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Fibromyalgia Awareness Day

Last post 10-21-2009, 9:32 PM by lindseym. 232 replies.
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  •  04-10-2008, 11:04 AM 687256 in reply to 687252

    Re: Fibromyalgia Awareness Day

    The "energy sugar" is D-ribose. It isn't something new - it is a supplement that many ME sufferers have taken for some years.

     It was great to see Fibromyalgia mentioned but I felt that saying that D-ribose can cure the pain of Fibromyalgia was very misleading. It was also mis-leading to say that tender points refer pain - they don't, myofascial trigger points do.

  •  04-10-2008, 11:05 AM 687258 in reply to 687252

    Re: Fibromyalgia Awareness Day

    Hi,

     There will be more info about "Corvalen" appearing on the FMA UK (National Fibromyalgia Charity Website) soon. We hope to have an article with the Doctor from Glasgow that Dr Chris mentioned.

     
    There are also some events planned for Awareness day on May 12th, so if you would like to get involved then please come and see us at www.fmauk.org.


     

  •  04-10-2008, 11:06 AM 687261 in reply to 687252

    Re: Fibromyalgia Awareness Day

    The sugar is 'Corvalan' (hope that's the correct spelling) Would be nice to know where it can be bought: Chemist/ health shop/ online
  •  04-10-2008, 11:08 AM 687262 in reply to 687252

    Re: Fibromyalgia Awareness Day

    Hi, the stuff was called Corvalen... had to write it down while it was on before I forgot. lol

    Poor Jo, Dr Chris could do with someone putting him through that much pain on TV!! Jo explained she was in pain all the time, he explained about tender points then he decided to show everyone how much it hurt. ((xx)) Jo.

     


    Gill x x

  •  04-10-2008, 11:09 AM 687263 in reply to 655115

    Re: Fibromyalgia Awareness Day

    Hi

    I havesuffered for a number of years with Fibromyalgia and only discovered what it was six months ago, and because I have allergies do not take any treatments.

    However I discovered the Bowen treatment if you go onto the web you will find out what it does and practitioners it really does work!

    I have had about 8 treatments on and off since last September and barley have any pain and can get on with my life. If I have a relapse I go back for a top up.

    Honestly everyone who is suffering from this should try it its totally drug free.

    All the best

    Stella

  •  04-10-2008, 11:10 AM 687265 in reply to 687252

    Re: Fibromyalgia Awareness Day

    It is called CORVALEN - Dietary Supplement for Energy - Only in this country 1 month, from Glasgow.

    I am going to ask about this, as I have been diagnosed with FM, 6 weeks ago, after 24 years of treatments for other symptoms, to finally now be told that it is all linked to FM, and tests came back with diagnosis of FM.

    I am looking for more GPs to start to be more aware of FM, and to get it also out there into the public, as more and more people are being diagnosed but it isnt being detected or linked till it is further down the line.

    I have joined a support group in my area, which has helped as there are ladies and men in my age group (42), and younger, as well as older, and it was good to know that I wasnt alone, and got so many tips on medications, and knowing that other people have had similar side effects from the medications as I had, but we need more out there to help others.

    The FM UK, doesnt have that much to offer us in terms of support in my area, but hopefully we can get it raised more.

    The 12 May is a good day to start and I will be definately helping my support group get the awareness delivered in our areas.

    c xx

  •  04-10-2008, 11:14 AM 687266 in reply to 151778

    Re: Fibromyalgia Awareness Day

    does anyone know what the name of the sugar what doctor chris mentioned today on the program. i have had fibromyalgia for 12 years now would like to try out any suggestions that may help my condition. susan.

  •  04-10-2008, 11:20 AM 687269 in reply to 687266

    Re: Fibromyalgia Awareness Day

    The sugar is D-ribose. Corvalen is a brand for this supplement. Although Corvalen might be new, D-ribose isn't - I have a member of my support group that has been on it for ME for some years. It hasn't been studied much in Fibromyalgia.
  •  04-10-2008, 11:21 AM 687270 in reply to 687252

    Re: Fibromyalgia Awareness Day

    Hello

    The sugar is called Corvalan.

