Fibro Event in South-east England

WHAT DO A SMOOTHIE, A SEAWEED WRAP, AND SPIRULINA ALL HAVE IN COMMON?

 

They are all things sufferers of Fibromyalgia Syndrome can take away free from the Tried and Tested event, being held in Reigate on Thursday 5^th June in collaboration with the Surrey & Sussex Fibromyalgia Support Group.

 

Fibromyalgia Syndrome (Fibro) is a chronic condition whose main symptoms are widespread chronic pain, hypersensitivity to pain and chronic fatigue. Fibro likely affects between 1.2 and 2.7 million people in the UK alone, although this figure may be as high as 10 million as many cases go undiagnosed.

 

Fibro sufferers often struggle because there is no widely accepted treatment regime and many spend large amounts of money on complementary or alternative therapies, sometimes with little or no effect.

 

Caroline Hinkes, a Fibro sufferer herself, is now organising a project to try and help find out what complementary therapies work for Fibro sufferers. The Tried and Tested project aims to get volunteers with Fibro to try out complementary therapies for free so that a guide can be compiled with people’s experiences, enabling other sufferers to make targeted decisions about how they spend their money.

 

The Tried and Tested project is being launched with an event at 2pm on Thursday 5^th June in Reigate. Presentations will be made about the various therapies on offer with the project and ice cool healthy smoothies have kindly been sponsored by Urban kitchen for attendees to try. £5,000 worth of products for Fibromyalgia will be made available for volunteer Fibro sufferers to take home for free and test. Volunteers will then be able to keep many of the products.

 

Sponsors include Nutri, The Nutri Centre, and many more.

  

Tried and Tested project organiser, Caroline Hinkes says:

 

“I am not selling anything. I have fibromyalgia and have wasted ££££ on stuff that frankly makes NO difference.

 

So together lets test products, find out what works and TELL other sufferers so we can make targeted decisions on how we spend our healing pound….

 

So come on take part in this event. Lets make a difference! 

 

It can’t happen without YOU!”

 

The Tried and Tested launch event is taking place at 2pm, on Thursday 5^th June at The Green Room, Woodhatch Centre (tucked behind some shops), Whitebeam Drive, Reigate RH2 7LS. Please RSVP to Carolinetraining@aol.com.

 

International Fibromyalgia Awareness Day May 12th

May 12th is International Fibromyalgia Awareness Day!

May 12th was chosen as the International Awareness Day for Fibromyalgia because it was the birthday of Florence Nightingale. The pioneer of modern nursing developed Crimean Fever following her return from the Crimean War and this developed into a chronic condition that was finally diagnosed as neurasthenia, a diagnosis no longer around that encompasses what are now known as Fibromyalgia Syndrome, Chronic fatigue Syndrome or ME and other conditions. Despite being severely disabled by her condition, Florence Nightingale played the central role in the establishment of the Royal Commission on the Health of the Army which led to a major overhaul of military medical care, set up what is now known as the Florence Nightingale School of Nursing and Midwifery, helped set up the Women’s College of Medicine and wrote a book.

If anyone is near the West Berkshire area of the UK, the West Berks ME & Fibromyalgia Support Group are holding a special drop-in session this evening from 7pm, in Meeting Room 2 of the West Berks Community Hospital (on the A4 just east of Newbury). Prospective members with Fibromyalgia Syndrome (Fibro) are especially welcome, but anyone interested in Fibro, whether they are a friend, carer or someone just wanting to know more, should come along to chat about Fibro and hear what is going on for Fibro awareness.

The FibroAction website is unfortunately down until this evening because of upgrades to the server in the US over the weekend (with time differences), but check back this week for the new and improved version! www.fibroaction.org

 

Fibro patients may not seek help because symptoms seem normal

A new study has reported that Fibromyalgia Syndrome (Fibro) patients may not seek help to manage their symptoms because the symptoms seem normal to them.

Fibro often takes a long time to diagnose, with some patients even reporting that they had symptoms for decades before diagnosis. The attitudes and actions of the healthcare professionals seen by the patient are obviously involved in this delay, but so too can be patient attitudes and actions. A problem with invisible illnesses, such as Fibro, which have no outward sign of illness, is that even the patient can doubt whether the symptoms are really there. The symptoms of Fibro have been shown in research to have a number of physiological causes, but with nothing visible, some patients end up wondering if everyone feels the same as them. Many patients try to lead a normal life for some time after the onset of Fibro, maintaining careers, relationships and lifestyles as far as possible for as long as they physically can, despite the immense struggle this can be. This struggle to remain “normal” can continue after diagnosis.

The study, carried out by a Turkish doctor, investigated whether Fibro sufferers who didn’t seek medical help had a different level of normalising attributes than patients who sought medical help. Thirty-seven Fibro patients who were seeing consultants about their condition were compared with 38 Fibro sufferers who weren’t seeing a doctor, as well as 34 healthy controls. They were assessed for anxiety, depression, alexithymia (a relatively new term meaning the inability to express feelings in words) and normalising attributes.

