If you are facing Fibromyalgia you will find lots of information here to help you understand the science behind it, the treatments available, including alternative treatments,coping strategies and my personal journey with it.
The day is passing The feathery bed is all That is left for me. This is my first attempt at a haiku in many years. I think we studied and wrote them in high school. They appealed to my seventeen year old self and now again they appeal to my old self - the part that lives in pain. I wrote this as April 17th is Haiku Poetry Day.
If there’s one thing that we remember from High School, it’s the day that we were introduced to the great Japanese art-form that is Haiku. While it may have an ancient and noble history, it is likely at it’s most ignoble when a group of young kids try to cobble together Haiku in series of five-seven-five. Haiku Day reminds us that there is so much more to this style of poetry than a misspent week in our literature courses! Days of the Year
I think the following haiku titled 'pain is your prison' by Peter Galen Massey describes Fibromyalgia well.
when the true pain comes / the body is your prison / and your enemy The Haiku is a traditional form of Japanese poetry written in three lines. The first and last lines of a Haiku have 5 syllables and the middle line has 7 syllables. The lines rarely rhyme. Haiku is a mood poem. They began to appear as an independent poem, in Japan, by the time of Matsuo Bashō (1644–1694) who wrote many in his lifetime. Basho was the most famous poet of the Edo period in Japan. During his lifetime he was recognized for his poetry and today he is recognized as the greatest master of haiku.
So what should haiku accomplish? What should it provide the reader? According to the classic haiku poets of Japan, haiku should present the reader with an observation of a natural, commonplace event, in the simplest words, without verbal trickery. The effect of haiku is one of "sparseness". It's a momentary snatch from time's flow, crystallized and distilled. Nothing more. LITERARY KICKS
The discovery could be an important turning point in care of patients with a disease that is frequently misdiagnosed or undiagnosed, leaving them without proper care and advice on managing their chronic pain and fatigue, said lead researcher Kevin Hackshaw, an associate professor in Ohio State’s College of Medicine and a rheumatologist at the university’s Wexner Medical Center.
Identification of biomarkers of the disease – a “metabolic fingerprint” like that discovered in the new study – could also open up the possibility of targeted treatments, he said.
To diagnose fibromyalgia, doctors now rely on patient-reported information about a multitude of symptoms and a physical evaluation of a patient’s pain, focusing on specific tender points, he said. But there’s no blood test – no clear-cut, easy-to-use tool to provide a quick answer.
“We found clear, reproducible metabolic patterns in the blood of dozens of patients with fibromyalgia. This brings us much closer to a blood test than we have ever been,” Hackshaw said.
Though fibromyalgia is currently incurable and treatment is limited to exercise, education and antidepressants, an accurate diagnosis has many benefits, Hackshaw said. Those include ruling out other diseases, confirming for patients that their symptoms are real and not imagined, and guiding doctors toward disease recognition and appropriate treatment.
“Most physicians nowadays don’t question whether fibromyalgia is real, but there are still skeptics out there,” Hackshaw said.
And many undiagnosed patients are prescribed opioids – strong, addictive painkillers that have not been shown to benefit people with the disease, he said.
“When you look at chronic pain clinics, about 40 percent of patients on opioids meet the diagnostic criteria for fibromyalgia. Fibromyalgia often gets worse, and certainly doesn’t get better, with opioids.”
Hackshaw and co-author Luis Rodriguez-Saona, an expert in the advanced testing method used in the study, said the next step is a larger-scale clinical trial to determine if the success they saw in this research can be replicated.
The current study included 50 people with a fibromyalgia diagnosis, 29 with rheumatoid arthritis, 19 who have osteoarthritis and 23 with lupus.
We found clear, reproducible metabolic patterns in the blood of dozens of patients with fibromyalgia. This brings us much closer to a blood test than we have ever been.
