Rheumatology Appointment Waste of Tim... - Fibromyalgia Acti...

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Rheumatology Appointment Waste of Time!!!

tinkerbell47 profile image
16 Replies

So where do i start????

I went for my appointment today the first in 10 years (yep 10 years) as 8 weeks ago I was feeling under the weather and went to G.P who done a blood test and was worried about my results. Well all i can say is what a waste of time!!!!!

I started to explain to the consultant that i have rheumatoid arthritis as well as fibro and she just looked at me as if i was speaking a different language......she didnt know anything about fibro and said i would have to go back to my GP and discuss treatment. Surely there is a medical practitioner in Cornwall that can help me and advise me on diet and exercise and how to manage pain relief. My local surgery has no doctor that understands fibro and the specialist team at my local hospital has no idea either. If there are any lovely people out there that live in the Truro area in Cornwall and have a good GP or know of one i would be so grateful to hear from you.

xxxx

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tinkerbell47 profile image
tinkerbell47
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16 Replies

I don't live anywhere near you but keep on trying to get seen by a different rheumatologist I went through three the last one finally helped... He couldn't do anything for my arthritis .. I have osteo but he contacted social services who came and gave me aids and he also got me an appt with orthotics so I now have moulded to fit insoles to help with my ankle and balance. I hope you can find someone on here who knows a good gp near you who will refer you to another rheumatologist who will help. Don't give up I have changed drs until I found a great practise and they kept referring me till I got some help

Take care x

tinkerbell47 profile image
tinkerbell47

Thanks

The GP I have is great for minor ailments but as this fibro takes control more it is so frustrating. I have been to all but one GP surgery in my old town and i am now afraid to move surgeries as i have a good report with the doctor i am with now even though he has no understanding of fibromyalgia. I feel not guilty about keep going and 'complaining' to him. I am starting to feel that there is no-one in this area with any understanding of Fibromyalgia.

I am so happy for you that you have found a great practice that supports yu on finding the right support.

Gentle hugs

xx

julieevh profile image
julieevh

Ask to speak to the practice manager, they should be able to search on a directory of consultants accross the country for who has particular specialisms and where they are based, there must surely be someone in the West Country who can help.

Julie xx

Hi i hadhe same experience here i waited weeks and weeks for an appointment was so excited to go and see him thought i would be in there ages with him was in with him 15 mins max in asked few questions /put me on bed pushed and pressed /offf the bed wrote out few things on screen handed me a piece of pa[per to give to his secretary saying he did not need to see me again ever as i had fibro and nothing he can do and i got a leaflet on fibromyalgia and thet was it i cane out of there bemused angry anyway that was that so basically mt GP is the one who deals with all my stufff thank goodness she is fantastic oh well bless you hopefully someone on here will live near by an maybe offer you some help love diddle xxxx

Raffael profile image
Raffael

I too live in Cornwall, near Penzance. After 13 years of "try this pill and come back" I was put onto the Immuneology Clince at the Wellness Centre at Royal Cornwall. I have ME and FM, surely you can ask for a reffer...I see Dr. Gardner (I think that's his name) good luck and let us know how it goes

sureshot profile image
sureshot

omg, unbelieveable, luckily for me it was my gp that diagnosed me, and i was sent to an appointment same as you , but that was just to concur that the gp was right, and i think for her and myself that she was right , which of course he did, he very much knew what he was talking about, and seemed to have very much experiance with fibro, so my heart goes out to you, i hope and pray that you get the help and back up you need, God bless you xxx

hulya profile image
hulya

All the Hospital appointments are west of time , the Consultants refusing to diagnose deliberately!!!! They gets commission by the DWP and ATOS. Corruption is all over the world!! in every country! Doctors and Nurses making fun on patients who have serious health problem, even on people who are dieing . things are too inhuman unbelievable. My comments are as a patient and as an employee of Health Care ( I worked for 7 years full time.)

We would not be referred to the Rheumatologists if there was nothing wrong in the blood test.

