Cheltenham woman in mission to raise awareness of fibromyalgia
ALICE Reeve says more needs to be done to help sufferers of fibromyalgia.
The 34-year-old was diagnosed with the condition, which causes wide- spread musculo-skeletal pain and fatigue, 10 years ago. The illness has become so acute she has been forced to seek private treatment to complement the pain management she gets on the NHS.
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campaign: Alice Reeve, who suffers from fibromyalgia
Alice, who lives in Evesham Road, Cheltenham, is now trying to raise awareness of the condition and get more treatments available for free.
She says she has to travel to a private hospital in London to get injections of vitamins, minerals, magnesium and pain relief, which cost £150.
Awareness of fibromyalgia and treatments for the condition are due to be debated in the House of Commons tomorrow, and Alice is planning to attend.
She said: "I feel I should be able to have treatment close to home. Another part of fibromyalgia is that you are very, very tired all the time so the travelling doesn't help."
Alice hasn't been able to work in recent years because of the condition, but previously taught English abroad and completed a degree and a masters. She wants to address the stigma attached to fibromyalgia and change people's opinions.
"Because people can't see the illness they can't understand it. Many people have said to me 'get a life and go and get a job'.
"There is a lot of stigma attached to it. People see it as yuppy flu," she added.
Alice's mum Patricia Reeve, who lives with her daughter, is concerned that other families of sufferers do not understand the condition.
She said: "People who suffer need more emotional support from their families. Some families try to bury their head in the sand over it."
A spokesman for NHS Gloucester- shire said: "We are sorry to hear of the patient's illness.
"NHS Gloucestershire is always concerned with achieving the best possible health outcomes for its patients within the resources avail- able.
"There are some treatment options available through the NHS to help ease the symptoms of fibromyalgia but some patients may prefer to use complementary options.
"It is important to stress that while we do not routinely fund compl- ementary treatment for this condition at this time, we will always consider a request from a patient's doctor if they believe there to be exceptional clinical circumstances.
"NHS Gloucestershire's Review Panel takes into account information provided by the patient, GP and hospital consultant and any previous treatment and its outcome. It also takes into account guidance from NICE on any particular treatment, where relevant."
Fibromyalgia Awareness Day will be on May 12. According to the charity Fibroaction there are around two million sufferers in the UK.
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by Sandra Davies, St Helen's,Merseyside,WA10 6PJ
Tuesday, January 05 2010, 1:32PM
“I am willing to help raise awareness of Fibromyalgia,not enough is being done for us all, i want to help others as well as myself and make a stand against the ignorance,My pain is real just like everyone else with Fibromyalgia.More funds ,More research . NOW ..Blessings San xxxx”
by irene mc cullough, Northern Ireland
Thursday, August 13 2009, 9:23PM
“I would fully support anything that can help give this terribly debilitating illness recognition., and acceptance .I was diagnosed about 11 years ago when really it was almost a "dirty" word., you would not dare tell anyone as you were frowned upon..........I have struggled many times to get people to understand but it is a struggle at times..The pain is so great that I have ceased caring what other people think..We can look well and one day I can walk "some" and the next hardly even around my home. To get Fibromyalgia recognised as the awful illness it is would be a great blessing for all of us......keep up the good work”
by Jenny Hill, Northamptonshire
Tuesday, June 16 2009, 5:25PM
“I have been recently diagnosed with fibro, although the onset is thought to have followed a neck injury, from a skiing trip 4 years ago. Like many I have had a lengthy and painful road to diagnosis. I face an uncertain future, my body is in constant pain, I can't walk without support and I can't even remember the last time I did normal things like shopping or going out for coffee. I have been off work for 4 months. 'High achiever and dynamic' are words my manager previously used.. but worse, is my 11yr olds comment ' I want my old mummy back, the one who plays basketball and swims with me' and believe me, so do I!”
