Cheltenham woman in mission to raise awareness of fibromyalgia

From the FMS Global News Desk of Jeanne Hambleton (UK)
Courtesy thisisgloucestershire.co.uk/news/

Monday, May 04, 2009

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.

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.

EDITOR’S NOTE:To view of the May 5 historic fibromyalgia debate log on to
http://www.fibromyalgia-associationuk.org/content/view/385/1/

To read it try: https://fmsglobalnews.wordpress.com/2009/05/09/mps-call-for-fibromyalgia-education-for-doctors-in-first-ever-fms-debate-in-uk-parliament/

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 does not help.”

Alice has not 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 cannot see the illness they cannot 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 Gloucestershire 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 available.

“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 complementary 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.”

COMMENTS (26)

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!!
Tracy Hicks, Godmanchester, Cambs
commented on 18-May-2009 11:46

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.
Stella, London
commented on 17-May-2009 22:34

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
Tony Howes, London
commented on 16-May-2009 10:09

Unless someone famous get FMS , Media and others don’t care. We need to push , we deserve a cure and soild treatment, Fighting with insurace companys to get medications to make my life livable are only fair I am a human being and I suffer. Why won’t Oprah set up and do a show on FMS ?
Robin Smith, California
commented on 15-May-2009 06:35

It took me around 22 years to get a diagnosis, I saw Dr after Dr as a child and most said it was all in my head, one sent me to Physio with a covering letter saying to humor me.

It was 2007 when I had knee surgery again and I was left unable to bend or straighten the knee afterwards my Dr sent me to see a Pain Specialist thinking that I had Regional Pain Disorder.

When I got to the Clinic I was asked to fill out a questionnaire so I did and waited, while I was waiting to see the Dr he was sitting in his office reading my notes all of them, and reading my answers to the questionnaire, after 20 mins or so he called me in, he asked me key questions then told me that in no uncertain terms that I have Fibromyalgia, I did not know weather to kiss hug or cry, after so long of not 1 single person in the medical profession since I was 12 years old believed me or seemed to care to find out why my body hurt so much there was this one Dr who now I felt was my new best friend, finally to have something to say to people when they ask what have you done to yourself when I walk with crutches, and funny looks when people see me using a scooter when I am shopping and parking in disabled bays people thinking to themselves she doesn’t look like she deserves that bay. I had a response I could finally say what I had, I don’t want sympathy although some would be nice sometimes, I want understanding not odd looks and comments about parking and using the scooter.

FMAUK have helped me so much I go to group meetings and talk to fellow sufferers which is a great help especially as they are the only people who really understand what it is like to be us. I am lucky with my Husband and Children who do understand and my Family who have always stood by me and knew I was hurting and were as frustrated as me not knowing why.

TREAT THE PATIENT NOT THE INJURY OR REASON YOU WERE SENT.

That is why I finally got diagnosed, My pain Dr treated me not just my knee which was why I was sent to him, if all medical personal think this way we would all be so much better off.

FIBROMYALGIA needs to be more commonly known in the medical profession to stop someone else having to wait 22 years to get diagnosed.
Jaki, Wirral
commented on 14-May-2009 12:32

i have had f.m. for now going on 11 years,the struggle to find out what was wrong ith me took many years and seeing many drs…I now still live with the pain , the not sleeping all nite,and the parts of my body that does not always work right, to some points i just don’t go to far from home ,i miss out on family dues at times because i just don’t have the energy to attend.Some days i have feeling of not even wanting to talk to anyone ,I do have a very stronge support team of family and friends but still some days i feel like if i say again i dont feel well i feel like i am weak .It will always be a up hill battle.Even foods can cause problems for me so again i have to watch what i eat.And if i have to run across a dr that still in this day and age that says there is no such thing ,i think to myself then walk in my shoes for a day .Again in Canada it is a fight to get any kind of disablity for f.m.they tell you if you are not in a wheel chair you are not looked at but my question to that is who will hire someone that some days can barly get out of bed or that your feel sick or am so tired from not sleeping the nite before that there is no way you can hold down a job.Let alone some days of even getting dressed as again cloths can feel very tight on a person let alone the energy to get dressed.yes i know there is meds out there that work but again not for everyone,as some meds make a person even feel sicker. if i had one wish that would be that some day they will find a cure for everyone because again everyone comes by this f.m in more then one way ,any were from a car accident to something bad happened in thier life ,also to much stress again a big part of a very big no no for anyone with f.m. yet we live in a very stressfull world.It is not only very hard on the people that live with f.m. but also our loved ones watching us go throw this .So for anyone living with f.m. i wish you a pain free day .and i tell anyone i talk to read up on anything you can find about f.m.and if you have a dr that does know about f.m. talk to him about all your feeling and about any info you run across.and don’t give up on finding a dr that knows about f.m it is real it is not in your head .thank you for listening to what i have had to say and i hope i have been of some help.
louise chandler, canada
commented on 14-May-2009 04:21

