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The UKFibromyalgia Forums • View topic - Doctor wont listen....help



Doctor wont listen....help

Anything to do with the NHS or Private Healthcare.

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Doctor wont listen....help

Postby cameron1 » Tue Apr 02, 2013 7:46 pm

Hi

I was diagnosed with Fibromyalgia in December 2011 by a Rheumatology consultant at my local hospital.

This was after 5 years of all my symptoms being dismissed by my doctors. They effectively made out it was all in my head and towards the end I actually started to believe this.

When i finally got my diagnosis I was so relieved. Yes, gutted, but relieved that I was not losing my marbles or just being "LAZY" as so many people presumed. AND I was looking forward to actually getting some help from my doctor.

Anyway............. 15 months on and I'm still no nearer to being sorted out. I'm a serving police officer who has not been fit for operational duties now for 4 years!!!! And I am currently off sick again. Ultimately this is going to cost me my job. Don't get me wrong, i'm not off on a regular basis.... but when I am off its usually for 6 to 8 weeks.

If i get sacked, not only would this stuff me financially but it would devastate me on a personal level. I like my job.....I don't want to be anything else.

I have two small children who often don't get the physical attention I want to give them which makes me feel useless and a wonderful husband who's patience are starting to wear thin.

My problem is that despite the diagnosis my GP continues to half dismiss the fibro....There is a long history of depression in my family and my GP simply insists that this is the root cause of how I feel...NOT fibro.

I've recently had a bad flare up which has caused real pain in my back and sever discomfort in my abdomen which I know is IBS. My GP has dismissed it yet again saying its depression and the discomfort in my stomach is all in my imagination. And the back pain is a muscular-skeletal problem.

I've asked to be referred back to the rheumatologist which my GP has said is not necessary because its not fibro.

I cant begin to explain how desperate I feel right now. I e-mailed a private rheumatologist but he wants £400 just to even see me, plus at least another £600 for blood tests and a scan.

What do I do? Who do I go to?
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Re: Doctor wont listen....help

Postby *Lisa* » Tue Apr 02, 2013 9:27 pm

:welcome:

Have you the diagnoses letter from the rhematologist? GP should have a copy also. I would see another GP or the practice manager with this copy letter and explain that current GP is not helping you for reasons you say above and that you need support! or further action shall be taken :nono:

Depression has many simular symptoms which can overlap fibro which is where GP is at :-?

What makes me laugh is that fibromyalgis IS a muscular-skeletal disorder/problem :roll: so looks like your GP needs educating. :crazy:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Doctor wont listen....help

Postby FluppyPuffy » Tue Apr 02, 2013 9:38 pm

Sorry to hear what you're experiencing with your GP, unfortunately there are still some dinosaurs in the NHS that the last ice age (and this current cold snap) missed :facepalm: :facepalm: :facepalm:

Is there a different GP you could see at your surgery??? If there is, give them a go and see what they have to say. If they're still dismissive of FM, keep trying until you find one. I

If there isn't an alternative one to see, you may need to consider changing surgeries. If you have to do this, have a look at which ones are in your area and get in touch with them. Ask if they have any FM patients and if so, is there a particular GP that specialises/has an interest in the condition. If there is, then see what you need to do to transfer to them.

You could also try contacting any support groups in your area to see if they have any recommendations for FM~friendly GPs or even which ones that should be avoided due to their approach to patients with the condition.

Hope you can start getting somewhere soon :fingerscrossed: :fingerscrossed: :fingerscrossed: Anything else you're wanting to know about, just ask and we'll see how we can help you with it :cow-wave: :cow-wave: :cow-wave:


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Re: Doctor wont listen....help

Postby cameron1 » Wed Apr 03, 2013 1:10 am

Thank you for your replies.

The ironic thing is that when I saw another GP at the surgery because I was unhappy....he told me I was better off seeing my usual GP as he has previous knowledge and experience with Rheumatology conditions!!!!!!!!

No... i don't have a copy of the consultants diagnosis actually, but my doctor does...so I think I will ask for a copy. I have an appointment with him Friday so maybe I will try and build up the courage to be a but more insistent. I usually just break down and blub like a baby.

