Fibromyalgia awareness week


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.

Current 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.

Pharmacological management

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.

Managing Fibromyalgia

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.

Other symptoms

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
  • allergies

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.

The state is disabling the disabled


This guest post was written by my boyfriend and carer, Paul. He is only 20 but is my full time carer, I won’t go through the indignities of listing all of the things he has to do for me everyday, but trust me when I say everything, I mean every little thing. I suffer from invisible illnesses so even though many people have told us there is all sorts of help and support available, this simply isn’t true. I get some level of DLA but the real amount of care I need is not recognised by the DWP. The state will not provide the support I need, my parents are ill themselves and not in a position to care for me, and now I am lumped into the category who are thought t be unfairly claiming DLA. I may not look unwell, when my friends see me, it’s hard for them to see any difference in me, but my doctor told the DLA my medical record, how I turned up at her office screaming in pain, and in my pyjamas, but that doesn’t make any difference. The truth behind the cuts to disabled benefits is ugly, and I can’t bear to write about it myself so Paul has written a guest post telling our story in the hope you, the reader, will listen and stand up for all of those too ill to fight for the support they need.

This week the Department of Work and Pensions have announced figures finding that only 7% of incapacity benefits claimants that they have tested are ‘unfit’ to work; 17% could work with the proper support and 39% were moved to Job Seekers Allowance.  Before you sharpen your pitchforks and light the torches I urge you not to take these statistics at face value. These findings are clearly bias at best.

Firstly, consider that the government have committed themselves to cutting the cost of benefits on the state and helping get the sick back to work, giving targets not linked to any research, so for example the government intend to cut say 17 people, they will find a way to cut those 17 people. The government want reduce the Disabled Living Allowance (DLA) bill by 20%, unless they’ve discovered a universal miracle cure for people’s illnesses, it will mean that some of the most vulnerable in society will be placed in an even more precarious position. DLA is not intended for people who are not working, it is given to all disabled people in recognition that they have extra costs and difficulties in their day-to-day life, for example people whose mobility is severely restricted are able to borrow a specially adapted car so that they are able to drive, this obviously helps disabled people into work, it is not free money, it is the support urgently needed. Only those who go through the invasive, degrading and timely system are able to get it. Incapacity claimants receive a higher income than those on Job Seekers and since May 2010 the government has attacked the position of the disabled through cutting. In light of this I find it hard to see how the intentions of the DWP can be viewed as legitimate.

As a carer, I have witnessed the application of disabled benefits and medical testing first hand. I can assure you that the process is far from neutral. The application itself is ripe with questions designed to ‘trip up’ claimants. The most scandalous part, however, is with the medical tester. They are committed under exaggerating the level of an applicant’s illness. They will look at a claimant looking to prove they are fit to work. In my experience, part of the reason why my girlfriend was refused was because she smiled, we were astonished to see that in her report. Even more incredible was that the examiner noted that she seemed very awake and alert even though she was actually sleeping in the waiting room when she was called. Additionally, few people are approved for DLA because of one disability or illness- it is well known that several disabilities are needed to get approved.  As a result a large number of applications will go to appeal, even when it is obvious that they are certainly too ill to work, and 39% will be overturned. The testing is thorough and always pitted against you. The system works on the assumption that you are lying unless you can prove otherwise, even letters from doctors are ignored a lot of the time. The DWP no longer carry out tests at patient’s home, as recognised by a recent parliamentary paper, it is incredibly difficult for a lot of very ill people to even get to the medical examination and often has a negative impact on their health. For Kate, she was pushed incredibly far beyond what her body could cope with at her medical examination in October, and she has never fully recovered, her medication dosage had to be doubled. The idea that 93% of those who had gone through the process, and managed to be approved, would be fit to work and had fooled the DWP is absurd.

The figure for 36% dropping out of the process also needs to be seen in context. Do not interpret this as 36% of claimants dropped out because they don’t have a legitimate claim. A large number of applicants will be suffering from mental health problems meaning they won’t have the capacity to complete see the application through. Unassisted the process can be overwhelming for those unable to work. Social services are very over-stretched so it is not always possible for to get a social worker. I heard of one case where a man whose mind had been classified as that of a three year old  lost his DLA payments, how is sufficient care going to be provided? And who will support the disabled who are no longer able to be independent without the aids they are lent?

For the 17% that could work with sufficient support. What level of support would this require? And where is this support going to come from? If it is employers responsibility to provide the facilities then where is the encouragement to hire someone with such extensive needs? DLA was created to provide this support. And with rising levels of unemployment who will employ a disabled person who will need lots of support, at the cost of the employer?

If these figures tell us anything, it shows us the intentions of the government and the DWP to cut the cost, no matter what the consequences are. Empty statistics such as those published this week are all about justifying the cuts to the public because they know that those on these benefits are not well enough to make their voices heard. Will you stand up for them?