Tuesday, November 29, 2005

Top resourse for CFS / Fibromyalgia

CFS / Fibromyalgia FAQ by Dr. Teitelbaum, MD:

CFS/Fibromyalgia - Their Causes and How To Treat Them Effectively! ....a series of questions and answers about chronic fatigue syndrome and fibromyalgia (CFS FMS) reviews what these illnesses are, what causes them, what they feel like, testing, and how to get well.

Although I am sleeping a bit better now with the nortryptoline 4 - 5 hours solid sleep is still a far off dream for me. Am now on 50mg a day and seem to have hit a peak and am now going backwards with frequent sleep disruption and aches and pains creeping back. Have had a couple of really bad nights and feel so shit the next day it makes me wonder how I have kept going all this time with such poor sleep...

"After falling asleep, most people with FMS/ CFS find that they wake-up frequently during the night, especially between two and 4 AM. In addition, sleep is disrupted by pain and frequent urination. All in all, many people are only able to get four to five hours of solid sleep a night without treatment. The disrupted sleep then results in immune suppression and chronic widespread pain. "

Monday, November 28, 2005

New BMJ editor - new views on Fibromyalgia?

CO-CURE Archives -- February 2005, week 2 (#43): "announcing the appointment of Fiona Godlee as the new editor: 'ACT:New BMJ editor: Fiona Godlee - maybe a chance to comment on the BMJ's coverage of ME/CFS in the past'"

CO-CURE Archives -- October 2005, week 5 (#20)

UK doctors reliant on the BMJ may be missing information about the immunological and viral aspects of fibromyalgia and other chronic fatigue syndromes.

CO-CURE: "ME/CFS and Fibromyalgia Information Exchange Forum
Subject: Study reveals pro-psychiatric bias in the British Medical Journal

A literature search identified all papers published on chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) in the British Medical Journal between 1995 and 2000. Analysis of the findings revealed a bias towards the views of one school of thought and a lack of papers on the immunological or virological aspects of CFS. This contrasts with the mainstream American journals, which generally covered a much wider range of subjects and views. We examine the arguments for and against covert editorial policies, and summarise the results of discussions with the relevant individuals and organisations. "

Monday, November 14, 2005

Fibromyalgia Recent Research CO-CURE

Search Results - CO-CURE:
"RES: Fibromyalgia: Progress in Diagnosis and Treatment....Fibromyalgia is a frequent cause of chronic widespread pain and affects up
to 5% of the general population. Diagnosis and treatment have been
especially challenging due to limited knowledge of etiology and poor
response to conventional treatment of pain.

Appreciation for the interactions of neurobiologic, psychologic, and
behavioral factors in the disease pathogenesis has led to improved
treatment options that can be effective in individual patients.

Current evidence advocates a multifaceted program emphasizing patienteducation, medications for improving symptoms, and aggressive use of exercise and cognitive-behavioral approaches to retain or restore function.

RES: Chronic Fatigue Syndrome Research--Prospects" Lists several significant things have come together relatively recently,

Monday, November 07, 2005

January 2002 chief medical officer recognised ME as 'a genuine illness'

Teaching Ideas & Resources - TES - The Times Educational Supplement: "January 11, 2002 was a historic day in the history of CFS/ME. Launching an official report into the illness, Sir Liam Donaldson, the chief medical officer of England and Wales, said: 'Until now, sufferers were ignored or not taken seriously, labelled as hypochondriacs, or urged to pull themselves together and get better on their own. From today that changes.'

Here was a report that, for once, did not mince words.

The report opened with the unequivocal statement: 'Chronic fatigue syndrome (CFS/ME) is a genuine illness and imposes a substantial burden on the health of the UK population.' It went on to acknowledge that 'patients, their carers, and healthcare professionals encounter different levels and varying manifestations of disbelief and prejudice against people affected by the condition'. And it reprimanded those professionals whose own scepticism had 'done nothing to dispel public disbelief'.

The biggest problem facing both sufferers and doctors is undoubtedly the lack of any definitive diagnosis or test for the disease. Despite this, said the report, it is now 'clinically recognisable', and any clinician lacking the wherewithal to recognise it should get some training, and fast....

