been fobbed off by the GP for 3 years... - Fibromyalgia Acti...

Fibromyalgia Action UK

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been fobbed off by the GP for 3 years, decided to pay to see a Harley street doctor Prof. Davies.....anyone had a success with this guy?

loopyloo1 profile image
19 Replies

im tired of been told..."you are depressed" Im not depressed, but im getting there!!.. im working full time, dragging myself into work every day but i struggle especially having to be at work for 7am....didnt have this problem until 2009....cant go to the gym, muscles burn all the time, tired after 12 hours sleep, twitchy muscles, lead legs (cant face walking) getting fatter and fatter....can no longer cross my legs?? painful jaw.. dianosed TMJ...

was Vit D deficient and had low calcium.....now within the normal range but no relief! I just want someone to take me seriously and stop fobbing me off with anti depressants. I spent over £1000 on a mattress....no better

so will spend £500 on a specialist Prof Davies...is he worth it??

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19 Replies
LindseyMid profile image
LindseyMid

I found him very helpful and he turned me around. I was in the situation though that I had everything apart from medications covered - physiotherapy, myofascial release, comorbid conditions under control, etc - so I only needed help with medications from him. I also changed GPs and had a supportive GP who was happy to accept guidance from Prof Davies even though I was seeing him privately (she checked out everything he suggested first though). This meant that I didn't have to pay for private prescriptions.

It depends what you need right now. He is very experienced with Fibro and has always taken an evidence based approach to treating the condition. But his clinics certainly weren't used to be able to offer a multi-disciplinary approach, so it likely you will need to source physiotherapy, etc yourself.

loopyloo1 profile image
loopyloo1 in reply to LindseyMid

thanks so much, i really need him to corroborate the diagnosis of FM i recieved whilst working in Belgium... since my return in 2010 the GP here totally dismissed it as a psychiatric condition and prescribed anti depressants???? didnt really understand this and i did question her, she fobbed me off...i feels she sees me as a whinger...i was not depressed but do feel low due to the constant struggle to maintain a normal life.

as im self funding, i have had the blood tests on the NHS (the doc was snotty about it) i realise i will have to source my own physio etc...ah well, its worth it if i feel better.

LindseyMid profile image
LindseyMid in reply to loopyloo1

Prof Davies should help with that. You need a new GP though!

loopyloo1 profile image
loopyloo1 in reply to LindseyMid

thanks, i really hope so! yes i know i should change and i will look into it..

rosehip profile image
rosehip

swap your gp it took my gp a month to diagnose me with fibro ( and i do suffer with depression ) xx

loopyloo1 profile image
loopyloo1 in reply to rosehip

rosehip, did the depression come because of the pain or before the onset of pain? I'm low now but dont actually feel depressed as such......Im worried that i am seen as a malingerer....im struggling at the moment, worse than ever. i will enquire how to change my GP.

XX

rosehip profile image
rosehip

you would know if you had depression its a terrible illness i didnt want to get out og=f bed i did not want to live . Its nothing to do with fibro clinical depression is a mental illness . being low becauce of pain is not depression . please swap your doctor. my depression came out of the blue 10 years ago and ive only had fibro 5 months xx

josie46 profile image
josie46

You should speak to the Pratice Manger at the doctors to raise your concerns about your doctor not listening to you

If you have no joy with them, tell them that you are going to contact Pals at the Primary Care Trust to complain about the bad service your receiving. You could also see another doctor instead. Dont let the doctors stress you out, i been there, i was dx in 2005 and i been through the system and i understand where your comming from.

As for the doctor giving you anti depressions, i was too dx with clinical depression but anti depressions are also used in the treatment of fibromyalgia. Ami is a lose dose anti- depresson which is used for nerve pain and to help you sleep.

You could also ask your doctor, to be referred to a pain clinic, as there knowledge is great when it comes to pain.

At the pain clinic i was assessed and they put me on a pain management course, gave me acupunture and changed my medicine,as the medicine does not work for me they gave me a efidural in the neck which has had no effect on the pain, going back next week, they said they would give me morphine.

The pain clinic is great as they understand the condition.

I was referred by my doctor some years ago to see the Pro Davies, waited months for the referral and when i did go, never got to see him, saw his assistant instead who had not read my file, then popped next door and spoke to Pro Davies who changed my medicine and was told to make a appointment on the way out, was given appointment for a year later, medicine did not work, went back to doctors who had no knowledge and did not know what to do so i changed doctors.

There is evidence to show that our symptoms are due to thyroid not working and our adrelaine not working correctly. You should ask to be tested.