by Lynne Jones, Wirral
Sunday, June 14 2009, 11:26AM
“I have had Fibro for 12years, unfortunatly my GP's have not been supportive,yet they use it for every medical problem i see them about! in fact i am afraid to go see any of my GP's now!! it took me having an accident in 2007 were i split my shoulder & fractured my humours,to get any pain relief tablets: ii was given tramadol 50mg: i found they helped with my fibro pain!!l: so i've stayed on them: along with Zapain 500mg: stretching excerciies & trying to stay positive: although its not easy & not fair the way we are ostrersized for being unlucky & having this vile depressing condition, we made look well: people don't belive or realise how mu pain we suffer on a daily basis, good luck to you: and i'm always available for any fibro's to talk or help anyway i can,
Love Lynne xxxx”
by lynda, warrington
Tuesday, May 26 2009, 2:22PM
“hi we had a ad in are local paper they was great about it have had fibo for about 20 years
we have a support group here n warrington which help's us”
by Margaret Mahon, Cheltenham
Thursday, May 21 2009, 10:46PM
“Well done Alice and Diane I too have fibro, only recently diagnosed but was treated for fibrositis 40years ago.”
by Andy, Cheltenham
Monday, May 18 2009, 10:27PM
“As a member of the international business community I have to admit this certainly affects business executives probably as a consequence of too much stress in life and reckon with current credit crunch will lead to more cases being recognised. If I may I would recommend some natural remedies.
Good on you Alice, keep up the good work as it seems to be helpful to an increasingly large number of people.”
by Tracy Hicks, Godmanchester, Cambs
Monday, May 18 2009, 10:46AM
“I have suffered with Fibromyalgia for many years but was only given a positive diagnoses this February. I tis the most awful disease and the pain and sleeplessness, tiredness and all the other symptoms that come along with it are so debilitating. No-one seems to understand at all. I recently applied for DLA and was turned down becasue my GP report siad I wasnt disabled, which is so unfair as I cannot walk on some days and cannot work at all at the moment as I feel so ill all the time and am in so much pain. My consultant also said in his report that I can walk up to half a mile and I'd love to know where he got that idea from! He saw me once and has no idea of how I live my life day to day!
I feel like no-one wants to help and that my GP just doesnt want to understand this illness. It is time the Govt took notice of this horrible disease and did more to help sufferers. I have no income other than Employment and support allowance and I will soon not be entitled to even that as I live with my boyfriend and he is expected to pay all my bills when this money runs out which is so unfair. I cannot get any help with prescriptions and it just seems that I pay out endless amounts of money on medication and get very little relief.
If one of these Govt ministers had to live with this condition for just one day and suffer the excrutiating pain and tiredness they would soon be trying to sort out ways to help sufferers.
This link lists the 50 most common symptoms of Fibromyalgia http://fmsupport.org.uk/2008/04/50-signs-of-fibromyalgia it might just make people stop and think for a moment if they try to imagine living with all of these every day of your life!
The worst thing is that some days you think you are never going to make it to the end of a day and that you are truely going mad because of this stupid brain fog thing that makes everything so jumbled up in your head and prevents you from thinking properly, it is so frustrating!
I have tried to find a support group in my area but to no avail and travelling is out of the question as I am so tired all the time.
My GP has provided me with no information and anything I have managed to find out for myself via the internet he will not take heed of as he says that a lot of the information we find on the web can be misleading which is just a cop out!
This is the first article I have ever seen connected to any newspaper,so congratulations for bringing this to the publics attention finally. But why has it taken so long for the media to finally realise that there is something newsworthy in reporting the unfairness of how people with this disease are treated by the system.
Maybe if all the UK sufferers got together and presented ourselves at the House of Commons people might sit up and take notice!!”
by Stella, London
Sunday, May 17 2009, 9:34PM
“I was extremely intereted to read Alice's views and congratulate her on her struggle to bring awareness for this condition. I am not a sufferer myself but know well someone who is and the devistating effect it has had on their quality of life. It is shocking that someone should have to travel from Cheltenham to London for basic treatment.which should certainly be provided by the National Health Service. Let's hope that someone takes notice.”
by Tony Howes, London
Saturday, May 16 2009, 9:09AM
“TONY HOWES FEELS NHS A SOCIAILIST IDEA L IN 50S SHOULD SUPPORT ANY ILLNESS AS THEIR IS NO PRICE ON LIFE BUT MONEY IS BECOMING TO IMPORTANT .. IMAY BE LITTLE IDEALISTIC JOHN LENNON FAN BUT PLEASE LETS NOT PUT A PRICE ON LIFE ESPECIALLY IN ALICES CASE AS WE ALL LOVE HER”