Living with Fibromyalgia

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.

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!

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.

From the ME Association:

“The search is on for volunteers to supply blood samples to the ME/CFS genes expression study being conducted at Glasgow Caledonian University by Professor John Gow and his research assistant Dr Suzanne Hagen.

The Glasgow research group – set up by Professors Peter and Mina Behan over 20 years ago – now have a list of candidate gene markers which they would like to test out on a larger number of samples from patients with ME/CFS.

It is necessary to test the potential diagnostic test under strict research criteria before a robust diagnostic tool becomes generally available.

It is emphasised that samples are required at this stage for inclusion in an ongoing research project. A diagnostic test is NOT being offered.

The group required blood samples from patents with ME/CFS who have been diagnosed by a clinician familiar with the condition.

Ideally they would like a 5ml ample of blood in an EDTA tube (not heparin) and a 5ml blood sample in a clotted plasma tube together with a covering letter from the clinician, containing brief details of the case history.”

For more information, click here.

The ME Association has publicised an article that was originally printed in “The Big Issue in the North’, 14-20 April 2008  (writer: Martin Guttridge-Hewitt). The article dicusses the use of cognitive behavioural therapy in the treatment of chronic fatigue syndrome coming under renewed fire ahead of a controversial Royal Society of Medicine conference at the end of this month.

CBT is a psychological therapy that aims to address thoughts and behaviours that perpetuate or worsen a patient’s symptoms. Along with the even-more controversial Graded Exercise Therapy (GET), it is recommended in the NICE (National Institute for Clinical Excellence) Guideline on ME/CFS.

According to the article, British Psychological Society members “brand CBT as impractical, uneconomical and inflexible” and also say that the NICE guideline “hypes” up the therapy and ignores evidence that other treatments may be more effective.

One of the posts that caught my eye from last week’s Grand Rounds at Dr Val and the Voice of Reason was ‘What trickery is this?’ from Vitum Medicinus. The post recounts the story of a patient who had asked a question of a doctor that she already knew the answer to. In this case, it was a nervous patient talking about a brand new article that it was fair enough the doctor hadn’t heard about.

Vitum said in the post:

“Obviously there are two sides to these issues, but I still wondered how I would feel if I thought a patient had tricked me. It’s true that doctors are expected to make few, if any, mistakes, and it’s definitely good to have someone check up on you once in a while, but it might also prove difficult for me to be in a doctor-patient relationship in which the patient is frequently trying to get me to say something wrong. After all, trust in the doctor-patient relationship goes both ways.”

I wanted to put another side to this argument.

Whilst I agree that trust in the doctor-patient relationship goes both ways and I agree that asking about a brand new piece was hardly fair, I have been known to ask questions to which I knew the answers. Fibromyalgia is usually not taught about at Med School, certainly not in depth and most doctors receive no training in it. As an expert patient with years of researching the medical literature behind me, I often know more about the condition than doctors. Asking questions to which I know the answers if one way for me to assess how much the doctor really knows about Fibro.

I think one factor in this is that doctors usually do not like to be questionned by patients and rarely think that patients can have genuinely good knowledge. In these days of the internet, where a search of the medical literature can be done by a few clicks of the mouse – by anyone – this attitude is out of date, but it is still common. If I could go into an appointment and ask straight out “What do you know about Fibromyalgia?” then there would be no need for loaded questions. But most doctors do not accept that from patients and appearing less knowledgeable than I am at first prevents the doctor from getting riled that I, a mere patient, might be questionning their knowledge. Some doctors, the good ones, are delighted when they find out my level of knowledge and find that they do not need to translate medical speak for me. But many are not and appearing ignorant is neccessary.

I would never expect a doctor to know about articles that have come out very recently – although with my specialist I might well ask if he had seen the article as he has no problem talking about research with me. I would also never aim to embarrass a doctor unless they had shown a real lack of respect to me. As always, respect should go both ways. You respect me and I will respect you.

Last week’s Grand Rounds was at Dr Val and the Voice of Reason over at Revolution Health. A great selection of posts.

Grand Rounds is the best of the medical blogosphere as chosen each week by a different host.

This week’s Grand Rounds is at Doc Gurley and it has a WWF smack down theme.

Researchers at the Departments of Neurology at the Albert Einstein College of Medicine in New York have published (in the journal Neurology) an article with the results of a population study looking at the prevalence and characteristics of allodynia in headache sufferers.

