Fibromyalgia Support Group for Surrey and Sussex

LIVING WITH FIBROMYALGIA
Review by Jeanne Hambleton – UK Journalist & Fibromite

If you are looking for information about Fibromyalgia, a new DVD from America can answer a lot of the questions. Called Living with Fibromyalgia – it is the true story of a family learning to live with their Mom who was diagnosed with this debilitating disease.

But this is more than tea and sympathy for the patient. This is the pursuit of knowledge by Daneen Akers, who is the driving force behind the DVD, following a journey of hope and understanding filmed by her husband, filmmaker Stephen Eyers.

Daneen interviews her Mom, Dr Stuart Silverman, a leading expert in the field of Fibromyalgia, doctors and other FMS patients who have learned to survive and thrive with this invisible disease. Lynne Matallana, co-founder of the USA National Fibromyalgia Association, tells her own emotional story with support from her husband Richard.

The film, which lasts about 70 minutes, is the result of two years work of interviews and research. It is a film Daneen and Stephen wished they could have been shown when Mom was first diagnosed. Certainly a must for “normals”.

It is an interesting journey with tips, advice and stories from people you can identify with. Strangely enough their story somehow becomes your story too. The similarities are striking. They share their pain, sorrows and hopes with the viewers.

As someone who also suffers with Fibromyalgia, I found the DVD gave me an insight into how others cope with the day-to-day pain, their disappointments and accepting they can no longer achieve what they did before. Yes there is life after Fibromyalgia, but learning to live with it is the secret.

I found it reassuring to watch Mom sit down while others did household chores including the washing up. Both Mom and her family had come to terms with the fact that Mom wanted to do her own jobs, but could not. The family gracefully accepted Mom’s limitations while she had learned to live with any guilt she might have felt.

Daneen’s Mom was in training in 1997 for the Honolulu Marathon just before she suffered a knee injury. From that day her life changed and would never be the same. But all these years later and feeling better she is hoping to walk the Honolulu Marathon or at least part of it, one day. Yes there is hope!

There are a lot of lessons to be learned from this. Having watched it once I was eager to watch it again in case I had missed something. It is so full of information – details which families, newly diagnosed Fibromyalgia patients and those living with FMS, will find absorbing.

Interesting facts in the film confirm that millions of people around the world are suffering with Fibromyalgia and in America that figure is between 8 and 10 million. It also appears that Florence Nightingale also had Fibromyalgia. In the 1800s it was called muscular rheumatism, before it became Fibrositis. In the 1900s the name changed again and it eventually became known as Fibromyalgia.

Dr Stuart Silverman from the Cedar Sinair Clinic in Los Angeles confirmed Fibromyalgia as a disorder of the central nervous system while the cause remains a mystery. It is not degenerative and Fibromyalgia patients will not die said the Doctor.

© Jeanne Hambleton