I want to say that so much damage is done when the professionals do not listen, because the medical profession is riddled with gossip, it seems to function on it , instead of actually listening and only take in the relevant points.

Trouble is when so much is riding on clinical decisions reached, it can make and play havoc on ego's for pompous consultant's and yes us patient's alike.

I've been trying hard to get help for my problems and was and am worried that before a problem is obvious to the professionals it may be too late for the patient, instead of intervening and stopping it getting to the point of no return.

I've been bombarding anyone who may be interested about my neck and the area between my shoulders, but because of the disability issue, and possible wrong diagnosis, that refusing to shift their point of view can make the problem so much worse.

I admit for the patient who may have so many other issues around psychological problems, that for the doctors it can make reaching a conclusive diagnosis so much harder.

But what comes first ? the psychological damage by not being believed, or damage done by the coping with a disability or the hiding off it for whatever reason can cause so much more damage, especially if there is a digging in of the heels, by al concerned.

And with so much riding on clinical assessments for the Hospital, (and the patient) that it can and does cause psychological problems for the doctors as well .

Every patient I think deals and copes with their disabilities differently, and I think doctors should know that, that some patient's do not show something outwardly, does not mean to say that they have not been living and coping with their disability in their own way and in silence, I say this because a physiotherapist said to me recently that I could not possibly have been living with my disability for 27 years.

His statement to me made me realise that just how much of a problem there is with perception in the minds of the professionals, and that what you say as a patient has to be backed up with something outward that just because you made it to their door, does not mean that there is no serious problem, especially with pain, for with pain you have to live with it, and you devise coping mechanism's so that you don't bother people with it, for nothing causes so much problems for someone than being constantly told by someone that they are in a lot of pain, because what can you say to someone, after the third time.

So needless to say I'm a bit peeved with the whole issue, and I accept there may be reasons for doctors behaviour that I'm not aware of, but hey' there are things I know that I do not put down here, as I have to go to the same people for treatment, and I know how difficult and hard it's been to get to where I am now, as getting good pain management is such a pain, Pun implied.

7 Replies

  • I had a laugh when i read a legal report done by a doctor, patient reports pain is c5/6, in actual fact it should have been pain level reported as a 5-6 . It made me sound as if I was diagnosing myself, when Infact he either can't read his own notes, or his secretary can't read his notes, or he speech recorded them from the notes he scribbled and was lost in translation. Problem is this thing is on my notes forever, you can't question nor correct.

    I was very distressed when Dr were raking thru my files from birth trying to fit me into a diagnosis, getting my hopes up that psycology could get me cured when all along my other consultants were correct in my diagnosis and nothing can be done to fix me. It put me back in my acceptance of what I had I would have to manage with for life. This Dr was very well known in his field and was quite insistant. Messed with my head for far too long. Now getting on with getting on, trying to forget he exsisted. Not every human will follow exactly the text in a book written sometimes many years ago.

    Thankfully not every doctor will jump on the bandwagon but they don't like to diss each other's diagnosis!

  • For six years I had doctors tell me that the pain was in my head there is no logical conclusion that they can think of, they've tried all the tests so that's that. I very nearly lost faith in all doctors as I had been referred to all kinds of doctors at the pain clinic. On the verge of giving up I saw a different doctor, who without him today I don't think I would be able to have any faith in doctors at all. My doctor when we met quoted star wars, odd right? however the first thing he said made sense he said that Yoda had asked a Jedi why he was trying so hard to find this planet, and the Jedi replied because it doesn't exist. He said to an extent we're all searching for something that we cannot see and we want answers to which doctors may not have answers for. However, he was the first doctor to realise the other doctors had over looked my spine, which was the cause of my pain and apologised to me about the mistreatment I had received he said that my pain was real and he even devised his own theory as to why I am in pain. Some doctors do not like to admit that they can't put a name to something and so they just say that its not there. Pain is so complex because sometimes where you are feeling the pain is not the root or cause of the pain that could be in a completely different place in your body. Just because you cannot see something does not mean that it does not exist. So do not give up on doctors just yet as you might come across the one you've been desperately trying to search for. Doctors don't like to admit that pain is a phenomenon to which they may have no answers to, technology has not advanced far enough to scan and observe how a body functions and what can be causing that pain when the body does function. Just ignore those ignorant doctors who do not listen and keep searching for the one that will listen to you.

