Daily Archives: January 26, 2016

University of Florida researchers say lupus treatment shows early promise

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A new treatment that may reverse the effects of the most common type of lupus has shown promising results after undergoing early testing by a team of researchers at University of Florida Health.

The findings of a two-year study that used human cells and mouse models are being published in the journal Science Translational Medicine. The new treatment for systemic lupus erythematosus involves regulating metabolism in cells that affect how lupus develops in the body. It has yet to undergo clinical trial in humans.

Lupus is an immune system disorder that prevents the body from distinguishing between harmful germs and healthy tissue. In lupus patients, proteins known as antibodies that are supposed to ward off viruses and bacteria instead attack healthy tissue. This causes inflammation and can lead to irreversible scarring, blood clots and kidney, lung and cardiovascular problems.

Just as diet has a major effect on overall health, nutrients affect immune activity at the cellular level. Now, UF Health researchers may have found a way to rein in lupus by changing the way cells in the immune system use energy.

A key finding of the study involved the researchers characterizing the way specialized white blood cells known as CD4 T-cells use nutrients. In lupus, these cells used mostly glucose, a type of simple sugar, for energy metabolism. This seems to be critical in causing inflammation in the immune system and the tissue destruction that result from the disease. When the researchers blocked glucose metabolism by using the common type 2 diabetes drug metformin and a glucose inhibitor, the CD4 T-cells returned to normal activity and the symptoms of lupus were reversed.

The studies involved a number of mouse models of the disease and the key experimental findings were also observed in human CD4 T-cells from lupus patients.

The research team initially got the idea of using a two-pronged attack on lupus after seeing a similar approach succeed incancer research, said Laurence Morel, Ph.D, director of experimental pathology and a professor of pathology, immunology and laboratory medicine in the UF College of Medicine.

“If it works to limit metabolism of cancer cells, it should work to limit metabolism in T-cells,” Morel said.

The treatment combination is especially effective in reversing lupus symptoms, the study found. It works by simultaneously preventing a T-cell from using glucose while also slowing the cell’s own metabolism, Morel said.

“If the T-cell is normal, the disease gets better,” she said.

Lupus affects more than 5 million people worldwide, and more than 16,000 new cases are diagnosed in the United States each year, according to the Lupus Foundation of America.

Lupus has no cure, and the Lupus Foundation says some scientists believe the disease arises from a combination of genetics, hormones and environmental factors.

Doctors around the world sometimes have to search for the right combination of medications to control lupus. The U.S. Food and Drug Administration has a short list of medicines, including steroids, aspirin and anti-malarial drugs, which can help control lupus symptoms.

The approach found by Morel and the other researchers goes beyond just controlling symptoms. Lupus-afflicted mice that were treated continuously for one to three months closely resembled those that did not have the disease, Morel said. The drug metformin’s effectiveness in restoring normal function in T-cells when studied in the laboratory also bodes well for its potential future application for treating patients with lupus.

“That suggests we can also use metabolic inhibitors to treat patients,” Morel said. “It’s the first time that it has been shown that you can have an effect on lupus symptoms and manifestation by normalizing cellular metabolism.”

The study is also significant for its breakthrough in “drug repurposing,” Morel said. Using an existing diabetes medication like metformin to treat lupus is relatively cost-effective and the drug is already known to be safe for humans. New treatments that use an existing medication can also go to clinical trials more quickly because there are fewer FDA regulatory hurdles.

Next, Morel said, researchers will continue their efforts in two directions. One involves screening additional inhibitors targeting other metabolic pathways as well as studying patients who have been treated with metabolic inhibitors. The other involves searching for a deeper understanding of the molecular pathways that make metformin work.

Among the other UF researchers who worked on the project are Eric S. Sobel, M.D., Ph.D, an associate professor of rheumatology and clinical immunology; Byron P. Croker, M.D., Ph.D, a professor of renal and surgical pathology and UF’s primary renal pathologist; and Todd Brusko, Ph.D., an assistant professor in the UF Diabetes Institute from the department of pathology, immunology and laboratory medicine.

10 Hidden Signs of Dementia That Everyone Ignores (And How to Prevent It)

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Alzheimer’s develops slowly, says Deborah Halpern, of the National Family Caregiver Alliance, in Kensington, Maryland. Like the fog in Carl Sandberg’s poem, it “comes on little cat feet.” We had trouble distinguishing Alzheimer’s from normal age-related changes. But if you know what to look for, dementia is different from normal aging. Anyone can misplace their keys. People with dementia find them and have no idea what they are.

