As some of you may know, and if you’ve seen my Facebook posts recently, you will realise that I have fibromyalgia, it’s not something I usually shout about, I guess sometimes I try to ignore it, to my cost! It is hard to describe with its myriad of symptoms and so often misunderstood but I have suffered too long in silence and sometimes you just have to stand up and be counted, especially when it will help others. I think fibromyalgia is very often dismissed because it is invisible and one of the difficulties is that it varies in severity from person to person. ME (Myalgic Encephalomyelitis) is also highlighted since they share the same awareness day and co-exist. I have not been diagnosed with ME, but I have spoken, at length, with someone who has both, Rebecca, and she has told me her story which I have added to this post, to give you some insight into the life of those of us who suffer.
Fibromyalgia affects everyone differently and the symptoms vary, with some that are common to all and others that are not, so you can’t tell simply by looking at someone or even seeing how they spend their days, we are masters at disguise. So, since this is ME & Fibromyalgia awareness day, I felt that I should try to highlight these conditions in my blog this month and try to explain, to anyone who doesn’t fully understand and wants to know more, and at the same time bring more awareness to the silent suffering of many.
What is Fibromyalgia?
Overview
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful signals.
Symptoms often begin after an event, such as physical trauma, surgery, infection, or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety, and depression.
While there is no cure for fibromyalgia, a variety of medications can help alleviate symptoms. Exercise, relaxation, and stress-reduction measures also may help.
Symptoms
It is estimated that there are over 200 symptoms, but the primary symptoms of fibromyalgia include:
· Widespread pain. The pain associated with fibromyalgia is often described as a constant dull ache that has lasted for at least three months. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
· Sleep problems. Taking a long time to fall asleep, frequent waking and waking up still not feeling rested.
· Fatigue. People with fibromyalgia often wake up tired, even though they report sleeping for long periods of time. Sleep is often disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea.
· Cognitive difficulties. A symptom commonly referred to as "fibro fog" impairs the ability to focus, pay attention and concentrate on mental tasks, including problems with memory, concentration, and organisation.
· Emotional issues. Anxiety, sadness and depression.
Fibromyalgia often co-exists with other conditions, such as:
· Myalgic Encephalomyelitis
· Irritable bowel syndrome
· Migraine and other types of headaches
· Interstitial cystitis or painful bladder syndrome
· Temporomandibular joint disorders
· Anxiety
· Depression
· Postural tachycardia syndrome
Causes
Many researchers believe that repeated nerve stimulation causes the brain and spinal cord of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain. In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become sensitized, meaning they can overreact to painful and nonpainful signals.
There are likely many factors that lead to these changes, including:
· Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.
· Infections. Some illnesses appear to trigger or aggravate fibromyalgia.
· Physical or emotional events. Fibromyalgia can sometimes be triggered by a physical event, such as a car accident. Prolonged psychological stress may also trigger the condition. (I have also investigated adverse childhood experiences (ACE’s) and I believe that can also be a trigger, following on from discussions with others in support groups)
If you have osteoarthritis, rheumatoid arthritis, or lupus, you may be more likely to develop fibromyalgia. (I was diagnosed with rheumatoid arthritis many years after my diagnosis of fibromyalgia)
Myalgic encephalomyelitis is a disabling and complex illness.
People with ME are often not able to do their usual activities. At times, ME may confine them to bed. People with ME have overwhelming fatigue that is not improved by rest. ME may get worse after any activity, whether it’s physical or mental. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with sleep, thinking and concentrating, pain, and dizziness. People with ME may not look ill.
However,
People with ME are not able to function the same way they did before they became ill.
ME changes people’s ability to do daily tasks, like taking a shower or preparing a meal.
ME often makes it hard to keep a job, go to school, and take part in family and social life.
ME is a lifelong disability that scores poorer on quality of life than many other serious illnesses.
At least one in four ME patients is bed-or house-bound for long periods during their illness.
Anyone can get ME. While most common in people between 40 and 60 years old, the illness affects children, adolescents, and adults of all ages. Among adults, women are affected more often than men.
Causes
The exact cause for ME is not known. Factors considered to play a role in the development of this disorder include:
· Viral infections such as Epstein-Barr virus and human herpes virus 6
· Physical/emotional trauma
· Exposure to toxins
· Individuals with affected relatives might have a predisposition.
· Pre-existing psychological conditions/perfectionist personalities
· Psychological stress
· Problems with the immune system
· Hormonal imbalances
· Increasing age
· Gender: Women are more prone to the condition
There are obviously some similarities between the two, Fibro & ME, but simply explained Myalgic Encephalomyelitis causes extreme fatigue, muscle and joint pain, severe headaches and more.
The pain, fatigue, and poor sleep quality associated with both can interfere with your ability to function at home or at work. The frustration of dealing with an often-misunderstood condition can also result in depression and health-related anxiety.