  • Hello coolpolitealex, Oh how I agree with you, you summed it up in a nut shell. Nobody listening or only hearing what they want too. I come across this type of comment frequently. Your right once something goes on file it never changes, however patients are supposed to have a right to amend medical records, but in practice no one takes any notice of patient amendments we are just persistent moaners even when a blatant error is obvious or you prove no psychological foundation as the facts can be seen. Sadly level of pain is perceived differently by different patients and dependent on a persons nature how they cope with illness and disability is entirely different. Hence a site like this, so you can voice your anguish and share it with others who have experienced similar outcome. But I feel like you that doctors should approach things differently too. I feel professionals sometimes err on the side of tried and tested, which means if it works for the majority that's good enough. However the majority would never consider challenging a professional even if they had doubts in their case. How do we approach this dilemma of making medics listen to the individual patient, it has taken me years to change my doctors view in my case, but I still come across failings in the treatment system e.g you have no history of this when in fact it has been happening on and off for some twenty years as the written records show. What made you want to highlight this problem I wonder?

  • After four years of constant pain I was told by a consultant in a pain clinic that maybe I should just learn to live with the pain and that perhaps I was talking myself into a problem!!!

    In despair one lonely painful evening I found this wonderful site and gradually learnt more about possible causes and learnt where to look for help and guidance. I now have proper medication and have appointments in the pipe line to see doctors who actually know about the causes for some pelvic conditions. I feel more confident that some help will come my way now but I was in a bad place after that one consultant put me down.....

    My doctor has been very supportive but admitted she didn't know what was causing the pain and was very helpful indeed once I was able to go and talk calmly and with a little more knowledge about the possible causes. She always listened but many consultants along my journey didn't listen. It seemed i had to go through various check boxes which involved various injections under local anaesthetic. The injections were quite clearly no where near the pain problem but it just ticked their box in a list of procedures to be done!

    Keep calm and get more knowledge. The more you know the more you can ask the right questions. Don't be put off by the ones who don't listen, just keep on looking for the ones that do.

    I know all the treatments and procedures and appointments that were a complete waste of time must have cost big money and it worries me that this is the way it has to be but there are good and clever people out there who can help - even if its just getting the pain under some control

    This site helped me so much and I will always be grateful for the help and support of others here who are going through so much themselves.

  • Great advice thank you, and I wish I had as much insight, but It is nice to be reminded about the pitfalls of going through the system as when you are in it and looking for answers it is easy to forget that the doctors and others working in the system to help you are only too human themselves.

    thank you Marybee4 and yes there are many differing answers to different pain.

    But I don't want everyone to think that I blame all the doctors, because I'm not, and Sadly with pain it is telling you there is something wrong, and when you can't get to the cause of it, frustration set's in and we ourselves by our actions (through frustration) may come across as being ' well . we know how it can affect the answers, and when you are desperate to know , you go round the Mulberry bush again, and you get dizzy ha ha, no seriously thank you to everyone for your input and I think we know that sounding off sometimes can focus our minds, after reading these replies I feel again focused enough to think straight , I have an important appointment coming up and am focusing my mind on what I want to get over to the consultant, best wishes all

  • How heartedly I agree with everyone here. Doctors mis record and letters get a confusion of facts. Once had a diagnosis of fibrositis suddenly between orthopod and gp without any relevance (dislocating toes) I recently had a private physio, then chiro consult, both of whom (without any suggestion) confirmed the diagnosis of hypermobility causing 'swan neeck' deformity started 30 years ago...etc, etc, etc I could go on but.....

    I held off going to gp for too many years, so that was my fault, but when I did it was not properly investigated. GPs aren't at fault, they have to refer onwards, and hosp staff are stressed by numbers to give more than passing mention, especially for some of us poor old cronies :) The whole system needs simplifying for all concerned, patients, families and health staff.

    As for being told you can't have been in pain for 27 years - well.....

    I dont look so bad on the outside but when the scans or xrays came back, all the medication got offered double. Hee Hee I love that disbelieving look from the radiologists!

    No one had the fore thought to warn me of the approaching disability and I wasted five years of life trying to get back to work and fighting depression because of pain. A little truth / realism goes a long way.

    The good thing is I found some lovely understanding folk here, and feel priviledged to offer advice and 'hugs' to others.

  • The job of the pain councilor is to determine what needs of yours are not being

    met.. they need to find the frustrations that you have as a patient.. they are there

    for the doctor too when the doctor feels like they have hit a road block in helping you.

    It might be something not being said about treatment at home or attitudes of others

    around you towards your pain/ illness... but it's not to tell if you are nuts or not..

    The doctor doesn't have the time or the skills to find out all about you as a full person...

    so that job belongs to a doctor that likes to talk with you, ask questions, discuss things

    with you... then it goes back into the doctors hands.. to treat the entire person as

    a whole.. not just symptoms.. They work hand and hand and closely..

    Any lies that you tell to the councilor is wasting all valuable resources.. it's messing

    up your effective treatment plan so you need to be brutally honest when you

    answer those questions about yourself. Don't worry, the councilor has heard it all

    before and way worse than what you could even dream up in your head..

    XX Karen

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