The best thing to do is see another doctor and ask to be referred to pain clinic, the treatment at the pain clinic is just as good as seeing Pro Davies if not not better.

loopyloo1 profile image
loopyloo1

@Lynn, i have been treated for low VitD which is now normal as is my calcium, all my bloods have been normal, including TSH. I am not depressed, never been depressed, i feel low because im in pain all the time, sometime more than others. I was diagnosed with FM in Brussels, but the UK doctor did not belive it existed and just gave me anti depressants. I have had bloods done every month since november 2009 and everything except the vit D and the calcium was normal.(normal now though since jan 2012)

I have been diagnosed with TMJ but have not had an episode for a while. the last episode was in Brussels- the Rheumy diagnosed FM although he originally thought it could be ME or CFS. he said that there was an element of mental health issues in people with Fibro, hypersensitive etc...... this is a new thing for me and to be honest i wish it was my thyroid, depression, anxiety etc etc ...all these can be helped with a pill more or less.....this is effecting my life very profoundly and i want to know how i can help myself and if there is anything that can be done....if im not careful, i will be sacked from my job as every day is a constant bloody stuggle to get there.

Jane64 profile image
Jane64

yes, I saw Prof. Davis and he was fantastic. He couldn't understand how I had not been diagnosed before as he thought my symptoms were obvious of FM.

Good luck with him. i have to say though, that travelling to london to see him was exhausting!!

Jane64 profile image
Jane64

By the way, I meant to add that I saw him at Guy's hospital, not Harley Street. I insisted that my GP refer me to the fibro clinic there.

Don't pay for private consultation you should be able to get an NHS appointment xxx

mojoman profile image
mojoman

My question is

Why should we have to pay this bloke privately since he is supposed to working on the NHS? I thought NHS patients are supposed get the same treatment. We are no less ill are we?

Lindsey, maybe you can answer since you know him so well.

I see you was at this event

fms-sas.co.uk/fmsWCP08.html

with Daniel Austen who works at his Private clinic.

I thought you said you weren't Pals with the right honurable 'Professor' Davies?

LindseyMid profile image
LindseyMid in reply to mojoman

As we have discussed on many occasions, most consultants working within the NHS will do some private work during their career. This is completely standard working practice.

And the NHS has its own criteria for treatments, which ones get paid for and which don't. That will always be the case as an NHS cannot have unlimited funds in all areas.

The event you refer to was in 2008. Prof Davies and Daniel Austen were important members of the FibroAction PAB back then as they were very supportive of the charity starting up.

Jane64 profile image
Jane64 in reply to mojoman

I didn't pay to see him. I got an appointment at Guy's hospital Fibro clinic and saw him there...on the NHS.

He was very positive and informative and gave me hope for my future. All it cost me was my train fare to London

mojoman profile image
mojoman in reply to Jane64

Hi Jane,

I was wondering what medicine did he give you.

Please don't answer if its personal.

But he just gave me Acupan and did not even explain anything about it. It did not work. It was supposed to be a pain killer. I found that out later.

There was no discussion with me. He told me nothing could be done. I was lucky I was not in a wheel chair he said.

I saw him several months later.Still nothing. No discussion, no examination, no suggestions just pain killers that did not work.

How then can all these people at his private hosdpital say this?

fmsclinic.co.uk/testimonial...

Jane64 profile image
Jane64 in reply to mojoman

He didn't give me any changes to my meds but agreed that what I was on was ok if it seemed to work for me. He did recommend to my local pain consultant that I change me night meds from amiltriptyline to nortriptilie which has been an amazing change for me.

He also put in place a recommendation of physio and pain management to eventually get me off meds completely.

At the moment I can't imagine that happening but he did say it would be a long term goal, i.e. years not months or weeks!

I'm so sorry you haven't had any luck with him.

I must admit that all the changes and management I have received have been through my pain clinic and not directly from him, he just offered the recommendations.

Maybe your GP or pain consultant has had some contact from him?

Wish you luck, take care of you xxx

mojoman profile image
mojoman

Btw I read great things about Dopamine Agonist on the link Lindsey!

fms-sas.co.uk/fmsWCP08.html

So where can I/we go to get my/our Dopamine Agonists?

We want to be well just like you Lindsey :-)!

LindseyMid profile image
LindseyMid in reply to mojoman

If you wish to start a new discussion, please post a new question. We have covered this topic via email in the past though.

Not all medications suit every patient. And as mentioned above, the NHS has funding restrictions. Different PCTs have different rules on which medications are only allowed under certain circumstances.

mojoman profile image
mojoman

Well Im shouting pretty loud

and it doesnt seem to be doing me much good.

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