I was diagnosed with fibromyalgia in 2005. I have progressively gotten worse since then. I suffer daily with this debilitating disease, and it is a full-time job just to manage the pain, and all the symptoms that goes with this illness. I hardly ever sleep…and I suffer terribly with concentration(fibro fog). Thank you Alice, for getting the word out. This is a real illness people suffer from, I know…because I am one of them. Fibromyalgia needs to be taken seriously, treated just like every other debilitating disease out there. May 12, 2009 was “National Fibromyagia Awareness Day”. I hope many were educated, and will continue to be educated on this invisible illness.
Janet, North America
commented on 13-May-2009 23:00

I was diagnosed with Fibromyalgia a year and a half ago. I have had symtoms for years. I can barely walk on somedays. The pain in my back and legs makes me cry everyday. My doc has faxed a note to Michigan Works that I can do everything and I have no restrictions. I’m clearly misunderstood. I don’t know why my doc would do this to me. Just because you can’t see it doesn’t mean that it’s not there. We need more docs to understand this diease. The pain is real and it never goes away! I’m so sad and very depressed.
Sandra Busch, Michigan
commented on 13-May-2009 13:45

I have fibromyalgia and have had it for a few years now but was just diagnosed a year and a half ago. My doc just faxed a note to Michigan Works that I have no restrictions and can do anything. The pain I feel everyday sometimes makes me not able to walk. I cry alot and am very depressed. I know that the pain is real. Why did my doc not understand? Why would he put me through this? I’m very sad and misunderstood.
Sandy Busch, Michigan
commented on 13-May-2009 13:40

It is always good when people are aware of illnesses such as this that are often misinterpreted. Sufferers should get more sympathy and therefore more help
angela edwards, Carmarthenshire
commented on 13-May-2009 10:56

It took me 3 years to get a diagnosis of FM and I had to ask fro a referral to a rheumatologist myself. If I hadn’t I’d still be none the wiser. I say a neurologist a few times but he couldn’t find anything wrong so threw me back out into an uncaring system instead of suggesting I see someone else. I was told not to ask to see him again as there wasn’t anything wrong.

A bit more education and understanding in the NHS would go a long way to helping people. We are made to believe it’s all in our heads or down to depression… well you’d be depressed if you were in pain 24/7!

Doctor’s packs with information for your GP can be obtained from FMA UK a registered charity trying to get the word out to as many people as possible.
Gill, S Wales
commented on 13-May-2009 00:46

I have had FMS for about 16 years but was only diagnosed 10 years ago. I had never heard of it, and neither had any one else I knew. 10 years later nothing seams to have changed much. I haven’t worked for 9 years and struggle to get through the day. i rely on my parents for many things and between sleeping / resting and attempting life’s esstentials i don’t have much time or energy for much else. I take amitrypline and fluxotine and would love to be well enough to work again and not rely on benefits. My doctor say that we don’t know what causes it so how can we treat it? More research please, and more publicity – i haven’t seen anything on TV today about Fibromyalgia Awareness Day.
Karen, Worcester
commented on 12-May-2009 19:26

I am 18 years old and have been diagnosed with Fibromyalgia for a while now. Having this illness means i have to use crutches on bad days, I can never go out with friends becauuse i’m too tired, my college work suffers too, and yet we are still not getting recognised as we should be. I’m all for what FibroAction is doing, i think everyone should be aware how debilitating this condition is.
Emma, Lincolnshire
commented on 12-May-2009 18:08

I emailed our local news programme, but didnt even get a mention or indeed a reply. My husband emailed the World Community Grid and the reply from them was “as its not a fatal illness they cannot research it” ok so we all know we wont die from it, but our whole life chages dramatically because of it. Its like being thrown on the scrapheap of life
Anne Walker, Glasgow
commented on 12-May-2009 17:36

