Article in MCS-Aware Magazine

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Category: General

Created on Tuesday, 31 May 2022 11:43

Published on Tuesday, 31 May 2022 11:43

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FMA UK chair Des Quinn had an article featured in the Spring/Summer edition of MSC-Aware Magazine

"Fibromyalgia and MCS are conditions that can both benefit from more awareness and research. People affected by them have their choice and freedom limited but also their lives stunted with many experiencing grief at the loss of their previous quality of life. They also face the challenges that their condition presents, and the consequences of others ignorance and health professionals lack of options.
 

Our charity exists to support people living with fibromyalgia and those affected by it. Part of our core activities is to increase awareness of the condition in as many ways as possible. The charity is based in Paisley, near Glasgow with volunteers and over 150 support groups across the UK. We operate helplines, send out free resources and work with researchers to further knowledge about the condition.

Fibromyalgia is a chronic condition of widespread pain and profound fatigue and is thought to affect as many as 1 in 20 people. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may 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"

Awareness Days 

International awareness day falls on the birthday of Florence Nightingale and is also International Nursing Day. She suffered from a chronic health condition which could possibly be fibro and since the mid-90s May 12th has been the day that people with fibro from all over the world try to raise awareness.

In the US the month of May can also be seen to feature many fibro awareness events but, in the UK, we focus on May 12th and have an awareness week in September. We promote all activities that bring the condition to wider attention through case studies, group events, and online activities.

Awareness week is set by FMA UK and can change dates each year, but it starts on the first Sunday in September. Both of these events give the opportunity to try and increase awareness of a condition.

Many within our community express difficulties finding the correct medication that works for them but also suffer with more frequent and severe side effects than occur with others. Pain is a significant part of fibromyalgia, and we are more sensitive to touch with a cuddle causing pain for some.

There are also many reports of some people with fibro having sensitivity to light and sound particularly when stress levels are heightened. Some also mention that washing powder or air fresheners can cause discomfort and there are some that also have a diagnosis of MCS as well as fibro.

We recently lost a long-time supporter Maureen who was virtually housebound for the last 20 years or so and particularly the last two years. Her allergies, chemical sensitivity as well as her fibro meant that she was limited to when she could leave the house and lived a very restricted life in terms of interactions and even what food she could eat. In the latter 2 years she needed friends to shop for her. Necessary hospital visits were a real problem with staff not always believing her multiple allergies.

She participated on our helpline for a long time until even this was too much of a challenge for her. I was never able to meet her but got regular updates through the years from those who knew her. Her constant support for the charity was most welcome.
 

I have the perspective from my own experience of fibromyalgia and consider myself fortunate to be still able to do as much as I am able. I am not my fibro and fibromyalgia is not all that I am. Others without chronic invisible illnesses find it hard to appreciate our struggle or that we are more than our condition.

Support groups and patient advocacy are critical in helping people deal with our conditions. By working together, we can ensure that the newly diagnosed do not feel alone and are informed of options open to them including good sources of quality information."