Very ill with ME/CFS

Posted , 9 users are following.

Dear Team, I have suffered the above for some 15 years. My GP does not believe in ME. The illness started after 12 weeks of Flu which my doctor was not witness to. Every 6 months or so the symptoms would return, then 3 monthly until eventually the symptoms became constant. I have been housebound for 2 years except for hospital visits which were fruitless. I am on my own and at 65years hold no hope of a cure. I worked until I could not carry on any longer some 10 years ago. My GPs advice was to keep going. At the moment my treatment comprises prescription and over the counter painkillers. I sincerely wish I could go to bed and not wake up. This maybe a negative view, but this is not unreasonable, considering the severity of my illness. Thank you. BJ

0 likes, 9 replies

9 Replies

  • Posted

    Bruce - 2 things come to my mind. the first is that I am so sorry that you are suffering so much and have been for so long. sad Unfortunately the longer you have had this, the less likelihood of a proper recovery so you are probably right that this will be with you for the rest of your life. However I urge you to find a doctor who will be understanding and supportive and who can help you. They are out there and there are more than you realise. I also have a list of services for people with ME in England if you would like to post which area of the country, or which county, you are in.

    The second thing I want to say to you is welcome to our forum. :D We are a diverse group of people who all have CFS/ME in common and we have become good friends. We share our problems, both physical and emotional but we don't just talk about our illness, we have a broad spectrum of topics including family, friends, work - for those who can, and sometimes sheer nonsense to break the monotony as you will see if you decide to stay with us.

    I hope you do. we cannot offer you a cure, or even a way out but we can offer you support, advice and a feeling of not being alone.

    Please call in again Bruce.

  • Posted

    Hi Bruce,

    I'm Dale and I can only re-iterate what Alicia says. There is no cure it is something you have to learn to live with. Ignore the GP who has told you to keep going, you cannot fight ME as it always wins :cry: This is not negativety, it is fact. You need to rest when you are tired and learn to pace yourself. You only have so much energy and you have to learn to live within those limits. Once that energy has gone you cannot do anything. Like when a car runs out of fuel. You then have to rest to build up those energy levels again. (Topping up the tank) The trick is to know how much you can do before the tank runs out. Sounds easy, but all of us on this forum have exceeded our limits more than once! :cry:

    It might be worth going on anti-depressants as this will help you get a better quality of sleep and lift your mood. Most of us are on them I think :roll: Some also have a painkiller effect.

    Good Luck

    Dale xxx

  • Posted

    hi bruce

    im sorry you're having a bad time. i would definitely suggest getting a new doctor. you are more than entitled to one, and its just unacceptable for a doctor to say they dont believe in ME/CFS when it is an accepted medical condition.

    good luck and i hope you stick around :D

    Trees x

  • Posted

    Hello Bruce :D

    I'm so sorry that you've had such a rough time and I completely agree with what everyone else has said.

    I wonder if there's another doctor at your practice who is living in the \"real world\"(ie knows that ME is a REAL illness)? If not, there are lots around.....

    It does sound as if you need support, and perhaps, as has already been suggested, a low dose of an anti-depressant may lift your mood and help to control some of the ME symptoms (which are enough to get anyone down). A good doctor can be the gateway to all this.

    This forum is brilliant - [i:7fd87fe84b]so[/i:7fd87fe84b] supportive, so do keep in touch....

    Take care

  • Posted

    Bruce , I am so sorry that you have had such a rough time with your illness, made all the worse by complete lack of understanding from your GP :evil:

    It just makes us all so angry when we hear that there are still medics out here who dismiss CFS/ME ...... please do as my friends have quite rightly suggested and see if you can find an understanding one who will advise and give you the help and support you so badly need.

    As the others have also said, do stay with us and drop in when you feel well enough. This forum has done wonders in so many different ways for us, least of all, keeping us sane.

    Do take care, and hope to hear again from you soon.

  • Posted

    I just feel so sad that Bruce has been struggling on along for 15 years. I had 4 years before I got any help and support and that was tough enough.

    I do hope you will allow us to support you now, Bruce.

  • Posted

    Hi Bruce,

    I am a good example of ME. I am back at work full-time after 6 months of this illness. Don't get me wrong, I still have blips :roll:

    We hear so much on this forum about GP's who don't understand. Find a GP who understands, you deserve better. :D

    Please keep in touch smile

  • Posted

    Hi Bruce I feel so sad for you to have been trying to cope for so long without any medical backing. You need to change doctors. As the others have said many of us are on anti depresants they help with pain, sleep and they also give us a slight lift which is useful. Please continue to come along for a chat. we love different people to join us. We all are a bit silly at times but at times I think it is the only thing that keeps us all going. :D
  • Posted

    Hi Bruce, Sorry i'm late, but like the others have said, you really a doctor who understands this illness and who won't tell you to run yourself to the ground.

    I will admit, my gp was a little like yours at first but then he helped me out to understand this illness more with putting me on 3 different anti-depressant drugs, all of which reacted badly with me but he has now refered me to a specialist, just got to wait to hear more.

    Also Bruce, like in your last few words, the main thing i have learnt is NEVER give up on this, keep possitive thoughts that this illnes will some day give up enough to be near normal (well hopefully), this will help you feel better in the long run.

    Good luck and keep in touch.

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