Fibromyalgia group petitions National Health Service for pain therapy changes

Lana Bandoim's picture

A fibromyalgia group is petitioning the National Health Service (NHS) in the U.K. for pain therapy changes. The Pifflers United Chronic and Invisible Illnesses Support Community has put together an online petition to modify the current guidelines to better reflect the disorder. The group would also like for clinical trials to be conducted for a potential treatment option.

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The Pifflers United Chronic and Invisible Illnesses Support Community wants to gather 25,000 signatures on its online petition. It wants the National Institute for Health & Care Excellence (NICE) to change its rules to reflect the true problems associated with the condition. Pain management is a serious issue that needs to be addressed, and the group feels the NHS should not ignore it.

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The petition also includes a section asking for clinical trials to be offered for the ActiPatch. The product uses electromagnetic pulse therapy to fight chronic pain in fibromyalgia. A previous study involving 140 patients who suffered from fibromyalgia found that the patch helped them reduce pain during a trial that lasted for seven days. Now, the Pifflers United Chronic and Invisible Illnesses Support Community wants the patch to be taken more seriously by the National Health Service through more clinical trials.

Fibromyalgia sufferers have been sharing their stories as they sign the petition, and there are common trends emerging from their words. Many of them have faced doctors who did not understand fibromyalgia and have suffered for years with the wrong diagnosis. They also share horror stories of medications and treatments that did not work or made them feel worse. They believe better guidelines from the National Institute for Health & Care Excellence would help by giving medical professionals a better baseline to deal with the disorder. In addition, it would give them an important resource for showing others that the condition is real.

Read more about fibromyalgia:
Memantine drug shows promise for fibromyalgia
Fibromyalgia study focuses on brain stimulation to fight pain

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Comments

I myself suffer from rhematoid arthritis but my best friend suffers with fibromyalgia and I see her struggle daily with this disease!
I've been suffering from fibromyalgia for ten plus years. I am a mother and no matter the level of pain I have to be able to take care of someone else. And I'm very lucky that I have a great support system that is here when I'm real sick to take care of my responsibilities for me. Because sometimes I'm just not able. Sometimes it's so severe I have no choice but to stay in bed all day. And when traveling it takes a toll on me mentally and physically. So my point is some days are good and some days are really bad. I feel like no one quite understands what my body goes threw on a day to day. I also feel like I've been discriminated against. I feel like some Doctors don't do enough research. They should be more educated on every illness. I only know what I go threw each day. I really hope we can find a cure or just keep managing the symptoms.
please find it in your heart to do something in the united states to help us too
I was told in 2002 I had fibromyalgia I've signed for it to recognised as serious condition,may 2006 I think I recived a letter stating it has been recognised but what I don't understand is why is it not advertised enough no one will offer to run for our cause like for cancer or arthritis or other causes if they don't know what fibromyalgia is!! Or the pain it causes!how it can totally mess that persons life and the people that's round the person suffering with it ...MORE ADVERTISING PLEASE,MORE HELP=MORE UNDERSTANDING
I started getting terrible pains mostly in my upper back about five years ago, whereby I could not lift my arms, and I felt terribly tired, however, I put a lot of it down to my age and just tried to carry on, however, after a year of this i went to the Doctor who in turn sent me to the hospital for various tests. They decided it was myofacial pain. Unfortunately my pain has become widespread, and I am often so very tired, I have been given various pain killers but none of these really work. I take 4 Nortriptyline tablets at night and they do assist me in sleeping a little better. I am a very active person, I and try to keep going I swim, and try to do most things normally, but sometimes the pain is just too much. It must be recognised, we are not malingerers , it is real.