At nearly 49, but young for my age, I have a long memory and remember the struggle that sufferers of MS and ME had to get the severity and extent of the conditions to be recognised by the powers that be as being genuine and not figments of the imagination. When reading about fibromyalgia. I read the same kind of stories of discrimination, misunderstanding and to some extent ignorance from the very bodies set up to care for sufferers namely the NHS and H. M. Gov as those writen in the 1970¿s about MS and later about ME. It seems that nothing realy changes, in that the NHS and H. M. Gov have to be dragged kicking and screaming into accepting newly identified and dibilitating conditions that are recognised in other countries. And, possibly the only way to make the NHS and H. M. Gov to see reason is to follow the example of past campains and raise the publics awareness of the condition and keep it there untill that little light in the minds of a ministers turns on and they start singing ¿I¿ve seen the light¿, but until then don¿t hold your breath but keep up the good work.
Keith Sharpe, Basildon
commented on 12-May-2009 15:00

I had heard of this illnes, but until i read your article, like many other people,i was unaware of the severity of this horrendous condition .
Thank you for opening my eyes to the amount of suffering and loss of normal life that these people have to endure.
Gillian Parkes, Moreton in Marsh, Glos.
commented on 12-May-2009 12:05

Fibro is a horrendous life changing illness. i am 22 i cannot work i recently married. no one seems to know what top offer in terms of pain relief. i have to use a stick to walk. what my future holds i have no idea but it doesnt look that bright at the moment. we need all the help we can get to raise awareness of this terrible life changing disease
laura, yorkshire
commented on 12-May-2009 08:43

Many thanks to this newspaper for highlighting this illness. This is an illness of the 21st Century, which most of the population do not know about. Perhaps we could have more tolerance and compassion.
Annie, Cheltenham
commented on 11-May-2009 21:48

I was dignosed in 2007 as having fibro, after about 6 years of lots and lots of tests that all came back normal. I felt like a hypochondriac and was treated like one at times, simply because this is an invisible illness and does not show up in routine tests. My last GP was an idiot who obviously was a non-believer and who refused to prescribed the only mild medication I was taking. I am in pain 24 hours a day, every day of the year, some days I can barely move. Yet the struggle thousands of us have to get any kind of DLA benefit and which is usually refused! This IS a REAL disability, if we had M.S. (no offence to MS sufferer’s) we would be able to access more benefits, more tretments and more understanding so much easier. Life is a struggle as it is, yet we are made to struggle by our own government and health system to access a diagnosis and suitable treatment, as well as the benefits.

I have also tried to raise the awareness for Fibro Day (12th May) by emailing local TV and radio, local newspapers, GMTV, but nobody has returned an email, which just goes to show how ignorant and unsympatheitc and plain disinterested a lot of this country really is. We need this to be recognised by ALL medical professions, ALL government and health departments, and as many people locally and nationally as possible.

Rant over, I’m now going back to bed before I have to pick my children up from school, as if I don’t, I will be ILL for some time and unable to even cook for them, Thank god I have a lovely partner who does understand!
Linda, Merseyside
commented on 11-May-2009 13:13

As the Operations Director of an International Medical Assistance Company, as well a Travel Insurer for people suffering from medical conditions I would just like to express my support for this campaign. All the more so given that my wife has recently been diagnosed with Fibromyalgia.

MIA Online already insures numerous Fibromy’ patients and we are aware of how debilitaing it can be.
Sir Jan Dalrymple, Rayleigh
commented on 11-May-2009 10:01

I was diagnosed with FM in 1992. I have very limited use of left side now and am constantly in pain. I actually use a wheelchair for distances and also have orthotic shoes and crutches. I do not allow this to be my life but can completely understand the frustration when people say ‘you’re just being lazy’ or ‘we all get tired’.
Go to the UK Forum for FM, it is a great release and a chance to chat to fellow sufferes who will never say those things.

It’s hard to have self belief when you want to detract from your physical disabilities and, of course, it alters your everyday routine but we should all support research into it, if only for the future sufferers.
I work part time which is a struggle but I won’t give it up. I am also a single parent of an 11 year old but he is a fantastic support for me, considering it changed his life as well.
Elaine, Tewkesbury
commented on 10-May-2009 15:23

I am 43 and have recently been diagnosed with fibro but have had symptoms for years. I am taking duloxetine and gabapentin for pain relief but find this still leaves me with plenty of pain.

