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General Information
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General Background
The Hull & East Riding Fibromyalgia Syndrome Support Group was set up in October 2000 to provide support and information to those suffering, and their families and carers of this misdiagnosed and very painful condition. It started with just an advert in the Beehive column of the Hull Daily Mail and now going into our 5th year membership stands at 75 approximately half of these are partners and carers.
Fibromyalgia Syndrome is a pain amplification syndrome, sufferers bear incredible pain. There are a whole host of other symptoms that occur with this syndrome i.e. lack of restorative sleep, chronic fatigue, intense pain, Trigeminal Neuralgia (TMJ), widespread muscle ache, short term memory problems, irritable bowel syndrome and depression to name but a few. To complicate matters further another syndrome commonly occurs alongside FMS - Myofascial Pain Syndrome (MPS). This only increases the suffering of the FMS patient and muddies the waters around getting a diagnosis.
Due to the lack of knowledge by medical professionals that FMS even exists sufferers spend years going backwards and forwards to their GPs coming away told, they are depressed - very common in all who live with chronic and untreated pain. Eventually they maybe referred to a specialist who may know very little about FMS and the sufferer is lucky to leave with a leaflet and a prescription for anti-depressants. Often the shock reply is ‘there is nothing I can do for you’!!! Clearly this is not a satisfactory response to someone who is living his or her life with this complex condition.
Many of the sufferers in our group have had a terrible struggle to get to the point of diagnosis. They may well have lost their jobs, as they
simply cannot work anymore. It is incredibly difficult to claim any kind of benefit, as so little is known about the condition. In turn they lose what little social life they had. Finally the sufferer and corers become isolated. The partner or carer may become the sole breadwinner as well as working as a full time partner/carer, they may have to do most or all of the household work, i.e. parenting, taking care of someone who’s pain has become a chronic illness. The carer themselves are in danger of becoming ill, they take on board all of this as well as trying to understand why their loved ones became so ill yet, with no physical cause’. There is no physical evidence to be seen with FMS - MPS. Most sufferers look very well and healthy on the outside.
Hopefully our group does help in many of these areas. We hold support group meetings every second month as well as keeping in touch with members i.e. help line, Newsletters with up to date information. Our aims as a committee can alleviate some of the anxieties and fears of the unknown, that our members, are experiencing. It is sheer relief for a sufferer to call or even see another person with FMS. It can be a lifeline for those caring for someone with FMS - many are men due to the percentage of women that suffer this syndrome. The support network of a male is essential
- all the more reason to start to help the carers understand the nature of this and reassure them that their efforts are not in vain.
Our group is set up to come together to help not only the FMS sufferer, but also their partners/carers. Life is hard for everyone and more difficult if you have a chronic illness to deal with, but still it is very much for those who recognise that although there isn’t a cure and medical treatment is limited there are things, which can help to alleviate some of the symptoms, by learning coping strategies together. Indeed the group really belongs to each and every member and their carers, we all work together to help each other to achieve our aims and goals.
We have regular guest speakers, to educate sufferer’s partners/carers on ways that they can help themselves. Guest speakers at post meetings have included an Osteopath, Medical Herbalist, Physiotherapist, Psychologist,a peer support worker, remedial massage, Dolphin Watch, martin House Hospice and a speaker from MIND.
We are delighted to be operating a library so that sufferers can read up on this condition themselves, and educate their partners/carers on self awareness of Fibromyalgia. This was due to a grant from the Primary Care Trust.
We are also a member of a Regional Consortium. The consortium consists of approximately 14 other FMS support groups & helplines. We work closely with Fibromyalgia UK to bring about awareness and campaign for research and changes in the benefit system so that FMS is more widely recognised.
We have two patrons:
Kath Lavery Chair of Hulls Primary Care Trusts
and
Councillor Mary-Rose Hardy
East Riding of Yorkshire Council
The committee and members all work together to help & support sufferers/partners/carers in the Hull & East Riding Area
September 2007
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