Warning Signs of Alzheimer’s

  1. Memory loss. It’s normal to forget names occasionally. People with Alzheimer’s forget more and more over time.
  2. Difficulty performing familiar tasks. It’s normal to occasionally forget why you walked into a room. People with Alzheimer’s forget how to button shirts.
  3. Problems with language. Everyone occasionally has trouble finding the right word. People with Alzheimer’s lose an increasing number of words and become hard to understand.
  4. Disorientation. Anyone can feel disoriented in unfamiliar surroundings. People with Alzheimer’s become lost on familiar turf.
  5. Socially inappropriate behavior. Anyone can make an occasional faux pas. People with Alzheimer’s stop bathing, or leave the house in their underwear.
  6. Problems reasoning. Anyone can have trouble balancing a checkbook. People with Alzheimer’s forget what checks are for.
  7. Seriously misplacing things. Anyone can misplace keys. People with Alzheimer’s do things like put them in the freezer.
  8. Mood changes. Anyone can feel moody. People with Alzheimer’s may experience significant mood changes—from calm to rage—for no apparent reason.
  9. Personality changes. Normal people change over time, but are still recognizably themselves. People with Alzheimer’s become different people.
  10. Passivity. Anyone can zone out in front of the TV. People with Alzheimer’s often become very passive, not wanting to do things they always enjoyed.

Risk Factors and Prevention

Many people feel fatalistic about Dementia because the best-known risk factors—age, family history, and certain genetic markers—can’t be changed. Meanwhile, the best publicized way to reduce risk is to engage in mind-stimulating activities. “Mental stimulation is important,” says Maria Carrillo, PhD, director of medical and scientific relations for the Alzheimer’s Association. “But the research shows an important connection between brain health and heart health.”

It’s poorly publicized but true: Everything that raises risk for cardiovascular disease (heart disease and stroke) also raises risk of Alzheimer’s. And everything that reduces cardiovascular risk helps prevent Dementia, according to recent research.

Smoking. Dutch researchers followed 6,870 people over 55 for two years. Compared with nonsmokers, smokers had twice the risk of developing Dementia.

High cholesterol. Scandinavian researchers followed 1,449 people for 21 years. High cholesterol in midlife raised the risk for later Alzheimer’s diagnosis.

High blood pressure. In the Scandinavian study, high blood pressure during midlife more than doubled risk of Dementia as participants became elderly.

Obesity. In the Scandinavian study, obesity during midlife more than doubled risk of Alzheimer’s later.

Diabetes. Swedish researchers tested the cognitive function of 1,301 elderly people over a six-year period. Diabetes significantly increased risk of Alzheimer’s.

Animal fat. In the Scandinavian study, a diet high in saturated fat more than doubled risk of Dementia.

Exercise. In the Scandinavian study, physical activity twice a week or more significantly reduced Alzheimer’s risk

Mediterranean diet. Based predominantly on fruits and vegetables, this diet contains much less saturated fat than most Americans eat. Columbia University researchers compared the diets of almost 2,000 people, some of whom had Alzheimer’s. Those who ate a Mediterranean diet were significantly less likely to develop the disease.

HIV drug causes liver damage, admits FDA

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The HIV drug Videx (sold generically as didanosine) may cause fatal liver problems, the FDA has warned.


Since the drug’s initial approval, the agency has received 42 adverse event reports linking Videx and its delayed release version Videx EC to a rare liver disorder known as non-cirrotic portal hypertension. In four of these cases, patients died from liver failure or severe bleeding. Only three patients were able to fully recover from the condition, and all of those needed a liver transplant. Patients had been undergoing treatment with the drug for anywhere from months to years.

Although it has not yet been proven that the drugs caused the liver disorder, the FDA noted that there is definitely an association between the two.

In non-cirrotic portal hypertension, blood flow through a major vein in the liver becomes constricted, causing blood to back up into the esophagus. Veins in the throat can become so enlarged that they rupture, leading to serious and potentially fatal bleeding.

Although the FDA stated that the benefits for HIV patients still outweigh the risks, it warned that Videx patients should be closely monitored for any signs of portal hypertension. Furthermore, it noted that “the decision to use this drug … must be made on an individual basis between the treating physician and the patient.”