It is so difficult to get a doctor to diagnose CFS/ME that sufferers or their parents frequently regard success as a matter for celebration. Only then does it hit them that diagnosis, while helpful, is not an end in itself, and that a cure might not be forthcoming in the foreseeable future.

...treatment is often aimed at reducing symptoms and can encompass mainstream and complementary methods, ranging through pharmaceutical drugs, homeopathy, behavioural therapies, acupuncture and diet changes.

Perhaps the most successful and therefore the most popular technique, and one which is being trialled by the Medical Research Council, is called Pacing. AYME describes this as an energy management strategy aimed at preventing patients falling into a "boom and bust" vicious circle of over-activity and relapse. "Patients alternate activity with rest, and switch between physical and mental tasks so that they do not become exhausted. Patients learn to spot the warning signs of impending exhaustion and stop activity before that point." The fact that, for severely affected patients, "activity" may mean just sitting up in bed for a few minutes, is a measure of how devastating CFS/ME can be.

According to the ME Association, only "a fairly small percentage" of people who suffer from CFS/ME manage to return to completely normal health, and the time taken for this recovery may vary widely, from months toa number of years. According to the charity, the majority of sufferers will continue to fluctuate between good and bad periods of health, with relapses often precipitated by infections, operations, temperature extremes or stressful events.


Thursday, November 03, 2005

Vicious Cycle of Fibromyalgia and Emotional Impact: What to Do

Vicious Cycle of Fibromyalgia and Emotional Impact: What to Do: "Vicious Cycle of Fibromyalgia and Emotional Impact: What to Do

If you had been a healthy, active person and develop fibromyalgia, the symptoms can create havoc in your life. Your inability to engage in activities you once enjoyed can cause you to become frustrated, angry, worried, or depressed. Your inability to meet the needs of your children, spouse, job, or community may contribute to a sense of inadequacy and worthlessness. Your friends may start to distance themselves. You may lose your job or marriage, causing serious financial distress and emotional pain. These are all normal reactions to the losses you suffer when fibromyalgia strikes. You are not alone, however.

Many people with other illnesses such as rheumatoid arthritis, heart disease, cancer, diabetes or other chronic illnesses have the same reactions. Unfortunately, because fibro patients have no obvious physical or lab abnormalities, many have been told by their friends, family, or even their doctors that there is nothing wrong with them and their symptoms are all in their heads. “Just get the stress out of your life,” they say, “and you will be fine.” These people are wrong. Fibromyalgia is a real illness and its psychological impact should not be dismissed...

Studies have shown that when people were deprived of just a few nights’ sleep, they developed many of the same symptoms fibromyalgia patients have, including emotional distress and problems with thinking, memory, and judgment...

Research shows that a combined multidisciplinary treatment approach is the most effective way to achieve symptom relief. Although it may not be a cure, many patients find that making appropriate changes in their lives can reduce their symptoms, in some cases by as much as 90%!

What helps:

--Cognitive behavioral therapy- time limited, not in depth- 70%improvement when used in conjunction with other treatments and better than just medication alone

--Changes negative thought patterns and behaviors to positive ones

--Stress management- meditation, relaxation techniques, appropriate breathing



--Balance, pace activities

--Avoid “toxic” relationships and activities

--Don’t overdo

--Positive attitude/ accept your limitations/be joyful for what you have

--Getting support from knowledgable healthcare professionals

--Repeat the serenity prayer often

--Journal thoughts, feelings

--Become aware of what your body is saying to you

--Do at least one thing daily you enjoy – learn to say no

--Take care of flares when they start- have a plan in place

--Avoid isolationism- join a support group

--Change perfectionism – you can’t do everything

--Get help - it is not a sign of weakness

Walking the road to wellness is better when you don’t walk alone

Rosalie Devonshire, msw, lcsw, fibromyalgia survivor

Editor's note: Taking Charge of Fibromyalgia: Everything You Need to Know to Manage Fibromyalgia (2005 Edition) By Julie W. Kelly, M.S., R.N., and Rosalie Devonshire, M.S.W., is a great and highly useful guide to self-managing your FM treatment program, and is an excellent resource for patients, their families, and health care professionals. This is the updated 2005 version with all the latest treatment and resources information including new research and physician treatment protocols. To buy the book, please click here: http://www.immunesupport.com/shop/Books.cfm "