Discussion in 'Fibromyalgia Main Forum' started by shaz73, Mar 16, 2011.

  1. shaz73

    shaz73 New Member

    I posted here in last few weeks about talking to my new(ish) doctor about my fatigue issues. Well, had long appointment about it yesterday and finally have a doctor who thinks CFS actually exists and that I have it. Now, obviously this doesnt change the way I feel, but it DOES mean there is a condition that I can tell people I have and hopefully stop the jobcentre trying to get me to work up to 30 HOURS a week!

    This journey has been going on since I was nineteen and had Glandular Fever. I'm now nearly 38 and its taken this long to get to the bottom of - crazy....

  2. Mikie

    Mikie Moderator

    No, it doesn't change how we feel physically but finally getting diagnosed, and getting an understandng doc, changes how we feel emotionally. It validates for the world what we knew all along. We have an illness which can limit what we can do.

    You can't treat what the docs won't recognize exists. Now, you have the medical diagnosis so you can ask for the help you need. Nothing works for everyone but there are things which help with our illness. Personally, I think getting a diagnosis is a big deal. None of us wants to have this illness but when we do have it, it needs to be acknowledged.

    Love, Mikie
  3. mbofov

    mbofov Active Member

    I'm really glad that you finally got a diagnosis! As Mikie said, it's extremely validating to have confirmed what you've known for the past 19 years - that something really is wrong. I really don't have words to describe the almost complete failure of the medical community to address CFS. Most doctors still don't believe CFS is real. It never should have taken 19 years to get diagnosed, but I believe that is the legacy of the CDC's neglect for the past 26 years.

    Just finding a doctor who believes CFS is real, even if he or she doesn't know what to do, is a big step, and if your doctor is knowledgable, that's even better.

    If you are like most of us here, you will find it helpful to do a lot of your own research, and then run it by your doctor.

    There is an excellent video of a presentation by Dr. Montoya of Stanford about CFS which is really worth watching, if you can manage it. It's over an hour, but really worth sitting through it. He stresses over and over that CFS is a very real and extremely debilitating illness. It is so encouraging to have someone like him in our corner! JAM338 posted this link of the video with Dr. Montoya the other day:

    Best wishes,

  4. shaz73

    shaz73 New Member

    for your response.
    "Just finding a doctor who believes CFS is real, even if he or she doesn't know what to do, is a big step, and if your doctor is knowledgable, that's even better." Yes, it IS a big step and how stupid is it that you have to be lucky enough to find a believer in order to get a diagnosis! Its like a doctor not believing in cancer...just incredibly stupid. Turns out my doctor studied under the leading Consultant in CFS in my area of Britain.

    "If you are like most of us here, you will find it helpful to do a lot of your own research, and then run it by your doctor. " Already have done lots of research over the years, so much so that I feel like a graduate student in it....if only that was funny! The research continues....

  5. tansy

    tansy New Member

    Hi Shaz. It's always good to know what's causing our symptoms and understanding them, it enables us to make informed choices. The climate in the UK makes accessing any Tx, other than CBT and GET, difficult though so my advice would be to do your research and look at what you can do for yourself.

    There are doctors in the UK who do not believe CBT and GET are the answer for ME and CFS, but most practice privately since Health Trusts will often only fund recommendations in the NICE Guidelines. As a result patients in the UK who cannot afford personally financed medicine often opt for DIY and are following various protocols or using trial and error to see what works for them.

    Unfortunately your Dx may not help with regard to the Job Centre but the CAB might be able to give you worthwhile advice, another good resource is Benefits and Work at
    There is an annunal fee but many report it being worth the cost.

    ESA is causing a lot of problems especially for those who are not able to do any work at all or can only manage a few hours. The Govt admit there are serious problems with assessments but so far have done little to change things since they are hellbent on reducing the numbers receiving sickness and disability allowances regardless of the human cost.

    Yes it's crazy in the UK, we're trying to redress the balance but it's difficult because those pulling the strings have been less than honest. If you are not fully aware of what's going on, or why, this paper is a good starting point.

  6. Granniluvsu

    Granniluvsu Well-Known Member

    Believe me I understand what you have been going through. I was finally dxed about 4 or so years ago after having FM and some CFS for over 25 years. At least you feel good to know you haven't really been batty all these years. Yes, it is very frustrating and I did alot of investigating like you have been doing too.

    I almost dxed myself with everything I brought into my Rheumy, labwork and such. Actually I went in for my yearly visit today and got some more scripts for meds.

    Glad you finally got that diagnoses. I know I felt much better after I got mine - too long in coming I woud say, even if it didnt cure anything.

    Hugz to all,
  7. shaz73

    shaz73 New Member

    for your messages.

    Tansy - yes I have been reading some terrible reports about the new testing for people on what was incapacity benefit. People with terminal cancer have been passed as able to work!!! MADNESS... Actually I was on incapacity benefit myself a couple of years ago for five years (depression, anxiety and fatigue - not chronic "apparently" (yeah, right...). During that time they took my money away and I had to wait 6 MONTHS to get it back on appeal. Luckily, I have been able to work, albeit very part time for a couple of years now, so the issue is not disability benefits at this point. My last job ended last september and was getting JSA until my husband got a full time permanent job in January this year. I now only get National Insurance Contributions paid. Jobcentre have agreed to me not working more than 30 hours a week, but that is way too much really for me.

    Granni - what a shame it has taken us both soooooo long to get a diagnosis, but finally we do have that!