Videx was first approved in 1991, and the delayed release version was approved in 2000. The drug is a type of antiretroviral drug known as a nucleoside analogue, and slows the proliferation of HIV to prolong the onset of AIDS and extend the life of patients.

It has previously been linked to other forms of liver damage, especially in combination with other antiretroviral drugs including hydroxyurea and ribavirin.

According to a spokesperson for manufacturer Bristol-Myers Squib, worldwide sales of the drug amounted to $71 million in 2009.

Doctor who invented HIV blood test now has a vaccine that could beat the virus

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Doctor who invented HIV blood test now has a vaccine that could beat the virus
(Picture: AP Photo/Gail Burton)

A scientist may have just found the vaccine to beat HIV.

Dr Robert Gallo is one of the scientists who co-discovered that the HIV virus causes AIDS in 1984 and also pioneered the blood test to detect it.

Thirty-one years later, he and his team are beginning human trials on a potentially revolutionary HIV vaccine this month, at the University of Maryland School of Medicine’s Institute of Human Virology.

The team have been working on the vaccine for the past 15 years and have already tested it on monkeys.

HIV infection, artwork
HIV infection, artwork

At an event in Baltimore, Dr Gallo said: ‘The results in monkeys are interesting, but they’re not perfect if we keep just using monkeys, we’re never going anywhere. We need for humans to respond.’

Vaccines typically target specific strains of HIV, but this works by attempting to block the HIV virus before it can invade the bodies T-Cells.

Once the virus enters the T-Cells it becomes almost invisible to the body’s immune system, making it a lot more harder to treat.

MORE: Woman calls out AIDS price hike guy on Tinder in epic take down

In a statement, Dr Gallo said: ‘Our HIV/AIDS vaccine candidate is designed to bind to the virus at the moment of infection, when many of the different strains of HIV found around the world can be neutralized.

‘We believe this mechanism is a major prerequisite for an effective HIV preventive vaccine.’

If this treatment clears the first trial phase, it will move on to Phase 2, at which point researchers will assess its effectiveness against HIV. But it could take years before it’s for sale.

 

“Every day she slips further away from us”: Daughter of Alzheimer’s sufferer describes family’s journey

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For Dementia Awareness Week we are sharing the stories of people affected by the disease.

Dementia can happen to anyone. It can strip you of your memory, cause irreversible changes to your personality and damage relationships that have lasted a lifetime – and there is currently no cure.

For these reasons, it can also have a profound effect on the people closest to you.

This Dementia Awareness Week (May 17-23) we are teaming up with Alzheimer’s Research UK’s dementia blog to tell the stories of five people who have lived with or cared for relatives with the disease.

Amanda Franks shares the story of her mum’s diagnosis

“When my mum was diagnosed with Alzheimer’s disease age 58 I didn’t know how to feel. Early onset Alzheimer’s seems somehow crueller as it changes the plans and future of everyone involved.

“Mum and Dad were planning their retirement. They loved to travel and had a caravan. They had an apartment in Tenerife and hoped to stay there for months at a time.

“Mum was my son’s after school care as well as his favourite person, she also had five other grandchildren; how do we explain it to the children?”

“I think the hardest thing was the early stages.”

“Mum knew her future was mapped for her now but it was ‘the elephant in the room’. When should I stop allowing her to pick up my son from school without offending and upsetting her?

“The answer to that came when we realised she could no longer read the time.

“My son finished school at 3.15pm. One day she walked to the school at 2pm to collect him. The gates were locked so she came home and just went about her day.

“When the school rang me to say he hadn’t been collected, mum said: ‘I went to the school, it was shut so assumed they had finished early’ – no questioning where my son was!

“Mum and Dad muddled through with the help of extended family all living within close proximity. Very dependent on my dad, mum would follow him around and any time away from him was a moment too long for her!

“Medication held her for a few years but in September 2013 things began to progress. The constant requests to go home when she was, indeed, at home.

“Hallucinating people in the house, believing news stories of flooding were of immediate danger – things were getting out of hand.

“Mum has always been a quiet passive person. When dad finally admitted to mum’s violence the reality couldn’t be ignored and mum was admitted to care in January 2014.

Amanda Franks with her mum, who was diagnosed with Alzheimer's at 58

“I can only speak from my point of view but the devastation this disease has caused my family is extreme.