The Fibro sufferers who weren’t seeing a doctor were found to have the highest normalizing scores, with the Fibro patients who were seeing a doctor having even lower normalizing scores than the healthy controls.

The article concluded that “normalization may negatively influence help-seeking behavior and contribute to non-help-seeking behavior.”

Reference: Gulec H. Normalizing Attributions May Contribute to Non-Help-Seeking Behavior in People With Fibromyalgia Syndrome. Psychosomatics. 2008 May;49(3):212-217.

 

Physical therapy for Fibromyalgia

German researchers have developed a guideline relating to the use of physical therapies in the treatment of Fibromyalgia Syndrome (Fibro).

The guideline, from researchers in the Pain Management department at Heidelberg University Hospital, was developed in cooperation with 10 German medical and psychological associations and 2 patient self-help groups.

In order to develop the guidelines, a systematic literature search for controlled studies evaluating physiotherapy, exercise and strength training and other physical therapies was carried out, covering the period 1966 to December 2006, although there were most studies available for the period 1980 to December 2006. The strengths of the recommendations from the studies found were graded according to the German program for disease management guidelines and standardised procedures were used to reach a consensus on the recommendations.

The guideline says that aerobic exercise training is strongly recommended (grade A) and the temporary use of whole body hyperthermia (heat therapy), balneotherapy (bathing) and spa therapy is recommended (grade B).

However, the researchers said that most of the studies used small sample sizes and were for short duration (6-12 weeeks) so the significance that can be applied to them is restricted.

Reference: Schiltenwolf M, Häuser W, Felde E, Flügge C, Häfner R, Settan M, Offenbächer M. [Physiotherapy, exercise and strength training and physical therapies in the treatment of fibromyalgia syndrome.] [Article in German].  Schmerz. 2008 May 2 [Epub ahead of print]

 

Does chronic pain change the structure of the brain?

The journal Pain has published an article that discusses whether chronic pain changes the structure of the brain.

Dr Arne May from the Department of Systems Neuroscience, at the University of Hamburg Eppendorf, Germany describes how changes to the structure of the brain in areas relating to pain transmission have recently been found in patients suffering from phantom pain, chronic back pain, irritable bowel syndrome, fibromyalgia and two types of frequent headaches. Although the changes found were different in each group of patients, they apparently overlapped in regions of the brain - the cingulate cortex, the orbitofrontal cortex, the insula and dorsal pons - that work together during the experience and the anticipation of pain.

Dr May says:

“As it seems that chronic pain patients have a common “brain signature” in areas known to be involved in pain regulation, the question arises whether these changes are the cause or the consequence of chronic pain.”

He goes on to suggest that the changes in brain structure seen in chronic pain patients are the result of frequent painful stimuli and should be reversed if the pain is adequately treated.

Reference: May A. Chronic pain may change the structure of the brain. Pain. 2008 Apr 12 [Epub ahead of print]

 

Chronic fatigue syndrome in male gulf war veterans and civilians: a further test of the single syndrome hypothesis.

An article was published in the May edition of the Journal of Health Psychology that discusses differences in the onset of CFS in veterans and civilians.

The researchers compared 45 male veterans with CFS to 84 male civilians who satisfied identical case criteria. All were evaluated for fibromyalgia (FM), multiple chemical sensitivity and psychiatric conditions. The study found that in civilians, CFS  was more likely to present in a sudden flu-like manner than in veterans, and civilians also had Fibro (as well as the CFS) more often.

The researchers said:

“Different modes of fatigue onset in male Gulf War veterans versus male civilians raise the possibility that chronic fatigue syndrome (CFS) may not be a single disease entity.”…”[our] findings question the assumption that all patients with CFS suffer from the same underlying disorder.”

The possibility of subsets of CFS has been much discussed and will be the subject of a conference in London this year. Given the lack of a good case definition for CFS, there is a lot of confusion about when a symptom - chronic fatigue - becomes a diagnosis - CFS.

Reference: Ciccone DS, Weissman L, Natelson BH. Chronic fatigue syndrome in male gulf war veterans and civilians: a further test of the single syndrome hypothesis. J Health Psychol. 2008 May;13(4):529-36.

 

Misdiagnosis of Serotonin Syndrome as Fibromyalgia and the Role of Physical Therapists

An article has been e-published ahead of print in the journal Physical Therapy that looks at the misdiagnosis of Serotonin Syndrome as Fibromyalgia Syndrome (Fibro) and the role of physical therapists in recognising the symptoms.

