Doctors: Hello Everyone... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Doctors

Mdaisy profile image
9 Replies

Hello Everyone,

Well the poll is still ongoing and the results are encouraging in my personal opinion.

It looks as so many of you are seeing GP's that have a reasonable knowledge of Fibromyalgia and I did expect the results to be different I must say.

Let's get more Awareness out to the GP Surgeries that are lacking the relevant information.Local Fibromyalgia Support Groups & FibroAction can work together to raise awareness & promote their group with FibroAction information posters. These posters with a business card space for your local support group details can be placed in GP Surgeries, CAB and local hospitals. Support Groups can email: info@fibroaction.org for these posters to be sent out to them for this purpose.

Some members have commented on the poll and mentioned their GP to be understanding , helpful and having fairly good knowledge of Fibro in your opinion. With their permission, why not see the GP listed in our Fibro Friendly Healthcare Professionals section?

I remember those days awaiting diagnosis, floundering and trying to find someone to listen. Dare I say, I was desperate indeed to get some treatment and for someone to not sound so demeaning when they spoke to me. Feeling upset in such a vulnerable state being so poorly with the pain & fatigue, feeling lack of strength to fight the system anymore (6 years ago, purely my own experience)

Well it seems now the information might be slowly getting through, lets help others who may be floundering to find the GP's in their area that many of you have identified.

Please email: info@fibroaction.org and send us the details of Healthcare Professionals who are indeed Fibro Friendly !

Please see the link about what information we would like you to send,

fibroaction.org/Pages/Healt...

We would like to hear from as many of you as possible

I also look forward to hearing your experiences of diagnosis, Did you feel you were floundering too? How many years ago were you diagnosed? Or were you diagnosed more recently and think the diagnosis process is easier and the Healthcare Professionals are more informed?

Hope you are all feeling better now the weather is starting to change

Emma

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Mdaisy profile image
Mdaisy
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9 Replies
Maladjusted profile image
Maladjusted

I did contact FibroAction some months ago to advise that the Excellent North West Doctor, Dr Keatley Adams, had retired last year and that the Consultant Rheumatologist is now Janet Howarth, though the information does not appear to have been updated as yet.

I was diagnosed in June 2012. Referred to the Rheumatology Department for further referrals and tests in August. I saw Janet at the beginning of November, she promised to arrange some help. Since that appointment I had a visit in January from an Occupational Therapist, who arranged to to get me a couple of things like a doorstep and handrail for the stairs, as well as a bath seat, and grabbing tool. I have also seen a doctor who said he couldn't help, but referred me on to a Clinical Psychologist who sent me on a Pain management Course teaching me suitable exercises, relaxation techniques and most importantly for me - pacing.

I am now seeing a physiotherapist who is setting up an extensive course to help strengthen my body. Already the exercises are helping the neck and shoulder pain, and next week I am due to see yet another Rheumatologist. The letter received for this says they are going to identify a plan of care, so even though Fibro cannot be cured, and not a lot can be done to ease the pain a lot is being done to mike life a little easier, and it is good to know the support is there, so I would definitely recommend Janet.

Mdaisy profile image
Mdaisy in reply to Maladjusted

I remember Mal :) , Thank You I passed it on to be amended on the website. Have you been looking at quizzes today ?!!

Maladjusted profile image
Maladjusted

Quizzes? No, I'm still in the chocolate shop, my expanding waistline has made it difficult to leave ;)

leaves the truffles alone to go in search of quizzes

ladymoth profile image
ladymoth

I was sent to a rheumatologist years ago who said I had fibro. He wrote to my GP who then told me there was no such thing!

A subsequent GP said 'Oh yes there is!', and sent me to another rheumatologist who said 'Oh no there isn't!'

It was getting a bit like a pantomime!

Finally, I met a GP who said 'Well, let's find out for sure!'.

He sent me to a delightful consultant who said, 'Yes - you have fibromyalgia, and you also have R.A.'

So - it was nice to know - but it still hurts!

Moffy x :)

Maladjusted profile image
Maladjusted

Yep, no matter what name they give it - or don't give it, as the case might be, it doesn't hurt any less does it?

Ginsing profile image
Ginsing

How true who ever we see what ever they say we are still fighting the pain. At least acknowledgement is at last coming- where did I put the pain killers I am paceing myself in the number I take :) xgins

Sthandra profile image
Sthandra

I was extremely lucky with my diagnoses I saw 1 rhumatolagist and he gave me my diagnoses there and then I was expecting month's of tests I'd olnly had 1 bout of blood tests and 1 set of x-rays plus a lot of pocking and prodin from him but that was 21 years ago. Sithy

Well my GP still calls it frybrositis!

When I went for a atos medical a couple of years ago

The healthcare professional didn't know what fybro was.

He said he didn't know anything about the illness.

I was speechless!!

I would like to think that health care professionals have moved on a bit since then,

And are more informed.

If some of them still don't know about fibro I would be mortified!!

How are they supposed to access you with no knowledge of this of this complex

Illness.

What are your views on this one Moffy?

I would like to know (that is when you are feeling better.

ladymoth profile image
ladymoth

Hi Bibi,

I think the knowledge is gradually filtering through, but when it comes to ATOS I often get the feeling that they are paid NOT to know!

There is a petition doing the rounds at the moment to get Fibro recognised as a disabling disease. Hopefully this will be put into action before too long!

Moffy x

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