“Seeing my mum wandering the corridors of a care home amongst elderly people with odd slippers breaks my heart.”

“Every day she slips further away from us.”

After looking into the statistics of Alzheimer’s disease, Amanda was shocked that research was ‘so underfunded’ – despite it costing the economy so much.

She decided, along with her family, to raise £10,000 for Alzheimer’s Research UK by throwing a concert, The Gig to Remember.

Despite her success, she admits it is bittersweet: “Throughout this whole journey, the saddest part has been not being able to share it with my mum.

“I visit, I show her our picture in the newspaper and tell her about The Gig to Remember but it’s difficult to know how much she takes in. I hope she’s proud.”

Read Amanda’s story on dementiablog.org.

To the People Who Call My Daughter ‘Poor Little Thing’

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It happens pretty often, at least once every week. People hear that she has kidney disease and is waiting for a kidney or that she is going for weekly blood work. They put a hand on my daughter Lexi’s shoulder, look at her and say, “Oh, you poor little thing. It’s a shame you have to go through this.” Last week someone said this to her and she immediately went from smiling to frowning and looking down.

little girl showing off scar at the beach
Lexi showing off her scar

Yes, it is a shame. I’m not saying it isn’t a shame. It is absolutely infuriating that her kidneys don’t just do their job so she can go about her business. But this isn’t news to Lexi. She knows it sucks and it’s “a shame,” but she is certainly no “poor little thing.” That tiny human has more courage and bravery than any kid I know. She sits and gets her blood work and knows the regular staff so well, she is often happy to see them and excited to tell them about her recent soccer game or show them her new lunch box. She goes to her nephrology appointments excited to see her pregnant doctor so she can find out if she is having a boy or a girl. She wants to go see if her nephrologist’s beard grew any more. She doesn’t feel like a “poor little thing.” This is her normal.

At 6 years old, she looks for the positive in everything. We tell her she needs dialysis; she is happy she can still go to dance class while she is on it. We tell her she needs a kidney transplant; she focuses on the hot dog she will finally be able to eat after. Some say I do not baby her enough with all she is going through, but I’m there when she gets upset about something with her kidney disease. Her dad or I are there holding her when she is in pain at the hospital. We try to help her stay positive because that’s how we get through this. We don’t hold her and say “you poor baby.” We sit beside her and tell her she is so tough. We talk to her about other things to keep her mind off the pain. We play her favorite Bob Marley song. We make jokes and try to keep her happy because at the end of the day, she is still an ornery 6-year-old even if her typical day is not that of any other 6-year-old.

To us, she is not a “poor little thing” worthy of only our pity. She is our “tough lady” and our inspiration.

Drug-Induced Lupus Erythematosus (DILE): Symptoms, Treatment- NSAIDs, Corticosteroids

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Drug-Induced Lupus Erythematosus (DILE) is a disorder that exhibits symptoms similar to that of lupus. Drug-Induced Lupus Erythematosus is a result of side-effects which occur due to prolonged usage of certain medications. No specific criteria have been established yet to arrive at a diagnosis of drug-induced lupus; however, the patient may experience symptoms that mimic systemic lupus erythematosus such as:

  • Swelling and pain in the joints and muscles.
  • Fatigue and fever symptoms as seen in flu.
  • Inflammation around the heart and lungs resulting in pain and discomfort i.e. serositis.
  • Certain abnormal laboratory test results.

Drug-Induced Lupus Erythematosus

Discontinuing the suspected medication could help in relieving the symptoms within few days to a week or two. The diagnosis for drug-induced lupus is arrived at on the basis of close observation of symptoms after discontinuation of the offending medication.

Several drugs are found to be responsible for causing this type of disorder. However 38 different types of drugs are found to be the exact reason for the occurrence of this disease, but many are considered to be the main culprits. These drugs are usually used for treating chronic conditions like high blood pressure or hypertension, neuropsychiatric disorders, inflammation, epilepsy, heart disease, and thyroid disease.

The Three Drugs Which Are Considered To Be Responsible For Drug-Induced Lupus Erythematosus (DILE) May Include:

  • Procainamide used for treating heart arrythmias.
  • Hydralazine used for treating hypertension.
  • Quinidine used for treating heart arrythmias.

