Belfast Fibromyalgia Conference
by Clare Bold
On Friday 25 August Jo and I travelled to Belfast for the FMSNI (Fibromyalgia Support Northern Ireland) 3rd International Conference held at the Europa Hotel in Belfast.
There was a Conference for Medical Professionals on the Friday night which Jo and I were invited to attend. This gave us an opportunity to meet some of the Doctors who were speaking at the Conference on Saturday and also the ladies who had put so much work into organising the Conference.
We were up bright and early for the Conference on Saturday morning, which was held on the 12th floor of the hotel, with spectacular views across the city.
With so many speakers, the Programme was hectic, with a few tea and coffee breaks scheduled to enable people to get up and stretch their legs and to visit the room downstairs where there were information tables, people from several local Support Groups and also items for sale including hand-made greetings cards, pens, badges etc.
 
Dr Gary McCleane, Consultant in Pain Management from Northern Ireland was the first speaker. He talked about Pain Management for Fibromyalgia, focusing on the various medications available including Tricyclic Anti-depressants, such as Amitriptyline, Opioids, muscle relaxants and Anti-convulsants such as Pregabalin and Gabapentin. He also mentioned topical treatments such as Lignocaine patches, Glyceryl Trinitrate (GTN) and Capsaicin. In terms of oral options, he said increasing evidence points to an analgesic effect of the 5HT3 antagonists (conventionally used as antiemetics, ie. Anti-sickness drugs) in Fibromyalgia pain, although they do have principal side effects of constipation and headaches.
Dr Sharon Clarke, Assistant Professor from Oregon University, USA, then gave a talk called ‘Realistic Strategies and Expectations for Exercising with Fibromyalgia’. She talked about the benefits of exercise in that it can improve flexibility, endurance, strength, and the ratio of fat to muscle in your body. Dr Clarke has MS, so is well aware of the difficulties someone with a long-term health condition may experience, but her advice was to start small and to try to incorporate some exercise into daily life. She did not expect us all to be rushing off to the gym!
She said that how you use your muscles is important and recommended minimising the amount of work you do with your muscles contracted and lengthening at the same time, ie. Eccentric work. Examples in everyday activities are drying your hair with your arms overhead (something I really struggle with), pushing a vacuum cleaner, putting clothes into a washing machine. Instead, Dr Clarke suggested, when drying your hair, to bend down and rest your elbow on your leg. You therefore work the muscle but keep it long, to avoid tears and soreness. To minimise eccentric work of your lower body you will need to take smaller steps when walking downhill and downstairs.
Dr Clarke also suggested taking a break from any activity every twenty minutes, by either changing to a different activity or having a stretch break, and pausing between repetitions of the same activity to enable the muscles to have a break, eg. Put one thing away in a cupboard, pause for a short break, then put another item away. She said to ‘be aware of today’s pace’ (or this moment’s pace) as what we did yesterday is not necessarily what we are able to do today. Her survival tips included making a list of things to do, and then doing half! Or to do only the things that have to be done on that day.
Professor Robert Bennett, Rheumatologist from Oregon University, USA, spoke about managing Fibromyalgia from a self-help perspective. He said the rational management of Fibromyalgia calls for a broad-based approach based on a bio-psycho-social approach to management. A structured multidisciplinary approach to managing Fibromyalgia patients requires an appreciation of the parts that make up the whole. He believes that there are 12 separate management issues that usually require attention in most Fibromyalgia patients seeking medical help. These are:- Diagnosis, Education, Pain, Fatigue, Sleep, Psychological Disorders, Endocrine Dysfunction, Dysautonomia, Deconditioning, Cognitive Dysfunction, The Existential Crisis and Associated Syndromes and he went on to talk about each of these in turn. He talked about the areas of the brain that can be affected by Fibromyalgia, including the Limbic System, Hypothalamus, Hippocampus, Prefrontal Cortex, Amygdala and the sleep centre. He also said to consider exercise ‘as a drug’ as during exercise Endorphins and Enkephalins are released, which are the body’s natural pain-killers.
After lunch, Professor Muhammad Yunus, Professor of Medicine, Rheumatology Department, University of Illinois, USA, looked at the ‘Physician Attitude and Suffering of Patients with Fibromyalgia’. He talked about his theory of ‘Central Sensitivity Syndromes’ (CSS) which demonstrates the over-lapping features of Fibromyalgia, CFS, IBS, Migraine, RLS, TMJD and other syndromes. Professor Yunus said that the unifying glue for this group of diseases is the ‘third paradigm’ of neuroendocrine aberration/central sensitivity, causing widespread hyperalgesia, an exaggerated response to normally painful stimulus, low serum serotonin, increased substance P in the cerebrospinal fluid, norepinephrine deficit, an abnormal dopamine status, an anomalous autonomic function and other hormonal dysfunctions.
Prof Yunus with Jo
Mr Bill Whitley, Benefits Advisor from the Vine Advice Centre Belfast, the next speaker, talked about completing a DLA form. This was followed by an enactment of completing a DLA form with Mrs Alana Littlejohn, which highlighted the likely problems claimants would encounter and provided advice on how to complete the forms.
Throughout the day there were scheduled times for written questions previously submitted and also an ‘on-the-spot’ question and answer session with all the speakers.
Margaret Peacock, Director of FMSNI and Conference Organiser brought the Conference to an emotional close, thanking the speakers, helpers and delegates for making the Conference, which had taken two years to organise, a great success.
Jo and I flew back to Gatwick on the Saturday night, after the Conference. So, after a very long day and an awful lot of travelling, we were totally exhausted when we returned home. To be back in our own beds was a most welcome relief! And it was good to have Sunday, and the extra day Bank Holiday Monday, to rest and recover!
 
|
Buy-at the FMS SAS on-line shop.