I'm so worried about my job. I don't know what my rights are or even if fibromyalgia is recognised as a disability? I've already voluntarily reduced my hours at work and taken a pay cut in the hope it will show my employers I'm trying to manage my condition and bear some of the burden.

The symptoms seem to be getting progressively worse and are aggravated massively by the cold weather and stress.

I seem to have peaks and troughs with the condition. Some times i manage a fairly normal life as long as I don't burn the candle at both ends, eat well, plenty of rest etc. I always have discomfort in my back, i'm always cold and often dropping things or tripping due to pins and needles in hands and feet. The fatigue is pretty much constant too, and I always have an irritable bowel. I have given up smoking, don't drink alcohol, changed my diet cutting out processed fats. I really have tried to take some "personal responsibility" for managing the condition as advised by occupational health!!!

But a few late nights, anything stressful, cold weather, being overly busy, and the symptoms flare up to unbearable. Sometimes I cant even put my finger on what makes it bad. And YES, i do suffer with depression as well which just makes it a vicious circle. The depression makes the pain worse, and the pain and isolation makes the depression worse. But my GP is just fixated on the depression and dismisses all of the other symptoms as being in my imagination.

I have been having trouble getting the kids to school on time in the morning because I just cant get going. By the time i get to school I have to park half a mile away, and then walk at snails pace. I approached the school and explained. I asked if i could park in the school park just whilst its flared as bad as it is. They said that as I don't have a disabled badge, they cant make an allowance as its not fair on other parents.

I just hate that because people cant "see it", they don't believe it. And I hate even more that i'm desperately trying to hold onto my job, and desperate to get back to work. I've made all the "lifestyle" changes that are recommended and am doing everything I can to manage this.

I want to scream. How can this affect so many people yet remain such a misunderstood and dismissed condition?
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Re: Doctor wont listen....help

Postby LouLou » Wed Apr 03, 2013 10:15 am

Hi Cameron

I am so sorry you are not getting the support you need right now. Have you not been given any pain meds or anything to help with the pain? Like the others have said could you try another GP or even another doctors surgery? If I was you I would put in a complaint about this GP as they are ignoring an actual diagnosis from a specialist.

What normally happens is that most of us were referred to Rheumatologists by our GP's, they diagnosed FM then we were referred back to the care of our Gp to discuss the best way forward. You are clearly not getting that support and that's not right at all.

In regards to work you will be covered by the Disability act. I don't know all the ins and outs of this but if you google it you should find some more information on it.

I also work, I'm in Finance and have had to cut my hours too from 45 to 30 which has had a huge impact on my salary. I've been fighting for a laptop for the last year so that I can work from home on bad days/during flares but I think I'm losing the will to fight as it all seems like one long struggle and fight just to get people to understand. It's so frustrating as like you I enjoy my job and I want to continue doing it but my employers seem hell bent on making things difficult for me. Do you have a HR department you can speak to about your options? You said you are a Police Officer no longer on active duty - are there roles that are office based that you can do? I must admit if I didn't work in an office I don't think I could do any other kind of job.

The thing a lot of us have had to deal with is people not really understanding what we are going through as we can look so "normal" a lot of the time. You may be able to qualify for a blue badge if you have difficulty walking - again I'm not sure of the details of this but it's always worth a try?

You said you have made all the lifestyle changes you can? We have all had to adjust how we live and do things but no matter what we do or change, some people don't seem to get that you can still have a bad day/flare regardless of how many hours you cut from your working week or how many changes you do make.

I have IBS too and I find that during a bad flare my IBS kicks off too. And you are going through a lot of stress and worry at the moment so it's not surpising that your symptoms are getting worse. I use a hot water bottle on my stomach when my IBS is kicking off and eat plain bland food for a few days.

You are in the right place for support though, this forum is a life saver and you are not alone in this, even if you don't get the support you need from your GP.

I'm sorry I can't be of more help and I've waffled on long enough lol.

