There must be a secret that all of us on here aren't getting!! ( me included!)
My partner pointed out there was a section in our local paper about how a 18 year old lass went from being in bed for several months with fibro and low and behold after realising IT was " all in her head" she had cognitive behaviour therapy and was cured three two months later! Hallelujah!!
She says " the hardest thing to admit was it was psycosomatic( all in the head!!). Then and only then could she move on, she had to admit it was all in her head and yippee no pain anymore!
So now my partner thinks It is all in my head , cheers " Lucy" 18 years old , very helpful , so according to Lucy we all need mental health care because fibro is not a physical illness
It doesn't say how "Lucy" was medically qualified to say such rubbish ( oops! That should read info!!!)
If she has had that much of a result then I suggest she was mis diagnosed in the first place, I am sick of reading of people saying there is a cure for fibro , via doing this and that , it makes the rest of us look bad
Eventually further down the line, at 50 years old probably not in my lifetime but they may find out what causes fibro for definately but until then people like " Lucy" should realise they do more damage than help , didn't give her address probably because a fibro linch mob may turn up at her house!!!
Damn , now it is going to take me probably a hour to climb off my soap box!!!
( metaphorically speaking!!)
Love to all ej
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electricjaws
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Stow the soapbox safely ej there is no doubt it will be needed again, the purveyors of snake oil ( CBT ) have been putting stuff like that in the media for years. Lucy does not even have to exist, she could be part of a psychologists imagined illness beliefs where they make up stories that promote their therapy's.
Agreed Hamble a coping strategy not a cure, even the most masochistic would not choose chronic pain so if there was anything with those results - the other 2.5 million Fibromites in the UK would be in the very long queue.
No wonder you are angry, what a ridiculous claim to make. I recently saw a locum doctor, who was in his late 50's I would guess, and he said to me 2 up till 10 - 15 years ago most doctors thought fibromyalgia was all in the patients head". I gently told him that many doctors still thought that. Life as a fibromite is hard enough without people like Lucy making it even harder to be taken seriously and be believed.
It is a bit like the words 'tell the truth and DWP will award you what you are entitled to'. I so wish it were so but it is totally the luck of the draw whether they believe you or not. Some people are lucky and are awarded the correct rate straight away, most of us have to fight to get anything, regardless of how honest we are.
There is no blanket catch all as we all have different symptoms, differing levels of pain, pain relief and tolerance for both the pain and the meds to combat it. Maybe one day, but not likely in my lifetime either, people who have genuine needs will be properly assessed and given the funds they need to meet those needs. I struggle to comprehend that people who work full time can get enhanced rate of PIP for both care and mobility yet people who have lost their jobs because of this illness and are not fit to work at all struggle to get the low rate of either. That is my rant over for the week, thanks to Lucy for giving me the opportunity to vent My apologies of anyone feels offended by my comments, please note that this is simply my opinion and is not aimed at anybody other than the Govt and the people who sit and dream up ways to make things harder for people with disabilities of any kind. Linda
My answer to that would be along the lines of ' well epilepsy is in your head as well and that is still a physical illness '
on saying that cbt can help some, not on curing the disease but helping us manage it. All pain nurses are taught different means to manage pain, regardless of what is causing the pain and cbt and diversional therapy do help some though not all. There isnt a 'one size fits all' unfortunately.
If you think being around good company and having a laugh does make us feel better whereas being lonely or with negative people can make use feel worse, doesn't make it a cure but the laughter is better. Does that make sense?
I went through this last week with my husband the whole ..in your head idea. The only part that's in my head is the constant pain and tmj symptoms which at times can be brutal.
Hang in there and from one fibromite to another I believe you when you say your in pain and I know its not in your head.
Hi I do not wish this pain on anyone but for those that say it's all in our heads. If Only They can feel our pain one time and they will know that it is very much real.
Interesting yet annoying EJ that this happens because it not only gives all fibromites the tag of being psychosomatic and I find it also defames the Mental Health care Service Providers who do a marvelous job helping thousands of people. I say that because it cannot be proved one way or the other whether she was cured or not and also as you say she could have been misdiagnosed to begin with.
