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Initial consultant appointment! What does it involve?

Posted , 7 users are following.

keely40239
keely40239

Hi. I've got my initial appointment with the consultant coming up regarding final diagnosis of CFS and possible Fibromyalgia. Can anyone tell me what happens at this initial appointment please?  

0 likes, 15 replies

15 Replies

  • JulieBadger
    JulieBadger keely40239

    Posted

    Nothing scary. I had to fill in a questionnaire before had. The consultation was about 40minutes. Taking someone with you helps. Tell them how long it's been going on for, what are your symptoms and then they straight away tell you if you have Cfs/ME. You need to tell them what medication you are on now and they will check if all the right blood test have been done.  That was it for me x
  • russ151
    russ151 keely40239

    Posted

    Hi I haven't even got that far yet can I ask how long you have been going through the process of diagnosis and which kind of consultant you are seeing what are your main symptoms?
  • guy72767
    guy72767 keely40239

    Posted

    Hi keely,

    I suggest writing down an agenda well in advance to present to the consultant so you have the best chance of representing yourself on the day, when you might be too unwell to articulate yourself.....

    • ann11007
      ann11007 guy72767

      Posted

      Yes I agree with guy. You need to try to give yourself the best chance possible by being very prepared. Write down everything including things that you might think are irrelevant including the smallest adjusments ofr changes you made, the way you live to the products or treatments you have used, what helps improves your lifestyle and what hasn't. For example they can ask about how you travel or a daily routine. Best to go through an online questionaire, I have seen quite a few before. I helps to give a clear picture of what is going. One problem can be that  you are so unwell that you can't remember the details they ask for or in which order events and symptoms have taken place. So it really is best to be as prepared and as crystal clear as possible. The whole experience of diagnosis can be so draining. Best luck
  • keely40239
    keely40239

    Posted

    Thank you all for the advice. I need to start writing this down then as I've been off of work since September and can't really remember timeline at the moment. Thanks all x
  • keely40239
    keely40239

    Posted

    Hi Russ I have had all the blood tests that the doctors suggested and ruled everything else out so CFS etc is what I'm left with. My appointment is 4 months after I've last been in work (by the time it happens). Symptoms have been headaches, chronic fatigue, muscle aches and poor concentration. I've also had some stomach problems the last couple of weeks.  Hope this helps
    • russ151
      russ151 keely40239

      Posted

      Ok thanks wish you all the best I am not sure what is causeing me to feel so I'll see another specialist tomoz I am going to right everything down today 
  • Fidd
    Fidd keely40239

    Posted

    Also, they can be very variable. There are some real problems at some of these centres, and it could be worth recording your consultations just in case you later realise that the information you are given is inaccurate and something worth complaining about.
    • ann11007
      ann11007 Fidd

      Posted

      Wouldn't recording aggravate the doctors? My doctors wouldn't even allow me to take notes for myself. This is especially important as most of us at best of times cannot remeber everything that has bben said. 
    • Fidd
      Fidd ann11007

      Posted

      You're allowed to make covert recordings of medical appointments (in the UK at least - I think in the US too).

      That lots of doctors try to restrict what record is made of how they do their job does not inspire confidence tbh.

    • ann11007
      ann11007 Fidd

      Posted

      I so much want to have faith in this profession, it's distressing that patients need to sometimes be that cautious on top of of being unwell.
    • Fidd
      Fidd ann11007

      Posted

      I understand. Personally, one of my biggest regrets from being ill was that I had faith those working in the NHS would treat CFS reasonably. It is not fair that we cannot do this.
  • pat62
    pat62 keely40239

    Posted

    What side of the pond are you guys, US or UK?

    I don't think I have ever been "diagnosed",    I have never been sent to a consultant or specialist. 

    The first Dr in the surgery partnership tried to convince me (and himself?) that it was depression.  

    The second Dr in the partnership,because I mentioned that some of how I was feeling was similar to my husband when he had ME a few years back,  after taking some simple blood tests she decided that was what it was.  She also started treatment for hypertension.  I started trying to research my symptons and asked loads of questions, particularly as I was getting side effects from the bp medication, annoyed her so much that at one time she ushered me out of the room, telling me that I didn't need her if I was going to be going on the internet to find out things.  

    The Third Dr changed my BP medication, but whenever I ask about something, just says "oh thats just the ME/Fibromyalgia".  With each one I have taken a comprehensive list of symptoms in with me, but they are not interested.  They have barely glanced at it.

    I did get to see a rhumatologist because my hands were painful and his verdict was that the pain could be due to Psoriatic Enthesopathy, 

    It would be good to know what you each have been tested for.   I think mine are only the usual iron deficiency, thyroild, etc.  I did manage to pursuade one to test vit D levels which where found to be low, and on taking supplements improved a lot painwise.  But he has since put me on a duiretic for the bp, and the leaflet with this says that I can't take vit D supplements.   I mentioned this to the Dr and his response was that Vit D does not make any difference.  I know it does, because it was not only the rib pain that went away, but other pain which I had not associated with it.  So unlikely to be just a placebo effect. 

    I have recovered a bit from where I was three years ago.  At that time I could hardly lift a cup of tea, even using two hands.  I was unable to do much at all, trying to do the washing up was a task done two itms at a time with rests in between.  

    Although I can now do more, I stil cant do anything for very long, and the pain side of things has got worse. I thought by trying to do more at a steady increasing rate, I was 

    gaining strength and energy levels,  but I seem to be stuck and still can only do a small percentage of what I used to. 

    Just realised that I have had a bit of a rant, apologies for that Keely.   Its the frustration form having Itried to do some Christmas shopping today, and ran out of energy very quickly.  Its no good trying to push on because the brain fog takes over. 

    It would be good to hear how others in the UK have found the system to work.  I don't seem to be able to get past the GP.

    • keely40239
      keely40239 pat62

      Posted

      Hi Pat from UK. I've had (according to the GP) blood tests for everything!! She then asked me to look up CFS and Fibromyalgia and make a note of what symptoms I'd had that relate. She used my answers to put in referral letter to the consultant at the hospital. 
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