When I posted a link to my ME story I had no idea the huge amount of messages of support I would receive through various forms of social networking. This has really encouraged me to share a bit of my personal health issues and use this blog to raise awareness.For about the past year or so I have had to keep increasing my dosage of painkillers (particularly after my DLA medical examination), for a long time my muscle pain seemed to get worse and worse. Last year it became blatantly obvious to myself and my doctor that my symptoms, particularly my pain levels,seemed incredibly extreme for a ME/CFS patient. My doctor knew that even though it was doubtful I would find a cure, I needed a proper diagnosis. Various hospital appointments and tests revealed what I had suspected and feared, I had also developed fibromyalgia in addition to my pelvic pain and ME/CFS. Last Sunday was the beginning of fibromyalgia awareness week and I wanted to use my blog to raise awareness about this little known illness. I really hope that you, my readers, will be as welcoming and willing to learn about this condition as you were when I published my ME story. I’m going to publish a few different posts telling not just my story but those of other sufferers and the inspirational way in which they manage to cope with their condition. I was hoping to have started these posts on Sunday but in true Fibro-style I haven’t been able to manage getting any up until today so the posts will probably continue a little past Saturday. Please help raise awareness by sharing this post on Twitter, Facebook, Linked in or on your blog.
Like ME/CFS, fibromyalgia is an invisible illness and there are few physical symptoms, it isn’t necessarily easy to spot a sufferer (or fighter as most like to call themselves). In this post, I want to share what exactly fibromyalgia is. I’ve adapted this information from various patient leaflets, websites, etc.
What is fibromyalgia?
Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.
The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.
People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment. If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain.
Note: It is important to notice the distinction between the levels of suffering of Fibromyalgia patients and to recognise the different ways in which a patient can both suffer and manage their illness. Some are able to manage with a slower pace of life, others like me are confined to wheelchairs or worse still bed-bound. Put simply-everyone is different.
What causes fibromyalgia?
The actual cause of fibromyalgia has not yet been found. Over the past several years, however, research has produced some insights into this puzzling condition. For instance, it has been known that most people with fibromyalgia are deprived of deep restorative sleep. Although I sleep really deeply, no alarm can wake me up, research shows that my body never goes into deep sleep but is disturbed.
Research has identified a deficiency in Serotonin in the central nervous system coupled with a threefold increase in the neurotransmiter substance P, found in spinal fluid and which transmits pain signals.
The effect is disordered sensory processing. The brain registers pain when others might experience a slight ache or stiffness. It is hoped that more research will discover the cause and result in more effective treatment.
At the present time treatment for fibromyalgia aims at reducing pain and improving sleep. In other words, some of the symptoms are being treated, rather than the condition itself.
Over-the-counter medications may help relieve the pain of fibromyalgia but severe pain may require the expertise of a pain clinic.
Medications most often prescribed for fibromyalgia are tricyclic drugs also used to treat depression although doses for fibromyalgia are much lower than for depression. In some cases these drugs will help both sleep and pain.
However, many people find available medications either insufficient to control their symptoms or difficult to tolerate due to a high incidence of adverse effects.
Support from family, friends and other people who have fibromyalgia is extremely valuable to those who have fibromyalgia. Professional counselling may help some people to cope with this illness and to take an active part in their own treatment. For more information on medications please visit www.fmauk.org/medications
Learning to manage the condition seems, so far, to be the most successful way of dealing with fibromyalgia.
A combination of heat, rest, exercise and reducing stress can enable some people with fibromyalgia to maintain a productive life.
The best way to cope with fibromyalgia is to use a number of techniques that ease the symptoms as much as possible.
Relaxation is one technique that works really well for almost everybody with fibromyalgia. It reduces tension in the mind and body right away. The results are calming for all the symptoms, especially for the pain. Relaxation can be learned from books, tapes, videos or special courses.
Heat is important. A hot water bottle and hot baths or showers will help reduce pain and banish morning stiffness. Soaking hands and feet in hot water for a few minutes can ease their aching.
Although no particular diet has been shown to help fibromyalgia, a healthy, balanced diet is important to provide protein, vitamins and minerals. It is best to avoid or at least cut down on coffee, tea and alcohol. Some sufferers have a tendency to gain weight and this can be distressing in itself.
People with fibromyalgia can have good days and bad days. On a good day it is important to pace yourself; overdoing it may simply make matters worse. Rest is also important.
Besides pain and fatigue, fibromyalgia symptoms often 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
If you’ve read this entire post, thank you so much! I know it’s pretty long and probably not very interesting but there is no easy way to describe fibromyalgia. Look out for more posts coming soon which will give you an insight into the lives of fibro-fighters including interviews with other sufferers and “the secret language” of auto-immune and neurological disorders including fibromyalgia, ME/CFS and lupus.