Dr. Kevin Hackshaw
Researchers examined blood samples from each participant using a technique called vibrational spectroscopy, which measures the energy level of molecules within the sample. Scientists in Rodriguez-Saona’s lab detected clear patterns that consistently set fibromyalgia patients’ blood sample results apart from those with other, similar disorders.First, the researchers analyzed blood samples from participants whose disease status they knew, so they could develop a baseline pattern for each diagnosis. Then, using two types of spectroscopy, they evaluated the rest of the samples blindly, without knowing the participants’ diagnoses, and accurately clustered every study participant into the appropriate disease category based on a molecular signature.
“These initial results are remarkable. If we can help speed diagnosis for these patients, their treatment will be better and they’ll likely have better outlooks. There’s nothing worse than being in a gray area where you don’t know what disease you have,” Rodriguez-Saona said.
His lab mostly concerns itself with using the metabolic fingerprinting technology for food-related research, focusing on issues such as adulteration of milk and cooking oils and helping agriculture companies figure out which plants are best suited to fight disease.
The chance to partner with medical experts to help solve the problem of fibromyalgia misdiagnosis was exciting, said Rodriguez-Saona, a professor of food science and technology at Ohio State.
Rodriguez-Saona said for the next study he’d like to examine 150 to 200 subjects per disease group to see if the findings of this research are replicable in a larger, more-diverse population.
Hackshaw said his goal is to have a test ready for widespread use within five years.
Fibromyalgia is the most common cause of chronic widespread pain in the United States, and disproportionately affects women. The U.S. Centers for Disease Control and Prevention estimates that about 2 percent of the population – around 4 million adults – has fibromyalgia. Other organizations estimate even higher numbers.
About three in four people with fibromyalgia have not received an accurate diagnosis, according to previous research, and those who do know they have the disease waited an average of five years between symptom onset and diagnosis. Common symptoms include pain and stiffness all over the body, fatigue, depression, anxiety, sleep problems, headaches and problems with thinking, memory and concentration.
Eventually, this work could lead to identification of a particular protein or acid – or combination of molecules – that is linked to fibromyalgia, Rodriguez-Saona said.
“We can look back into some of these fingerprints and potentially identify some of the chemicals associated with the differences we are seeing,” he said.
In addition to identifying fibromyalgia, the researchers also found evidence that the metabolic fingerprinting technique has the potential to determine the severity of fibromyalgia in an individual patient.
“This could lead to better, more directed treatment for patients,” Hackshaw said.
Other Ohio State researchers involved with the study were Didem Aykas, Gregory Sigurdson, Marcal Plans Pujolras, Francesca Madiai, Lianbo Yu and Monica Giusti. Tony Buffington, formerly of Ohio State and now at the University of California, Davis, was also a co-author.
The research was supported in part by the Columbus Medical Research Foundation.
Lucille Ball was an amazing women. She did not have fibromyalgia but she did fight adversity. She was a pioneer in a man's world, a female comedian and actress who went on to be a studio executive and producer. Actually Lucille Ball was the first woman to run a production studio, without a man’s help, and the first woman to receive the gold medal from the International Radio and Television Society. In 1951, I Love Lucy made its television debut pioneering a new sitcom style that continues to influence television to this day.
When Lucille was in her late teens she was struck with a mystery illness that caused so much pain that she could not walk. It kept her bedridden for two years. Many people believe it was a form of arthritis that flared up occasionally in her life and stopped her from working. The 1960 Broadway musical Wildcat she was in ended its run early when Lucille became too ill to continue.
Lucille is not remembered for her illness... she will always be remembered for her comedy and her bright and bubbly outlook on life. I have collected here a few things she is known to have said that I find inspirational especially when living with chronic illness as she did.
Love yourself first and everything else falls into line. You really have to love yourself to get anything done in this world. Not everything that is faced can be changed, but nothing can be changed until it is faced. Knowing what you can not do is more important than knowing what you can do. It's a helluva start, being able to recognize what makes you happy. I believe that we're as happy in life as we make up our minds to be. One of the things I learned the hard way was that it doesn't pay to get discouraged. Keeping busy and making optimism a way of life can restore your faith in yourself I want you please not to be taken up in the undertow of pessimism. Whether we're prepared or not, life has a habit of thrusting situations upon us.