Of course I haven't read the article itself and have spoken regarding what you have shared with us EJ
I have been a client or user of MIND services for years and CBT therapy is very good but I have never been told it would cure me but rather help reduce the pain by learning to accept myself for who I am and learn how to manage my life differently so that I can cope. It is very difficult, as I'm sure you and many of us are aware, to comes to terms with how our brains are saying 'yes I will get up, washed and dressed, have breakfast and have a walk to the shop and back but when putting it into practice it is very complex and confusing because there is something preventing us from doing anything quite the way the brain is telling us to well that's how I have experienced it and explaining it is also very hard
I do feel your anguish at how mud sticks and we all get labelled as a result but we can get past that by helping to raise awareness about the illness itself. I hope your hubby understands soon that we are all different and just because one of us was 'miraculously cured it doesn't mean that it would happen to us all. As Hamble also mentions in a reply above, these stories often appear and the same things get said everytime too.
Wishing you wellness and send you calming lavender supportive fluffies, oh! and it's ok to get on the soapbox now and again as long as we watch our language and don't bring anyone into disrepute as it would break Community Guidelines maybe we should have a 'soapbox corner'??? I think I may ask about that what do you think EJ?
I agree with us having a soap box, sian. Things like the article Electric Jaws read, plus comments from so-called friends or family, are things that rile and so need a, what could be titled, 'Soapbox Moment', and could be a healthy way to let off steam about these things, rather than letting them fester, which I think we all agree is unhealthy, especially for someone suffering from something which thrives on stress! Julie xxx
I'm with you julie63, 'a Soapbox moment' sounds a good idea to offload daft ideas we come across. As for the Lucy miracle story, I was under the impression that Jesus made a lame man walk and a blind see, did nothing to improve the lives of everyone else who was blind/ lame ! Thats why they called miracles, they are a one off event !!!
Yep we could call it " pass the soap- box " A bit like pass- a-parcel!! And nominate a different person every time to " stand on it " so to speak and have a little ol' rant!!!
Oh dear! I couldn't agree with you more if I tried! Mind you, please be careful coming down off that soap box so you do not have an accident and ''Lucy 18 years old'' could be deemed liable?
I've just stumbled across your post, sorry it took me a few days to catch up. May be because I replaced my feet with soap boxes for the many people who 'Have a cure for Fibro' or ones who insist 'It's all in your head' ....
OK here goes I'll try and keep calm hehe ....
I've said many times I have been lucky enough to to several courses. Chronic Pain Management, Chronic Fatigue Management and C.B.T courses. Never has anyone said they can cure my Fibro or CFS/ME. They do say they can help me manage my Fibro, CFS/ME. And they did and still do (To a certain amount). I'm sure I am not alone when I say when Fibro decides to have some fun and hits us with a Flare up, there is nothing I or anyone I've met who can stop it.
CBT does help manage things, giving coping mechanisms to use and I recommend it to anyone. Anything that can help is always useful. But it is NOT a cure in my opinion.
And to those who disagree I am adding a few words from the NHS website description of CBT to show anyone who thinks it's a cure. ...
"CBT is sometimes used to treat people with long-term health conditions, such as irritable bowel syndrome (IBS) and chronic fatigue syndrome (CFS). CBT cannot cure the physical symptoms of these health conditions, but it can help people cope better with their symptoms."
Well hope that wasn't too much, and I'm keeping my soap box feet on (Just in case they are needed again) hehe.
Hope today finds you all a little better than yesterday.
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My apologies of anyone feels offended by my comments, please note that this is simply my opinion and is not aimed at anybody other than the Govt and the people who sit and dream up ways to make things harder for people with disabilities of any kind. Linda
well that's how I have experienced it and explaining it is also very hard 
Esa messed with my head 
Sweats with fibro doing my head in!!!!
If its in my head then surely hypnotherapy? 
my daughter has fibro help!!!!!
not been on for a bit, but oh my God. i need to let all this out or i will self combust! i have had fibro for many years, along with
