Fibromyalgia Information and Advice

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CirclingRaven
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Fibromyalgia Information and Advice

Postby CirclingRaven » 04 Oct 2007, 19:46

Hello Everyone! :hiya:

I was sent this a day or two ago via my daily Care2 newsletter, and found it very interesting:


Research may explain why common drugs don't help

People who have the common chronic pain condition fibromyalgia often report that they don’t respond to the types of medication that relieve other people’s pain. New research from the University of Michigan Health System helps to explain why that might be: Patients with fibromyalgia were found to have reduced binding ability of a type of receptor in the brain that is the target of opioid painkiller drugs such as morphine, according to Eurekalert, the news service of the American Association for the Advancement of Science.

The study included positron emission tomography (PET) scans of the brains of patients with fibromyalgia, and of an equal number of sex- and age-matched people without the often-debilitating condition. Results showed that the fibromyalgia patients had reduced mu-opioid receptor (MOR) availability within regions of the brain that normally process and dampen pain signals – specifically, the nucleus accumbens, the anterior cingulate and the amygdala.

“The reduced availability of the receptor was associated with greater pain among people with fibromyalgia,” says lead author Richard E. Harris, Ph.D., research investigator in the Division of Rheumatology at the U-M Medical School's Department of Internal Medicine and a researcher at the U-M Chronic Pain and Fatigue Research Center.

“These findings could explain why opioids are anecdotally thought to be ineffective in people with fibromyalgia,” he notes. The findings appear in The Journal of Neuroscience. “The finding is significant because it has been difficult to determine the causes of pain in patients with fibromyalgia, to the point that acceptance of the condition by medical practitioners has been slow.”

Opioid pain killers work by binding to opioid receptors in the brain and spinal cord. In addition to morphine, they include codeine, propoxyphene-containing medications such as Darvocet, hydrocodone-containing medications such as Vicodin, and oxycodone-containing medications such as Oxycontin.

The researchers theorize based on their findings that, with the lower availability of the MORs in three regions of the brains of people with fibromyalgia, such painkillers may not be able to bind as well to the receptors as they can in the brains of people without the condition.

Put more simply: When the painkillers cannot bind to the receptors, they cannot alleviate the patient’s pain as effectively, Harris says. The reduced availability of the receptors could result from a reduced number of opioid receptors, enhanced release of endogenous opioids (opioids, such as endorphins, that are produced naturally by the body), or both, Harris says.

The research team also found a possible link with depression. The PET scans showed that the fibromyalgia patients with more depressive symptoms had reductions of MOR binding potential in the amygdala, a region of the brain thought to modulate mood and the emotional dimension of pain.

The study subjects were 17 women with fibromyalgia and 17 women without the condition.


Hope others find this informative too! :)

Bright Blessings,
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Re: Fibromyalgia Information and Advice

Postby LadyCelt » 04 Oct 2007, 22:12

Very interesting! I'm going to pass it on at the creakyjoints.com message board. :hug:
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Re: Fibromyalgia Information and Advice

Postby Lady Nimue » 05 Oct 2007, 00:47

Fabulous!
Im thrilled to have this thread, ad hope that it will be considered a resource of comfort.
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Re: Fibromyalgia Information and Advice

Postby CirclingRaven » 05 Oct 2007, 12:23

Hi LadyCelt and Lady Nimue! :hiya:

Glad you both think it helps! It's nice to have somewhere to post info when I come across it, and to know that it will be spread to other boards who can use it too. :D

As for the thread becoming a 'resource of comfort', for me, just finding this board and meeting you all has been a great help! :D :hug: :love:


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Re: Fibromyalgia Information and Advice

Postby Jaguar » 07 Oct 2007, 15:04

I've got a bunch of things to add, but at the moment I have bronchitis :( , so if you all can bear with me for a couple of days, I'll get some info up later in the week.

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Re: Fibromyalgia Information and Advice

Postby Lady Nimue » 07 Oct 2007, 15:19

Looking forward to it, Jaguar.
Try a humidifier, or a hot, steamy bathroom...it may help to loosen the phlegm.
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Re: Fibromyalgia Information and Advice

Postby Tanglewood » 07 Oct 2007, 20:01

This article explained a lot! I feel like sending it to every physician I've ever had to deal with over the past ten years. Why is it that the only ones who really know what this disease is about are the ones who have it? Here in the US there are still many doctors who don't believe it exists.
Sorry, I am ranting and this isn't the place for it.
I am glad Fibromyalgia is being discussed here because there may be more of you who can share natural products, medicines and coping strategies to help with those who must live with this stupid illness.

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Re: Fibromyalgia Information and Advice

Postby Shandara » 08 Oct 2007, 02:00

It is an excellant article - I'm glad to hear that scientists are finally getting a deeper understanding of the condition. I hope this new understanding leads to better treatments and eventually a cure for the condition.
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Re: Fibromyalgia Information and Advice

Postby Griffin » 08 Oct 2007, 21:21

My hubby has a chronic pain condition following an accident 3 years ago when a speeding motorist came around a school bus on the wrong side of the road and hit him head-on. He was on a motorbike at the time, and lucky to survive (thankfully the bike was a Harley Davidson and they're built a bit like tanks!).

Naturally, we were left without his income, and ended up fighting an insurance company for settlement. As (cynically, I'm afraid) it's in the interests of the "guilty" party's side to try to patch things up as quickly as possible he was sent to see various pain specialists who tried ever-increasing quantities of opiates, including painfully injecting them into areas of damaged nerve endings. Excruciating, as you can imagine, I was with him at the time and honestly felt like running to the nearest toilet and being sick ....