So what do you want me to say? That I am good now? all good, everything good? That I got a diagnosis and now I am magically fixed? Not many illnesses are like that are they? Well I know chronic illnesses and pain illnesses and autoimmune illnesses are not. Let's just take autoimmune conditions for a moment. The current view is that there are 100 conditions and 40 suspect ones and I cannot think of one that has a cure. They are life long conditions that need life long treatment and have a huge impact on the lives of those with them and those closest to them.
Chronic disease: A disease that persists for a long time. A chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear. MedicineNet
So where did this idea come from that we get a diagnosis and then we are cured? It's a mystery to me and one that I may need to investigate some time in the future but right now I am paddling my feet under water like a duck so that I can look this amazing. I am paddling so madly that it takes all my efforts.
And you look so good... I hear you say.
Well truth be told I have a whole bag of tricks that I carry with me, everywhere, that help me every single day. I have collected the contents of this bag over 20 years of living with chronic pain.
Pain is the most common reason that people seek medical help—yet it remains one of the most neglected and misunderstood areas of healthcare. PAIN AUSTRALIA
Most people don't realize how little their doctor knows about chronic pain. It’s up to the individual with pain to learn as much as they can about effective treatments and how pain affects them, so they can improve their quality of life.
Chronic pain affects more than your body. It's psychologically stressful and can lead to emotions like anger and frustration which is probably why I started this post in that tone.
If your interested in finding out about the contents of my metaphorical bag of tricks for coping with the chronic life you can sign up for my newsletter. I include tips and advice from experts and people living with chronic pain, mostly evidence-based treatment and ideas that I have garnered over the years. I send it out usually once a week.
It's good that Lady Gaga was talking openly about fibromyalgia, don't you think? Here are some things that she has said about living with it...
Living with any chronic pain condition is not fun and to get support for it from people in the limelight is wonderful. I think this is especially true of Fibromyalgia which still has the stigma of not being taken seriously, by many people, even some in the medical profession. When people are in the process of getting a diagnosis we have to tell them to make sure they go to a professional who believes in Fibromyalgia. You don't have to say that about many other conditions!
So when Lady Gaga began talking about having Fibro it felt like the Fibro community around the world was being given validation.
As we would expect from Lady Gaga she was being outspoken about what it's like to live with this chronic pain condition.
In her 2017 documentary Gaga: Five Foot Two we see her in pain and having ice-packs, massages and medications but it is not explained. After the release of the film Lady Gaga tweeted to her fans: "In our documentary the #chronicillness#chronicpain I deal w/ is #Fibromyalgia I wish to help raise awareness & connect people who have it." 12th September 2017.
12th September 2017
12th September 2017 on twitter
In her cover interview for Vogue, in October 2018, Gaga discussed her past trauma and it's affects on her chronic pain. "My diaphragm seizes up. Then I have a hard time breathing, and my whole body goes into a spasm. And I begin to cry," she told the magazine. "That’s what it feels like for trauma victims every day, and it’s . . . miserable. I always say that trauma has a brain. And it works its way into everything that you do."
In the same interview she talked about how people perceive fibromyalgia and other chronic illnesses:
"I get so irritated with people who don't believe fibromyalgia is real. For me, and I think for many others, it's really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive, and then you have nerve pain as a result," she said. "People need to be more compassionate. Chronic pain is no joke. And it's every day waking up not knowing how you're going to feel."
Quote from Vogue 2018
Quote from Vogue 2018
Quote from Vogue 2018
We hope that Lady Gaga will continue to speak out about Fibromyalgia to help the cause of Fibro. We wish that she would talk about her treatments to help the millions of people who live with it.
SNPs (Single Nucleotide Polymorphisms) are variations in the genetic sequence and are associated with disease. When SNPs occur within a gene or in a regulatory region near a gene, they may play a more direct role in disease by affecting the function of the gene.
The study was approved by the Institutional Review Board of City of Hope National Medical Center, City of Hope, Duarte, CA, United States of America.
Some earlier studies have suggested that there is a genetic component to Fibromyalgia and this study has built on that.
A total of 220 patients with fibromyalgia and their parents were recruited into the study.