The treatment for drug-induced lupus becomes very easy with the discontinuation of the offending medication. The treatment process may take months or sometimes years. Another fact is that drug-induced lupus may return back if the patient starts taking the offending medication again.

Epidemiology of Drug-Induced Lupus Erythematosus (DILE)

The estimated rate of drug-induced lupus is recorded to be 15000 to 30000 cases per year. Drug-induced lupus equally affects both men and women. Older people and Caucasians are more prone to drug-induced lupus. Whites are more prone to drug-induced lupus when compared to blacks.

Causes and Risk Factors of Drug-Induced Lupus Erythematosus (DILE)

Drug-induced lupus is caused as a side effect to the drugs used for treating some of the chronic diseases. Men over 50 years of age usually get affected with drug-induced lupus as they are very much at a risk for developing chronic diseases that require prolonged usage of medications like hydralazine that is prescribed for hypertension and quinidine or procainamide that are prescribed for cardiac arrhythmias. A person who suffered with SLE does not necessarily get affected with drug-induced lupus.

Given Below Are Few Of The Types Of Medicines That Lead To Drug-Induced Lupus Erythematosus (DILE):

  • Antihypertensives.
  • Neuropsychiatric disorder medications.
  • Heart disease medications.
  • Certain antibiotics and anti-inflammatory agents.
  • Thyroid disease medications.

Signs and Symptoms of Drug-Induced Lupus Erythematosus (DILE)

  • Flu-like symptoms particularly joint and muscle pain is often experienced by patients suffering with drug-induced lupus.
  • Gradual appearance of the symptoms which worsens in future if the patient is treated with the implicated drug for several months.
  • The symptoms also begin rapidly in some individuals.
  • Fever.
  • Arthritis.
  • Joint pain.
  • Inflammation of the lung and heart.
  • Muscle pain.

Treatment for Drug-Induced Lupus Erythematosus (DILE)

The treatment for drug-induced lupus concentrates on recognizing the medication that causes the disease. First and foremost step taken is to discontinue the offending medication in order to improve the symptoms in few days. Discontinuing offending medication helps in indicating if the symptoms were induced drug.

Non-Steroidal Anti-Inflammatory Drugs (NSAIDs) may help patients to improve quickly. NSAIDs also help in reducing the symptoms of other rheumatic diseases which may also confuse the diagnosis.

Corticosteroids may help in treating the patients with severe symptoms of drug-induced lupus. The related symptoms may include:

  • Severe inflammation in many joints.
  • Inflammation of the sac present around the heart.
  • Kidney disease is also noticed in very rare cases.

Investigations for Drug-Induced Lupus Erythematosus (DILE)

Presence of a rash on skin exam may indicate towards drug-induced lupus. Other tests for diagnosing drug-induced lupus may include:

  • Antinuclear antibody panel.
  • Antihistone antibody.
  • A chest x-ray may implicate towards the signs of pericarditis orpleuritis.
  • An EKG may assist in case of an affected heart.

Brain Injury Linked To Crime In Young People

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A new UK report finds there is a link between brain injury in childhood and crime in young people, and points to evidence that brain trauma can cause maturing brains to “misfire” and disrupt the development of self-restraint, social judgement and impulse control. It calls for more collaboration among health and criminal justice authorities to spot brain injuries early, treat them properly, and ensure they are taken account of throughout the criminal justice process.

Huw Williams, a professor of psycology at the Centre for Clinical Neuropsychology Research, University of Exeter, produced the report, which was released online on 19 October, under commission from the Barrow Cadbury Trust, as part of its work to support the Transition to Adulthood (T2A) Alliance. The Trust is an independent charity that supports vulnerable and marginalised people in society.

The report describes the impact that brain trauma in childhood can have on young people as they develop into adults, and outlines the criminal justice consequences of such injuries going untreated.

A press statement from the University of Exeter says the report looks at the connection between crime in young people and the “silent epidemic” of traumatic brain injury in childhood.

These injuries, which can result from falls, playing sports, suffering car accidents or being involved in fights, can go undetected, and if they are not treated, then because of their effect on the maturing brain, can result in young people re-offending.

A section of the report describes in detail the interruption to brain development that can occur as a result of trauma. The result is that areas of the brain that affect the development of temperance (ability to restrain and moderate actions), social judgement and impulse control can “misfire”.

