugs to everyone. Remember you're not alone!
Squadron Leader, Pirates Captain & Other Fibromyalgia Support Groups Leaders
The past few months have seen real battle groups come on board. With courage and resilience, they are meeting to their own benefit.
The first time I came across a group of fibro sufferers I was flabbergasted. Here they were, not knowing each other and attending a presentation on fibromyalgia. The speaker was quite open and made them interact. And the heck they did! They were surprised to discover that others were suffering like they did. They were amazed to find out that others had similar symptoms but also different ones that they did not have. Finding similarities creates the bond of not being alone. Finding that someone had other symptoms creates an unconscious relief: "At least I don't have that one"! Suddenly, they can talk to people who listen and understand. They exchange tips on how to cope. By putting the disease "on the table in the open", it becomes an observational position. Instead of "being the disease", we can look at it. It's not us anymore, it's This.
Congratulations to all those that have set up a group and I am not talking only of the leaders but also of the group itself. Your activity is remarkable and provides so much relief. But often you do have specific questions and unless you have a deep knowledge, the answers may escape you. This is why an open access on our (I should say Your) website is important. Others may have the response and when I see an unanswered question, I pass it to doctors who believe in fibromyalgia and get back to you. Unhappily, this may require some time before it gets back but better late than never.
So use your website, it may help you and others.
By the way, I edit your messages to keep them neat. You may be tired, you may get a bit stressed so I clean it. I will also bin any stupid comments that clutter the forums such as criticizing someone's misspellings. This is out of order, unnecessary and stressful. We don't need more stress in our life. True, sometimes we all need a punching bag. In that case I'll make a personal discreet response without making it a show.
Remember: first step is knowledge, second step is support.
We are taken to the cleaners!
In therapy we may express the benefit of a drug by the Number Needed to Treat or NNT. That is the number of patients you have to give the drug to benefit one patient. For example, an NNT of 2 means you have to give the drug to 2 patients for the benefit of one patient. If the NNT is 5, it means you have to give the drug to 5 patients to benefit one patient. The higher the NNT number the poorer the drug result. The ideal drug has an NNT of 1: each patient taking the drug is benefitting from it.
Conversely, we may also express the side-effects and complications of the drug by the Number Needed to Harm or NNH. In that case, the higher the number, the least toxic the drug. In case the NNH number is lower than the NNT, the drug is toxic to more patients than it is beneficial to some.
Two very serious reviews have had a look at neuropathic pains. Because there is variation from one type of pain to another, I have summarized the results for diabetic neuropathy so we can compare what's comparable. Don't go away, it's got a relation to fibromyalgia!
NNT (the lower the better)
Pregabalin (Lyrica): 5
NNH (the higher the better)
There is no discussion that carbamazepine and phenytoin are the best: Lower NNTs and higher NNHs
Gabapentin is a shame: higher NNT and an NNH lower than the NNT!
Pregabalin (Lyrica) which is the new one on a multi-billion market has a higher NNT than the others and should never have been accepted. Its NNH is close to 1 (unstated in the studies but obvious by the side effects numbers in reference 3). This means that it is almost always toxic and seldom beneficial.
Now let's get the shivers
The cheapest: Carbamazepine (Tegretol) and Phenytoin (Dilantin)
Gabapentin (Neurontin) and Pregabalin (Lyrica): 2-3 times more expensive!
So, what's in it for fibromyalgia.
For fibromyalgia the NNT of pregabalin (Lyrica) is a staggering 11. Almost all patients will have side-effects and only one patient in 11 will benefit (and for how long?)!!!
The same pharmaceutical company that makes Neurontin and Lyrica has been fined twice by the FDA for false claims and false advertisement to the doctors. The fines now run to over 2 billion US$. They approach doctors and make false claims about fibromyalgia because those fines represent only 3 months profit! How the heck have those drugs been allowed on the market when we already had better and cheaper drugs?
Any right minded doctor presented with those numbers would refuse to prescribe those drugs.
Susan Wong, MD
1- Cochrane Database Syst Rev. 2010 Jan 20;(1):CD001133.
Anticonvulsant drugs for acute and chronic pain.
Wiffen PJ, Collins S, McQuay HJ, Carroll D, Jadad A, Moore RA.
2- Cochrane Database Syst Rev. 2009 Jul 8;(3):CD007076.
Pregabalin for acute and chronic pain in adults.
Moore RA, Straube S, Wiffen PJ, Derry S, McQuay HJ.
3- Neurology. 2010 Mar 2; 74(9):755-61. Cognitive effects of pregabalin in healthy volunteers: a double-blind, placebo-controlled trial.
Salinsky M, Storzbach D, Munoz S.
Summary: All healthy volunteers had negative cognitive effects with Pregabalin.
Fibromyalgia Test: More Results
Some of you may remember receiving a letter from Philippe announcing this Newsletter. He revealed some data from the fibromyalgia test.
"Over the 689 first fibromyalgia tests, 467 had a fibromyalgia diagnosis close to 100%.
455 of those 467 had two or more painful joints!"
Another 4 had pain in one joint.
This is an indication of why fibromyalgia is often seen by rheumatologists, a specialty that looks after diseased joints.
396 of those 467 or 85% suffer from sudden feelings of being very cold or very hot. This is a staggering number!
Considering that 393 also complain of foggy brain, it is no wonder that life is miserable. And most of the time, doctors can't see it. I do remember a woman who had to walk around with her towel because she had sudden flares of sweat. But most of the time, those symptoms are unseen.
With those numbers and more to come, we hope to be able to educate all the doctors, carers, family members and fibro sufferers about fibromyalgia.
Susan Wong, MD
See you next time and don’t forget: You are not alone!
To understand why you suffer from fibromyalgia, click on the book!
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Florence Nightingale Newsletter. Copyright 2010
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