The opiates did nothing for the pain ..... but, thankfully, homoeopathic remedies in very high potency are incredibly effective.

The main trio for pain are Aconite, Chamomilla, and Coffea and the potency that seems to be the most effective is 10M (which, I'm afraid, you can only get via a qualified homoeopath or a homoeopathic pharmacy - I'm one of the former).

Aconite sounds a bit dangerous, which it certainly would be in herbal mother tincture being highly poisonous - but the homoeopathic method of preparation takes out all the toxicity.

He's still in pain, but far less than he was and is able to get on with life again - thankfully.

Blessings /l\

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Re: Fibromyalgia Information and Advice

Postby CirclingRaven » 11 Oct 2007, 13:45

Hi Everyone! :hiya:

Hope you are feeling a bit better now Jaguar! :hug: Looking forward to reading the info you've got. :)

Tanglewood, I understand completely where you're coming from. :hug:

Glad you found the article useful Shandara! :D

Griffin, the information on homeopathic remedies is great. I'll be looking into what's available in the UK. :yay:

Brightest Blessings to Everyone!
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Re: Fibromyalgia Information and Advice

Postby CirclingRaven » 15 Jan 2008, 14:19

I have received a new email newsletter with more information about Fibromyalgia. It is depressing reading in places, as you will probably have encountered similar opinions from some physicians/acquaintances:

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.

Jamie Rector for The New York Times

Lynne Matallana, who says she has fibromyalgia, said the drugs would aid acceptance.

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 has started a television advertising campaign for the drug Lyrica, the first approved to treat fibromyalgia.

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.”


Hope this helps even a little.
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Re: Fibromyalgia Information and Advice

Postby Lady Nimue » 15 Jan 2008, 15:07

Thank you for this CR...very caring of you.
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Re: Fibromyalgia Information and Advice

Postby kyrie » 15 Jan 2008, 19:36

Thanks for posting this, I hope you don't mind, but I'd like to copy and paste it to a site with friends who also have FM.

I would love for those docs who poo poo FM to have to go through the chronic pain for a few months and see what they think then. :x

I use Lyrica, and it has helped tremendously. I just can't afford it, but this article says that there is a generic name, so I'm going to see if it's available as a generic, and if not, contact the manufacturer to see if they can help me. $40 a month is just too much for me to afford right now, but the relief I get and the good sleep I get is just too precious to not take it.
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Re: Fibromyalgia Information and Advice

Postby Tanglewood » 18 Jan 2008, 20:24

I always wonder why pain is usually the issue disscussed when talking about Fibromyalgia. There are many other symptoms as well. The chronic fatigue is horrible and is often accompanied with some memory loss, inability to focus and depression. The clumsiness from the slight loss of muscle control is embarrassing- people tend to think you are drunk- and when a Fibromyalgia patient is in a real bad patch their speech can be a bit slurred as well. I know several people who claim that they have this disease, but when they describe the symptoms it is almost laughable. One woman I know came to me saying that her wrists were sore and her physician diagnosed her with Fibromyalgia. She works full time and plays tennis a couple times a week. Fibromyalgia patients usually need to cut back on their work hours, some have to retire altogether. Those of us that have this disease live what I call a half life. I get so angry when others claim that it is a syndrome that woman in middle age crises come up with for attention. Who in their right mind would want to live like this? My goal for myself is to keep that half life as good and as enjoyable as possible. I am looking forward to the new medications even though I am afraid of them right now. If anyone else is using these new medicines please share your thoughts.

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Re: Fibromyalgia Information and Advice

Postby Shadow Cat » 19 Jan 2008, 04:23

I was looking around and came across this board and was very interested in it.

I like all the info. on Fibromyalgia that is on here. I am a member of a FM board and will pass it on to them. I also have FM, not just my wrists hurting... lol.

My wife and I have been doing research into Druidism... I guess that is correct.? We are finding that much of what we have found out fits us pretty good.
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Re: Fibromyalgia Information and Advice

Postby Twig » 19 Jan 2008, 08:02

Ya just never know--- :huh:

I never dreamed my Druid-quest would land me up against my 21-year struggle with FM/ME (CFS, unfortunately, in the United States).

I know lots of good research sites, message boards, etc. if anyone out there is just coming to terms with this maddening disease. I will not say "Try this," because it's a useless thing to say. We all deal with it differently. You can pm me if you like.

The best thing that's come out of it for me is that it has intensified my spiritual search, because sometimes the pain, exhaustion, and lack of understanding by not only friends and family but physicians as well, brought me up against the point of deciding whether or not to continue my life. When you get there, something big changes.
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Re: Fibromyalgia Information and Advice

Postby Aigeann » 20 Jan 2008, 20:15

Welcome to the Board, Shadow Cat~!
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Re: Fibromyalgia Information and Advice

Postby Shadow Cat » 20 Jan 2008, 21:36

Thank you for the welcomes. I have been fighting with FM for 17 +/- years now and have the rest of my life to look forward to its' company. I was dx with it when I was 18 from a doc. that was studing it and my own doc. dx. me with it when I was 20 in writing. There are other things wrong with me that I will post later on. I am still sifting through the site and reading all the information on here.
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Re: Fibromyalgia Information and Advice

Postby Lady Nimue » 21 Jan 2008, 02:01

Hi Shadowcat...and welcome, again.
I hope that Druidry speaks to you, but regardless this community is here for you and your wife.
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Re: Fibromyalgia Information and Advice

Postby Twig » 21 Jan 2008, 02:05

Shadow Cat: It is an... interesting and enlightening journey. Keep in touch
"...some part of me is tree." -- Stephanie Kaza (Buddhist author)

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