For example, the report points out that different parts of the brain develop at different rates:

“It appears, therefore, that the brain system related to rewards (the meso-limbic area) is developing rapidly relative to the other systems. Especially, it seems, compared to the frontal system that is supposed to regulate it, and the social and emotional systems that will, in time, moderate it.”

Thus while the young person’s brain has “an adult-like ability to reason”, there is a “heightened need for basic reward”, and as Williams explains:

“The young brain, being a work in progress, is prone to ‘risk taking’ and so is more vulnerable to getting injured in the first place, and to suffer subtle to more severe problems in attention, concentration and managing one’s mood and behaviour.”

The Transition to Adulthood Alliance (T2A) began looking at the concept of maturity in a criminal justice context in 2011.

At a meeting hosted by Lord Keith Bradley, experts in neurology, psychology and criminology all confirmed there is evidence to support the idea that developmental maturity should be taken into account throughout the criminal justice process.

“Indeed, maturity can be a better indication of adulthood than reaching a particular chronological age,” says the report.

“It is rare that brain injury is considered by criminal justice professionals when assessing the rehabilitative needs of an offender, even though recent studies from the UK have shown that prevalence of TBI [traumatic brain injury] among prisoners is as high as 60%,” says Williams.

Brain injury has been shown to be a condition that may increase the risk of offending, and it is also a strong ‘marker’ for other key factors that indicate risk for offending,” he adds.

The report says more should be done to identify and manage brain injuries early. This means training for school staff to make sure young people receive the right kind of support for neuro-rehabilitation.

The report also calls for more awareness throughout the criminal justice system of the effect that trauma can have on the brain, and recommends screening of young people as standard.

“The transition to adulthood is difficult enough for all of us, even when we have family and friends to rely on. Add to this the effects of acquired brain injury that this report sets out for us and it becomes clearer and even more important that agencies and practitioners, who will come across such young people within the criminal justice system, know and understand what can and should be done.”

She says the report invites people in charge of commissioning and providing services in health and crimininal justice to work together to make sure brain injuries are spotted early, treated properly, and taken account of throughout the criminal justice process.

Fibromyalgia is thought to affect up to a million Britons, commonly women over 40, and experts have likened the debilitating sensations to ‘death by a thousand needles’ ..

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It is a chronic condition that renders sufferers so sensitive that even the lightest touch triggers waves of excruciating pain. Fibromyalgia is thought to affect up to a million Britons, commonly women over 40, and experts have likened the debilitating sensations to ‘death by a thousand needles’.

Other symptoms include lack of concentration, memory loss, headaches and muscle stiffness. And for a long time there was little doctors could do to help quell the agony.

Yet today, with the help of sophisticated scanning techniques, pain specialists have been able to pinpoint the parts of the brain responsible for the condition.

Using a combination of psychotherapy and medicines more commonly used to treat depression and epilepsy, many sufferers are able to find relief.

‘Patients with fibromyalgia typically have what we call tender points,’ says Dr Ernest Choy, consultant rheumatologist at King’s College Hospital in London.

‘There are 18 sites throughout the body – in the neck, back, arms and legs – where, with light pressure, they experience pain, when a normal individual wouldn’t.

As well as pain, patients usually complain of a degree of fatigue and poor sleep quality. Depression and chronic pain often go hand-in-hand – it’s so hard to cope with such grinding discomfort every single day.’

There is no specific test for fibromyalgia so it is often diagnosed once other conditions, including chronic fatigue syndrome and rheumatoid arthritis, have been ruled out.

The patient will have suffered widespread pain for three months on both sides of the body, above and below the waist, as well as pain in at least 11 of the 18 known tender points when pressed.

‘Unfortunately, fibromyalgia isn’t well understood by many clinicians because pain is often a very subjective symptom,’ says Dr Choy.

‘According to a European survey, it takes approximately 18 months to two years to get a diagnosis of fibromyalgia. There are still a lot of clinicians who don’t even know about it.’

The exact cause of the condition isn’t known but, according to Dr Choy, research has highlighted that it is likely to be due to a problem with how the nervous system handles pain.

‘When a normal individual experiences pain, there is what we call a coping process in  the brain that manages it,’ he explains.‘In some patients with fibromyalgia, that process isn’t working properly so their threshold for experiencing pain is much lower.

‘Recent advances in assessing the way the brain works, using functional magnetic resonance imaging [fMRI], have really changed our understanding of the disease.