I really do hope you can find some help soon. Please keep us posted and I look forward to chatting with you on here.
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Re: Doctor wont listen....help

Postby FluppyPuffy » Wed Apr 03, 2013 12:46 pm

You should be covered under The Equalities Act 2010 work wise as it does include conditions like FM. Under this, your employer is obliged to make "reasonable changes" that take your conditions into account so you can carry on with your job. Your HR/Occ Health type people should be able to give you advice on this, or your union rep if you have one. There is also a Disability Employment Adviser based in local jobcentres who can help and advise with such matters. LouLou, it might also be worth you looking into who can provide you with some additional help/advice about the lappy/working from home option to see if it will move things along, so that at least you'll know where you are with your "reasonable adjustments" requests.

The condition does change which is part of what makes it so frustrating and vague, we never know what we are going to feel next so can't plan that far ahead with things :facepalm: :facepalm: :facepalm: Things do seem to have worsened over time for most of us as well, which doesn't help either with the future and planning :shock: :shock: :shock: And as for the cold and stress..................they are a couple of FMs favourite things to feed on as it knows it drags us down even faster than usual.

WRT the things you are having problems with, there is a board on here that is purely for hints and tips to help cope with the crud FM throws at us. Having a look on there might start off some thoughts and ideas about what could be helpful to you for dealing with things they arise. And of course you can always ask about things. There's a good chance someone will have found themselves in a similar situation and could have some ideas/advice for you.

The lack of understanding from those around us is always frustrating and adds its effects to things as well :facepalm: :facepalm: :facepalm: When it comes from those that we thought would be there for us regardless of what happens, it can be soul destroying. And unfortunately it's something that most of us have experienced at some point along the way. If there is anyone that you think might be worth giving another go at explaining things to, there are some things on here you could use to try and get them to understand a little more. Sadly tho, some people just can't and/or won't accept conditions like we live with, and in their cases, maybe giving them a wide berth/keeping involvement with them to a minimum is the more suitable option :( :( :( :(

Whe you see your GP, have you considered trying a different approach to see if they will be more open to FM?? Sometimes using a more direct approach, explaining things that you have been looking into and taking info with you from reliable sources and then asking the GP about suitability for you can bring about a more positive attitude from them. It doesn't involve being aggressive, it just needs a bit of confidence, then when you've dome it the first time it gets a little easier each time you do it. Just another thing to contemplate to help you get the care that you need.


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Re: Doctor wont listen....help

Postby LouLou » Wed Apr 03, 2013 12:54 pm

What doesn't kill you will only make you stronger ;-)
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Re: Doctor wont listen....help

Postby FluppyPuffy » Wed Apr 03, 2013 1:27 pm

Any time LouLou :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:


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Re: Doctor wont listen....help

Postby sjc » Thu Apr 04, 2013 10:36 am

HI there,

Hope you ok despite your conditions....

To be honest, I think this is a well known scanerio for most people with fibro patients who also may suffer from depression.Some of the symptons of Depression and fibro can overlap, that's for sure. But saying that some symptons of depression/anxiety can also overlap with other conditions out there, like MS, arthiritis, food allergies, etc....

I think that to be honest, most GP's and even some specialists don't know how to treat fibro, depression, anxiety issues, etc....they just through a pill and hope for the best.

I think that what I advise for all people to do with any disability is too research into fibromyalgia and even any other illness that they may have, such as depression, etc....really investigate it from all angles, look at what medications are out there, look for the potential causes, and also look to see if there are any conditions that may be very similiar to depression and fibromyalgia....Alot of GP's and even some specialists through out fibromyalgia and depression when blood tests come back normal, but in fact some patients have an underlying condition such as arthritis, food allergies, etc...so really do you research and even present your research to your GP or specialist, and let them know that you are just as knowleagble as them..know you rights as a patient as patients do have rights for a second opinion or to see a specialist for a formal diagnosis and specialist treatment....I don't know your situation obviously, but I do know some patients tend to believe every word of the gp and they do not feel that it is in their power to confront them...I am a believer it is your health, you know yourself best, and if you are not sure or happy with something, then keep nagging the NHS until you get result...nobody would put up with a dodgy or half good service from a shop or service that they come accross, so why should we put up with half good treatment or crap services from the NHS and social services?

I would also consider how your depression and pain manifest? Did your depression start first, or did your pain start first? If you pain and physical issues started first, then more then likely you got depressed as a result of your underlying problems....therefore you need to treat the underlying issues first - maybe consider seeing a pyschologist or even a pyschiatrist for your depression, so they could get an insight into depression, and treat your depression seperately....but ask the gp surgery to then treat your physical health issues seperately once you see a mental health specialist.....Have your seen a pain management service, as they are good at looking at ways with dealing with pain related issues...?