With the increased use of medications that boost serotonin levels, such as the anti-depressants Selective Serotonin Reuptake Inhibitors (SSRIs), the condition Serotonin Syndrome has emerged and may be affecting increasing numbers of patients. Serotonin Syndrome is a condition triggered by the use of serotonin-boosting medications or supplements, where an excess of serotonin within the brain and spinal cord that causes a number of symptoms including muscle spasms and gastrointestinal side effects. Although the condition is often described as a potentially life threatening condition that takes effect shortly after starting a serotonin boosting medication, the symptoms can be mild and thus escape immediate diagnosis. It is important to realise that supplements, as well as prescription and over the counter medications, can also be a factor in Serotonin Syndrome.

The purposes of the case study were “to describe how to identify serotonin syndrome in a patient who is taking citalopram (a selective serotonin reuptake inhibitor) on the basis of signs and symptoms and to promote the ability of physical therapists to recognize such signs and symptoms.”

The patient in the case study was a 42-year-old woman who had been diagnosed with Fibro and had been referred for physical therapy (physiotherapy). The physical therapist recognized that the patient’s symptoms did not resemble those of Fibro and recommended a referral to a neurologist for further diagnostic testing. The neurologist diagnosed serotonin syndrome, as related to the patient’s use of prescribed citalopram and the patient was weaned off the medication, making a full recovery. The patient’s scores on the Oswestry Disability Index decreased from 70% to 28% at discharge from the physical therapy treatment and to 0% at the 6-month follow-up and the patient has been able to return to her activity level prior to getting ill, including work, skiing and motorcycle riding.

The article goes on to say that ”[this] case report demonstrates how careful evaluation by the physical therapist indicated that signs and symptoms were not consistent with fibromyalgia, and further medical evaluation revealed the actual diagnosis of serotonin syndrome.” Good, well trained physical therapists are often ideally placed to evaluate a fibro diagnosis as the way they work, with exercise and hands-on treatments makes it easier for them to check for the widespread pain and hypersensitivity to pain that characterise Fibro. They also tend to see a large amount of Fibro patients and are often the healthcare professionals most familiar with myofascial pain, a differential diagnosis to Fibro and a condition which also often occurs with Fibro.

For more information on serotonin syndrome, here are some links:

Serotonin Syndrome, an overview by the Mayo Clinic

A discussion on Serotonin Syndrome

Reference: Alnwick GM. Misdiagnosis of Serotonin Syndrome as Fibromyalgia and the Role of Physical Therapists. Phys Ther. 2008 Apr 17 [Epub ahead of print]

Nolan S, Scoggin JA. Serotonin Syndrome: Recognition and Management. US Pharmacist. 1998 Feb 23.2

 

April Pain Blog Carnival

The April Pain Blog Carnival is up at How To Cope With Pain  and a post of mine is featured. There’s a great selection of posts, so go check it out.

 

Ten Reasons Why I Blog

I’ve been tagged by Chronic Chick Talk to do a meme with 10 reasons why I blog, so here they are:

1. I started blogging as a way to record my journey with Fibromyalgia. My old blog started as a diary that anyone could read, with the ups and downs of my new life being ill. If you’re interested, the old blog is still up at lindseymiddlemiss.spaces.live.com - it may be of use to someone, particularly if you want to know what it all had really been like, including my adventures with medication.
2. I now blog to raise awareness of Fibromyalgia Syndrome.
3. I blog because it is something I have always managed to do even when really quite sick.
4. I blog to provide somewhere people with Fibro can go to look at summaries of research. Although abstracts are available on pubmed.org, they can be difficult to understand and don’t link to related abstracts. I hope to make it easier for other Fibromites to get information about evidence based research.
5. I blog to provide information relating to the West Berkshire ME & FM Group, which I run. The group has its own website but it is often easier to post stuff here.
6. I blog to keep a record of information related to Fibro - if I’m looking for a news item on Fibro, or even a specific piece of research, then I search my own blog first. It’s very useful when you need to reference information or at the end of the month when I need to do the local group’s newsletter.
7. I blog to publicise events and activities raising awareness of Fibro, such as the PolkaDotGals Calendar Campaign for Fibromyalgia Awareness.
8. I blog to connect with the medical blogosphere, to network, to make relationships and to learn from others.
9. I blog to advertise what myself and my friends are doing, such as the setting up of FibroAction, a new UK association for Fibro awareness.
10. I blog because I started and now I don’t want to stop!

I’m tagging:

Screw Bronze

CIDP and me

The Daily Headache

Even if they haven’t got the spoons to respond, go read their blogs!

 

ARC awards £2.5million for primary care research

The Arthritis Research Campaign has awarded £2.5million over five years to fund a National Primary Care Centre at Keele University.

According to an article in Medical News Today, “around 20% of UK adults consult their GP about arthritis or a related musculoskeletal condition every year. Despite this, research into the most appropriate methods of investigation and treatment in primary care, which is carried out by physiotherapists and nurses as well as GPs, has attracted little funding and attention.”

The new centre should hopefully have a considerable impact on the way people with musculoskeletal conditions are treated, as well as increasing the status of primary care research.

For more information, please see the full article.