  •  04-10-2008, 11:22 AM 687271 in reply to 687265

    Re: Fibromyalgia Awareness Day

    Unfortunatelyfibromyalgia is not understood by many doctors and although my GP advised me to go to part time work and then last year suggested I resign on ill health I am not considered to be too ill to work by the Department of Work and Pensions and have recently appealed against their gudgement that at 59+ could find a job!

    The condition seems to be less painful in a warm stressfree environment although it is impossible to go on holiday all the time. 

    Being drug sensitive then antidepressants are a no no and with little help from "the authorities" and no understanding it is a lonely world coping with such a debilitating condition. 

    Thank you to Morning TV for bringing this condition to the public, maybe employers will now understand that this is not a cop out for not working it is just impossible to get up some days and get dressed.

    Maybe a support group in Cardiff would be a good idea, and I am off to get some Corvalen today.

     

    Lindan

  •  04-10-2008, 11:36 AM 687276 in reply to 687252

    Re: Fibromyalgia Awareness Day

    Corvalen, I was lucky to have a mate record the article for me, hope this helps

     

  •  04-10-2008, 11:43 AM 687281 in reply to 687265

    Re: Fibromyalgia Awareness Day

    Glad you managed to find a support group near you, I don't have one round here unfortunately.


     


  •  04-10-2008, 11:48 AM 687283 in reply to 687271

    Re: Fibromyalgia Awareness Day

    helo everyone, at last FM was talked about BUT Dr.Chris still dont know anything about this life changing illness only by what it looked to me of what he has read off the net. over the past 4years or so i've emailed and begged him to bring this illness into open, but it went all unnoticed, i too felt for poor Jo, there she was sat in agony, yet he went and pressed, not even gentley, on her sore points, and also when was talking about that sugar tabs, he said, whoeer took it, after 3months or so WAS painfree,  so a least next Jo comes on show he'll have bit more understading, also it took us all on here to find out what poor Jo was and is going through, tells u lot about MEDICS.!! anyway must go pain shouting .

     

    Ellie

  •  04-10-2008, 11:49 AM 687284 in reply to 151778

    Re: Fibromyalgia Awareness Day

    hi i have just been diagnosed with this terrible illness was listening to dr chris this morning he mentioned a sugar that gives you energy does anyone know were to get and what the sugar was called anything is worth a go just feel exausted every day.
  •  04-10-2008, 11:57 AM 687288 in reply to 687256

    Re: Fibromyalgia Awareness Day

    It was great to see Fibro mentioned on tv. Not enough is shown about this horrific condition. What was not mentioned was the fact that most of the time we "look well"!. That poor lass went through hell when Doctor Chris kept touching her painful areas. Anyone with Fibro will have noticed that she kept putting her arms out to stop him touching her, even before he did touch her, terrified because she knew he was going to hurt her. Hopefully we'll be able to see a re-run of this interview because families, friends, employers etc need to see it. I've had Fibro for years now and I still find myself having to explain to people why I feel so ill. I had to give up my job because of it, my boss said I was a "liability". One member of staff said "do you know Tricia It's something new with you every day!" Both my mother and my sister have recently said that I only do things "when it suits me". They cannot understand how much this condition totally takes over your life---More fool them!! We would all absolutely love someone to say "We've found a cure!"  I am on a cocktail of drugs and still I'm in pain and exhausted all the time. I've been taking Green Tea Capsules and they do give me a bit more energy but only occasionally. People with Fibro would really love a big hug but it is so painful we only push away! I'm quite certain people reading this will be nodding their heads. We tend to say "Will someone,  somewhere please help me!"                                                                                                                                                                                                                              

              Wishing all sufferers out there empathy and heres hoping you have more days you can cope with xx

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