Thursday, October 2, 2008
I've tried some methods to try to alleviate the pain, including extra pillows, etc. , but nothing works.
I have shoulder pain during the day, but I think that the sleeping exacerbates the issue.
The stomach pain at night is accompanied by some pretty severe body aches and a general feeling of discomfort.
I'm not sure if the pain is Humira related of just a flare due to the weather change (it's been in the 50's at night and 70's during the day).
Thursday, September 18, 2008
Some heat packs, Flexeril and Lortab later and I had enough relief to sleep for a bit.
Today, I still hurt (back, right are, down to my wrist) , but it's not as bad as yesterday, although my left shoulder is now burning.
Tuesday, September 16, 2008
Also, my Left shoulder seems a bit jealous because it is burning now.
If I could, I'd go home and lie in bed right now. I'm going to try to get up and go for a walk to see if that will help.
Friday, September 5, 2008
Today, I feel really tired. I'm not too sure why. Last night, I went to be around 22:00
Wednesday, September 3, 2008
Fibromyalgia: A Man's Perspective
A new study performed by researchers from a Swedish hospital of rheumatology offers new insights on how men experience fibromyalgia. Fourteen men who were either married or living with a female partner were encouraged to tell their FM story. Clarifications were elicited as needed. Transcripts of the 14 interviews were reviewed extensively by the researchers, and a structural analysis performed which divided the interviews into meaningful units. Three themes and seven sub-themes were identified and are summarized below:
Experiencing the Body as an Obstruction
Living with a reluctant body: As a group, the men tended to feel that their body was sluggish as well as constantly achy, painful, and/or stiff. Of great concern was that they were no longer able to participate in the same level of activities as they had before, and they reported feeling restless and anxious. Most of the sample, who were unable to work full-time (if at all), felt especially anxious about finances. One man stated, "Sometimes I think about working full-time, but hell, it's not possible".
Living day by day with a body in pain: The unpredictability of FM was a great frustration as it made the planning of daily life nearly impossible. Respondents reported that they now lived life one day at a time and sometimes minute-by-minute. During periods of severe pain, the men indicated that even the simplest tasks were difficult, and as a result they tended to avoid social contact--even if it was just answering the telephone or the door.
Being a Different Man
Not being the same man as before: The men had typically been very active before getting ill and had often been viewed by their peers as "cheerful and kind". After developing FM, however, they reported feeling "emptiness and shyness". Illness-related changes that caused them particular sadness were: difficulties concentrating on even the simplest tasks, meaningless (insulting) tasks that were given to those able to return to work, and difficulty controlling their temper during times of increased pain. Although the men were bothered early on by what other people thought of them and their situation, by the time of the interview they were much less concerned about others' demands on them.
Not being really understood: Although the men acknowledged that their friends and family members believed that they were experiencing pain, they felt that this was not the same thing as understanding what they were going through. What gave them particular grief, however, was knowing that their young children could not understand their illness and the reason why they could not play rough or noisy games with them.
Striving to Endure
Living as normally as possible: While the men felt it was important to maintain social contact with friends and relatives when symptoms weren't too severe, they were reluctant to allow others to see them ill and worried that they might be called "whiners". Stoic fathers or grandfathers who had "cheerfully" undergone suffering during their lives were often role models for the respondents. The men reported that they typically accompanied their families on holiday outings/trips, even when they knew it would be "torture" for them.
Searching for alleviation: The men felt they would be more cheerful and productive if only they could decrease their level of pain. They also felt that when pain was at its worst, they needed to be alone. Those who had been granted a disability pension described "feelings of finally gaining mental peace".
Having to nurture hope: While the men as a group were pessimistic about any chance of a life without pain, they did admit that they hoped their pain would not worsen. They spoke of the "necessity of never losing courage".
Meaning of Men's Lived Experiences of Living with Pain of Fibromyalgia Type, by Margareta Paulson, Ella Danielson, and Siv (Source: Struggling for a Tolerable Existence: The Soderberg, Qualitative Health Research, Vol. 12, No. 2, February 2002, 238-249.)
Dr. Mark Pellegrino has added via his book, Inside Fibromyalgia With Mark Pellegrino, M.D., Anadem Publishing 2001, the following insights. This book may be purchased by visiting Anadem Publishing at their Website: http://www.anadem.com.:
The two main risk factors for men are hereditary and trauma. Men with a parent or parents with fibromyalgia are at greater risk. Because men are less likely to seek medical attention for pain problems, they who finally present themselves to a doctor and are diagnosed with fibromyalgia usually have a more severe form.
On a men's exam there is nothing unique when compared to a woman. Outside of men having much lower estrogen levels, their tests give the same results.
Many men admit to strained interpersonal and intimate relationships. Men are very apt to physically express [yelling, anger, irritability, throwing things, etc.] their frustration with constant pain.
Many job skills require physical abilities, and if fibromyalgia interferes, job skills can not be performed forcing a man to highlight his inabilities and failures, instead of his abilities. This leads men to needing to pursue disability, because is usually is not possible or practical to simply find another job.
It can be more challenging for men to get out of the disabled or victim mode once they have entered it.