I have learnt about Fibromyalgia only recently, via this Fibro Action, before I always thought I have unknown disease that's the reason consultants keeps saying nothing wrong, NO, it was wrong they are satisfying their aggression. I have started to have hart attack and stroke because of corruption every where on huge amount of money!! It is in the Government the first hand! in every country. People are saying they don't know for which party to vote for that's because all the Ministers are corrupting!

Hospitals Consultants did not do any favour to my health rather than doing harm, in Istanbul and London. (I did no live anywhere else) I canceled all the Hospital Appointments and decided not go any more.

The best thing is dont let them to getaway with their dishonesty . Pls. do this for yourself and for us as well.

in reply to hulya

Hello Hulya, I understand your frustration but we have to bear in mind that there are good and bad in all walks of life, we can't condemn everyone as not giving a damn. I don't honestly think that Consultants deliberately don't diagnose, that would be outrageous. I do however think some have no idea of the suffering caused by Fibromyalgia and as it is so hard to prove the condition, they are hesitant to actually give it a name. That is the case most certainly regarding myself. I wouldn't condemn all of them for this.

There will always be some who disrespect others, but again we can't condemn all Doctors and Nurses because the majority are committed and empathetic of peoples' illnesses.

It is understandable that from time to time we can get angry and frustrated, but we have to bear in mind that others may be offended by our comments because they feel differently about their care. I for one have a lovely caring understanding Doctor and a wonderful Consultant, that is my point really. There are some fantastic Consultants, Doctors and Nurses out there.

I hope this makes sense, if it doesn't please private message me Hulya so we may discuss this. Many thanks. :)

roundthebenz profile image
roundthebenz

It was my GP who diagnosed my FM. I was having some evil aches and pains and firstly he gave me some cream to rub in. That didn't work nor did several other things. Eventually he said, Fibromyalgia and explained it. Apparently, there is no diagnosis for it and they eliminate other possibilities and if it isn't those then it must be FM. He initially thought it might be the early stages of rheumatism.

teresa-67 profile image
teresa-67

isn't it sad that us fibro sufferers have no support anywhere but here what is going on with the NHS i do have good gp but i have to ring on a monday morning to gaurentee my appointment with him do not see anyone for my fibro it's like we have diagnosed you with that so go away now and sort it yourself it is terrible how we are treat you go with pain and you get ohh it's your fibro but what if it isn't that day what if it's something else they are missing? i have lost total confidence in myself and the NHS . thank god for fibro action xx take care xx

princess1 profile image
princess1

Hi i am new to this site and have been reading alot of your e-mails over the weeks from fibro sufferers to artheritis and many other illness's and we all have the same thing in common , we're all suffering with severe pain and getting no help from gp's or the nhs but what they seem to forget is that we have payed into this so called system by tax and national insuranceso it isn't a free service, and yes i have fibro and its very severe pain day in day out but i have to work because i'm apparently not entitled to benefits because i;ve not payed in enough although i;ve worked full time for 30 years ,now im part time ,i just come to the conclusion that this country does not or is not bothered about any of us one bit and like my so called consultant told me your just one of those people that suffer with pain so learn to live with it. this last four years have been a real eye opener to me as far as gp,s nhs are concerned all i can say is thank god i haven't got any thing seriously life threating because i wouldn't be hear now.Sorry for sounding off as i have but some times i get so angry with the way that people like us get treated by the powers that be,.

p.s yes i have been all round the systems medical and benefits, and now i grit my teeth and try and do my best with what i can .

I hope you all have a good day gentle hugs and yes i think i have got it all off my cheast now lol. xxx

italraf profile image
italraf

I live in London and my GP does not seem to know much about fibromyalgia - "you are just tired, a few months off work and a lot of rest will make you better"! I saw a consultant rheumatologist through my private insurance scheme and still did not get much satisfaction. Through a doctor friend of mine, I eventually managed to get in touch with a university hospital in Pisa, Italy, where they have a research centre into fibromyalgia. I managed to see a consultant there who understood exactly what I was talking about, gave me some treatment and arranged for a follow-up investigation (2 days) in a couple of months. I know that not everyone can travel to Pisa for a consultation and I am sure that there must be many doctors in the UK who do understand fibromyalgia, but it does seem to be a little and badly understood condition.

