I've been asked to talk to trainee doctors about Fibro, What should I hammer home to them the most?

I got a phone call from my local drop in centre/GP surgery on Friday asking if I would go in & do a question/answer session with some trainee doctors that are there next week. I've NEVER done anything like this before & I'm concerned my brain isn't going to co-operate on the day so I thought I might do myself a little list of the main affects of the fibro but more importantly I want to hammer home to them that actually getting a diagnosis in the 1st place is one of the hardest things that people go through ( I know it was for me, at one stage I came out of a doctors with the diagnosis of a depressed elbow!!) I was hoping that you could all guide me & make suggestions of things I should bring up with them in the hope that they understand the condition better & other people don't have to go through hell to finally be told they have fibro!

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  • how about a diagram of where we get our pains, a list of symptoms, perhaps copy a few posts from here, as for diagnoses I was diagnosed with migraine, flat feet, and depression, please try and make them understand how bad it is, and how it can ruin our lifes, I now need a wheelchair im 54 was always fit before this

  • Definately a good idea to write everything down before you go visit this doctor.

    Did you ever make notes of what you were feeling before after diagnosis???? if you still have them you could hand them over......or do a day in my life and write everything down for them.

    If they could get a standard of care......my friends daughter has fibro too and she has had a totally different experience in diagnosis and care to me

    x

  • How about the fibro leaflets from this site. But for me the biggest problem is feeling like a hypocondriact :-(

  • What a great opportunity. Talking to trainee doctors is a great chance to influence the way they see patients from the outset.

    IMO the important thing to get across is that just because someone is in pain for no immediately obvious cause, gets tearful 'for no apparent reason', complains of tiredness even when sleeping more than usual, doesn't mean they're depressed. Nor does it mean that they are benefits scroungers (most of us continue to work as long as we possibly can, and hate being unable to), nor does it mean we are 'just looking for sympathy'. Being spoken to by doctors who make no secret of the fact that they are thinking one of these things, is very stressful, and can prevent people from going back. Talking to a doctor who has a genuinely open and enquiring mind is a completely different experience, and sadly seems to be rather rare!

    I like the suggestion above about taking some of the posts from here - just to show them exactly what people have to put up with - and the fact that we are still human, and humorous, in spite of it all!

    Also, perhaps you could invite questions, so that you are giving them the information they want.

  • I think the suggestions that KazF has given are excellent and I was wondering about taking them some handouts that they can take away as well so that they can read them later as a reminder of what they heard. It needs to be something like the monster list of symptoms that is available online and I agree I am more than happy for any of my posts to be used as teaching aids. Hammering home the fact that we are not people looking for an excuse not to go to work is so important and in fact in my experience the majority of the people that I have come across in my 8 years since diagnosis and hearing the actual name fibromyalgia for the first time is that they are people that have worked very hard, long hours and for a good few years. Most had jobs early as they could and also have had traumatic lives at home as well. When you talk to people online or in person they are all still looking for answers and a way out of living that way and trying desperately to regain the life they had and to get back to work and a social life and not malingerers in any way shape or form. It does not seem to matter whether you are a factory worker or a high flyer either and to see the young mums desperately trying to run their lives with children when they are feeling so ill all they want to do is to go away quietly is heartbreaking. They need to understand that it is a very real illness and is suffered by very real genuine people who are often at their wits end and just want a good nights really restful sleep and to wake up feeling refreshed and free from stiffness, pain, sickness, bad stomachs, headaches etc etc. I am sure you will do a very good job of doing it and nobody can answer questions better than a sufferer. You can explain right at the beginning about the problems that we suffer with fibrofog and ask the trainees to give you the time you need and not to rush you. You take control of them and don't let them take control of you because you are the expert in this situation not them. All the very best for doing it and do let us know how you get on. xxx

  • you could always take us lot with you ]lol]

  • true we re not all depressed, the medical profession depresses us as do the dwp, but dont blame depression entirely, neither are we benefit cheats, Im 54 raised 5 kids with out benefits, worked my ar** off as does my hubby we ve prbably paid more in tax es then Ill ever get back on dla,

  • Fantastic opportunity! I only wish the powers that be would invite people who suffer from any illness give trainee doctors an insight into their condition, after all, if you have an intimate relationship with an illness, you certainly know more about it than most GP's!!!

    The one thing that frustrated me more than anything were the doctors who thought they knew what Fibro was and then preceded to tell me that it was a mental disorder and 'all in my head' and that if I went away and stopped thinking about it it would go away...yeah right!! I wish!

    Just make them realise it's NOT an imaginary illness and that there is a difference between a congenital brain disorder (if that's what it really is) and mental illness, and even if it were a mental illness it would still require medical help to control.

