Information about support in the Chiltern area for those with Fibromyalgia and ME/CFS
Covering the area of Buckinghamshire, Bedfordshire and Hertfordshire. From Tring, Hemel Hempstead, Uxbridge, Slough and High Wycombe.
Co-ordinator Teresa Williams: For more information please ring 01582 873297 or e-mail: S.BucksFM@gmail.com
The group aims to support people with fibromyalgia and CFS/ME and their family's and friend's. We try to run a positive group to share our ideas and concerns on how to cope with the syndromes. We try and keep up-to-date with the latest and tested treatments, so we don't waste our money on inappropriate treatments. We know it is not easy living with constant pain and fatigue, especially as we often don’t look unwell and family, friends and doctors sometimes have very little sympathy for us.
The Chiltern group, formally know as S. Bucks FM & ME/CFS support group was founded by Linda Horncastle, with the help of Roger Leadbeater and The Fibromyalgia Association UK in October 2001. It is one of over 100 such groups and helplines in the UK working with The Fibromyalgia Association UK. Linda started the group with another member, as there was no other group close enough for her to drive to and because she felt that there was a great need for a support group in the Bucks area: The local NHS services currently provide very little support or treatment for people with Fibromyalgia (‘FM’) and CFS/ME.
At our meetings, we sometimes have a speaker, or a specific discussion topic. From time to time we also have social meetings in a pub over lunch. We maintain a library of relevant books that our members can borrow as well as equipment that can be lent out – allowing members to try before they buy. We produce a newsletter six times a year – in between each of the support meetings.
Meeting times: Monthly usually the 3rd Monday of the month. Bi-monthly at 1.30 p.m. in Seer Green, Bucks UK. Socials at other venues. The group is currently run by Teresa Williams. Linda is now on the Medical Advisory Board for the national charity FMA UK. In 2015 Cheryl Gillan MP visited our group. We were sad to hear she has died she was very sympathetic to our needs as a group.
HINTS FOR LIVING WITH FIBROMYALGIA
(More on CFS/ME will be added soon, though the following is likely to help both conditions)
People with fibromyalgia can have good days and bad days. On a good day it is important to pace yourself; overdoing it can increase symptoms. Listen to your body when it tells you to slow down. Relaxation techniques and meditation can help to reduce the overactive ‘fight and flight’ response. A healthy diet (avoiding or at least cutting down on sugar, coffee, tea and alcohol), gentle exercise, maintaining a good posture and heat (e.g. grain bags and warm baths) can all help reduce pain. Three books we recommend (which can also be borrowed from our library) are: ‘The first year: Fibromyalgia. A patient expert guide for the newly diagnosed’, by Claudia Craig Marek. 'Fibromyalgia and chronic myofascial pain syndrome. A survival manual', by D. Starlanyl M.D. 'The complete idiots guide to Fibromyalgia', by L. Matallana, with Bradley Ph.D., Silverman M.D. and Prof. Yunus M.D
WHAT IS FIBROMYALGIA?
Fibromyalgia Syndrome is also known as FMS or FM. Fibromyalgia is pronounced ‘Fy-bro-my-al-gee-ah’. Fibromyalgia is a chronic condition of widespread pain, hypersensitivity to pain (and other stimuli), profound fatigue and sleep disturbance. It is found in men, women and children. A survey in five European countries put the prevalence of fibromyalgia at between 2.9 and 4.7% of the population. This means it is more common than rheumatoid arthritis and it can be even more painful. Fibromyalgia can co-exist with other conditions e.g. ME/Chronic Fatigue Syndrome and arthritis. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times more than others. It can also change location, usually becoming more severe in parts of the body that are used the most. The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy - as if someone just ‘pulled the plug’. People with mild to moderate symptoms are usually able to live a normal life, given appropriate treatment and guidance. Fibromyalgia is a real condition with an increasing body of evidence to show that it is a Central Nervous System related disorder and part of the Central Sensitivity Syndromes.
HOW IS FIBROMYALGIA DIAGNOSED?
Fibromyalgia is not new, but until recently it was difficult to diagnose. Neither laboratory tests nor X-rays can identify fibromyalgia. Diagnosis is done by taking a careful medical history, then conducting a physical examination and tests to eliminate other conditions. Research is ongoing to find a diagnostic blood test.
SYMPTOMS Fibromyalgia Syndrome is a collection of symptoms, including pain and fatigue. It can also include cognitive disturbance which can reduce the ability to concentrate (often given the nickname ‘fibro-fog').
What causes fibromyalgia?
The exact cause of fibromyalgia is unknown. There is increasing evidence to suggest that it is a disease of the central nervous system, indicated by abnormal levels of certain chemicals in the brain, and functional MRI scans that suggest there are changes in the way the brain, spinal cord and nerves receive, process and deliver messages.
It is thought some people are more likely to develop fibromyalgia because of genes inherited from their parents.
In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as:
- an injury or infection – which makes it even more essential that Unite members work in safe and healthy workplaces;
- giving birth;
- having an operation;
- the breakdown of a relationship;
- the death of a loved one.
Fibromyalgia can also co-exist with other conditions such as rheumatoid arthritis (RA), systemic lupus erythematosus (SLE) and other autoimmune and autoinflammatory diseases, as well as anxiety and depression.
Current treatments for fibromyalgia attempt to reduce pain and improve sleep. There is no one treatment option that works for everyone. Treatment with drugs such as pregabalin, duloxetine and milnacipran have shown effectiveness in randomised clinical trials, leading to approval by the Food and Drug Administration (FDA) in America. Tricyclic drugs are often prescribed for fibromyalgia; they are usually used to treat depression although doses are much lower than for depression. However, many people find medications either insufficient to control their symptoms or difficult to tolerate due to adverse effects. Thus, all medications should be reviewed at regular intervals to monitor their effectiveness over time. An alternative is Alpha-Stim, a microcurrent therapy also FDA approved and now being used in the NHS. It has been shown to improve sleep, and give relief to pain and anxiety, without the side effects that drugs can sometimes produce.
The Chiltern Fibromyalgia and Chronic Fatigue group, UK, is here to support those in the surrounding area who have fibromyalgia and CFS/ME and their family and friends.
• Phone support 0844 887 2464 or e-mail: S.BucksFM@gmail.com
• Bi-monthly meetings
• Guest speakers
• Books, equipment and DVD loan scheme
• and keep up-to-date with the latest research.