A few days ago, I was talking to another friend who has recently been through med school and graduated as an osteopath. He told me that unless doctors have been through med school in the past 5-6 years, they are unlikely to understand this condition, so we all need to look for young doctors!

Liquorice1 profile image
Liquorice1

I was lucky & diagnosed by my rheumatologist who saw me nearly every month to start with, then every 3 months (I was private at the time!) & it makes such a lot of difference. My GP is very good too. Thinking of going to see her this week as would like to come off Tramadol & try something different. Not happy with such a strong opiate.

You would think that what caused the fibro in the first place, now being in the past & over, it would gradually get better wouldn't you? Has anyone ever come through the other side? Somewhere I remember reading that it could just go! Has anyone ever come across this?

Lioslaith profile image
Lioslaith

There is good and bad doctors/consultants at any hospital. I had a good Italian consultant who was working at my hospital who diagnosed my Fibro about 9 years ago, it was confirmed by another consultant as well. Both were youngish, around mid-early twenties. They were well informed as was the head of the dept. who I only saw on my first appt. there almost a decade ago now.

I got pot luck of the consultants while registered under the first (head) consultant. He then retired and I was put on the list of another (near retirement age) consultant. He was useless. First appt. he was running 45 minutes late, he took my files into his office and left me waiting another 30 mins before coming out to call me in. I saw him 3 times - I think but at least twice - before he retired. Besides having my full history in front of him he 'diagnosed' me with a slight back problem first time around. I was born with a congenital spinal deformities and Scoliosis which are both fully documented in my files complete with a lot of x-rays as back up as well as any tests that my specialist at the time thought of.

I corrected him saying I had spinal deformities and Scoliosis. When I asked him any questions he told me to go back to my GP despite being about my Arthritis.

Second time I saw him, also to add the first time when he examined me at my initial appt. with him he jerked my spine causing a massive flare up that left me bed-bound for several weeks before easing enough to continue on a normal. Well as normal as I get.

So 2nd appt. he waffled on. Examined me again, this time jerking my hips/knees, and then said - "remember last time I diagnosed you with a slight back problem ..." and went on to blame my increased pain on that not Arthritis or Fibro or anything else.

When he retired I was moved onto another specialist, who has restored my faith in Rheumatoid doctors again. He listens. Doesn't examine me needlessly if he thinks it will cause me more pain. He answers and makes sure I understand everything and explains anything I have trouble getting. He also opens/closes the door of the consulting room and asks me every time if I want my Mum, who accompanies to every appt., to come in at any time and if so he would fetch her.

It all comes down to getting to see the right doctor for your condition. Unfortunately it's a lottery at times. Bad consultants/doctors sometimes aren't exactly bad. Like the one I had before I think he wasn't interested in anything except marking time till his retirement. Some have difficulty accepting a condition they can't see under a microscope or on an x-ray, or don't like to admit they don't know what's wrong, or about something. Doesn't make them bad necessarily just unable to admit to not knowing what is wrong or a course of treatment that will work.

babara profile image
babara

Hi I used to live in Devon and there is the most fantastic physio at Exeter hospital I can't remember his name but its a double barelled name he takes time with you and answeres all your questions I was offered some on going treatment and help but because i was moving to Bude in Cornwall I thought it made more sense to get help there, but oh my god it didn't there is no help for fibro in Cornwall...ask if you can be reffered to exeter hospital....I know it's further away from you but the help is soooo much better....I have now moved back to swindon where I was before but I'm still going round in circles trying to get help.

electricjaws profile image
electricjaws

you would be better trying to find someone at a pain clinic who understands fibro,unfortunately i ive up north so don't know of any in cornwall,maybe ring the hospital yourself and ask to be put through to the pain clinic(if they have one?) and ask if there is a specialist there who understands fibromyalgia,they may help you that is what i did, then if there is ask your g.p to refer you,(don't forget to takedown the specialists name!) xx

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