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Fibromyalgia Action UK
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What are your thoughts on this article 'I'm a DR with Fibromyalgia! Here's what I wish people understood about it'

Hi Everyone

Please see link;

medicalhealthinfo.com/im-a-...

What do you think about the information ?

Best Wishes

Emma :)

27 Replies
oldestnewest

That was right on the money what that lady said,simple and easy to understand,just wish I knew of some of the treatments.

Thanks

Emma

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Hi Emma - welcome home! :)

Interesting. (I found it involved a lot of scrolling down). Stripping back to her core points, she did a good job. Also helped to understand the point of view from Dr.s They cant keep up with a whole host of new info. about countless conditions released every day! But also, if they are seeing more and more people in their surgeries with these symptoms it really must get to the point whereby we are by numbers alone going to have to force a re-think! And so I agree with her, patients must get more informed to inform Dr.s.

Back in the room! :) It comes back to us. But we as patients can only do so much, Dr.s need to have a more open mind. Be willing to listen, accept what we are saying to them. Have we moved on much as a result of this? Baby steps! (hurry up!) :) xx

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PREACH!

I feel a lot of Dr's act like they know everything and I'm just crazy. It makes them come across as completely ignorant and just there to push medicine and make money. I wish they know how they looked from this end. Dr's are required to do continuing education, you would think fibro would be something someone would be teaching.

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Think you will find that most are either lazy/can't be bothered or just don't know/have knowledge!

As i asked Quack once why my body wasn't producing synovial fluid(it's what lubricates the joints so stops arthritis in joints as wear lining away)

his answer? you shouldn't be asking me questions like that!

Hospitals answer to that =he didn't have a clue!

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I'm sorry aren't you a Dr? I think it would've been aren't not to say that.

That's horrible. It really is sad that these people are considered Drs. Cause if he was a dr and didn't know he should've said, let's find out why, and tried to help you figure it out. At least by my definition of a Dr, that's what should have been said.

I'm sorry the "dr" said that to you. You deserve an award for not trashing the place or at least refusing to pay for inadequate service. Wouldn't that be great. :)

Thanks.

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Hi EMMA , wouldn't it be nice if we had more Drs like this, I don't mean to wish the illness on them. But the fact that she totally understands. Thank you for this. X

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Hi Emma,

Yes I came across her work too recently. It sounds like it might be a useful book. I'm just disappointed when people, especially doctors, don't make this information available for nothing. It's so easy to get the information out there now. I understand that she has to make a living and it's a lot of work to write a book, but this is being sold for £17.50 (paperback). That is a lot of money for some people to find. It makes me question whether it's a money-making exercise for her, or a book that could make a difference. My reason for sounding so cynical (sorry for that guys) is that being a researcher (well before fibro stopped me working), my aim was to get information out there by publishing. I wasn't expecting payment for it, well other than my salary.

There is an excerpt of her book on the Amazon.com website, which was interesting. She mentions having allergy tests done (for foods and chemicals), which again can be expensive if not done on the NHS. I'm finding I'm becoming intolerant to more and more things as time goes by (recently it's been fish for goodness sake). This is something I have been thinking about getting done for a while, depending on cost. She seems to have benefitted from doing this.

I'm still debating whether it's worth getting the Kindle edition, which is £7.76. I have various books on fibromyalgia - none have changed my life so far. Still I haven't read this one, so who knows. Be interesting to know if anyone on the forum has read it and whether they would endorse it.

Again, sorry if I sound a bit negative. I just wish 'helping people' wasn't also about making money.

Pip

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Hi pip_r

Thank You for your reply

I can understand your cynical views, now you have explained she has a book for sale. I was unaware of this !

I just saw a Tweet and thought it might be of interest. I agree with you if she really wanted to help people with Fibromyalgia she would be trying harder to provide free information in my opinion, especially now you have crowd fnding site etc.