Fatigue is the main problem. I’ve had to give up employment, Open University study, voluntary work and most of my social life. I now struggle to cook and cannot cope with the housework.

The future looks very bleak. There is no hope of returning to full time work but I do not want to spend the rest of my life living off benefits. The pay is lousey and there are no days off from pain and fatigue.
Hazel, Evesham
commented on 08-May-2009 07:45

I had post-viral fatigue after a bout of tonsilitis a year ago January. I have now been diagnosed with Fibromyalgia (Chronic Fatigue Syndrome) – my biggest concern is the fuzzy brain (or brain fog) – I have just been referred to the CFS clinic that operates out of Bristol at more local clinics and am awaiting an appointment – just some advice on managing the condition would be really helpful. The pain, especially in my feet and legs is really uncomfortable – I do work, and am taking part in the Sue Ryder Midnight Walk this coming Saturday – am determined this condition will not take over my life completely. My friends will stay with me until I do the walk. They are being very supportive. I feel for anyone who has the same condition, and look forward to seeing some progress in its more formal recognition.
Tracy, Cheltenham
commented on 06-May-2009 18:47

I was diagnosed in December last year with Fibro as my partner calls it, untill then i had never heard of it but have since made contact with another sufferer.As i am on strong painkillers for my back my Dr. has since put me on anatriptoline which i have found helps with it. But i can get it for three or four days a week then have two or three days without it . It seems a cycle that i have told myself to accept it,but as i’m on other meds and painkillers i find wheni got the pain i just found the best position on the sofa and sleep alot.I can wake up in the morning and feel fine then an hour or so later feel ILL.Before i was diagnosed with Fibro my Dr. sent me to the hospital to be tested for Rhumatoid Arthritis the hospital Dr dagnosed the fibro,as i sai put me on Anatriptoline and gave me a booklet about fibro and sent me home with another appointment to see him in 6mths time
bob, Hertfordshire
commented on 04-May-2009 14:25

I too have suffered from this condition for years. Being in constant pain 24 hours a day is exhausting and depressing. Sleep is in short supply as it is impossible to get comfy. If one more person tells me I “look well” I may well scream!! Do magnesium injections help? Many thanks to Alice for taking up the cause. I wish her everything I wish myself.
victoria, cheltenham
commented on 04-May-2009 13:17

The use of local anaesthetic injected intramuscularly as pain relief and the use of injected vitamins and minerals to counteract deficiencies in someone with reduced absorption capabilities is not a complementary therapy.

Using drugs to treat pain is the remit of traditional medicine. Treating vitamin and mineral deficiencies is also part of traditional medicine.
Lindsey Middlemiss, Berkshire
commented on 04-May-2009 12:39

(Copyright Harmsworth Newspaper Printing
http://www.thisisgloucestershire.co.uk/news/Cheltenham-woman-mission-raise-awareness-fibromyalgia/article-958681-detail/article.html?cacheBust=7vk40nSNjqBF&success=true#community)

My thanks to Sue SB for bringing this story to my attention. It is good to share. I wonder how many more fibromyalgia patients have been refused support by the GP when applying for benefits. It is a pity they cannot try having this invisible disability for a week to see how it really feels and that IT IS REAL!

FOR MORE FIBROMYALGIA STORIES SEE: http://jeannehambleton77.wordpress.com

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About jeanne hambleton

Journalist-wordsmith, former reporter, columnist, film critic, editor, Town Clerk and then fibromite and eventer with 5 conferences done and dusted. Interested in all health and well being issues, passionate about research to find a cure and cause for fibromyalgia. Member LinkedIn. Worked for 4 years with FMA UK as Regional Coordinator for SW and SE,and Chair for FMS SAS the Sussex and Surrey FM umbrella charity and Chair Folly Pogs Fibromyalgia Research UK - finding funding for our "cause for a cure" and President and co ordinator of National FM Conferences. Just finished last national annual Fibromyalgia Conference Weekend. This was another success with speakers from the States . Next year's conference in Chichester Park Hotel, West Sussex, will be April 24/27 2015 and bookings are coming in from those who raved about the event every year. I am very busy but happy to produce articles for publication. News Editor of FMS Global News on line but a bit behind due to conference. A workaholic beyond redemption! The future - who knows? Open to offers with payment. Versatile and looking for a regular paid column - you call the tune and I will play the pipes.
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