LIVING WITH ME

When living with fibromyalgia and chronic fatigue syndrome, pacing is key to managing your symptoms. That’s easier said than done with the busy lives most of us lead, but with some effort, you can learn to pace yourself.

http://chronicfatigue.about.com/od/copingwithfmscfs/a/pacing101.htm?nl=1

A healthy diet is important for managing fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS). While it’s not a “cure” and there is no magic diet that works wonders for everyone with these conditions, eating right can help you feel better, have more energy and boost your immune system.

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ALMOST all benefit claimants will be forced either to look for a job or prepare for work if they want to continue to receive state handouts, under a shake-up of the welfare state.

http://www.timesonline.co.uk/tol/news/politics/article5299325.ece

Rheumatoid arthritis (RA) is one of the more serious conditions that overlap with fibromyalgia (FMS). It’s a degenerative autoimmune disease that can deform your joints or, in severe cases, attack your organs. Of course, it also causes a lot of pain, which is amplified by the fibromite brain. Like FMS, RA symptoms can come and go.

http://chronicfatigue.about.com/b/2008/11/06/fibromyalgia-rheumatoid-arthritis-compounding-the-pain.htm

Those of us with fibromyalgia (FMS) are prone to several sleep disorders, and one of them – sleep apnea – can greatly increase our risk of serious health problems, including high blood pressure, stroke, heart attack and sudden death.

People with sleep apnea stop breathing for several seconds at a time while sleeping, and it’s not uncommon for us to do that hundreds of times a night. To get you breathing again, your body takes you out of deep sleep and sometimes wakes you up completely. In my sleep study, I slept for fewer than 5 hours, but I had 53 episodes of apnea. That means my sleep was disrupted, on average, about every 6 minutes.

http://chronicfatigue.about.com/b/2008/12/11/fibromyalgia-sleep-apnea.htm

Since 1992 various ministries of the Japanese government, including the Ministry of Health and Welfare of Japan and the Japanese Ministry of Education, Culture, Sports, Science and Technology, have sponsored comprehensive research to uncover the molecular mechanisms of fatigue. Recently a study group of Japanese investigators from various fields have been investigating CFS specifically. The following information is from studies into various treatments for CFS (adapted from the book Fatigue Science for Human Health by Yasuyoshi Watanabe, MD, PhD). A report on their research into the cause of CFS was published in the summer 2008 issue of the CFIDS Chronicle.

http://www.cfids.org/bonus/japantreat.asp

How have you changed your alcohol consumption since you started living with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS)?

http://chronicfatigue.about.com/b/2008/12/09/alcohol-intollerance-in-fibromyalgia-chronic-fatigue-syndrome.htm

When you have fibromyalgia (FMS), it doesn’t take long to learn that negative events (i.e., stressful incidents, confrontations) make you feel a lot worse. But have you also connected happy events to a downturn in your health?

http://chronicfatigue.about.com/b/2008/12/07/negative-events-make-fibromyalgia-worse-but-so-do-positive-ones.htm

The minutes of the All Party Parliamentary Group meeting held October 2008 are now available online.

http://www.meassociation.org.uk/content/view/724/70/

The daughter of sculptor Fenwick Lawson has overcome not one, but two debilitating conditions to launch her own greeting card business. Joanne Lawson thought she would never work again after being diagnosed with myalgic encephalopathy (ME) and narcolepsy.

Durham Times

9th International IACFS/ME
Research and Clinical Conference
Peppermill Resort, Reno, Nevada

Latest Advances in Virology, Genetics, Pediatrics,
Brain Functioning, Epidemiology, Treatment and Assessment

http://www.iacfsme.org/Home/tabid/36/Default.aspx

Surviving the holidays can be tough for even the most energetic people to get through. For those of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) … let’s just say, if you don’t go into it with the right mindset and a good game plan, you’re going to crash around the time your Thanksgiving turkey goes in the oven.

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From the 25% ME Group

ME patient mourned: more needs to be understood about the sufferings of patients with ME
Sir, Lynn Gilderdale was a valued member of the 25% ME Group and we are all heartbroken by her death (report, Dec 9), especially as we are fully aware of her mother’s total devotion to her.

http://www.meassociation.org.uk/content/view/721/70/

Do you dread holiday shopping? All that walking, trying to remember what you need, what you have, who you need to buy for — it can add up to a nightmare for someone with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS).

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Studies show exercise can alleviate our symptoms, but anyone with FMS or ME/CFS who’s ever over done it (most of us) knows how debilitating that post-exercise crash can be. So doctors and healthy people tell us, “Exercise more!” and we respond, “I can’t!”