Allodynia is a painful response to a usually non-painful stimulus. It can be either static, where light pressure causes pain, dynamic, where a light brushing causes pain, or thermal, where normally mild skin temperatures causes pain. Cutaneous allodynia is allodynia of the skin.

The study found that migraine sufferers were more likely than non-migraine headache sufferers to suffer from allodynia. Fibromyalgia syndrome has both migraine and allodynia as possible symptoms.

For the study, questionnaires were mailed to a random sample of 24,000 headache sufferers. The questionnaire included the validated Allodynia Symptom Checklist (ASC) as a way of seeing if patients did have allodynia. It also included measures of headache features, disability, and comorbidities (other conditions suffered by the patients) as well as whether the patients used preventive medication or opioids.

16,573 people returned completed surveys. The prevalence of cutaneous allodynia  of any severity varied with headache type. Prevalence was significantly higher in transformed migraine than in episodic migraine and significantly elevated in both of these groups compared with probable migraine, other chronic daily headaches, and severe episodic tension-type headache. The prevalence of severe Cutaneous allodynia was also highest in transformed migraine followed by migraine, probable migraine, other chronic daily headaches, and severe episodic tension-type headache. In the migraine and transformed migraine groups, prevalence of Cutaneous allodynia was higher in women and increased with disability score. Among migraineurs, Cutaneous allodynia  increased with headache frequency and body mass index. In all groups, ASC scores were higher in individuals with major depression.

The researchers concluded that: 

“Cutaneous allodynia (CA) is more common and more severe in transformed migraine and migraine than in other primary headaches. Among migraineurs, CA is associated with female sex, headache frequency, increased body mass index, disability, and depression.”

Many people with Fibro also have issues with TMJ Disorders. I recently heard about the TMJ Association which seems to be a good source of information. Here is what they have to say:

“Temporomandibular Joint and Muscle Disorders (TMJDs) refers to a complex and poorly understood set of conditions that can cause pain in the area of the jaw joint and associated muscles and/or problems using the jaw. Both or just one of the TM joints may be affected. TMJDs can affect a person’s ability to speak, eat, chew, swallow, make facial expressions, and even breathe.

People diagnosed with TMJDs may be experiencing other symptoms and medical conditions as part of broader multi-systems illnesses that go unrecognized. Patients with TMJDs are most often diagnosed and treated primarily by dentists or oral surgeons, while another medical professional may be treating them for other conditions, such as allergies, headaches, fibromyalgia, cardiac arrhythmias, sleep disorders, movement disorders, tinnitus and irritable bowel syndrome, each treating one of the constellation of conditions without considering the body as a collection of interrelated systems.

The TMJ Association (TMJA) was founded by TMJD patients for TMJD patients. We are dedicated to:

Researchers from the Department of Integrated Care at University Hospital Maastricht in The Netherlands had an article published in the April edition of the Journal of evaluation in clinical practice in which they discuss a study assessing whether treatment regimes across five disciplines for fibromyalgia syndrome had changed during a period of 6 years.

For the study, a questionnaire was sent to a sample of 150 healthcare professionals per medical discipline: general practitioners (GPs), rheumatologists, rehabilitation specialists (RS), physical therapists and psychologists.

The overall response rate to the questionnaires was 40.4%. The referral behaviour changed (significantly) over the time period studied, especially between GPs and rheumatologists. An increased choice for aerobic exercise and multidisciplinary therapy was found. Rheumatologists and rehabilitation specialists also showed decreased medication prescribing over the 6 years studied.

The researchers found that preferences of treatment for Fibro differ per discipline. The choice is principally made on the basis of subjective, professional group-bound factors. Particularly for GPs, dynamic patient factors are an important motive in the management of fibromyalgia syndrome.

The researchers concluded that: 

“Despite the fact that most changes found are in conformity with the literature, the absolute application percentages of recommended therapies are still very low. The differences in practice between the several disciplines seem explicable on the basis of the factors that have a prominent role in the choice of a therapy for [Fibro]. This study underlines the need for further research into methods and processes of the management of [Fibro], and their clinical effectiveness. An effective way of dissemination, especially of guidelines, is essential.”

This conforms with my anecdotal experience – treatments offered to patients varies hugely between disciplines of healthcare professionals and between individual doctors. Last year, EULAR (the European League Against Rheumatism) produced the first evidence based recommendations for the management of Fibromyalgia Syndrome and publicising these guidelines seems to be the obvious way forward in promoting standard practices in the treatment of Fibro that reflect the evidence based research available.