Affected men represent the "silent minority" in fibromyalgia.
Some of Mark Pellegrino's articles can be found and books also purchased through the "National Fibromyalgia Partnership, Inc".
Tuesday, September 2, 2008
Thursday, August 21, 2008
It's weird because there was no one in the room at that time. I'm thinking that it's a strange side effect of the Lyrica.
Wednesday, August 20, 2008
Anyway, I am now up to 150mg per day. I pray that this helps!
It's a little after 3:00PM and I feel exhausted. I am tired and yawning constantly. I know that caffeine isn't good, but I'm going to go see if there is some coffee in the lunchroom.
Friday, August 8, 2008
We gathered up my file from my previous doctors' visits and Diana went with me. The doctor was great! She gave me a checkup, took some blood and gave me prescriptions for what I was on before.
If anyone needs a good fibro doctor in Mid-TN, I recommend Dr. Cindi Jones!
Wednesday, June 4, 2008
Thursday, April 10, 2008
Hopefully, I will get to leave early today. I need a nap :), but I am rambling, so I am going to go now.
Friday, March 14, 2008
"Tell them what they've won, Johnny!", but instead of hearing "A new car!", you hear "You have Fibromyalgia."
Ummm... can I just take the parting gift of a years supply of Purina Goat Chow?
This is a print from one of the FM boards to which I belong. It is not my work and some of it is paraphrased, but it is excellent. It's from a conversation about comparing oneself (with Fibromyalgia) to someone without it.
You have fibromyalgia. You cannot compare yourself to someone who does NOT have it. It's not logical and is like comparing apples to... red meat. Irrelevant.
Having fibromyalgia means that all the following (and much, much more) are possible:
-- you'll have incessant, unrelenting, NON-STOP pain;
-- your emotions will be out of whack;
-- you'll have to ask for help when God KNOWS you'd rather die than have to ask for help
-- you'll have symptoms that are ridiculous and make NO damn sense.. not even to the doctors.
-- you'll have brain/chemical imbalances
-- you'll have cognitive difficulties
-- you'll want out of this ridiculous life that you never chose
-- you'll question the universe and the very beliefs that you hold near and dear and that make up your very essence
-- you'll ask Why me? It's not fair. Why me?
-- you'll ask why CAN'T I do anything anymore? It's not fair.
-- you'll wonder if you can do it. You'll think there's no way I can do this. I cannot go on.
-- you'll be depressed in ways that you've never been before
-- your body will give out in ways you could've never imagined
-- your life will be completely messed up.
You have Fibromyalgia.
No two fibromyalgia patients present with the same set of symptoms... (thus, we have no concrete cause, treatment or cure). If no 2 FM patients present with the same symptom set, then it makes no sense to compare ourselves to each other. Of course, that doesn't mean you can't "share" what's going on in your life and find value in learning how it "compares" to others. That's how we learn that we aren't alone and we learn better ways to cope with our lives and find the best one we possibly can manage.
That said, I maintain, you cannot compare yourself to someone who does not have Fibromyalgia. YOU have Fibromyalgia. On an FM pain scale, "our 5 would be a normals 10 and their 5 would be good the days for us." That's Fibromyalgia.
And until you've had it, you cannot begin to imagine how horrid it is; how life-altering it is. While we may admire these people for the lives they've lived and the character of their souls, they cannot begin to understand what it's like to have FM unless they have some very similar illness.
But through each other we gain strength. Maybe we can quit comparing ourselves to normals and accept ourselves where we are, right here, right now -- and in the meantime, throw away those out-dated concepts of strength that not only hurt us and throw us on a very bad mental path but also tear us down physically because we get stuck in this whole concept of what courage and strength is or is not.
You HAVE Fibromyalgia.
Having fibromyalgia can also mean that any of the following (and much, much more) are possible:
-- you'll learn that you are stronger than you EVER thought possible
-- you'll learn to grieve your losses and will become stronger for it
-- you'll learn to realign your thinking and throw away the "values" and "beliefs" that worked for you when you were "normal" but no longer work for you as someone with FM
-- you'll learn to ask for help when God KNOWS you'd rather die than have to ask for help
-- you'll learn to deal with symptoms that are ridiculous and make NO sense.. not even to the doctors.
-- you'll learn techniques to deal with and make it through these stupid brain/chemical imbalances and cognitive difficulties... even if it just means you keep on keeping on
-- you'll learn that you CAN go on. You CAN do it.
-- you'll want out of this ridiculous life that you never chose.. but you'll learn to live DESPITE the illness
If you ask me, strength and courage is having some terrible disease like Fibromyalgia but continuing to put one foot in front of the other, every single day and doing the best you can in the here and now to find the best life for YOU. In my book, THAT'S courage.
Monday, March 10, 2008
At least my cognative functions are normal for now, except that I am really tired.
Last night, I got 6 hours of sleep, which is pretty good.
Wait, I take that back for now, my back just had a spasm. It hurts to move, to breathe... Now, I'm a 9.
I wish the pain would stop or that I could be home right now...
Wednesday, January 16, 2008
(Jan. 14) - 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.
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.”