Unexpected Support

These days getting anything for nothing is an impossible task. This is especially true of hard-pressed local authorities under a Tory Government. 

So I was genuinely shocked to hear that, after my Blue Badge assessment, I had been referred to local social services for 'additional support' to enable me to stay in my own home. (This was especially shocking given the fact that my family and I have never had any intention of leaving it!!) But apparently, the occupational health assessor had decided that my level of disability warranted an intervention by the Staying Put Scheme - set up to support home owners and council tenants remain in their homes for as long as possible rather than enter sheltered housing or care homes.

So, even though I own my home, I'm eligible to access support to make living with this dreadful condition a little easier, and never one to look a gift horse in the mouth, I have.

The lady who visited me was another occupational therapist who observed me doing the everyday things I would do in my home - climbing the stairs, sitting and rising from chairs, getting in and out of bed, getting in and out of the bath / shower, using the toilet (not actually using it!!), preparing meals. She asked me about my comfort levels during each activity and, as I seem to be in a never ending flare at present, I answered as honestly as I could.

The trouble is, I can do all of the things she asked me to do in the fashion I've become accustomed to doing them - I can get in and out of my chair - with some pain, I can get up and down the stairs - with some pain, I can get on and off the toilet - with some pain, I can get in and out of the bath - with some pain etc. I didn't tell her I was in pain each time I did the activity requested but, somehow, she knew. She could see my pain. I wasn't wincing, or groaning at every activity (or, at least I don't think I was) but she identified the areas I have most difficulty with merely by observing me do them!

Two days later I got a visit from the local authority Handy-Man Scheme who installed a bannister to enable me to climb the stairs easier and a week after that the occupational therapist returned with a bath 'balloon' that inflates so I can sit and be lowered into the bath, then raised back up to get out - it's an amazing piece of kit and has made life so much easier

.
I no longer have to ask my wife to help me out, or clamour over the edge of the bath to the floor when I can't lift my legs.

I'm incredibly grateful for these things. Having struggled along for so long it's nice to be able to get a bath without the gymnastics - I used to have to get in backwards on my good leg, sit down with my bad leg over the edge of the bath and then 'man-handle' it in to the water! Now I just sit on the seat cushion, deflate it, get bathed, re-inflate it and get out - it's fantastic!.

Do You Want to be in a Book About Fibromyalgia?

We've been approached by author Cris Williams to help her source respondents for a new book she is currently writing which will seek to raise awareness of chronic pain conditions - fibro, IBS and so on - and get the message out there about how it affects each and every one of us.

The writer is looking for responses from anyone touched by Fibromyalgia - male and female patients, carers, partners, children and even doctors - to enable her to write from all perspectives.

If you're interested, or know of someone who might be willing to complete a short(ish) questionnaire, please email voices4chronicpain@gmail.com in the first instance.

For my part I have already received the questionnaire and it looks relatively straightforward from a patient's perspective - how it affects my day to day activities, how I feel about the illness etc etc.

I have also roped in my long suffering wife and her questionnaire from a partner's perspective is equally straightforward!

The questionnaires can be completed in your own time and total anonymity is guaranteed if you wish it. (Never one to shy away from these things I'm having my name in huge letters across anything used in the published tome!! - after all we must all play our part in raising awareness of this hideous condition!!)

So, please, step up, email the writer and get your, your partners, carers, childrens voices heard.

Email voices4chronicpain@gmail.com

Blood Test For Fibromyalgia

King's College, London published the following article in May 2015 which reports they were funded by Arthritis Research UK to research and develop a reliable blood test to identify fibromyalgia and potentially develop new treatments.

Fibromyalgia is common pain syndrome causing widespread muscle and bone pain, as well as fatigue and disturbed sleep. It has no obvious physical cause, is poorly understood and difficult to diagnose, treat and manage. For years there was doubt among the medical profession whether fibromyalgia actually existed – except in the minds of patients.  (Sadly, this is still true of some medical professionals!!)

There is still no specific blood test, scan or x-ray that can confirm a diagnosis of the common pain syndrome, although blood tests are often carried out to rule out other conditions.

Now scientists at King’s College London, funded by a three year grant of £171,000 from Arthritis Research UK, are hoping their latest research will lead to a reliable blood test to enable doctors to make a proper diagnosis. 

The research team will examine samples and measurements taken from 400 twin volunteers from the 13,000 Twins UK Bioresource in which one twin has chronic widespread pain, to try to identify biomarkers in the DNA associated with the condition. It will be compared with the DNA of their healthy twin, to establish differences.

“Currently there is no blood test for fibromyalgia which makes diagnosis difficult,” explained lead researcher Dr Frances Williams from the Department of Twin Research & Genetic Epidemiology. “And treatment is limited, and in many cases unsatisfactory.

“Our research will help patients in two ways. First it will contribute to our understanding of how fibromyalgia – and other chronic pain syndromes such as irritable bowel syndrome – develop – and point to pain pathways, which we may not have suspected. 

“Secondly, we hope it will lead to identification of a biomarker which we could work into a blood test. As well as enabling the condition to be diagnosed more effectively, it could help to ‘stratify’ patients into groups depending on disease severity, which will help in clinical trials of potential new treatments. It might even help us predict how the condition will progress.” 

Fibromyalgia is known to have genetic influences but there are many complicated steps between the genes which are responsible for fibromyalgia and the condition itself. The King’s team hopes to explore these steps in more detail and shed light on the underlying biology of the condition. 

Specifically, this study will focus on identifying markers on the outside of DNA that are associated with the switching on or off certain genes. DNA ‘switching’ is very important to health, as it prevents inappropriate processes from occurring in the body when they should not.

The project aims to assess the profile of DNA markers in healthy and affected twins. If there is a difference between these marker profiles on certain DNA regions associated with chronic pain onset between twins, then this DNA marker could be used as an indicator for disease.

 

Dr Natalie Carter, head of research liaison at Arthritis Research UK commented: “Fibromyalgia is notoriously difficult to diagnose and treat, partly because we know so little about why it occurs and how it progresses. Being able to diagnose it would be a major step forward, and understanding more about the influence of genetics will allow us to develop treatments specifically for people with fibromyalgia in the future.” 

I'm keeping my fingers firmly crossed that they are successful - and soon!!

You can read the full article HERE.