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I have been feeling poorly now for about 18 months. I went to the doctor in June 16 as was feeling more tired than I've felt before and generally run down during the previous winter. I've had lots of tests done and was diagnosed coeliac. I've been gluten free since Aug 16 and the doctors said I would feel much better. Well I don't and I'm feeling worse as each week goes by. I saw the GP again the other week and I have a large swollen lymph node in neck which is not tender. He mentioned cfs and I said that I didn't think I had it because the only criteria I meet is the exhaustion. I am seeing him again at the end of this month. Has anyone else been diagnosed with cfs and just suffering exhaustion? I don't have muscle pain or twitches, I do get an achy lower back. I don't get sore throats or lots of headaches. But I am suffering from daily exhaustion which is so out of character for me. I feel like I constantly have the flu. Some days are better than others but I haven't felt 'great' in nearly 2 years. The only other thing to mention is I have low lymphocytes on blood results. I feel so desperate to get my health and life back on track but feel like the docs aren't taking me seriously.

Kind regards


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10 Replies

  • Posted

    Hi Lauren. I only suffer from extreme fatigue, as well. I sometimes experience headaches and brain fog along with the fatgure, but I mostly suffer from exhaustion. My symptoms also vary from day to day and from hour to hour. Getting the proper amount of rest/sleep and pacing yourself are both helpful. Many people who suffer from CFS do not get the right kind of sleep or REM sleep, so for me, a trycyclic antideppresant helps with sleeping. Also, some people with CFS benefit from Vitamins D and B. Good luck! KPD
  • Posted

    Hi Lauren,

    The feeling like you constantly have flu is also a symptom of CFS/me. There tends to be a trigger. Can you remember anything like a virus, operation, trauma of some type before symptoms started? How is your sleep? Apart from feeling exhausted do you feel your sleep is OK ? Most people with their condition have sleep problems at some point from what I ''ve read on here.

    Re the gluten free, it can be such a pain finding suitable foods can't it! I'm wheat free and dairy free and it's a constant thing to be vigilant for when planning meals, especially when out. Wheat is in so many things you don't expect like crisps and manufacturers don't by law have to put that they've changed a recipe so I check tins and things of items I 've bought for years too.

    If it is CFS/me, resting and pacing really is the way forward. Don't push yourself as it is counter productive.

    If you think it is something else then keep pressing your doctor some other conditions have similar symptoms.


  • Posted


    Like a lot of people I only suffer from extreme fatigue and the dreadedain foUg, no great aches or.  I have never felt like this in my life, but do have good days. It is a very difficult illness to diagnose, so have a good chat to your doctor, get your vitamin B 12 checked. 

    Take care and as Beverely said to me, 'be gentle with yourself' and listen to your body.


  • Posted


    Thanks all for replying. I had vitamin b12 injections in August 16 due to the coeliac but again I didn't notice one bit of improvement from them. I mainly sleep well; last night I had 12 hours! The night before I had 10!

    I am managing the gluten free ok, although it is hard sometimes especially when out. But I'm still living in hope that will cure all my symptoms.

    I don't recall having a virus other than I literally had a cold each week winter 15.

    My life has changed so much; it takes everything I have to get through the working week and come evenings and weekends I am utterly exhausted. My performance at work is also suffering.

    I go back to the docs at the end of April and they'll refer me about the lymph node so maybe that will bring some answers. Do you have swollen nodes? This ones been swollen about 6 months and it's about 2-3 inches in my neck.


    Lauren x

  • Posted

    Lauren, I think you should look at cfs as more of a symptom than a diagnosis. I'm no expert, but I think the extreme exhaustion and fatigue is the symptom that makes this so tough...even if you don't have some of the other stuff. What have you tried to remedy this?

    • Posted

      Hi Joe

      Well I guess by default from the exhaustion I 'pace' myself. I used to be in a running club going 3 times a week which I can't do anymore. I used to socialise with my friends a lot too and now I'm lucky if I go out once a month now. I've had my long hair cut short to save energy on drying & styling it. I used to visit my family regularly too. These days I'm lucky if I see anyone at all at weekends. My work have been understanding and let me work from home 2-3 days per week but I'm not sure how long that will continue.

      I'm only 33 and have never been in this position before. I feel quite helpless and hopeless right now.

    • Posted

      Ofoh Lauren, how i feel for you, and can well understand the helpless feeling, but please, please try and ke ep the hope alive, that is what helped me, I always tried to believe i would get better, and slowly I did, wh imprven I say better, i mean improve, but that took a lot, I had to giv e up a job i loved, i literally stayed in forjust about three months, my exercise was to walk around my setttee a couple of times!!!   i am now able to do some voluntary work four morning a week, which is great.

      Please try and rest as much as possible, listen to music, watch a film, or listen to the radio, I really do wish you well and hope you will feel some  improvements,

      please keep us updated and take care, 


  • Posted

    Have you been tested for epstein barr virus/glandular fever? This is how my CFS started and I had swollen lymph nodes in my neck originally. Healthy diet, plenty of good quality rest and pacing yourself might help a bit.

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