Regarding if the book is worth buying, I suppose it can only depend on the reviews it has by others that have taken the step to purchase it, hoping that the reviews are real people ! You are right to be cynical as even comments of reviews on websites information is coming to light that they could be set up ! Plus Facebook pages 'LIKES' can be bought plus regular 'click farms' are in operation to make some pages look like they are a popular company. World's gone crazy !

If I find out anymore about the book, I'll let you know x

Best Wishes

Emma :)

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Yes, I'd be interested to hear, thanks. Certainly interesting to see what everyone else thinks too - thanks for putting it up.

Just for information her name is Dr Ginevra Liptan. Her book has been recently published, so that may be why we're seeing articles about her work at the moment.

The reviews on Amazon UK and US seem positive, but as you say, you cannot now always trust these ;)

Cheers Emma,

Pip

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If you are becoming intolerant to fish have you looked into histamine intolerances, you may find some very useful information there?

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Hi Joyia

Thanks for the tip, I'll have a look. There's certainly something going on.

Cheers,

Pip

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Hi pip, I recently bought this through Amazon for £6 + £2 odd for delivery. I went onto the site then scrolled down to new and used and clicked on it. This gives you a bunch of different company's and prices as it says new and used, also gives description of state of book.

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Hi. That's not too bad. What did you think of the book?

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Haven't read much yet as migraines this week but it does seem to rely heavily on medical testing that they have in USA. I don't know if a) we have same tests.

b) Docs would be willing to spend the money on us to do them.

Only advice I found on diet was to test for food sensitivities, ( not allergies). I thought there would be more information along these lines, but then she is a Dr. She also says if asked she cured herself of fibro, but also that she still has it as it is incurable ?!?

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Mmmm, right... well I think I'll maybe give it a miss. Doesn't sound like there is anything new, just her 'journey' of how to manage fibro. I think while there might be some things of interest, this seems to be a condition that we have to find our own, individual ways to manage. Some things are similar, eg. learning to pace, etc, but medications that work and any food intolerances suffered are different for all. Thanks for the info.

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Emma I have left a write up about my experiences with doctors on fibro, hope you can read it!

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Hi NurseGladys123

Thank You for your reply

Is this on another post? Does the DR have Fibromyalgia like this one claims to ?

Emma :)

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in response to this doctors page I have done a write up, on the link if it l;ets you read it.

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Aw I get it now ! No comments to read yet but maybe because they read and approve them first :)

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I have given permission for this to be "published"

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For me, the last paragraph of section 5 really sums up how important it is for us to be positive and learn to live our lives in such a way as to minimise and control our symptoms.

There is no "magic cure" at present, but there are ways we can manage our condition by "pacing" ,reducing stress levels, taking a little exercise when able, eating regularly and healthily and learning to say NO when others expect too much from us. We have to become "expert patients" and realise that doctors cannot always provide us with the definitive answer, in fact we probably know more about the condition (living with it 24/7) than they do.

Fibromyalgia affects so many body systems, and is so complex that we find it so difficult to explain to our doctors and friends, the list of symptoms seems endless. No wonder the doctors find it so difficult to understand, so rather than trying to treat the symptoms individually, we need to treat our bodies as a whole. In fact, it is so difficult to try and put into words what living in our bodies is really like, how can we possibly expect the doctors to comprehend. We have to learn to become slightly selfish and live a life style that keeps our bodies "happy".

It has taken me many years to make adjustments to my life to keep my symptoms to a minimum, but it is an on going process which continues on a daily basis. Hopefully this makes sense to you!! Xxx

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Yes! I agree completely. I really don't think Dr's can do anything, except run tests we request and pain relief if need be.

We have to listen to our individual selves and find what helps us. It is unfortunate that we have to work so hard but that is the cards we hold and we have to make the most of it. And that will be a bit of a selfish life style; which I've always been a hermit anyways, nothing new for my friends. :)

But I do wish I didn't have to focus so much on myself and focus more on kids and passions.

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That was great. I shared it with several people I know.