I think part of the problem here is in how we define “exercise.” That word generally conjures up images of aerobics classes, doing a weight circuit at the gym, or spending half the day on a treadmill or exercise bike. I can’t handle that kind of exertion – can you? I’m giving 3-1 odds that you said, “No way!”

http://chronicfatigue.about.com/b/2008/11/18/re-thinking-exercise-for-fibromyalgia-chronic-fatigue-syndrome.htm

Title: Fibromyalgia in 2009: What It Is. What It Isn’t. And What To Do About It.

http://www.fibroaction.org/Pages/Events.aspx

Are you a clutz? Are you constantly getting hurt in stupid ways, while doing mundane things?

http://chronicfatigue.about.com/b/2008/09/21/do-fibromyalgia-chronic-fatigue-syndrome-make-you-clumsy.htm

When living with fibromyalgia and chronic fatigue syndrome, pacing is key to managing your symptoms. That’s easier said than done with the busy lives most of us lead, but with some effort, you can learn to pace yourself.
Why is Pacing Important with Fibromyalgia and Chronic Fatigue Syndrome?

Fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) can really sap your energy. When your energy is low, each activity takes a greater percentage of the whole. As you’ve probably learned the hard way, when you overdo it, you pay a steep price.

http://chronicfatigue.about.com/od/copingwithfmscfs/a/pacing101.htm?nl=1

UK charity Invest in ME has announced the date of their fourth international research conference . It will be held in Westminster on Thursday 29 May 2009 with – says the organisation – the support of the European ME Alliance.

http://www.meassociation.org.uk/content/blogcategory/30/70/

Sara has a decade of experience in natural medicine, starting after she successfully treated her own ME/Chronic Fatigue Syndrome symptoms by introducing diet and lifestyle changes coupled with herbal medicine.

http://www.kenilworthweeklynews.co.uk/business/Herbalist-Sara-is-proof-her.4712888.jp

Getting people employed is vital, but in a recession current welfare-to-work targets are impossible – and compulsion is crazy.
Welfare reform, a centrepiece of tomorrow’s Queen’s speech, is under attack. Devised in a boom, it looks perilous in a bust. A battery of charities for children, the disabled and the poor have joined the unions and centre-left pressure group Compass in formidable opposition. Meanwhile, companies and voluntary organisations bidding for welfare-to-work contracts are also protesting. Targets that were eyewatering in the good times are downright impossible now. Head in the sand, the Department for Work and Pensions denies there’s a problem.

http://www.meassociation.org.uk/content/view/714/70/

An informative read!

http://www.investinme.org/IIME%20newsletter.htm

Personal Stories of Parents/Carers of ME Sufferers.

http://www.investinme.org/mestorygallery2.htm

OK, here’s one I didn’t see coming – a study published in the Journal of Altenative and Complementary Medicine says that whole-body vibration (WBV) can actually reduce pain and fatigue, and improve physical function for those of us with fibromyalgia.

http://chronicfatigue.about.com/b/2008/11/16/whole-body-vibration-as-fibromyalgia-treatment.htm

Queen’s speech: “There are no jobs but we expect the sick to work”?

The Queen’s speech to Parliament on 3 December 2008, which sets out the Labour government’s legislative agenda for the year, is expected to include the controversial welfare reform which aims to get people off benefits and “support” the sick and disabled back into work.

http://www.afme.org.uk/news.asp?newsid=411

Acupuncture treatments for fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) are becoming much more common, either alone or as a complementary therapy.

Acupuncture dates back thousands of years as traditional Chinese medicine (TCM) but only caught the attention of the American public in the 1970s. The National Institutes of Health formally recognized acupuncture as part of mainstream medicine in 1997, saying the procedure is safe and effective at treating a wide range of conditions, including fibromyalgia.

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Fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) long remained mysteries to medical science, and we’re just now getting a picture of what’s going on in the body, and especially the brains, of people with these conditions. One thing that research has shown, time and time again, is that when you have FMS or ME/CFS, your neurotransmitters are out of whack.

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Does your jaw hurt and sometimes pop? Is it painful for you to open your mouth? You could have TMJ disorder, a condition that commonly overlaps with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS).

TMJ stands for temporomandibular joint, which is what connects your jaw to your head. It can cause a little discomfort or a lot of pain – and because of our heightend sensitivity to pain, you can imagine that it’s usually pretty painful for those of us with FMS or ME/CFS.

http://chronicfatigue.about.com/b/2008/11/13/tmj-in-people-with-fibromyalgia-or-chronic-fatigue-syndrome.htm