Patients were diagnosed using American College of Rheumatology criteria including musculoskeletal pain that exists for over three months, associated with fatigue, depression, cognitive difficulty and irritable bowel. Patients with rheumatoid arthritis and systemic lupus erythematosus were excluded from the study.
Fibromyalgia (FM) is a chronic pain syndrome with a high incidence in females that may involve activation of the immune system. We performed exome sequencing on chemokine genes in a region of chromosome 17 identified in a genome-wide family association study.
This sequencing on the genes was done on DNA from blood immune cells. Scientists analyzed the four SNPs from parents to fibromyalgia patients, and found only one of them in the CCL11 gene, was associated with a risk of the disease. After further analysis they noted that the levels of CCL11 protein were statistically higher in most of fibromyalgia patients.
“While the elevated expression of CCL11 is a common event, the inability to generate a robust CCL11 response predisposes up to 36% of patients with a higher likelihood of FM."
“This study provides evidence that rs1129844 in CCL11 may be a useful marker for FM and that the high frequency of this SNP in FM patients (36.8%) argues for an underlying immune connection.”
SNPs with significant TDTs were found in 36% of the cohort for CCL11 and 12% for MEFV, along with a protein variant in CCL4 (41%) that affects CCR5 down-regulation, supporting an immune involvement for FM.
In summary, we present evidence at both the genetic and functional level that the immune system may be involved in FM in roughly half of a cohort of 220 FM patients for which SNPs in CCL11 and MEFV gave significant TDTs. Considering that activation of the immune system is often associated with neurological systems such as pain, the involvement of the immune system in FM does not rule out the prevailing hypothesis that FM is predominantly a pain syndrome. With this in mind, further studies on larger number of patients may help to validate the link between pain and the immune system in FM.
Fibromyalgia is a chronic pain condition that causes pain throughout the whole body. It involves fatigue, memory and concentration problems, sleep issues, and other symptoms.
There has been an increase, in recent years, in research on the causes of fibromyalgia. It is thought that a combination of different factors play a role in its development.
Doing this research must be difficult. One reason for this would be that a lot of people who have fibromyalgia also have other medical conditions such as thyroid conditions, lupus, other pain disorders or depression. So it would not be easy to decide which symptoms are caused by fibromyalgia or one of the other conditions.
Fibromyalgia is thought to be caused by changes in the way that pain messages are processed in the brain. Researchers think this is set off by a combination of genetic factors and physical or emotional stress.
Many people feel that their fibromyalgia symptoms developed after a physically or emotionally stressful event. Others feel it was not one specific distressing or traumatic event but long term exposure to stress for many years.
A fibromyalgia gene has not yet been discovered but fibromyalgia does certainly run in some families. Through research certain types of genes have been found to be more common in people who have fibromyalgia than in control groups. These genes play a role in the nervous system's response to pain. Some of the same genes are associated with depression and anxiety, which may be the reason why certain antidepressant medications help reduce fibromyalgia symptoms.
Many experts agree that fibromyalgia is the result of an abnormality in the central nervous system that increases sensitivity to pain.
"Most researchers accept that fibromyalgia is caused by increased sensitivity within the pain-related nervous system. The majority of clinicians — myself included — believe that the condition is “top-down” in that it is driven by a change in the modulating factors of the brain." Dr G. Littlejohn
This is a bit of a case of which came first the chicken or the egg because researchers aren’t sure if this is a symptom or a cause of fibromyalgia. Problems getting to sleep and getting into the deepest stages of sleep are common in Fibromyalgia.
"Some people who have disorders affecting sleep, such as sleep apnea and restless leg syndrome (RLS), are more likely to have the condition." Healthline
People with Fibromyalgia live in the hope that research, into the cause of this condition will enable them to treat it properly and prevent others from getting it.
Fibromyalgia is a disorder characterized by widespread musculoskeletal chronic pain and many symptoms including painful menstrual cycles.
Endometriosis is a painful condition that affects a woman's reproductive organs.
Autoimmune disease occurs when the immune system attacks healthy organs and tissues within the body. There are over 80 autoimmune diseases.
