Fibromyalgia Awareness

You may edit and use the following letter to write to your MP for help with increasing awareness. You may wish to explain more about your own symptoms, e.g. not all sufferers will be so severely affected by cigarette smoke as I am.

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Dear ……….

I am a (X year old student / young lady / etc... edit as appropriate) suffering from fibromyalgia - 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 am launching an awareness campaign because millions of people are suffering from this debilitating illness but do not know what is wrong with them. There is little literature about fibromyalgia and even some of my doctors aren’t entirely sure what it is, because it is so low-profile.

This awareness campaign isn’t because I want pity. It’s because it took X years to find out what was wrong with me and I’m 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.

I have distributed information booklets in hospitals, doctors’ surgeries, schools, chiropractors, you name it. But it’s not enough. I need your help to increase awareness.

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:
http://www.butyoudontlooksick.com/2006/02/the_spoon_theory.php
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. It describes my life as it is now. I can’t go anywhere smoky or all of my symptoms are aggravated. That was an easy lifestyle alteration; I just cut out the social life!

The little things are more difficult to remember to do. I’ve 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 can’t write – I can’t 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.

It’s Fibromyalgia Awareness Day on the 12th May. Please help me to increase awareness.

If you know anyone who has fibromyalgia, or thinks that this could be the reason they are in pain, then please refer them to www.diagnosesupport.com so that they can find information on how to cope with the various symptoms involved. 

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 reading this. I really appreciate it.

Yours sincerely,

INSERT NAME HERE




FIBROMYALGIA

Fibromyalgia is caused by the brain not producing enough serotonin during sleep for the patient’s muscles to relax. This leads to severe muscle tension, which is very painful and muscle knots often form all over the body. Even when completely mentally relaxed, FM sufferers are unable to make their muscles relax and will still be very stiff and tense. Sleep is non-restorative so FM sufferers have chronic fatigue.
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.

The cause of all fibromyalgia is unknown, but there are many theories about causes. Some FM is triggered by a trauma that affects the central nervous system. In some cases FM may be triggered by an infectious agent such as a virus, but no such agent has been identified. Lyme disease, mould toxicity and mercury poisoning have also been identified as triggers of FM in some people.


Fibromyalgia is difficult to diagnose because many of the symptoms mimic those of other disorders, such as MS, ME and Lupus. A diagnosis of FM is based on widespread pain in all four quadrants of the body for more than 3 months, and tenderness in at least 11 of 18 specific tender points.


There is no cure-all treatment for fibromyalgia. However, some of the symptoms can be treated. Low-dose antidepressant medications taken at night increase serotonin production by the brain, improving quality of sleep and causing muscles to relax. Magnesium supplements and muscle relaxants can help and trigger point therapy massage, acupuncture and chiropractic treatment may offer some relief.


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You may use this sample letter and edit it as you wish. If you would like to include information about Chronic Fatigue Syndrome, there is some information below, which I have collected for you. You can either combine this information with the information about fibromyalgia or you could simply send 2 letters and edit the first letter to make it more appropriate to your personal symptoms!

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CHRONIC FATIGUE SYNDROME / MYALGIC ENCEPHALOMYELITIS

Chronic Fatigue Syndrome (also called Myalgic Encephalomyelitis) is a serious, debilitating illness that can last for years, sometimes for life. The severity of the symptoms varies hugely between sufferers. Some become totally incapacitated by CFS, whereas others have fluctuations in the severity of their symptoms. People with CFS are not just tired for a long time, as the name suggests. There are many other symptoms of CFS and it is unfortunate that the name is so misleading.

The symptoms of CFS / ME include:
• extreme fatigue that has lasted at least six months and does not improve with rest
• postexertional malaise (relapse of symptoms after physical or mental exertion)
• non-restorative sleep, so the patient often feels more tired in the morning than they felt when they went to bed.
• an intense, flu-like feeling
• substantial impairment in memory/concentration
• muscle pain
• pain in multiple joints
• headaches of a new type, pattern or severity
• sore throat
• tender neck or armpit lymph nodes
• problems with balance or co-ordination
• sore throat
• fever and/or chills

CFS / ME 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.

How Common is CFS / ME?
Statistics about CFS vary hugely. Some estimate that 800,000 U.S. adults have CFS and approximately 80% of those are currently undiagnosed and do not know what is wrong with them

What is the Cause of CFS?
The cause of all CFS is unknown, but researchers have several theories about what the causes or triggers may be. Some CFS is triggered by an injury or trauma that affects the central nervous system. CFS 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.

How Is CFS Diagnosed?
CFS is difficult to diagnose because there are no diagnostic tests and many of the symptoms mimic those of other disorders, such as MS, Fibromyalgia and Lupus. A diagnosis of CFS depends on laboratory tests and a detailed review of the patient’s medical history to rule out other illnesses.

How Is CFS Treated?
There is no cure-all treatment for CFS. However, there are many treatments that can help a patient to control and cope with it. Management of CFS generally relies on rest, with gentle graded exercise where appropriate. The patient must modify their lifestyle to avoid situations that aggravate their symptoms and it is possible to treat some of the symptoms. For example, medications can be used to treat sleeping difficulties and headaches, which may be experienced by people with CFS.

www.freewebs.com/fibromyalgiaawareness

Fibromyalgia Awareness - Highlighting an Invisible Illness!