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Referral to Physician, what to expect.

Posted , 8 users are following.

dlp12
dlp12

I found this support group last night (insomnia) and it really was a lightbulb moment. All of my symptoms appear here.

Having been back and forward to the Drs for nearly three years I went again this morning armed with the new knowledge of ME/CFS

Looking through my notes of clear blood tests and symptoms my GP has agreed to refer me to a physician. 

I wondered if anyone could help me with what will happen next, could I be getting closer to a diagnosis and what to expect? 

 

0 likes, 11 replies

11 Replies

  • pam_87693
    pam_87693 dlp12

    Posted

    Look up POTS UK
    • pixie22
      pixie22 pam_87693

      Posted

      Hi Pam. What is POTS? I haven't heard of it before. Is it related to ME/CFS?
    • pixie22
      pixie22 Sassylass

      Posted

      Hi Sassylass! I've now done an internet search on POTS, and it does seem to cover one of the possible ME/CFS symptoms, low blood pressure, but otherwise I think it is a separate condition. It certainly doesn't fit with the symptoms I've had.
    • Sassylass
      Sassylass pixie22

      Posted

      Hi pixie!

      I haven't seen any posts from you other than your response to the POTS issue, regarding your symptoms, but I figure since you are looking into CFS/ME that you have some of the many problems that go along with these ilnesses. I am no expert but would be happy to share what I know. But it would simplify things to know first if you have had any history of viral illness, what, if any blood tests you have had done regarding current problems, and what your symptoms are and how long you've had them. If you don't want to put that info here you can click the envelope to the right of my name sassylass above to make it private, or, I can just tell you what I've learned on my own journey.

  • sally_14743
    sally_14743 dlp12

    Posted

    Ok

    best thing that happened was being referred to m.e. Specialist ...they ask you to submit your medical history when u first started feeling ill how it worsened etc what your circumstances were etc..you send this in before your appt.. When u go for appt the specialist has read all this asks you lots of questions and then diagnosis you.. Explaining what cfs/ m.e is the scenarios the typicals etc... Then offers treatment to alieviate symptoms and  offered occupational therapist to visit you at home regularly and taper a recovery plan to pace yourself back to recovery...

    so diagnosis is a great relief ...then meds to help with symptoms ..but the best part was the occupational therapy...really helping ..the specialist said you will recover ..the occupational therapist said can't guarantee everyone recovers but most do..and learning to pace yourself gives your body the opportunity to recover.... They don't know why but if you learn to pace and gradually improve at some point your body just reboots almost ...and your symptoms disappear as miraculously as they appeared .... So my advice go for it ..

  • Fidd
    Fidd dlp12

    Posted

    Things are really variable. Very little is known about ME/CFS and it's likely that patients suffer from a range of different conditions. Unfortunately there are incentives within medicine for professionals to pretend that they know more than they do, and so lots of patients report bad experiences with ME/CFS 'experts'. Some people get some helpful advice. I would advice being cautious about things and remembering that at the moment you should only do things because you find them helpful, not because someone else tells you it's good to do them. Good luck.
    • pam_87693
      pam_87693 Fidd

      Posted

      Yes it is, they hate to admit they don't know, the only one who had the good grace to say he didn't has left the NHS as he doesn't need to work for the NHS he objected to NICE clinical guidelines. He works privately of course, when I get the automatic tests I will write to him and tell him. And I have done this through my own research!
    • IngeniumSingula
      IngeniumSingula pam_87693

      Posted

      Hi Pam, could you message me with the name of that person?

      I'm restricted in what I can do for patients and how often I can see them on NHS, so I work privately to offer that service.  Many very disabled and elderly can really benefit from physio.  I personnally don't have a problem is saying that I cannot answer a patient's question or that what they are asking is beyond my scope of practice or expertise.  That's honesty and good practice.  I think i'm in the minority though!  

    • pam_87693
      pam_87693 IngeniumSingula

      Posted

      Hi do you mean the consultant who admitted he didn't know, he is clever enough with patients in high places to not be worried to tell his patients that. He has left the NHS, he has of course a private practice, he refused to follow NICE and objectived to the NHS plans to move his specialty from mid Sussex to Btighton which has no parking
  • barb33577
    barb33577 dlp12

    Posted

    Hi, my son was diagnosed with POTS.  Postural Orthostatic Tachicardia Syndrome at Mayo Clinic over 10 years ago.  It is the inability for your blood pressure to react normally when you get up or change positions.  It looks normal when taken, but if you take it lying down and then stand up, it doesn't correct itself normally.  It took us dozens of doctors to find this out, and then he was actually diagnosed again with HOTS, Hypo Orthostatic Tachycardia Syndrome, which means his blood pressure overcompensates, I think.  It makes you tired all of the time, also dizzy, nauseous, etc.  He tried blood pressure pills, didn't work.  He tried salt pills, didn't work.  He was told to exercise his core and eat healthy, not much works, but he is finishing his Masters right now, so it's livable.
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