    It might also be thought to let them know that although they are very knowledgeable and intelligent people, they need to know so much about so many different illnesses and conditions that it is quite possible for a patient to KNOW MORE than their general practitioner does about whatever it is they suffer with!!

    Whatever you end up saying, I wish you all the best and good luck. Above all, enjoy it!!!

    Take care of you xxxxxx

  • By the way, I don't work, but I don't claim any benefits either.

  • Think maybe wise to mention that Chronic Fatigue usually goes hand in hand with fibro as my lovelly doc forgot to mention to me after diagnoses of chronic fatigue, 3-4 yrs of pain n suffering later and a few hosp admissions to be told by the hosp that i have fibro. hope u can manage it great oportunity.x

  • Thank you each & every one of you for taking the time to answer.

    I'm really surprised to be asked as I've never seen the GP that rang to ask me to come in. The surgery runs as a drop in centre/ registered GP practice so it tends to be staffed by various doctors on a rotation who are under 1 GP manager, anyway long story short she rang me to query my Amytriptilin repeat prescription & I ended up telling her about my recent flare up, our conversation must of stuck in her head as she rang me a few days later to ask if I'd be willing to do this! My plan is to do a list of symptoms/pains/intolerances etc & make myself some hint cards so I don't forget anything. I really want to impress on them how hard the battle to get a diagnosis is too! I'll be giving them info from here aswell & provide them all with the link too! I'll be sure to cover everything you all suggest so huge thanks for messages received & still to come xxx

  • i feel that the depression is because of the fibro not causing the fibro my g[p agrees but i know many dont

  • JUST TELL THEM TO READ THIS SITE AND IGNORe THEIR MENTORS!!!!!

  • Charj, I have done on of these already (assuming it is the same thing) and basically it is to allow those medical students the opportunity to practise their consultation abilities - i.e. to learn to ask the right questions when trying to diagnose. I went straight into a debreif with my GP (who trains other GP's) and the student to discuss how it went and one of the points my GP hammered home to the student in question was not just to check for physical symptoms to try and track down the issue, but also to ask other "human" questions - she made her point by saying that as this patient (me) is 42 and in the prime of his life with a good career and relationship... how about asking him if there is any impact on these things... for instance. has he had any issues with his sex life?

    This is to prep them for their final exams and also to help them with their final dissertation should they choose your case to focus on (they likely asked you as FM is so complex).

    I hope this helps... I wouldn't go worrying or stressing over it let alone trying to gather info etc to throw at this poor student!

    Just follow your nose and answer the consulation questions :) No wuckers :)

    Cheers

    Peachy

  • Right wish me luck. I'm off to see the doctors!

    I'm certainly going to refer them to this sight & try & get in all the things everyone's mentioned. I'll let you know if I survive later!!

  • Hi, I don't know if I'm too late and you've already seen them. Every suggestion you have had is good. I think I would add only that the symptoms can go up and down and we can have the odd good day followed by flare ups. I feel as if people look at me oddly because some days I have a stick and some days I don't.

    Good luck.

    Whippt x

  • Yay I'm back. I hope I didn't bore them to death or come across as totally neurotic! I was with them for an hour & a half but It wasn't actually as bad as I thought although I did find myself repeating point a few times.

    We basically sat down with a cup of tea & they asked me to tell them what it was like to have fibro. I covered pain,medication,embarrassment, fibro fog, speech issues, mobility problems, affects on family & friends, how not everyone is "just depressed" , DLA claim packs,support,how vital it was to listen to your patients as they can be more knowledgable on there own condition(nicely of course) pain clinic referalls, physio, holistic things, & how vital it is to listen to all your patients issues & then look at a wider picture as I'd been seen by various consultants at different hospitals & it took a long time for someone to look at everything & link it together. And of course I mentioned THIS website!! I hope I covered all your suggestions.

    I probably mentioned lots of other things too but you can imagine what my memory is like!

    At the end of the session one of them was very honest and said she thought it was another name for ME and as she'd never met anyone with fibro before that she hadn't realised how hellish it must be to live your life that way. (So that's at least one doctor that will be a little more understanding with future patients when she qualifies)...She also said that I was obviously a positive person & had a good outlook on life !

  • Hi there, You could also mention some of the newer treatments,ie vitamin D and b12 replacement, some of the differing regimes used to diagnose, no more counting pain points etc.

    The use of T3 and low dose Naltrexone (many immune conditions using this effectively).

    Parasitic and Candida involvement (CFS is now being attributed to the Morgellans worm by some)

    Whether Fibromyalgia is another name for undiagnosed thyroid disease?

    There are some brilliant suggestions already mentioned, good luck and let us know how it goes please,Kym.

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