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Toby Perkins:
'Fibromyalgia sufferers experience many different kinds of symptoms. Often there is a heightened sensitivity to pain and extreme muscle stiffness. They often struggle to sleep, which exacerbates their muscular difficulties, and experience extreme fatigue. Sufferers also experience cognitive difficulties-not just headaches but problems with mental processes, known as fibro-fog, and an inability to process things as they did previously. As if those things were not enough, fibromyalgia sufferers can be struck down with irritable bowel syndrome too. A panoply of symptoms means that people have a terrible time. However, often, when those symptoms are dealt with in general practice they are masked as other conditions. Many time-consuming treatments are undergone, but they do not get to the root of things.'
Stressful experiences actually exacerbate the condition, leading to hugely damaging flare-ups
fibro-fog, extreme tiredness, extreme pain and trouble remembering things.
Fibromyalgia is thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system processes pain messages carried around the body. In many cases the condition appears to be triggered by a physically or emotionally stressful event. There is no cure.
There is no denying that it is a complex condition and there is a genuine lack of societal recognition of it. It is a truly disabling condition and must be treated and recognised as such for those seeking support from our welfare system.
Consultations undertaken by the Scottish Government show that current PIP assessments are simply not fit for purpose for those with fluctuating conditions such as fibromyalgia. Where conditions involve symptoms that fluctuate and vary, an effective assessment of illness must be flexible to take account of that.
The problem is that disability assessments in the current UK welfare system are tick-box exercises, so the answers need to be yes or no even when complex, fluctuating and distressing conditions are being assessed. The assessment of such a condition needs to be conducted in a way that is meaningful.
Ticking boxes cannot capture the distress, trauma and debilitation of such a complex condition. However, those living with this disease must subject themselves to that process in order to access essential support.
We need a welfare system that fully understands what those with this condition endure every single day as they struggle with everyday tasks that the rest of us take for granted.
Pacing yourself is the only way to manage the condition. It is a lot worse in winter than in summer and it will flare up if you over-exert yourself. You can save energy for specific occasions, for example a conference, work or an evening out, but no matter how much you plan, it can catch you out. You will be too exhausted or in too much pain to meet a deadline or go to a meeting.
Chronic pain is the main characteristic of the condition & the pain is constant, but the condition flares. The flares can last for weeks. The symptoms then are extremely severe.
Chronic pain is always associated with chronic fatigue, because sufferers cannot sleep and find themselves in a vicious cycle.
The other main condition is hypervigilance, and sensitivity to noise, light, smells, chemicals, medicines & food allergies / intolerances.
The major symptoms are:
fatigue, widespread aches, joint / muscle pain, migraines, carpal tunnel, drug resistance / intolerance, sweating, slurred speech, light sensitivity, noise sensitivity, memory loss, Cognitive dysfunction / brain fog - The loss of intellectual functions such as reasoning; memory loss; and other neurological abilities that is severe enough to interfere with daily functioning, food intolerances, irritable bowel syndrome, lower tolerance of physical activity, non-restorative sleep, hearing problems and chemical sensitivity RESULTING in confusion, anxiety & depression.
It is important to say, and to say clearly, that fibromyalgia is real, that the pain is real, and that the people who suffer from it should be believed. That should not be controversial, but I am afraid it still is. The campaign to have it recognised as a disability is good and important. It would make such a difference to many people’s lives to have that recognition.
NHS Self-help - Fibromyalgia
www.nhs.uk/conditions/fibromy...
UK Fibromyalgia
ukfibromyalgia.com/index.php
Fibromyalgia Action UK
www.fmauk.org/
Fibromyalgia Association UK
www.talkhealthpartnership.com/...
Fibromyalgia Medical Pack.pdf
www.fmauk.org/dmdocuments/Medi...
Fibromyalgia Association UK
PO Box 206, Stourbridge, West Midlands DY9 8YL
Helpline: 0845 345 2322 (10am - 4pm weekdays)
charity@fmauk.org
www.fmauk.org
#FibromyalgiaIsREAL! #ESA #PIP
22 янв 2019