The aim of this study was to investigate the prevalence of and the association between endometriosis, fibromyalgia and autoimmune disease (AID) in a large population.
To investigate the prevalence of and the association among endometriosis, fibromyalgia, and autoimmune diseases, a group of researchers did a retrospective analysis of data from the Maccabi Healthcare Services (MHS), a large healthcare plan in Israel.
The analysis included women diagnosed with endometriosis and/or fibromyalgia and a control group of women without either of the conditions.
In total, 781,571 adult women were considered eligible for the study, of whom 6,647 had endometriosis and 25,425 had fibromyalgia. Existence of both conditions was detected in 401 of the cases.
Women with both fibromyalgia and endometriosis had:
a high prevalence rate of AID compared to women with no diagnosis of endometriosis/fibromyalgia
an increased healthcare resource utilization (HCRU)
an increased history of depression or anxiety
inflammatory bowel disease (IBD) in 6.2%
other autoimmune diseases including systemic lupus erythematosus and Sjögren syndrome.
Interestingly many of the women with both conditions were diagnosed with fibromyalgia before endometriosis.
The existence of fibromyalgia was significantly higher in women with endometriosis than in the control group.
Women with both conditions had a higher rate of hospitalizations, than the control group, highlighting the negative impact of these disorders on quality of life.
This study shows that the existence of autoimmune diseases is higher in women with endometriosis and fibromyalgia. These findings support the hypothesis that both endometriosis and fibromyalgia have an autoimmune component.
Hopefully these results contribute to developing a more thorough approach to managing the complex needs of these women.
Diagnosing either or both conditions should raise the possibility of the existence of autoimmune diseases.
Co‐occurrence of endometriosis and fibromyalgia is associated with a high burden of autoimmune disease, anxiety/depression, and HCRU.
The thyroid is a small but incredibly influential gland located in the front of the neck. Those who are familiar with this powerful piece of anatomy know that it has a significant impact on numerous regions including the metabolism, brain, and weight regulation. Because of the thyroid’s broad influence, dysfunction of this system can result in the development or continuation of many serious conditions such as fibromyalgia.
Unfortunately, the relationship between the thyroid and fibromyalgia is frequently overlooked.
Thyroid dysfunction shares many similarities with a hypothalamic condition known as fibromyalgia. Those suffering from hypothyroidism, and to a lesser degree hyperthyroidism, frequently develop fibromyalgia or at the very least exhibit symptoms similar to it.
Is the HPA Axis the Missing Link?
The connection between thyroid disease and fibromyalgia is an important part of understanding both conditions. Fibromyalgia is caused by dysfunction of the hypothalamus. The hypothalamus exerts substantial influence over essential bodily functions including sleep, hormone balance, temperature, and autonomic nervous systems that regulate blood pressure, blood flow, and the transport of food through the gut. As part of the HPA axis, the hypothalamus works together with the pituitary, adrenals, and the thyroid to regulate hormones throughout the body.
The components of the HPA are closely interrelated meaning that malfunction in one area can have a significant negative impact on the others. Dr. J. Teitelbaum, MD, is an expert in chronic conditions, specifically chronic fatigue syndrome and fibromyalgia. He believes that hypothyroidism and fibromyalgia are linked through the origin of the dysfunction.
The thyroid is highly influential over the hypothalamus and pituitary. Therefore, reduced thyroid activity can contribute to fibromyalgia-like symptoms and may increase the risk of developing the condition itself. Many symptoms are shared between hypothyroidism and fibromyalgia including fatigue, exhaustion, depression, brain fog, and a variable severity of muscle and joint pain. Regardless if thyroid malfunction is a co-factor of fibromyalgia, a prominent component of its symptoms is reduced thyroid function. When thyroid disease is left untreated, already reduced tissue levels of thyroid hormone can continue to decrease resulting in greater symptom severity.
Thyroid hormone, specifically T3, is an essential part of maintaining cellular energy level and activity. Inhibited levels of thyroid hormone contribute to reduced mitochondrial energy levels resulting in poor cellular activity. Both the hypothalamus and pituitary are particularly sensitive to cellular fatigue. As cellular energy levels decrease, the risk of developing fibromyalgia increases. Therefore, it is important to assess properly assess the thyroid and provide treatment as necessary if a patient is suffering from fibromyalgia.
