The hunt for a diagnosis

Ok so up to now I have had several blood tests, MRI of lower back, Xray of left hip, and bone scan of whole body and it has all come back perfectly clear, so they are saying that I am perfectly healthy and there is not a thing wrong with me. Well thats funny because I spend everyday struggling with what I can and can't do, and sometimes just sit and cry as I feel there is nothing else I can do.

So I get a phone call off my doctors saying they want me to come in for an appointment and they say it is regarding my sick notes (I am in the process of claiming ESA had my medical and waiting on the results, but if my own doctor says I am perfectly healthy then I am nearly 100% sure I am not going to get it) anyway my doc has refused to give my any more notes as my results are all clear it means I am healthy.

So now I feel at a total loss I think I am going to just wash my hands of the current doctors surgery I don't think I can face going in to sit there and for her to tell me there is nothing wrong with me and that I just need to deal with the pain and get a job. The last time I went in to see her it was more like a job interview her asking what qualifications I had and telling me what kind of jobs I can apply for, I was so upset after the last visit that I have not been to see her again and so when I got the phone call saying I need to go and see her about my sick notes I decided that I can't take sitting there and her talking to me like I am a liar and patronising me as she did last time.

So now I am going to just draw a line under that and change doctors, I don't feel like I need to hear what she has to say any more as I already know she thinks I am making it up. So I am going to start researching doctors in my area and try and find one who may be understanding of what I am going through as I don't want to pick just anyone and then be spoken to as I was with my last doctor. Today I am also going to sit and start writing all my symptoms and when they are worse how they are affected by activity etc, and then compare this to the list of fibromyalgia symptoms, then when I find a good doctor I want to have a proper consultation and go through everything from day one, as I have been like this for 12months now.

Can doctors diagnose Fibro or does it have to be a rheumatologist? as I was told I would go back and see the rheumatologist after I had my last bone scan, but I just had a letter through saying all my results were clear. Yet when I last saw her face to face she said if nothing shows on the bone scan that the most likely diagnosis would be fibromyalgia. So I am a bit confused as to why I haven't been called in to see her again. I feel overwhelmed by it to be honest as I don't feel there is a way to get across how much pain I am in on a daily basis.

Sorry for rambling on, I just feel like I am at a total loss as to what to do next, although I have my plan of action in changing doctors, I am scared about having to start to whole process again with someone who might just tell me it is all in my head again. Any advice would be greatly appreciated!

xx

15 Replies

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  • Hi, this sucks, don't give up unfortunately lots of tests have to be done and things ruled out before diagnoses can be made, change your doctor and that'll probably change everything, my doc diagnosed me after many months of ruling everything out, blood test etc, just hang in there and don't give up, once you got diagnosed everything's changed and you get the help, meds you need, hope this helps, doctor receptionist knows me by first name now that's how often I went to docs

    Nicki xxxx

  • Hi

    You poor thing that's all you need on top of fibro, yes your doctor can

    diagnosis fibro but they are not gods just think they are and some still

    don't believe in fibro, you can ask to be sent to a rheumatoligest, not

    sure if that is the correct spelling, anyway your doctor can't refuse that

    As it is your right, but that takes a time to arrange if you are in a lot of

    Pain you can also ask her to send you to the pain specialist nurse

    Maybe she thinks that you don't need medication make an appointment

    Maybe you should change to another doctor in the practise it's not in your

    Head so take no notice of people who say it is let's hope they never get

    This allful thing, go and see her again see what she says and if she will

    Give you a diagnosis, ask her to send you to a specialist when that is all

    Under way, and if she has nothing to say maybe change your doctor at

    Least every thing else is under way and you will not have to wait even longer

    the trouble is over the years to come you will need a doctor you will listen

    To you and have some empthy other wise it will make you feel worse

    Hope it works out for you nothing is easy with fibro, try not to worry thing

    will work out for you there are thousands of people with fibro we can't all be

    Making it up silly people who think we are.

    Love Viv

  • Hi there, so sorry you are having such a rough time but before you do anything else my very humble advice would be to go to your regular gp and aisk hm to do the 18 point trigger test - if he declines then he either doesn't understand fibro or doesn't want to and then your course of action would be to find a gp who would do the trigger test. The results of the trigger test can give a pretty clear indicaition of fibro - often all blood works comeback clear but then just by the trigger test they can get a better idea aind this does not haive to be done by a rheumy but your gp may , having done the test decide to refer you on to one. I haive seen both and both ddthe trigger test and agreed that i had been suffering from fibro for years and years, it was such a relief to finally know as i thought ii wasi going quite mad.

    Hope this helps a little, and as i said, this is only my opinion, others may have far better advice, but what ever, i hope you manage to get a proper dx very soon so that something can be done to help you cope with all you are going through.

    muchly, dottii x

  • whoops meant to say that you can google fbro trigger points aind do a print off both so you know where they are aind perhaps to show your gp to substaniaite your request.

    muchly dottii x

  • Your GP needs a serious kick up the bum! As you say, change doctors, and then follow the advice here and ask for a rheumatology referral. If the first rheumatologist is no help (as mine wasn't), then ask the GP for a second opinion, and they are obliged to send you for one.

    I sympathise, as my boss seems to have the same philosophy as your doctor, and it sucks. But never give up - you know you're not healthy, and you owe it to yourself to find someone who can understand and help.

