Hello everyone! I know this is long but it took me ages to write it so please read it!

Aaround this time last year I was diagnosed with fibromyalgia. It is an incurable and very painful illness that has been getting progressively harder to cope with. I have been suffering from the horrible pain since I was 14 and from related sinus problems since I was 7, 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 (as you do!), with the support of other members of an online support group I have joined, most of whom are now bedridden because, although all the medical books say it’s not progressive, real life shows that it is. & I’m scared of ending up like that. There is hardly any literature about it and even 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 13 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. & hey, if I can get other people to join in with this campaign, who knows how successful it could become? Maybe if more people know about fibromyalgia, more people will do research into a cure for it!

So far the awareness campaign is going well. I have made information booklets about fibromyalgia that are more up to date than the inaccurate old ones I have found on the web, & I have distributed them in hospitals, doctors surgeries, schools, chiropractors, you name it. I’m going to try to arrange to give presentations about fibromyalgia in local schools. Some members of the support group are setting up websites about fibromyalgia, but it’s not enough. We need to catch more people’s attention!

Please help me out with this campaign by reading the information below about fibromyalgia and passing it on to anyone who you feel might benefit from it. You might save someone years of searching for answers and feeling like they’re the only person who suffers with this constant pain. If any of you know anyone else who has fibromyalgia, or thinks that this could be the reason they are in pain, then please feel free to tell them to contact me & I’ll give you information on how I’m coping with this and managing to keep my head above water.

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 so much. I don’t 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 can’t 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. 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.

So please read the info about fibromyalgia, pass it on to anyone who you think may benefit from it, & if you are interested in trying to imagine what it’s like to live with a chronic incurable illness read the spoons story too. It’s Fibromyalgia Awareness Day on the 12th May. Please help me to increase awareness, even if it is just by educating yourselves about it. If you want to help more, by all means you can print out the information I am going to post below this and put it everywhere you can think of, but I realise that no-one has huge amounts of spare time so please at least read the information yourself. Let me know if anyone has any great ideas about how I can increase awareness!

I hope that somehow my passing this information on to you all 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.

Best wishes

b

FIBROMYALGIA AWARENESS DAY IS MAY 12TH!

What is Fibromyalgia?
Fibromyalgia is often described in medical journals as follows: a chronic pain disorder characterised by widespread musculoskeletal pain, fatigue, and multiple tender points. "Tender points" refers to tenderness that occurs in precise, localized areas, particularly in the neck, spine, shoulders, and hips. People with this syndrome may also experience sleep disturbances, morning stiffness, physical intolerance to cigarette smoke or other chemicals, irritable bowel syndrome, anxiety, and other symptoms.

This description, however, doesn’t even begin to cover it and is not quite correct, because the stiffness experienced by someone with fibromyalgia is not only in the morning; it is at all times and does not improve as the day goes on. 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 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 fluctuate from person to person, there is one common symptom that is experienced by all sufferers - they hurt all over. The pain can feel like a deep bone ache, pains and needles, or most commonly a stabbing or burning pain. Muscles may feel like they have been pulled or overworked, but usually they feel tense. There are times this pain is mild, others when it is so severe that it becomes unbearable, but it never goes away completely.

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. A lot of the pain develops in 18 specific trigger points, which a doctor will test you for if they believe that you may have fibromyalgia. However, many other trigger points develop as well as the standard 18. 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.