This is a sample letter to the press, which you may use and edit as you wish to send to newspapers, magazines or anyone who you think may help increase awareness! I recommend that you edit it and add some personal touches about your own symptoms. For example, you may not be affected as much by cigarette smoke as I am. Some people will find that their symptoms are more affected by perfumes or cleaning products and some will not have any chemical sensitivities.
I am writing to you to ask for your help.
I am a (20 year old student/ mother of two / etc, something personal so that they feel like they can relate to you) suffering from fibromyalgia. It is an incurable and very painful illness that has been getting progressively harder to cope with. I have been suffering from severe pain and other fibromyalgia symptoms since I was X years old, so you can imagine how relieved I was to finally have a diagnosis and an end to the years of searching for answers!
I trying to raise awareness because there is hardly any literature about fibromyalgia and even some doctors arenít entirely sure what it is, because it is so low-profile. Iím hoping that if I increase awareness about fibromyalgia, then other people who suffer from it will be diagnosed earlier on and not have to go through that stress for so long.
So far the awareness campaign is going well. I have distributed booklets about fibromyalgia in hospitals, doctors surgeries, schools, chiropractors, you name it. But itís not enough. We need to catch more peopleís attention!
I need your help to increase awareness. Please include some information about fibromyalgia in your newspaper. It could save someone years of searching for answers and feeling like theyíre the only person who suffers with this constant pain.
I realise that it is very difficult for someone who has never experienced this to understand what it is like to live with an invisible illness day in and day out, so here is the website of the story of someone who managed to put it into words better than I ever could:
It was written by someone who has Lupus, an illness that is similar to Fibromyalgia and the two are often originally wrongly diagnosed as each other because the symptoms overlap so much. I donít know if other people will be affected by the spoons story in the way that I was, but it made me weep when I read it because it is so very true. It describes my life as it is now. I canít go anywhere smoky or all of my symptoms are aggravated. But that was an easy lifestyle alteration; I just cut out the social life!
The little things are more difficult to remember to do. Iíve had to make so many changes that no-one notices from the outside. For example, the pain in my right wrist is so bad now that I canít write Ė I canít even pick up a glass of water, or horrific stabbing pains shoot up through my wrist and arm into my shoulder. When I brush my teeth I have to consciously remember to use my left hand to squeeze the toothpaste tube, because if I forget and use my right hand, then I will be in agony for at least the next 2 days. Hundreds of little changes like that have become extremely important to me.
Itís Fibromyalgia Awareness Day on the 12th May. Please help me to increase awareness and to educate people about it.
If you know anyone who has fibromyalgia, or thinks that this could be the reason they are in pain, then please feel free to tell them to visit http://www.diagnosesupport.com for support and advice on how to cope.
I hope that my passing this information on to you will help to increase awareness and perhaps help someone else to be diagnosed quicker than I was.
Thank you very much for spending your time reading this, I really appreciate it.
What is Fibromyalgia?
Fibromyalgia is caused by the brain not producing enough serotonin during sleep for the patientís muscles to relax. This leads to severe muscle tension, which is very painful and muscle knots often form at the trigger points. Sleep is non-restorative, so the patient feels unrefreshed and often more tired in the morning than they felt when they went to bed.
While the symptoms associated with fibromyalgia vary from person to person, the one common symptom experienced by all sufferers is that they hurt all over. The pain can be a deep bone ache, pains and needles, a burning sensation, or most commonly a stabbing pain. Muscles may feel like they have been pulled or overworked, but usually they feel tense. The severity of the pain varies and it never goes away.
Fibromyalgia has been classified as a syndrome, not a disease. A disease is a condition with a clearly identifiable cause, whereas a syndrome is a set of symptoms that define the condition without a single causative agent upon which to place the blame.
Painful muscle knots form as a result of the tension. Even when a fibromyalgia sufferer is completely mentally relaxed, they are unable to make their muscles relax and will still be very stiff and tense. The following diagram shows the trigger points where the majority of muscle knots and fibromyalgia pain develop:
The diagram shows only the main trigger points that are recognised by doctors, but in actual fact there are a lot more. For example, fibromyalgia sufferers often develop 8 or more painful muscle knots around the shoulder blade, that are not shown on this diagram.
How Many People Have Fibromyalgia?
Articles about fibromyalgia vary hugely. Some say that up to 5% of the population suffer from fibromyalgia, whereas others state that the figure is less than 1%. It primarily occurs in women of childbearing age, but children, the elderly, and men can also be affected.
What Causes Fibromyalgia?
The cause of all fibromyalgia is unknown, but researchers have several theories about what the causes or triggers may be. Some fibromyalgia is triggered by an injury or trauma that affects the central nervous system. Fibromyalgia may be associated with changes in muscle metabolism, such as decreased blood flow, causing fatigue and decreased strength. Others believe the syndrome may be triggered by an infectious agent such as a virus in susceptible people, but no such agent has been identified. Lyme disease is a very important possible trigger to look into, because if it is not treated early on, lyme disease can cause fibromyalgia to develop. Mould toxicity and mercury poisoning have also been identified as the triggers of fibromyalgia in some people.
How Is Fibromyalgia Diagnosed?
Fibromyalgia is difficult to diagnose because many of the symptoms mimic those of other disorders, such as MS, ME and Lupus. A diagnosis of fibromyalgia is based on a history of chronic widespread pain in all four quadrants of the body for more than 3 months, in combination with tenderness in at least 11 of the 18 specific tender point sites demonstrated by the picture on the previous page. People who do not have fibromyalgia are much less tender to pressure applied at these tender points.
How Is Fibromyalgia Treated?
There is no cure-all treatment for fibromyalgia. However, there are many treatments that can help a patient to control it and cope with it. Low-dose antidepressant medications taken at night increase serotonin production by the brain, improving quality of sleep and causing muscles to relax. Patients with fibromyalgia may benefit from a combination of exercise, medication, improvements in posture and relaxation. Magnesium supplements are often beneficial to fibromyalgia sufferers, because magnesium is a natural muscle relaxant.
Fibromyalgia Awareness - Highlighting an Invisible Illness!