Keep seeing all the gp's at your surgeries until you get results...There are patient advisory liason services in the nhs, normally called PALS...They could provide your with informaiton on what are your rights or if you need to complain about anything.

Take care and all the best. xxxx
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Re: Doctor wont listen....help

Postby lolo73 » Thu Apr 04, 2013 9:21 pm

Would it be worth looking for a new GP practice. You don't have to give reason, you just go to another practice and say you want to join, you never need to see your current practice again. Before moving I would phone around checking which GP's have an understanding of FMS. My own GP has missed my FMS for 15 yrs, luckily his son has come into the practice too and pretty much backed me up when I suggested that I had FMS. If he hadn't I would have been looking for a new GP, I know it isn't always easy if you live in a small community :-?
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Re: Doctor wont listen....help

Postby cameron1 » Fri Apr 05, 2013 9:56 pm

Hi

Thanks for the helpful replies and advice.

The fibromyalgia started for me after the the birth or my 1st child in 2007. It was a bad pregnancy and traumatic birth followed by a nasty infection due to an internal tear that wasn't noticed.

The back ache and exhaustion kicked in first followed by depression. The back ache was put down to having a baby, the exhaustion due to having a newborn, and the depression was post natal due to having a baby.

The depression was treated and got better....however the physical symptoms remained and got worse, which in turn caused the depression to return. And over the years other physical and mental symptoms have developed.

For me the two go hand in hand, one triggers the other. Although its not always depression that triggers the physical symptoms. Like I said I am currently off work sick, and it was the physical symptoms that flared up. I had been so busy, the weather was so cold and bang, there it was. The pain in my back was severe that when I went to the hospital they thought I had kidney stones. I had never known the pain to be this bad.

And when the doctor asked about medical conditions ad I mentioned the fibro, he barely even acknowledged it!!!!!!! He was very dismissive about it.

However.....thanks to all your advice, I saw my doctor this morning. I insisted that I AM NOT DEPRESSED. Yes, I suffer with depression, but I am not currently depresses and yet the physical symptoms are still there. I educated the doctor about fibro which I don't think he appreciated.....but he did soften in his attitude, he did acknowledge that we are dealing with fibro, and he has referred me to a fibro clinic to rule out any overlapping conditions, and for medication and treatment advice. Progress at last.....

So thank you to you all x
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Re: Doctor wont listen....help

Postby LouLou » Sun Apr 07, 2013 11:41 am

:welldone: for standing up to your GP cameron, sometimes it is hard as we often feel like all we are doing is fighting lol.

I'm so glad you made such positive progress. Keep us informed on how you get on with the pain clinic.
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Re: Doctor wont listen....help

Postby lolo73 » Sun Apr 07, 2013 9:01 pm

Well done for being so proactive Cameron. Hopefully you will got some help and proper advice.

I too found my condition exacerbated by pregnancy, I think my employer thought I just didn't want to return to work after my babies were born (made worse by the fact I got Pg for a 2nd time when my first baby was only 3 months old, so I claimed 2 lots of enhanced mat pay and didn't return) I got treated really badly in fact the director who I had never met before basically called me a scavenger and then dismissed me, I was gutted at his attitude, I was sitting with a back brace on and had given 13 years service, even my union rep was speechless. Anyway I hope you find a way to sort out your work situation x
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Re: Doctor wont listen....help

Postby Iceskatemum » Mon Apr 08, 2013 2:11 am

lolo some of the stories folk tell of employer and Fibro are terrible but I think your's up there for an Oscar if there was one available for the most insensitive employer award. It take a lot to make me speechless but your Fm tale certainly did that for me!! Lets hope Karma works !!

Cameron all I can do is add to the other congratulations for being so proactive and taking charge of your illness. We as patients interact with medic so little in the course of a year usually much less than even a day so it is important to acknowledge that we are the experts of our condition and how it effects us . lets hope the fibro clinic will be able to offer you some suport and guidance about the illness and that when they report back to the GP he will listen this time.

Good luck
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