Supporting the Thyroid to Resolve Fibromyalgia
The link between hypothyroidism and fibromyalgia is strong. Therefore, if you are a thyroid patient experiencing symptoms of fibromyalgia it is quite possible that your thyroid is malfunctioning or is not being treated effectively.
Dr. John Lowe, one of the leading practitioners in the field of fibromyalgia research, found that the chronic symptoms associated with hypothyroidism and fibromyalgia were partially or entirely due to lack of or undertreatment of the thyroid. If you have been diagnosed with fibromyalgia but have not had your thyroid assessed or treated, speak with your doctor about testing and optimizing your thyroid.
These are random Fibro facts that I have collected over the years and shared on my twitter account.
I thought it would be good to put them altogether in one place
Fibromyalgia is a disorder with widespread musculoskeletal pain, fatigue, and sleep and memory disturbance.
Fibromyalgia (FM) is a medical condition characterised by chronic widespread pain and a heightened pain response to pressure.
Fibromyalgia can cause significant pain and fatigue, and interfere with a person’s ability to carry on daily activities.
The word fibromyalgia comes from the Latin term for fibrous tissue (fibro) and the Greek ones for muscle (myo) and pain (algia).
Although fibromyalgia is often considered an arthritis-related condition, it is not truly a form of arthritis (a disease of the joints) because it does not cause inflammation or damage to the joints.
Symptoms of Fibromyalgia most usually arrive between the ages of 35 and 45.
Diagnosis of fibromyalgia use to be made on specific tender points in certain areas of your body. Now diagnosis is: widespread pain lasting three months, fatigue and/or waking up feeling unrefreshed, problems with thought processes like memory and understanding.
Neurological symptoms of fibromyalgia include: dysfunctions of muscles, ligaments and joints; numbness, tingling; muscle twitching, muscle cramps, muscle weakness; headaches, generalised weakness, dizziness, and sensory overload.
People with Fibromyalgia can be hypersensitive to external stimuli such as smells, lights and sounds.
Fibro Fighters often suffer from abnormalities in reaching deep sleep.
Fibromyalgia symptoms may change throughout the day while - for many 11 a.m. to 3 p.m. tends to be when they feel the best.
Arthritis Research UK suggests that as many as one in every 25 people suffer from the condition in the UK!
Fibromyalgia is a long-term (chronic) condition that can cause widespread pain and tenderness over much of the body. It's quite common – up to 1 person in every 25 may be affected. Arthritis Research UK.
Fibromyalgia affects about 2 percent of people in the US by age 20, which increases to approximately 8 percent of people by age 70.
Disrupted sleep, insomnia, and poor quality sleep occur frequently in FM, and may contribute to pain by decreased release of IGF-1 and human growth hormone, leading to decreased tissue repair.
Three medications are FDA-approved to treat fibromyalgia: Cymbalta (duloxetine) Lyrica (pregabalin) Savella (milnacipran)
Non-celiac gluten sensitivity may be an underlying cause of fibromyalgia symptoms but further research is needed. A 2015 review revealed potential benefit of specific dietary interventions in FM
Stiffness is part of Fibromyalgia - when we wake up or after sitting for long periods of time.
The sensations of pain experienced by patients with fibromyalgia are thought to result from multiple levels in the central nervous system. (CNS) The CNS is part of the nervous system and consists of the brain and the spinal cord.
Fibromyalgia should be considered as a diagnostic possibility in all cases of persistent, significant musculoskeletal pain, fatigue or sleep disturbance, particularly when such symptoms seem out of proportion to the severity of any background chronic illness. Guymer & Littlejohn
It is estimated that about 10 million Americans have Fibromyalgia.
Research has shown that people with Fibromyalgia who participated in gentle yoga classes experienced improved mood, less pain and fatigue.
Fibromyalgia can be difficult to treat. Not all doctors are familiar with fibromyalgia and its treatment, so it is important to find a doctor who is.