This week will see charity events across the country organised by the Fibromyalgia Association UK to raise funds and awareness for this mysterious disease. Be on the lookout for black and yellow polkadot ribbons, the emblem of the awareness event this year.
Whilst researching this article it immediately became apparent that Fibromyalgia isn’t all that rare. I myself knew already of someone who has recently been diagnosed with the condition and they in turn were able to tell me of someone they knew that also had it. The official statistics indicate that as much of 4% of the population my be suffering with Fibromyalgia, a higher figure than rhematoid arthritis.
Despite being a fairly new term Fibromyalgia (FM) isn’t at all new. Studies in the 19th century hint at occurrences of the disease, but the term Fibromyalgia itself was not in use until the 1970s. It’s apparent that one reason for this is that Doctors have major problems in diagnosing the disease. The condition cannot be identified by standard lab or X-ray tests. FM also displays similar symptoms to other conditions such as Chronic Fatigue Syndrome and (in the case of the person I know) Sleep Apnea. Furthermore the causes of FM are still unknown.
So what is Fibromyalgia? The short answer is that FM describes a condition of chronic widespread muscular pain and tiredness. Records show that the levels of pain can fluctuate and areas of pain may move around the body. Fatigue experienced by FM sufferers can also vary from general lethargy to chronic exhaustion. People can also feel a sudden complete drain of energy.
Further symptoms include;
- unrefreshing sleep – waking up tired and stiff
- headaches – ranging from ordinary types to migraine
- irritable bowel – alternating diarrhoea and constipation, sometimes accompanied by gas in the abdomen or nausea
- cognitive disturbances including lack of concentration, temporary memory impairment and word mix up
- clumsiness and dizziness
- sensitivity to changes in the weather and to noise, bright lights, smoke and other environmental factors
FM can often develop after a traumatic event which acts as a trigger. This may be physical (such as a car accident or operation) or psychological (such as an emotional event). For some though there is no apparent measurable trigger, adding to the difficulty of diagnosis.
Research has been able to find that FM sufferers display a deficiency of serotonin in the central nervous system and a heavy increase in the neurotransmitter substance P which the body uses to send pain signals. The outcome of these imbalances is augmented sensory processing, where a normal brain might register a slight ache or stiffness, the FM sufferer receives a largely amplified signal registering as acute pain.
Despite this insight the Medical Establishment has yet to find a cure. Instead prescribed treatments aim at combating the symptoms.
In the case of my friend, who kindly agreed to let me interview her, the current medications she has been perscribed are amitriptyline, gabapentin and tramadol. All three are aimed at treating the pain, which she described to me as a shooting sensation. She reports that these drugs do not stop the pain completely and I think herein lies an argument for more quality research into FM.
Given that my interviewee is a mother of two and still now holds down a day job it worries me specifically that she should be prescribed tramadol. Despite being a man-made opiate, tramadol still carries some risk of the user becoming physically dependant on the drug. All this risk for something which doesn’t fully combat the pain?
Another issue raised in the interview is the way in which Doctors have dealt with her diagnosis. Despite having the symptoms of FM for considerably longer she herself was not officially diagnosed until six months ago. Previously she was made to feel that the disease was all in the mind.
Given that Doctors have a hard time of accurately diagnosing FM I can empathise to a degree here. This said however the continual effect of FM has a marked impact on people’s lives. Our Interviewee for instance has been forced to go part time at work. Fortunately she has received understanding from her management who are able to accommodate her on reduced hours. Sadly I believe not all sufferers will be as lucky and may be forced to deal with the anxiety of redundancy on top of the distressing symptoms of FM.
In her own efforts to maintain an active life our interviewee regularly drinks coffee and energy drinks but is aware of the ‘crashes’ which can follow the use of such things, which in turn can lead to deeper states of fatigue.
Whilst she reports that she’ll have no trouble sleeping she doesn’t feel rested when she wakes. Driven to find out more about FM our interviewee mentioned this book;
which she has found very helpful especially on the issue of defining FM. In her discourse Liptan expands the idea that FM sees the body in a continual ‘fight or flight’ state. This seems to strike a chord given the possibilities of a triggering factor and the inability to sleep restfully. It certainly seems that knowing this is helpful and builds in-roads to the possibility of a cure.
If medical science follows Liptan’s assertions then the focus should be on finding a way to reset or reverse the body’s underlying state rather than staving-off the effects with powerful drugs.
Whilst work is done to find a cure there remains a clear indication that Doctors need to be better equipped to spot FM in their patients. Armed with a solid diagnosis of FM, sufferers will be more able to come to terms with the condition and to adjust their lives accordingly.
Similarly raising general public awareness towards FM is crucial to acceptance of the disease. With greater understanding we’re in a better position to provide support to FM sufferers both in the work place and at home.
You can help the cause. Please visit the Fibromyalgia Association UK’s just giving page below;
to make donations or join in on fundraising events. Your involvement can make all the difference and could hopefully lead one day to solving the mystery of Fibromyalgia.