    Good luck, and gentle hugs,

    Sara xx

  • Hi there. I am lucky that I have a brilliant doctor who has exhausted every blood test and other tests going and is 100% sure I have fibro and is treating me accordingly. The Rheumatolagist I went to was useless so it really depends.

    You haven't filled in your profile and where you are so I am not sure if I know of anyone near you.

    Hugs xxxxx

  • Hi there,My G/P diagnosed me after exhausting every test under the sun! He is wonderful and very understanding etc, i have not seen our current Rhumatologist as apparently he doesn't think Fibromyalgia exists!!! My G/P thinks i am best being treated within the Practice and to this i agree Take Care and Good Luck, Hugs xxx

  • I think that the first one I went to had a similar attitude - once he knew that the steroid injection had done nothing, he fobbed me off with a diagnosis of 'arthralgia' (look it up - it means joint pain - no s***, Sherlock!) and didn't even test pressure points. The second chap I saw was far more thorough, and diagnosed fibro, provided the blood tests he ordered at the time were normal, which they were. Unfortunately, this condition is a diagnosis of exclusion, and some professionals don't have the patience to exclude everything else, or the belief that fibro is real.

    Sara xx

  • I found the Dr Myhill site, mentioned yesterday, very informative. I printed off the fatigue chart and took it to my doctors (grandson has CFS) which enabled my grandson to articulate more accurately his fatigue levels. Will print it of again and send it to our CAB rep with a view to sending it to DWP. Checkmit out. You may find itmhelpful too.

  • I've actually drawn up a chart (yes, I know, but one of my duties at work is documentation!) for this, including a comments box at the bottom for particular activities and pain levels, so that you can see if there's a link. I can't post it to the site, as I have no way of saving it to the correct format, but if anyone does want it, PM me your email address and I'll send it on. I won't keep your email address, either - I'm not a spammer! ;)

    Sara xx

  • I agree with the suggestion that you need to see a rheumatologist, they can diagnose you even if your GP won't and as they're a specialist their opinion may hold more weight when it comes to a possible ESA appeal...? I haven't applied for ESA yet but I didn't have to go for a medical for my last DLA review perhaps because I'd recently had quite a few hospital appointments and I'm assuming they wrote to the specialists I'd seen instead.

  • What qualifications does your doctor have to tell you what jobs to apply for? he should stick to what he's qualified to do and leave job diagnosis to the DWP! Cheeky so and so!

    Cheers, Midori

  • Thank you so much for all your replies. I have been meaning to update my profile, will get round to that soon, I always just get distracted reading the post then get too tired!ha

    I have been trying to find a doctor near me that will be a bit more understanding to my symptoms and hopefully won't think that I am making it all up in my head.

    I am definitely going to change doctors as my own has had me in tears a few times since I have had this problem, just because of the way she spoke to me and made me feel. I probably should have changed a while ago, but with the amount of pain I am in on a daily basis I just assumed they would find something wrong with me and then she would have to take me seriously, but now the test results are all clear it is like it has confirmed to her that I have been making it up all along. Even though I have been with the same doctors surgery since I was a baby and I have never really been there with any issues before and never done anything to make her think I would lie and make up this whole thing, so it doesn't make much sense really.

    Just finding this site has helped me a lot, as I went for months and months thinking that maybe it is all in my head if no one else believes me maybe it isn't real. So I would push myself to do things over and over again like going on a bike ride, painting my bedroom, cleaning the whole house etc etc and each time afterwards I was bed ridden for days afterwards sometimes it would take over a week to recover. And it was only after doing this time and time again that I finally decided it was not in my head and I have to find out what on earth is wrong with me, as this was just not normal. Then I find out about loads of other random symptoms that come with fibro that I thought nothing of like dizziness tiredness etc and started putting the pieces together, now I just need a doctor to investigate fully and want to help me get a diagnosis.

    I just want to know what is wrong with me so I can deal with it and get on with my life. I haven't been able to work since last october, and it has driven me crazy, so I have taught myself to crochet and now starting to make things and trying to sell them, I have to take it slow as get a lot of pain and swelling in my hands, but I get there in the end. So I am trying to do something and get on with my life, but just feel like I need to know what is wrong with me so I can move on and deal with it.

    Anyway thank you all so much for listening to me rant and for all your advice and kind words, I really appreciate it

    xxxx

  • Definitely change your Gp, but I would also contact the Rheumatologist that you saw previously and point out that as you have had confirmation that the bone scan results were clear could she confirm her previous comment that you have fibro. Alternatively request a follow up appointment with her and remind her of what she said, it could be that the results were just sent out routinely and you should have been called back to see her xx

  • i really do feel for you as i have been through similar. Fist thing i would do is ask for a referral to rheumatology in order for you to get a diagnosis. If your gp refuses i would definately change your doctor . I had a perfectly good job when i became really poorly and in excruitiating pain all over, in the end i was medically discharged and was on maximum painkillers and still in agony. I had a doctor down my surgery telling me it was better that i went back to work etc etc and like you feeling like you were sat in the job centre not a doctors surgery so i didnt see her again. Like you all my tests were coming back as normal and it was in rheumatolgy over 12 months later i got my diagnosis , i was in tears and at my wits end with it all . But i know how you must have been feeling , you know there is something wrong or you wouldnt be ill and in all this pain and some doctors make you feel like there is nothing wrong with you. I am fortunate enough now to have a brillianty gp and i think once you have that , thats half your battle. Through Rheumatolgy i was diagnosed and then referred to occupational health where i now see a Fibromyalgia specialist Nurse.

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