‘It’s clear that the way the brains of people with fibromyalgia process pain is very different from normal individuals.’

There are certain risk factors for developing the condition.

 ‘My symptoms started almost six years ago, with my joints suddenly swelling and feeling very painful’

‘There is evidence to show that people who have physical or psychological stress are more prone to developing fibromyalgia,’ says Dr Choy.

‘In some individuals it may be that they sleep very poorly, while in others it may be that they have other illnesses, such as depression.’

There is no cure, but treatments can help ease symptoms. Dr Choy explains: ‘The aim of treatment is to help patients cope with their condition.

In most patients, we use a combination of non-drug-based treatments, as well as medications.

‘Exercise can be helpful. Although many patients get worsening of their pain when they start, if they build up exercise gradually, they’ll get long-term benefits.

‘Taking warm baths or exercising in warm water will also help alleviate the pain and tiredness. Cognitive behavioural therapy, a kind of pyschotherapy, can help improve patients’ ability to handle the pain.

‘Aside from that, some simple painkillers can help, and we often prescribe antidepressants mainly because the chemical substances in the brain that control the processing of pain are also the same as those that cause depression.

‘These are given at much lower doses than are used to treat depression, though. Anti-epilepsy drugs have also been shown to be effective. These work on readjusting the nervous system and reducing sensitivity to light pressure.’

One sufferer, Nicki Southwell, 53, runs a fibromyalgia support group. Nicki, who lives in Carlisle with her husband Merlin, 51, a teacher, says: ‘My symptoms started almost six years ago, with my joints suddenly swelling and feeling very painful.

‘It got so bad I couldn’t climb the stairs. I was eventually diagnosed early last year, though no one knows what caused it. In the meantime, I had to stop work as a carer.

‘And although I’m usually very organised, suddenly I couldn’t find my diary or manage the housework. I felt totally out of control and I hated that. Along the way I’ve suffered with depression too, but I don’t know if that’s because of the fibromyalgia.’

More than a year on from her diagnosis, Nicki sleeps normally but wakes with aching, stabbing pains – mainly in her back and legs. Her short-term memory is also still poor so she makes lists.

‘I take painkillers and I use a Transcutaneous Electrical Nerve Stimulation [TENS] machine for pain relief, which delivers electrical impulses to the body,’ she says. ‘I also did an NHS hydrotherapy course, which involved exercising in warm water and was brilliant.

‘I know lifestyle changes are key, so I’m going to try swimming, t’ai chi – anything. I still have bad days but things are getting better.

‘My message to other sufferers would be to persevere for diagnosis and treatment. Don’t give up hope.’

Dr Choy says: ‘What works for one patient might not for another. It is important to remember there are treatments already available that can help ease symptoms. I think the future is looking bright for patients with fibromyalgia.’

Top Twenty Survival Skills For Sarcoidosis and Come To Think Of It…Probably Most Other Chronic Illnesses Too

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So now that I have been a part of the exciting world of chronic illness, I’ve picked up a few tricks a long the way to cope. Here are the top twenty:

1. Don’t ignore symptoms
2. Find medical professionals who understand your disease and who don’t blow off your long list of odd symptoms
3. Do research on treatment options and understand the cost benefit of treatment vs. the “wait and see approach”
4. Eat a healthy diet – limit/eliminate processed foods, sugars, carbs and caffeine, eat plenty of fresh veggies and fruits…drink a lot of water

5. Avoid the hottest part of the day and the most direct sunlight
6. Ask for help when you need it – we all need it sometimes
7. Find others like you to talk to about how it feels to live with this disease
8. Don’t dwell
9. Exercise – but not overly so or it has the opposite effect
10. Manage pain issues as they arise
11. Vent once and awhile but then let it go
12. Reduce stress – also easier said than done in some situations but trying is a must
13. Find ways to laugh…a lot
14. Try to find “normal” as much as possible and accept that “normal” has changed
15. Don’t be defined by the disease
16. Be patient with the ignorant – takes too much energy to get mad and most people who have not been sick will not understand your struggles. If they want to feel sorry for you let them. If they don’t want to believe you let them. If they say stupid things educate them.
17. Try to look good – yes that’s right…I said it…helps with the normal part….
18. Don’t isolate
19. Accept the ups and downs and fight through the down times knowing they will not last forever…keep living
20. Get enough rest