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Hi, I did not find anything new in what she wrote. It was all the basic stuff i'm sure many of us long term suffers have ready many many times over the years. I felt it was just another one jumping on the fibro band wagon to sell Yet another book. And to be honest I have ready many get better fibro books than what she seems to be charging all that money for. Sorry guys a thumbs down from me. xx

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Hi Emma

Thank you so much for that it was very interesting. Despite her book, I do agree with a great deal of what she is saying, as I also think an holistic approach is best? I also agree with stress increasing pain levels. I use to have an exceedingly stressful career and then my Fibro came along. Since I have stopped that line of work my Fibro has decreased exponentially?

All my hopes and dreams for you

Ken x :)

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I believe the best attitude is to fully realise you are so much more than fibromyalgia. I try to live my life by pacing and placing, by that I mean sensible resting periods and making whatever I want or need to do in life that day the priority in my mind, fibro gets placed on the back burner. This does not mean I do not feel pain, I do but when my priorities are elsewhere the pain does not take over, I refuse to let it. If it becomes very uncomfortable I know I need to move around, stretch some joints maybe, get some fresh air even if it's just sniffing the air outside my front door if applicable. Practising Mindfulness means focusing on thoughts and abandoning them if they are just ruminations, which many thoughts are. It is amazing what you can do with skilful thinking.

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Book marked it will "Digest" it fully later when my brain has time?

One thing many don't acknowledge/bring out/say etc etc are that there are some many others things that are associated/in partnership? etc with Fibro!

Now some could have been there before or cause a susceptibility to Fibro i bit like leaving door unlocked so like with family link genetics lead!

As we have this in my family causing issues with many!.

The other side is having had Fibro for long while/longer it goes on etc you collect it because of the effects Fibro has had on your body system sleep problems being one!

Look into the effects on your health with sleep deprivation not used as a torture method for no reason! as the end result is death! one of the thing there finding is that many that years back like me worked/drove etc round the clock become ill when get older as when young think phah lets go so in your 20's the brain is very active/healthy etc still growing/regenerating at a good rate but it's when young doing things that as we know comes back in later life to haunt you!.

Like fallen off/over something/broke this&that now in your 50's plus you think hell wish i hadn't done that back then as hurts now!.

It's the same with this so as the brain isn't refreshed with decent sleep patterns it looses it's ability to protect us as not able to read signs from organs/cross communicate with them so they become unbalanced so illnesses creep in.

So with things like Fibro you become susceptible to other illnesses or other things join it like CFS for one but you get IBS back&front and a whole host of other things that become a problem because of Fibro where as on there own you could probably deal with them ok?

But the Fibro increases there magnitude by it's effects on your health management as our bodies have a great way of self healing which Fibro stands in the way and says "NO"!.

So it's not only the Fibro that is causing the issues but also the other things like with me Raynauds that can be stand alone but also comes as a "side order" with things like Fibro/lupus and other things.

So that's just a few there's many more that Fibro is either the "key" or gives them the key to do more.

Plus there's also the hormone issues that it effects as for one from what ive worked out is that i'm pretty sure it's within the lutenising hormone that how Fibro works on us?

They do know that hormones play a big part in it USA/OZ are years ahead on it here one reason the did that study @ St John Radcliff hospital while back on females!.

So to me they need to find/workout what you have & what other things that you have associated around likes of Fibro then they can treat you properly because treating one thing won't treat it properly so just returns or won't go as what made it become a problem in the first place is still there so an underlying cause!.

A bit like trying to heat the house but most of the windows are still open so once turn heat off/down back to freezing again!.

Plus one of the things they say with likes of Fibro is that it won't kill you so not quite a "decease" but like many other deceases like Cancers/AIDS/MS etc etc plus even death it's self it's not them that actually kill you but likes of pneumonia/heart attacks and other things because they have weakened the body/immune system so much that it can't hold on/fight back so probably one reason it's been reclassified in the USA for one is that they realised this reason with impact on quality of life for one but also the effects on the brain and other organs!.

Hope that helps!

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