Rebecca Camilleri’s story – Rebecca is 37, she contracted glandular fever when she was 17 years old, after this she never fully recovered. Prior to this she was very active, competed in all sorts of sports and activities, had a very active life just like many teenagers, but then she found that she could not perform as she had done prior to getting glandular fever, even though she kept pushing herself. Rebecca felt that her body was changing and just knew that something wasn’t right. Rebecca had many doctors’ appointments where she was told that it was just the fact that her life was changing, all in her mind, that she was just growing up and so had more responsibilities or that it was stress, and she was just looking for attention!
Initially, after she had recovered from glandular fever she wasn’t as bad as she is now, ME is progressive, but she had a realisation that something had changed. At that time, she had three jobs, she wanted to achieve many things, including starting a business. Rebecca continued to push herself but slowly she began to relinquish the things she had previously managed, cutting down on work, job by job, then hour by hour, until she could no longer work. Going out with friends became too much, she would literally take days to recover and eventually stopped going out. “Friends then stop asking you to go out and you slowly begin to lose your identity, as the first thing people ask you is what do you do for a living?” Rebecca said, this question made her feel like half a person.
At the age of 25 Rebecca woke up paralyzed, she couldn’t move her legs and couldn’t walk, she called her mum in a panic and it took hours before she could move, again she knew what she had but she also knew that she had to prove it. She spent around 7 – 10 years going back and forth to doctors to get a diagnosis, once again she was initially dismissed, claims were that she was depressed and should see a psychiatrist. After meeting countless doctors, she met a rheumatologist who diagnosed fibromyalgia but thought that there was more to it and referred her to a neurologist. The neurologist suspected it was also ME, but since there was no specific test to diagnose ME, it was just confirmed by ruling out anything else. There was nothing more to do, usual comments followed from people who didn’t understand “snap out of it,” “fight it,” and being called ‘lazy.’ All too familiar.
Rebecca continues, “living with ME you become a prisoner in your own home but also home becomes your safe haven. There is solitude and loneliness, but you need that. If you want to go out you need to plan in advance and rest for a couple of days in anticipation of the outing, there’s always a price to pay. It is a question of re-evaluating how to do things, all spontaneity is lost. It’s as though you become allergic to life, it takes all your strength to just function. In a way Covid-19 has caused less stress as most things are now online, from shopping to meetings and whilst it has been an awful time for everyone, finding a positive in it for me is that it has been a less stressful year, one of the few positives is that it has helped my health and also it has brought an awareness to others of how people that are ‘housebound’ and sufferers of Fibromyalgia and ME are affected.”
Rebecca had a need to do something about the situation though and help her feel ‘useful’ again, she still has drive and tenacity, so 8 years ago she set up a support group meeting and met other women with similar experiences and the NGO was born. It continues today with the help of Ruth, Maryrose, Ina, Mariah and Felix, as ME, CFS & Fibromyalgia Alliance Malta. Together they share a passion to help raise awareness. This month they have worked tirelessly to achieve this and called on all members and sufferers to help fight for our rights, to demand the respect to which we are all entitled.
Rebecca concludes that ME is not what you see it’s what you don’t see!
Much more is known about these conditions now and there are millions of us around the world. It has also helped that famous people who have been diagnosed with fibromyalgia have spoken out and helped spread awareness, most notably Lady Gaga and Morgan Freeman. However, I recently saw it mentioned in a film as a ‘joke’ and it made me extremely angry as you can imagine, it is no joke for the sufferers! This sort of thing does not help our situation in being believed and taken seriously. I think part of the problem here is that it is often misdiagnosed and is also an easy diagnosis, don’t know what it is? Must be fibromyalgia! This is annoying but apart from that it is dangerous as people are left without a proper diagnosis.
The whole point is that most of the time you look as though there is nothing wrong with you and because people try to carry on as much as they can, it is, as I have previously said, often misunderstood. I had a GP once who said, just by looking at me, “you don’t have fibromyalgia because you have been diagnosed with rheumatoid arthritis”, obviously completely unaware that they co-exist quite happily, side by side. Obviously, I don’t expect that every doctor knows everything, but if you don’t know then don’t judge. I never went back! The phrase ‘don’t judge a book by its cover’ springs to mind. The fact that you don’t want pity spurs you on to try and carry on as normal a life as possible. I believe that I am not as severely affected as many others, but it is still a constant battle. I am continuing to be monitored by the rheumatology department. There are various medications and its trial and error to find something that suits you, I have not found a medication that suits me, I have however built coping mechanisms into my life, which help. I use homeopathic sleeping remedies and sleep stories to help with the sleep issue (sometimes they work, sometimes they don't) and pain relief and heat packs for the pain, and I build in many rest days, which I am fortunate enough to be able to do, many are not so fortunate.
In both cases, 80-90% of sufferers are women, it begs the question that if this were the other way around and men were the main ones affected would we still be suffering in silence? I think not!
Currently in Malta we are lobbying the Government for these invisible illnesses to be recognised and treated in the same way as other disabilities, many people are really struggling unable to work and receiving little or no support. You will have possibly seen my post on Facebook earlier this month trying to raise more awareness. Many thanks go to the NGO of ME, CFS & Fibromyalgia Alliance Malta for their tireless work on this.
Today though I’m giving myself a special treat because I deserve it!
Comments